smiles improve life in residential carejointly developing this training package and are working...

For all who work with people with dementia Vol 1 No 1 June/July 2012

Also insidethis issue:

� Environmental design in the heart of Australia� The harsh reality of pain � Understanding neighbourhoods

SMILEs improve life in residential care

01AJDCJJ12cover_Layout 1 02/05/2012 09:56

A message fromthe minister

It gives me great pleasure to contribute to theinaugural edition of the Australian Journal ofDementia Care. I understand this is the sister

publication to the Journal of Dementia Care that has beenpublished in the United Kingdom for the last 19 years.I commend the New South Wales and Australian

Capital Territory Dementia Training Study Centre forlaunching this journal. Dementia is one of the two emerging epidemics in

Australia – the other being diabetes. Currently, thereare almost 300,000 Australians living with dementia.Without a significant medical breakthrough, thisnumber will double every 20 years. There have been giant strides taken in recent times in

talking publicly about a condition that for too long wasinvisible. We recognise now that dementia is not simplya natural part of ageing. Research is crucial if we are to reduce the number of people withdementia and ensure that people living with dementia have a better quality of life. This is why the Australian Government will provide $268.4 million over five years to

tackle dementia, as part of the $3.7 billion Living Longer, Living Better aged care reformpackage announced on 20 April 2012.

Funding will be available to support GPs to make a more timely diagnosis ofdementia, expand the scope of the Dementia Behaviour Management Advisory Services,improve the care of people with dementia in hospitals, and to enable younger peoplewith dementia to access better coordinated care and support. In addition the packagewill provide funding for a new Dementia Supplement for eligible Home Care packagerecipients and funding to improve the quality of care in aged care homes for residentswho have severe behavioural and psychosocial symptoms of dementia. In recognition of the importance of having a health and aged care system that

responds to emerging challenges such as the increase in the number of people withdementia the Government will recommend to Health Ministers that dementia berecognised as the ninth National Health Priority Area, to focus attention on dementia atnational, local and state and territory level.Publications such as the Australian Journal of Dementia Care help us effectively share

information on developments in the care of people with dementia. This publication willplay an important role in the dissemination of research findings and will assist intranslating research into practice.I have seen clearly the benefits of promptly translating research outcomes into better

clinical practice. For example, pain management research carried out by the AustralianGovernment-funded Dementia Collaborative Research Centres, will inform thedevelopment of a new training package for staff in aged care facilities, assisting them tobetter identify and manage pain in people with dementia. The NSW DementiaCollaborative Research Centre and the Victorian Dementia Training Study Centre arejointly developing this training package and are working closely with aged care facilitiesto help them more effectively manage behavioural and psychological symptoms ofdementia, which may be associated with untreated pain.The good work being undertaken by these Study Centres, for example, includes the

development of evidence-based competencies for registered nurses engaged in the careof people with dementia. This New South Wales Dementia Training Study Centre projectwill establish a competency framework that will inform the education, recruitment andthe clinical practice of registered nurses providing specialist care for people withdementia. The project is due to be completed later this year.It is important that we continue and further improve the good work being undertaken

to ensure people living with dementia and their family and carers receive the best carepossible. I am confident that this publication will make a significant contribution toensuring the dissemination of information to a range of health care practitioners.Mark Butler MPMinister for Mental Health and Ageing

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Vol 1 No 1 June/July 2012 Australian Journal of Dementia Care 3

C O N T E N T S

� Design

Designing for dementia: key design principles in Indigenous settings 18Architect Kirsty Bennett discusses the application of design principles to a long-term residential care facility for older Indigenous people with dementia

� Humour Therapy

How to raise a SMILE: the Sydney Multi-site Intervention of LaughterBosses and Elder Clowns 22Dr Peter Spitzer, aka Dr Fruit-loop, explains the work of Elder Clowns andLaughter Bosses in dementia care, while Dr Lee-Fay Low shares some of theearly findings from the world’s largest study into the effects of humour therapy onpeople with dementia

� Pain Management

Pushing past the pain barrier 26Kathy Stone reports on new training modules designed to improve identification,assessment and treatment of chronic pain in people with dementia

� Mealtimes

Appetite for life: what can help improve the mealtime experience? 28Lynn Malloy describes her review of studies on the mealtime experience forpeople with dementia in formal care settings. She focuses especially on what canhelp mealtimes to provide ‘food for the soul’ as much as they provide fuel for thebody, and the importance of guidance and emotional support for care staff

� Research

What does ‘neighbourhood’ mean forcarers of people with dementia? 33Richard Ward, Andrew Clark and Matthew Hargreaves outline the findings of astudy that looked at how carers of people with dementia relate to theirneighbourhood, and the implications for improving local support

� Network

Introducing our Advisory Board members 4

One step at a time 8The Walk Around Australia program has motivatedlong-term care residents with dementia to trek thetotal distance of Australia’s coastline – over 20 000kilometres – in a 16-month collaborative effort. ByJames Baldwin

What a difference a day makes 10Alzheimer’s Australia has long championed thecause of people with dementia and their carers. Inthis article Glenn Rees celebrates the impact of theFight Dementia Campaign on the government andwelcomes the release of the ‘Living longer, livingbetter’ reform package

Removing the walls of fear 13This is the first of a series on communication andrelationships specially written for AJDC by well-known author, John Killick. They are based onJohn’s experiences of talking with and workingalongside people with dementia over two decadesin the UK and abroad, including Australia. The viewsare John’s own and some of them may beconsidered controversial.

Trial iPhone app helps to extendenvironmental design consultancy 14Richard Fleming writes about an innovativeapproach to design consultation for aged carefacilities: an iPhone App based around the principlesof the Environmental Audit Tool (EAT) which aims tomake designing for dementia more accessible

How ventriloquism is helpingpeople to speak for themselves 16James Baldwin writes about the Melbourne-basedBaptcare Strathalan initiative, the Ventriloquist Dollsin Music Therapy Program, which brings accessible,interactive comedy to people with dementia

� News 6

� Books 32

� Resources/Events 32

� Research reports 37

Insidethis issue...For all who work with people with dementia Vol 1 No 1 June/July 2012

News • Care practice • Research • Clinical UpdatesResources • Training • Technology

Subscribe now and save $33!Turn to the back page to see details

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03AJDCJJ12contents_Layout 1 02/05/2012 10:19

4 Australian Journal of Dementia Care June/July 2012 Vol 1 No 1

A D V I S O R Y B O A R D

The AJDC is proud to have thesupport of 12 eminent people from awide variety of areas in the dementiacare field, including research, policy,advocacy and service delivery. Eachhas accepted a two-yearappointment to the Advisory Board,which will guide the strategic directionof the AJDC. We will introduce themover the first four issues.

Professor Rhonda Nay

Professor Rhonda Nay has beeninvolved in the teaching,research and practice of agedcare for over 30 years. She is theDirector of TIME for Dementia,the Victorian and TasmanianDementia Training Study Centre,and also serves the AustralianCentre for Evidence Based AgedCare. She is FoundationProfessor of InterdisciplinaryAged Care, Director of theInstitute for Social Participation,and of the Australian Institutefor Primary Care and Ageing atLa Trobe University. Rhonda has chaired the

Minister’s Awards forExcellence in Aged Care, andhas been a judge for the ACSAAAwards. She has been a Directoron the Aged Care Standards andAccreditation Agency Boardsince 2002. In her academic role,Rhonda has led numerousresearch projects related to agedcare and has supervised over 20doctoral students from nursing,medicine, sociology, educationand business.Rhonda has been a member of

numerous government andprofessional committeesincluding the CommonwealthAged Care WorkforceCommittee, the AHCAReference Group on Continuumof Care, the National AdvisoryCommittee on Ageing and was

an Expert Advisor to theInternational Council of Nurses.Rhonda’s passion is person-centred care for older people,especially those living withdementia. Her research focuseson getting evidence-based,interdisciplinary, relevantfindings on staff–familyrelationships, person-centredcare, pain assessment andmanagement into practice.

Glenn Rees

Glenn Rees has been CEO ofAlzheimer’s Australia since2000, during which timedementia has been made aNational Health Priority. He isan active member of theNational Aged Care Allianceand has been a member of manyministerial and official advisorycommittees on aged care.Glenn has worked at senior

levels in the British andAustralian public services. InBritain he worked as PrivateSecretary to senior ministers andin the Cabinet Office. InAustralia since 1976, he hasworked in program and policyareas including Prime Ministerand Cabinet, Employment andTraining, Aged Care, Disabilities,Housing and the Aboriginal andTorres Strait IslanderCommission. He was Chair ofthe Nursing Homes and HostelsReview in 1986 and wasinvolved in implementing thefirst wave of aged care reforms.His passion is to ensure that

policy and service developmentis driven by consumers and issensitive to the needs of diversecommunities. Recently his focushas been the establishment ofthe Consumer DementiaResearch Network and the

National Quality Dementia CareInitiative. This approach seeks toempower consumers to identifyconcerns in dementia care, tomatch these concerns to theevidence base and then to fundnational knowledge translationprojects to achieve change.

Sue Pieters-Hawke

The daughter of Hazel Hawkeand former Prime Minister BobHawke, Sue Pieters-Hawke is atireless advocate for people withdementia. Sue has a lifetime ofinvolvement in social changeand personal developmenttechnologies. She co-chairs thefederal Minister’s DementiaAdvisory Group, an expert bodyadvising the federal Minister forMental Health and Ageing,Mark Butler, on dementia in thecontext of significant proposedaged care reform. Sue wasappointed the inauguralNational Ambassador forAlzheimer’s Australia, andcampaigns extensivelythroughout Australia forincreasing understanding,changing attitudes, andsupporting funding and servicesfor people living with dementiaand their families and carers. Sue has enjoyed a diverse

career – she’s studied law,history, complementary healthand preventive medicine, yoga,qigong and Tibetan Buddhism;been an activist for progressivesocial issues, an artists’ modeland rock’n’roll barmaid. Whileraising her two children, sheworked part-time as a PRadvisor, fundraiser and smallbusiness manager, andestablished a clinic and schoolwith two Chinese qigongmasters. She managed Hazel

Hawke’s office from 1995 until2008, and cared for her duringher illness with dementia.

Professor Henry Brodaty

Professor Henry Brodaty hasserved on several New SouthWales and commonwealthcommittees related to ageingand dementia. He has been amember of the reference groupfor the NSW Action Plan forDementia since its inception andserves on the CommonwealthDementia Task Force for theMinister for Ageing. He is thepast chairman of Alzheimer’sDisease International, repre -senting 75 national Alzheimer’sAssociations, and is past pres -ident of Alzheimer’s Australia.He has served in various

Australian commonwealth andstate committees, advising onservices for older people ingeneral and for dementia inparticular. Professor Brodaty hasbeen co-chairman for the NSWTask Force on the Mental Healthof Older People (1997). He is theauthor of over 200 scientificpapers, has served on theeditorial boards of 10 scientificjournals, and has won numerousawards, including the NewZealand College of Psychiatry’sSenior Organon ResearchAward in 2003.Professor Brodaty’s research

interests include the effects ofdementia on family carers andon how best to help them; trialsof new drugs for Alzheimer’sdisease; the causes andmanagement of behavioural andpsychiatric complications ofdementia; the role of nursinghomes, and late-life depression,suicide and self-destructivebehaviour among older people.

Introducing our Advisory Board members

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C O M M E N T

The discussion of research findings and their application topractice is very limited in Australia. There has been noreadable and lively publication that reports on current

research, showcases good practice and attracts the attention of awide range of professionals. This is not the case in the UK wherethe Journal of Dementia Care, guided from the start by key thinkers such as TomKitwood, has for 17 years provided a means of sharing research, practice and viewsbetween a very wide range of people engaged in the care of people with dementia.While the idea of establishing an Australian JDC was first raised by Vicky

Traynor, Associate Professor in the School of Nursing at the University ofWollongong, back in 2009, the opportunity to do it had to wait until re-focussingof the Dementia Training Study Centres. Five of these centres have beenestablished by the Department of Health and Ageing and in 2010 a new strategicplan resulted in them being given three National Priority Areas each. The priorityarea most relevant here is Knowledge Transfer, assigned to the NSW DementiaTraining Study Centre based in the University of Wollongong.The transfer of knowledge from its generator and its user has been described

as following four stages: awareness, agreement, adoption and adherence (Daviset al 2003). This simple model highlights the fact that the adoption of new, andbetter, ways of doing things depends on the awareness of the potential user andhis/her agreement with the new approach. If there is no channel ofcommunication providing the potential user with the opportunity to becomeaware of the new information, and to decide whether or not they agree with it,then there will be no change. The NSW/ACT Dementia Training Study Centre is working with the publishers

of the UK Journal of Dementia Care to establish this channel of communication bylaunching the Australian Journal of Dementia Care (AJDC). The AJDCwill contain abalance of home-grown articles and UK articles of relevance to Australians. AnAdvisory Board comprising the people driving the transfer of knowledge throughthe Dementia Training Study Centres, the generators of knowledge in the DementiaCollaborative Research Centres and champions of better care for people withdementia, has been established to guide its activities. The success of the AJDCwillbe determined by the ability of its advisors, editors and writers to attract andengage a large body of practitioners in the consideration of new approaches. I hopethat you will join us in this endeavour by reading and thinking about this issue,discussing it with your colleagues, telling us what you think about it and providingus with ideas for the next issue. You can contact us at [email protected]. �Davis D et al (2003) The case for knowledge translation: shortening the journey from evidence toeffect. BMJ 327 33-35.

Welcome to AJDCBy Professor Richard Fleming, University ofWollongong, Executive Editor

Executive Editor Professor Richard Fleming

Contributing Editor James Baldwin

Managing Editor Doreen Waddington

Consultant Editor Tom White

UK Editor Catherine Ross

Production Editor Andrew Chapman

Designer Rob Wheele

Publisher Dr Richard Hawkins

The Australian Journal of Dementia Care ispublished six times a year by HawkerPublications, 2nd Floor, Culvert House,Culvert Road, London SW11 5DH.Tel: 020 7720 2108 (editorial ext 206;advertising ext 203). Fax: 020 7498 3023Printed by The SOS Print + Media Group(Aust) Pty Ltd, Alexandria NSW 2015.© Hawker Publications 2012ISSN 2049-6893

SubscriptionsSubscriptions are $88 per annum (see back page for an introductory offer)from DCA, 03 8317 8163,[email protected]

Australian Journal of Dementia CareAdvisory BoardProfessor Henry Brodaty AO, Director,Academic Department for Old Age Psychiatry,Prince of Wales Hospital and DementiaCollaborative Research Centre, UNSWSue Pieters-Hawke, Co-Chair FederalMinisters Dementia Advisory Group,Inaugural National Ambassador forAlzheimer’s Australia. Founder and PrincipalConsultant, Sue Pieters-Hawke ResourcesGlenn Rees, Chief Executive Officer,Alzheimer’s Australia NationalProfessor Rhonda Nay, Director, Institute forSocial Participation and Australian Institutefor Primary Care and Ageing (AIPCA) andVic/Tas Dementia Training Study Centre, LaTrobe UniversityProfessor Barbara Horner, Director, Centrefor Research on Ageing and Curtin HealthInnovation Research Institute and WADementia Training Study Centre, CurtinUniversityProfessor Helen Edwards, Head of School ofNursing, Director, Queensland DementiaTraining Study Centre, QueenslandUniversity of TechnologyMarie Alford, General Manager atAlzheimer’s Australia SA, Director, SA & NTDementia Training Study CentreDr Penny Flett, Chief Executive Officer,Brightwater Care GroupKate Hawkins, State Manager, QueenslandDementia Behaviour Management AdvisoryServiceTara Quirke, Member of the Alzheimer’sAustralia Consumer Dementia ResearchNetworkMarily Cintra, Executive Officer, Health andArts Research Centre, Inc., Canberra.Margaret Ryan, Head of Dementia ServicesGroup Development, Bupa Care Services,Australia

Writing for AJDC: Do you have aproject or survey to report, or a changein practice organisation or structurewhich has worked well (or not), andwould you like to share this experiencewith others? We welcomecontributions of this kind, as well asbright ideas for improving theenvironment or well-being of peoplewith dementia, and letters to the editorresponding to articles in AJDC.Contact Richard Fleming [email protected]

The Australian Journal of DementiaCare is a multidisciplinary journal for allprofessional staff working with people withdementia, in hospitals, nursing and agedcare homes, day units and the community.The journal is committed to improving thequality of care provided for people withdementia, by keeping readers abreast ofnews and views, research, developments,practice and training issues. The AustralianJournal of Dementia Care is groundedfirmly in practice and provides a lively forumfor ideas and opinions.

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N E W S


Global awards ceremony to be in AustraliaAustralia is to host the International Dementia Excellence Awardsfor the first time, as part of the Risky Business conference inSydney in June. The international judging panel includesAustralian dementia advocate Sue Pieters-Hawke and CEO ofAlzheimer’s Australia, Glenn Rees. This year there will be threeAustralia-specific awards: Team of the Year, Employee of the Yearand Volunteer of the Year. Previous award winners includeHammondCare and the Royal Hobart Hospital. Professor JuneAndrews, Director of the Dementia Services Development Centre(DSDC) at the University of Stirling in Scotland, will be one of theinternational judges. Speaking about the awards, ProfessorAndrews stated: “We often hear about the growing challenge ofdementia for both the developed and developing world; weshould not forget the outstanding work already occurring to meetthis challenge. It is vital that we raise awareness regardinginnovation and good practice in dementia care, as well ashighlighting those who, through passion and commitment, makea real difference in the lives of those living with dementia”.

Raising undergraduates’ awareness More than 1,500 undergraduate students across schools ofNursing, Nutrition, Psychology, Medicine, Occupational Therapy,Physiotherapy and Exercise Physiology at three universities –Wollongong, Canberra and Tasmania – are being invited toparticipate in the NSW/ACT Dementia Training Study Centre EssayCompetition, now in its third year. The Essay Competition is the firstof three stages in a project designed to provide opportunities forundergraduate students to ‘bump into’ dementia during their 2nd,3rd and 4th years of study. The 3rd year opportunity involvesplacements with aged care providers and the 4th year provides theopportunity of honours scholarships. The 2011 essay prizes were$300 gift vouchers, which were awarded to 16 students in schoolsof medicine, nursing, nutrition, physiotherapy and pharmacy. The2012 essay prizes will be $500 each and work has alreadycommenced on involving more universities in the project.

NHMRC Partnership Centrejoins fight on dementia

News in brief

Researchers, policy makersand healthcare workers willjointly establish Australia’sfirst Partnership Centre forbetter dementia and agedhealth outcomes, with thepotential for $25 million infunding to be allocated overfive years. The PartnershipCentre’s research activities willbe headed by an investigationteam from Sydney, who wonthe contract in March of thisyear.

The National Health andMedical Research Centre(NHMRC) is funding sixpartnership centres eachfocused on a different healthissue. The first PartnershipCentre, entitled ‘Dealing withCognitive and RelatedFunctional Decline in theElderly’, will focus extensively,but not exclusively, ondementia. The funding is beingprovided by the NHMRC,Alzheimer’s Australia,Brightwater Care Group,HammondCare and HelpingHand Aged Care.

The Minister for MentalHealth and Aging, the HonMark Butler MP, affirmed thatdementia is one of the fastestgrowing sources of disability

for older people, and the thirdleading cause of death afterheart disease and stroke. Hestated: “To improve clinicalinterventions, social care andcommunity support fordementia and relatedfunctional decline, we need tosupport better collaborationbetween those working in thehealth system and researchers.This is exactly what the newPartnership Centre will do.

With a heavy emphasis onknowledge translationprojects, the primary strengthof the Partnership Centre willbe the active collaborationbetween researchers,community care practitioners,consumers and health carestaff. A significant part of thePartnership Centre team’swork will be developing policyand regulation to drivepractical change, removingobstacles to successfulknowledge translation andimproving health careoutcomes for people withdementia. The core focus of theteam will be on investigatingsupportive care in the home,the community and long-termcare facilities.

Experience of a lifetimeThe McCusker Alzheimer’s ResearchFoundation, in conjunction with the LionsClub of Claremont Nedlands, WA isorganising the inaugural ‘Ants AcrossAmerica’ 10-day motorcycle ride to raisemoney for Alzheimer’s research. Billed as a‘Corporate Network Challenge’, the projectaims to attract one hundred participants frommajor Australian companies to take part in theride. Individuals are also welcome. The antwas chosen as the group’s symbol to reflect thegroup’s strength, courage and determination.Participants will get the chance to network,while also helping to provide vital funds andpublicity for research. The dates for thisadventure are September 13-24, 2012. Videofootage and photographs of the ride will beuploaded to Facebook and YouTube daily,ensuring a fantastic amount of exposure forAlzheimer’s awareness, companies andindividuals. For more information, contactJenny Gill on 0459147474.

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N E W S


In a major step towardsincreasing awareness of theimpending impact ofdementia, Alzheimer’s DiseaseInternational and the WorldHealth Organization havepublished Dementia: A publichealth priority, a major reportoutlining the scope of thedementia epidemic andasserting the urgent need fornational health strategies tocombat dementia around theworld.“The report provides theknowledge base for a globaland national response tofacilitate governments, policy-makers, and other stakeholdersto address the impact ofdementia as an increasing

threat to global health,” writesDr Margaret Chan, general-director of the World HealthOrganization. “I call upon all stakeholders tomake health and social caresystems informed andresponsive to this impendingthreat.”

Dementia: A public healthpriority finds that the predictedtrebling of the prevalence ofdementia from 35 millionpeople to more than 115million people by 2050 willexert enormous economic andsocial pressure on healthsystems around the world.Every week in Australia,approximately 1600 people arediagnosed with dementia. This

figure is set to rise to 7400 newcases each week by 2050.

The report has severalAustralian contributors,including Pamela Nichols,who helped co-ordinate theinternational project, andProfessor Henry Brodaty, whoassisted in research oncaregivers. There are a numberof key messages within thereport, which includesrecognition of the burdenplaced on caregivers of peoplewith dementia and also arecognition of the uniqueperspectives of caregivers andof people with dementiathemselves. It is suggested thatcaregivers and people withdementia must play a stronger

role in determining the ways inwhich care programs areformed.

Issues covered in the reportinclude: the impact ofdementia around the world,the prevalence across differentnational income levels,predictions of the burden oninternational healthcaresystems, and suggestions forconfronting the scale of theepidemic. “Countries mustinclude dementia on theirpublic health agendas.Sustained action andcoordination is required acrossmultiple levels and with allstakeholders – at international,national, regional and locallevels.”

WHO and ADI: dementia is a global health priority

An Australian research teambased at the University ofTechnology Sydney has wonthe 2011 Alzheimer’s DiseaseInternational PsychosocialResearch prize for bestevidence-based psychosocialintervention. Lead byProfessor Lynn Chenoweth,the project, Person-centredEnvironment and Care forResidents with Dementia: ACost-effective Approach toImproving Quality (PerCEN),was a large three-year study,covering 38 residential carehomes and involving close toone thousand participants.

“Our study (PerCEN) was aclustered randomisedcontrolled trial looking at aperson-centred approach tothe care environment and carepractices to improve outcomesfor persons with dementia,”Professor Chenoweth said.“The research focused on thepsychological well-being,reduction in agitated,distressed behaviours anddepression that can occur inpeople with dementia.”

The research prize included€18000 (Euros) to be used topromote the project and

further its outreach, with themoney being put towards adissemination plan which willimprove the understanding ofthe project’s goals, outcomesand implications.

This plan will supportpractical solutions,implementation of the project’sresults, and sustainability forAustralian programs based onthe new information.

Professor Chenoweth hassaid: “Sharing the project’sfindings andrecommendations with keystakeholders andimplementing strategies todisseminate the project’soutputs throughcommunications, socialexchange, education andtraining are paramount in theinterdisciplinary learning andresearch process.”

Professor Chenoweth, aprominent and celebratedresearcher who is known forher achievements in aged care and dementia-focusedresearch, accepted the prize on behalf of the PerCENresearch team on the 9 March2012 at the ADI conference inLondon.

Australian researchis awarded ADI prize

Professor Andrew Robinsonfrom the Wicking DementiaResearch and EducationCentre in Tasmania hasdescribed levels of knowledgeabout dementia among carestaff and family carers as“problematic” and“frightening”.

Speaking at the NationalDementia Congress inFebruary in Melbourne,Professor Robinson sharedfindings from a studyinvolving the assessment ofthe knowledge of 315 staff in

aged care facilities and 163family carers in three states.

In particular, he said it wasalarming that over 40 per centof registered nurses, over 50per cent of unregistered carersand 60 per cent of family carersdo not consider dementia to bea terminal condition.

He suggested that thisshould be addressed by a full-scale knowledge translationprogramme as the provision ofeducation in isolation does notproduce changes in servicedelivery.

Research indicates the need for knowledge translation

Visit our website at www.journalofdementiacare.comfor sample features, subscription and advertising

information and an index of articles

06-07AJDCMJJ12news_Layout 1 02/05/2012 09:44


An ongoing program at the BupaBellarine residential facility has seen70 older people with dementia walk

20 000 kilometres in 16 months, coveringalmost the entirety of Australia’s coastline.Beginning their travels in Geelong,Victoria, the residents have hiked alongthe Great Ocean Road to South Australia,then walked to places as far off the beatentrack as Coober Pedy, Alice Springs,Darwin and Cairns – without ever onceleaving the nursing home.The Walk Around Australia program

was born in a focus group run at BupaBellarine, based in Geelong, in January2010. At the meeting, staff and residentsdiscussed the importance of staying fit.Though residents understood thatexercise was important, they reported thatthey generally didn’t enjoy exercising andwere sometimes unmotivated to start andcontinue any activities. The residents wanted a goal-orientated,

positive relationship with exercise,instead of pursuing fitness out ofobligation to their health. General CareManager Heather McKibbin and her teamrose to the challenge, and the WalkAround Australia program was born. Oneof the main goals of the program has beento place less emphasis on notions such as‘exercise is good for you’, and insteadpromote exercise as a desirable, goalorientated activity. ‘Wandering’ and restless pacing are

generally considered to be difficultbehaviours for staff to respond to.According to Heather, another goal of theWalk Around Australia program has beento turn ‘wandering’ into somethingpositive. Prior to the program, residents who

were inclined to walk persistently weregenerally steered into sedentary activitiesor repeatedly told to sit down, but ofcourse the walking continued. Now,rather than staff considering walking aproblem behaviour, the program givesthem a reason to encourage and rewardresidents to walk around the grounds ofthe nursing home.

How the program worksThe staff of Bupa Bellarine measured thedistance around three walking trails in thegrounds of the nursing home – twoaround buildings and one around thegarden. They developed a scoring sheetthat residents could use to check off eachtime they completed a lap of a trail. Participation in the program is

voluntary, and residents are given acomprehensive physical assessment priorto commencement to assess if they arephysically capable of participating. Then –on their own or with help – they walk

around the paths when they want toexercise. Residents who cannot walk thetrails are able to join in by exercising withthe help of an arm-peddling machinewhich is set on a table.Every fortnight, the total distance

covered by all of the participants is addedup and drawn on a large map of Australia.The residents ‘walk from town to town’with this method. When they are close to reaching a

milestone or a major location, Heathercontacts a community leader in that townand requests a letter of welcome for theresidents. The mayors of various citiesand towns and other communityrepresentatives have been veryenthusiastic, and sometimes go the extramile to celebrate the achievement. Themayor of Coober Pedy sent a letter alongwith a number of opal chips, which weregiven out to the residents as a token oftheir visit.Every ‘arrival’ in a location is marked

by a celebratory party, themed for thepoint of arrival. When the residents

reached Darwin, they celebrated with beerand crocodiles; in Cairns, it was lolliesshaped like fish, tropical fruit and punch.The letters are framed and displayed onthe wall alongside the map, remindingresidents of their achievements and theirfuture goals.

ResultsBefore starting on the program, theresidents are given a six-minute walkingtest which allows a physiotherapist aideto measure the distance that a resident canwalk. After two months of participation,the walking test is given again. BupaBellarine has kept record of the changes infitness and walking distance, and theresults showed demonstrableimprovements in distance covered byindividuals between the first andsubsequent tests. Overall, the results haveshown that residents are able to walkfurther and have increased levels ofphysical fitness due to their participationin the program.Published research in Australia,

The Walk Around Australia program has motivated long-term care residents with dementia to trek the totaldistance of Australia’s coastline – over 20 000 kilometres –in a 16-month collaborative effort. By James Baldwin

One step at a timeN E T W O R K

Residents’ journeys are marked onto a large map of Australia displayed in the facility

08-13AJDCJJ12netwk1_Layout 1 02/05/2012 09:43


N E T W O R K

America and Sweden indicates thatexercise in cognitively intact older peoplemay slow the onset of Alzheimer’sdisease, and that fitness past the onset ofdementia is valuable in slowing theprogression of dementia. The research showed statistically

significant differences between testpopulations who engaged in moderateexercise (around three times per week)versus those who got little exercise (Andelet al 2007; Larson et al 2006). In a separatestudy which used data from 18,766women aged 70 to 81 years, Harvardresearchers Weuve et al (2004) also found apositive association between physicalactivity and better cognitive performance.Women who walked at least 1.5 hours perweek had less cognitive decline than thosewho walked less than 40 minutes perweek.There is anecdotal evidence that the

Walk Around Australia program can bebeneficial for the mood and memory ofpeople with dementia. A family carer at Bupa Bellarine noted a

great difference in his mother, andreported that prior to the program, hismother was sedentary and often seemed tobe just ‘biding time’. After she had begun

participating, he observed that she wasnoticeably fitter, happier and more alert.For care staff, the program means more

positive engagement with residents, aswell as changing the way they think aboutwalking and people with dementia. It wasrecorded in an improvement log at BUPABellarine that staff are not telling theresidents to sit down as often as they didbefore. The staff have an active role infacilitating the program: contacting therepresentatives of various townships,walking and spending time withresidents, reflecting on their achievementsin their company, and participating in thecelebrations once a goal is reached.

Future roadsThe Walk Around Australia program isongoing. As of March 2012, the residentswere about to reach Bendigo beforemarching forward to Tasmania. There’s nosign of them finishing there, either: someare looking forward to returning to townswhere they were born, while others wishto return to countries they visited whenthey were younger. “I don’t think theresidents want to finish,” said Heather,“They are looking to Tasmania, and afterthat, it’s the world.”

ReferencesAndel R, Crowe M, Pedersen N, Fratiglioni L,Johansson B, Gatz M (2008) Physical exerciseat midlife and risk of dementia three decadeslater: A population-based study of Swedish twins, Journal of Gerontology: MedicalSciences 63(1) 62-66.

Larson E, Wang L, Bowen J, McCormick W, TeriL, Crane P, Kukull W (2006) Exercise isassociated with reduced risk for incidentdementia among persons 65 years of age andolder, Annals of Internal Medicine 144 73-81.

Weuve J, Hee Kang J, Manson J, Breteler M,Ware J, Grodstein F (2004) Physical activity,including walking, and cognitive function inolder women, Journal of the American MedicalAssociation 292(12) 1454-61.

James Baldwin is Contributing Editor of theAustralian Journal of Dementia Care. He can becontacted at: [email protected].

Residents are finding they can walk furtherand faster after involvement in the program



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in the aged care sector mayhave been surprised by thecomprehensive nature of thegovernment’s response to theProductivity Commission’sreport at a time of sucheconomic uncertainty. At thepolicy level, Living longer, livingbetter lays the basis for reformsthat complement the advocacyof Alzheimer’s Australia infive important ways.

Community careFirst, the reforms hold out thepromise of strengthening thecommunity care system tomake it possible for peoplewith dementia to stay at homelonger. There will be morecommunity care packages thatwill better service varyinglevels of need and morefunding for respite care. In

many ways, this is not new,but rather the fulfilment of theaged care reforms that wereintroduced in the mid-1980s.Doubts remain about

whether the reforms still go farenough. Today only 113people per 1000 aged over 70are able to access care. Over 10years that number willincrease to 125 and thenumber of community carepackages will be 45. Thegovernment’s commitmentstops far short of making agedcare a universal entitlement –the system will still berationed. Nonetheless we areheading in the right direction.

Consumer-directedSecond, the reforms willempower consumers throughadopting consumer-directed

care in all care packages,which will allow allconsumers to have more sayover their services: what theyneed, when they need themand who delivers them.Alzheimer’s Australia firstbegan advocating forconsumer-directed care in theaged care system in 2002. Tenyears on, consumers have gottheir message across – servicesmust meet the needs ofconsumers and particularlythose of diverse communities. The cultural change

involved in consumers beingmore assertive in saying whatthey want and serviceproviders responding to thesedemands is huge. It is not justa question of funding, but adeeper question of mutualrespect and, according people

Alzheimer’s Australia has long championed the cause of people with dementia and their carers. In this article Glenn Reescelebrates the impact of the Fight Dementia Campaign on thegovernment and welcomes the release of the ‘Living longer, livingbetter’ reform package

What a difference a day makesIn September 2004, thecoalition announced duringthat year’s federal election

campaign that they wouldallocate additional fundingover four years to makedementia a national healthpriority. Subsequently, in the2005 budget the coalitiongovernment implemented theDementia initiative: Makingdementia a national healthpriority, allocating $320 millionover five years to support highcare dementia communitypackages, expanded dementiatraining, funding for dementiacare research and additionalfunding for Alzheimer’sAustralia through the NationalDementia Support Program.This was a landmark decision,not only in Australia, butworld-wide. Australia in 2005was the first country torecognise dementia as a majorissue in that way. The current government’s

package Living longer, livingbetter, announced on April 20this year by the PrimeMinister, Julia Gillard, and theMinister for Health andAgeing, Mark Butler, signalsanother red letter day forpeople with dementia andtheir family carers. Therecould be no better way tocelebrate the first issue of theAustralian Journal of DementiaCare than with theannouncement that with theseaged care reforms, dementiawill once again be made anational health priority subjectto the agreement of AustralianHealth Ministers. The FightDementia Campaign and thecourage of people withdementia and their familycarers in telling their storiesduring the consultations onthe ProductivityCommission’s Caring for olderAustralians report (2011) havemade an impact on thegovernment.Good policy is the pre-

condition for theimplementation of effectiveprograms. Many stakeholders

Campaigners from Alzheimer's Australia marching in October 2011 at Parliament House, Canberra



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with dementia, dignity in theway services are developed.Family carers, for the mostpart, want to be partners withservice providers to providesupport while not giving upthe responsibilities they havefor the person they care for.

Supplementary fundingThird, the reforms embrace theprinciple of supplementaryfunding to meet the extra costsof dementia care in bothcommunity and residentialcare settings. This is afundamentally importantpolicy outcome that builds onthe introduction of theExtended Aged Care at Home(Dementia) packages andmore recently, the dementiasupplement in the Aged CareFunding Instrument. For toolong, it has been assumed thatgood aged care will solve allproblems, but it won’t unlessthe need for skilled staff andthe extra costs in providingdementia care are recognised.

TransparencyFourth, there are measuresthat should help reassureconsumers that there will begreater transparency in thequality of aged care throughthe independent Aged CareFinancing Authority; the newAustralian Aged Care QualityAgency; the My Aged Carewebsite; and the greaterindependence of the AgedCare Complaints Scheme.Essential to the reforms is the

compact between governmentand consumers that if usercharges increase, access toquality care will increase. Thereare important safeguards in thereforms to ensure consumerinterests are protected, but weknow from the recentconsumer consultations on theProductivity Commission’sreport (2011) conducted byAlzheimer’s Australia that theoverwhelming view of peoplewith dementia and their familycarers is that the system isfailing them badly in multipleways.

Public healthLastly, and in policy termsperhaps the most dramatic

development in the context ofdementia, there is actionwithin Living longer, livingbetter to tackle dementia notonly within the aged caresystem, but within healthpolicy. The 2005 Dementiainitiative was a world first.The hope of Alzheimer’sAustralia was that it wouldprovide a platform on whichto adopt a public healthframework for tacklingdementia includingawareness, timely diagnosis,quality dementia care andsupport, dementia riskreduction and investment indementia research.

Living longer, living better isthe first time in Australianhealth policy that there hasbeen a recognition of theimportance of tackling healthissues in respect of dementiaas well as within the aged care

system. It should becommonsense that timelydiagnosis is the prerequisitefor ensuring that social andmedical support is available topeople with dementia andtheir family carers. Alzheimer’s Disease

International (ADI) released areport in 2011 that found thatin high income countries only20-50 per cent of people livingwith dementia are recognisedand documented in primarycare as having dementia. Thereport found that providingaccess to an earlier diagnosismay have cost savings forgovernment even after takinginto account the investmentrequired to improve diagnosis.The report concludes thatevery country should have anational dementia strategythat promotes early diagnosisand intervention.

The findings in the ADIreport are consistent withAlzheimer’s Australia’s 2011report Timely diagnosis ofdementia: Can we do better? Thispaper, prepared by a team atthe University of Newcastle(Phillips et al 2011), found thatthere is an average of threeyears between the firstsymptoms of cognitive declineand a diagnosis of dementia.These are three lost years inthe lives of people strugglingwith uncertainty and distress.

HospitalsIn acute care there is goodevidence from both Australiaand overseas that hospitalservices for people withcognitive impairment aregenerally poor and thathospitals are dangerous andconfusing places for peoplewith dementia. This results inpart from failure to identifypatients with cognitiveimpairment and lack of stafftraining in how tocommunicate with thispopulation. As a result people,with dementia have a longerstay in hospitals which leadsto added costs for the hospitalsystem.Alzheimer’s Australia is

currently working with the

Living longer, living better signalsanother red letter day for peoplewith dementia and their familycarers. Dementia will once again bemade a national health priority

An Alzheimer’s Australia event on Valentine’s Day 2012 involved people with dementia and carerssending a Valentine’s Day card to political leaders



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Australian Institute of Healthand Welfare on a project thatestimates the economic costson hospitals associated withpoor quality dementia carethrough analysis of data theyhave collected in theirHospital Dementia Servicesprogram.In Australia an assortment

of small projects have focusedon improving the quality ofdementia care in hospitals.These have included dementiaeducation programs, aCognitive ImpairmentSymbol, a dementia volunteerproject, a DementiaChampions project andeducation around delirium.Most of these have beenimplemented in only a fewhospitals and some haveshown benefits for peopleliving with dementia inhospital. E-Health may alsooffer potential for the future inidentifying people withdementia at risk. It is clearthat, without coordinatedaction by the commonwealthand states and territories,hospitals will continue to bedangerous places for peoplewith dementia.

Future campaignsThe government’s plan totackle dementia does not havea vision for reducing thefuture number of people withthe disease either throughdementia risk reduction orinvestment in research. Theseare issues that will be at centrestage in the advocacy work ofAlzheimer’s Australia over thecoming months.The benefits of even a short

delay in the onset of dementiawill be substantial. It has beenestimated that if the onset ofAlzheimer’s disease (50-70 percent of all cases of dementia)could be delayed by five years,it would reduce the numbersof those with Alzheimer’sdisease by half between 2000and 2040 with significantsavings to the health and agedcare systems. Furtherinvestment in research into thecauses and prevention ofdementia is key to reachingthis goal. There is now good evidence

that we can reduce our risk ofdementia by taking control ofalcohol use, blood pressure,body weight, cholesterol,depression, diabetes, diet, headinjury, mental activity, physicalactivity, smoking and socialactivity. Yet only 50 per cent ofAustralians believe that it ispossible to reduce the risk ofdeveloping Alzheimer’sdisease and other forms ofdementia. Even among thosewho are aware there issomething they can do toreduce risk, most are onlyaware of the benefits of stayingmentally active. Approximately80 per cent of Australians arenot aware of potential benefitsof reducing high bloodpressure, cholesterol andavoiding head injuries. It hasbeen estimated that half of allcases of Alzheimer’s diseasecould be attributed tomodifiable risk factors.Dementia research is grossly

underfunded in relation tohealth and care costs,disability burden andprevalence compared to otherchronic diseases. In the 2011-2012 financial year, theNational Health and MedicalResearch Council’s researchfunding for chronic diseaseswas $159.2 million for cancer,$92.4 million for research oncardiovascular disease, $71.2million for diabetes and $53.6

million for research on mentalhealth. Alzheimer’s diseaseand other types of dementiasreceived only $24 million.

Where to now?The government has indicatedthat at the end of five yearsthere will be a review of theprogress made inimplementing Living longer,living better. From theconsumer point of view, therewill be major issues to explore– the extent to whichcommunity care has beenexpanded, improvements inflexible respite, the adequacyof the new funding model andtransparency in quality of care.The government is right totake the view that thesuccessful implementation ofthe ambitious policy reformcontained in Living longer,living better will take a decadeto achieve. Unfortunately, thatwill mean that many peoplewith dementia and theirfamily carers will continue tostruggle to access good qualitydementia care and supportwhen they need it.

� Glenn Rees has been CEO ofAlzheimer’s Australia since 2000and was influential in makingdementia a National HealthPriority. He has a degree ineconomics and a long history ofpublic service at the highestlevels in the UK and Australia. He

was Chair of the Nursing Homesand Hostels Review in 1986 andwas involved in implementing thefirst wave of aged care reforms inAustralia.

ReferencesAccess Economics (2004) Delayingthe onset of Alzheimer’s disease:Projections and issues. Report forAlzheimer’s Australia, Canberra.

Alzheimer’s Australia (2011)Consumer engagement in the agedcare reform process. Report for theDepartment of Health and Ageing,Canberra.

Alzheimer’s Australia (2011) Pfizerhealth report. Dementia Issue #45,Pfizer Australia.

Alzheimer’s Society (2009)Counting the cost: Caring forpeople with dementia on hospitalwards. Alzheimer’s Society,London.

Barnes DE, Yaffe K (2011) Theprojected effect of risk factorreduction on Alzheimer’s disease.Lancet Neurology 10(9) 819-28.

Department of Health and Ageing(2012) Living longer, living better:Tackling dementia. Department ofHealth and Ageing, Canberra.

Phillips J, Pond D, Goode SM(2011) Timely diagnosis ofdementia: Can we do better? Areport for Alzheimer’s Australia,Paper 24, Discipline of GeneralPractice, University of Newcastle.

Prince M, Bryce R, Ferri C (2011)World Alzheimer’s Report 2011:The benefits of early diagnosis andintervention. Alzheimer’s DiseaseInternational, London.

Alzheimer’s Australia campaigners in action


Fear is something we all have toovercome when we encountersomeone with dementia for the first

time. It can take a number of forms:• fear of the unknown, where we come upagainst situations we have neverencountered before

• fear that we may be hurt physicallyand/or emotionally by the other person

• fear of powerlessness: that we will befound wanting, that we will fail in thetask with which we are confronted

• fear that what is happening to the personbefore us may happen to ourselves incourse of time.We may not be fully aware of the cause

of our fear – it may be a mixture of theseand other anxieties. It may not be possiblefor us to allay fully any of these fears.There are strategies we can adopt, though,which may help us with each of them to agreater or lesser degree.

FamiliarityFirst, and most importantly, it is certainlytrue that familiarity can lessen the anxietystate. I don’t mean that we can ever reachthe situation of being able to take dementiafor granted, but it can begin to seem lessstrange in course of time.It is natural to be afraid of anyone who

acts differently from ourselves. If we donot understand why they act as they do, itbecomes difficult to feel empathy for them.They challenge our view of the world as aplace that functions according to a setorder, and change it into somethingincomprehensible and hostile. Here,surely, is the basis for the stigma thatpeople with dementia have to endure, asituation made worse by the way we talkabout the condition and how the mediaexploit it. It is important to recognise thatjust as we are challenged by dementia, soare those who are going through theexperience and their struggle to makesense of it can be even more stressful thanour own.My own introduction to people with

dementia was dramatic. I was pushed intoa unit with thirty residents, told I wouldget nothing from any of them, and thedoor was locked behind me. I knewnothing about the subject, and had never

before met anyone with the diagnosis. Atfirst I was bewildered and felt alienated; Ireally thought I would not survive theexperience. But I learned quickly andbecame more confident. Tom Kitwoodspoke of seeing the person, not the disease,and I understood this before I ever heardhim say it. At the end of a week everyperson was clear to me as a unique andlovable individual.The fear of being hurt is again lessened

by the number of occasions when it hasnot occurred. In my work I have had theprivilege of interacting with hundreds ofpeople with dementia in many differentsituations (in day centres, nursing homes,hospital wards, and in their own homes),and with different degrees ofcommunication difficulty, and no assaulthas ever occurred.

Respite and reflectionIt is true, however, that after about fiveyears of one-to-one encounters, theemotional effect gradually crept up on me.One day I found I could not go throughthe nursing home front door. I went to acounsellor. I thought I was having a‘breakdown’ but she said I was having a‘breakthrough’. The experience ofencountering so many different personsstruggling with the changes they mustcome to terms with had changed me too:my emotions were nearer the surface, andthis was something I must plan for in mysubsequent work. I paced myself, and tooktime for reflection. I am sure this is appliesto all who work in this field: respite for thecarer is an important principle.Fear of failure is without doubt the most

likely to be realised of all these fears: thereis no way that any one individual can givethe perfect answers to all the questionsthat will be raised by communication andrelationship. The best you can hope for isthat you will become more assured, andthat the success rate, insofar as it can bemeasured, will improve. A certainhumility is necessary, and the bar shouldnot be set too high in the first place, so thatwhen the special moments occur, you cantake strength from them.Deborah Everett, a chaplain in Canada,

has written: “The powerlessness that may

occur when caring for a person withdementia has a lot to do with thecaregiver’s inability to value other meansof communication than just words... Whenwe see only meaninglessness, commitmentis often lost. Surrender to the mystery ofthe future means admitting the possibilityof suffering. Real care for those affected bydementia only takes place when the wallsof fear have been removed.”

Preparing for the futureNo one can be sure that dementia does notlie in wait for them. Concentration on thepositives will erase parts of the bleakpicture which other people and the mediawill paint. Rather than push this fearunder, it is better to bring it out into theopen. One of the best things we can do isto make plans for how we wish others tobehave towards us if we were to developthe symptoms; in particular, what wewould like carers to know about our likesand dislikes in case we are not in a positionto tell them. ‘Be Prepared!’ is not just amotto for British Boy Scouts! In general terms, some factual

knowledge of dementia (all the medicalmatters) can be helpful, but it is unlikely toaffect the situation in a major way. For thatto happen there is no substitute for theaccess of awareness that accumulatedexperience brings.Kahlil Gibran offers understanding of

the process we must undergo in thefollowing lines taken from his book TheProphet:“Your pain is the breaking of the shell

that encloses your understanding.Even as the stone of the fruit must break,

that its heart may stand in the sun, so youmust know pain.And could you keep your heart in

wonder at the daily miracles of your life,your pain would not seem less wondrousthan your joy.”


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Removing the walls of fearThis is the first of a series on communication and relationships speciallywritten for AJDC by well-known author, John Killick. They are basedon John’s experiences of talking with and working alongside peoplewith dementia over two decades in the UK and abroad, includingAustralia. The views are John’s own and some of them may beconsidered controversial.

Photograph by Carl Cardonnier fromOpenings (Hawker Publications)



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Richard Flemingwrites about an innovative approach todesign consultation for aged care facilities: an iPhone App basedaround the principles of the Environmental Audit Tool (EAT) whichaims to make designing for dementia more accessible

Reading a good article or attending a goodpresentation on environmental design forpeople with dementia may be useful, but

nothing beats having an opportunity to discussyour own facility with an expert at exactly the timeyou need to firm up your ideas. The NSW/ACTDementia Training Study Centre (DTSC) is well onthe way to providing a nationwide service forpeople engaged in refurbishing or planning newfacilities for people with dementia. An iPhone appbased on the Environmental Audit Tool (EAT) ishelping them reach people they cannot visit inperson.There are more than 90 000 people with

dementia in residential aged care facilities acrossAustralia and the demand for these places isestimated to grow at 4 per cent per annumbetween now and 2029 (Access Economics 2009).Many of the facilities in which these people liveare being refurbished. Unfortunately, theserefurbishments often occur without the workbeing guided by the knowledge gained from thelast thirty years of research into designingenvironments for people with dementia. The result

is a missed opportunity for improvement.The NSW/ACT DTSC provides a Department of

Health and Ageing-funded service to encourageaged care providers planning refurbishments totake advantage of available research information.This service is currently being delivered byNSW/ACT DTSC consultants in NSW, Victoria,Tasmania and Western Australia. It usuallyinvolves a one-day site visit by the consultant. Theday begins with an exploration of the philosophyof care of the facility. Once that idea has beendeveloped, effective principles of design can beapplied to modify the facility while supporting themanagers and staff in delivering the type ofservice that they value.

EvaluationOnce the available knowledge has been described,the facility that is about to be refurbished isevaluated using the EAT. This tool was first usedin a NSW Health project aimed at improving thewards used for people with dementia in rural andregional hospitals. Details of this project areavailable in a NSW Health report, Adapting theward: For people with dementia, which can be foundon the NSW Department of Health website.Whenever possible this evaluation is conductedwith key staff from the facility. When the audit iscompleted, the visiting expert enters the resultsinto a spreadsheet that provides two things whichwill be the basis of a discussion in the afternoon. The spreadsheet generates a graph (see left) that

compares the facility with a number of otherfacilities, including those purpose-built forresidents with dementia. In this example, TheWing – a facility that has been audited and is inblue – compares favourably with other purpose-designed facilities in size, the provision of familiarfurniture and fittings, and in providingopportunities for privacy as well as being withothers. It doesn’t do well on providing links to thecommunity, that is, making it easy and pleasantfor family and friends to visit.The second outcome of the visiting expert’s

spreadsheet is a table in which the items in theEnvironmental Audit Tool are ranked in order ofthe size of the difference between the actual scoreand the maximum score, or in other words, theroom for improvement. The table prioritises items

Trial iPhone app helps to extend environmental design consultancy

Professor RichardFleming is the Directorof the NSW/ACTDementia TrainingStudy Centre. Forfurther informationsend an email [email protected].



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for which there is a lot of room for improvement atthe top. The afternoon begins with a discussion of the

strengths and weaknesses of the current facility asshown by the graphical comparison with otherfacilities. This leads on to a detailed discussion ofthe items in the audit tool that have the greatestroom for improvement. In other words, thediscussion starts with the items at the top of thelist and works down, the idea being to come upwith ideas for improvement that fall into threecategories: those that can be done immediatelyusing existing resources; those that will take a littlelonger and may require modest expenditure; andthose that will have to be put into the maintenanceor capital works schedule. By the end of theafternoon the key staff have begun, if notcompleted, a systematic plan for improvement.Shortly after a consultation, Vicki Simpson, the

manager of a UnitingCare Ageing facility inTamworth, NSW, emailed with the followingfeedback:“Our aged care service recently enlisted the

support of the environmental design consultancyservice to review the dementia areas and the linkswith the general aged care sections. Richard’sideas were well received (because they wereunderpinned by strong research), were practicalbecause most did not require major buildingchanges, challenged staff ideas and led to a flurryof creativity on the ground – all of which areproving positive for those who live in the facilities.As a result agitated people are becoming less so,and some of those who were not eating havewarmed to the changes, recognise their diningroom and are now happy to stay and eat.”The service began operating in November and

forty consultations will have been provided byJune. While the service will be extended toQueensland, South Australia and the NorthernTerritory in the coming financial year, travellingtime, travelling expenses and the availability oftime from the experts will always restrict thenumber of visits that can be made.To solve this problem, an iPhone app based on

the EAT is being trialled to guide the facilitymanager through the audit process without aconsultant actually being present. The app, called

‘Built Environment Assessment Tool – Dementia’(BEAT-D), is available through the Apple AppStore. The user downloads the app which thenrequests some basic information, including anemail address. When the app sends thisinformation to the computer in the NSW/ACTDTSC Centre, a unique User ID and Password issent to the user who is then able to access the fullapp.When the user is ready they use the app to

complete the audit tool. It presents questions inten sections, each one corresponding to a principalof design, for example safety, visual access, andstimulus reduction. At the end of each section, the user is asked to

take a photo or two to illustrate the main points oftheir assessment. They can illustrate good or badparts of the environment. When the user hascompleted all of the sections they have theopportunity to send the information and thephotographs to the computer database at theNSW/ACT DTSC. When it is received, thebeginnings of a report are automaticallygenerated. This includes the graph comparing theuser’s facility with other facilities and the ‘Roomfor Improvement Report’. The photographs arealso placed in their correct positions in a reporttemplate that is structured on the ten principles ofdesign.This report is then sent back to the user along

with information on good design for people withdementia and an invitation to set up a one-hourteleconference with a NSW/ACT DTSC designexpert. During the course of this teleconference thestrengths and the weaknesses of the facility will bediscussed; the report with the photographs isfleshed out, and a beginning made on thedevelopment of the short-, medium- and long-term plans for the facility. While this approach does not offer the same

level of personal interaction as the site visits, itdoes offer the opportunity for a very detailed,systematic discussion of ways to improve aresidential aged care facility. It is most useful topeople who are actively engaged in planning arefurbishment and will provide them with timelyinformation that will help them to make the best ofthe opportunity that refurbishment offers.

ReferencesAccess Economics (2009)Making choices, futuredementia care:Projections, problems andpreferences. AccessEconomics, Australia.Fleming R, Forbes I,Bennett K (2003)Adapting the ward forpeople with dementia.Sydney, NSW Departmentof Health.Smith R, Fleming R,Chenoweth L, Jeon Y-H,Stein-Parbury J, BrodatyH (2011) Validation of theEnvironmental Audit Toolin both purpose-built andnon-purpose-builtdementia care settings.Australasian Journal onAgeing. Article firstpublished online: 7 Aug2011,DOI:10.1111/j.1741-6612.2011.00559.x.

The iPhone app isbased on the EAT



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If you go to Baptcare Strathalan Community on aWednesday, you might notice something...unusual. Namely, people with dementia, care

staff and the odd nurse laughing along with agentleman named Marty, sitting on the lap of aman named Peter Coughlan. Marty is one of fiveventriloquist dolls puppeteered by Peter at theVictorian aged care residential home as a part ofthe Ventriloquist Dolls in Music Therapy Program,an ongoing on-site program that now runs acrossfive long-term residential facilities in Melbourne.Possibly the first of its kind in the world, theprogram was the recipient of an Aged CareStandards and Accreditation Agency BetterPractice Award in 2011 for its role in enriching thelives of people with dementia in long-term care.Peter Coughlan, the man behind the initiative, is

a music therapist who has worked with olderpeople and people with dementia for over adecade. He developed an interest in finding otherways to engage people, in addition to music. Hisinitial programs at Strathalan included one-on-one, small and large group music therapy sessions,static displays of toys and objects, and later,electronic toys which he used in performances toentertain residents of the home. A display of plastic ‘rubber duckies’ turned out

to be very successful and lead to much laughterand humour around the nursing home. Thisincident sparked his interest in the ability ofobjects such as toys and dolls to stimulate peoplewith dementia, and he went on to expand hisrepertoire into objects that move, such as a singingtoy dog, a singing lobster and a recordable parrotwhich plays back sound in a higher pitch, just likethe real thing.The seeds of the Ventriloquist Dolls in Music

Therapy Program were planted during a visit toBaptcare Strathalan by the iconic Australianentertainer Ron Blaskett, who performed at thehome with his famous ventriloquist doll, GerryGee, in 2010.“I heard a big commotion coming from the

common room, so I stuck my head in. I saw Ronsitting there giving a performance with hisventriloquist doll, Gerry Gee,” Peter said. “Andthe residents were reacting very well to the doll.

They were laughing... there were residentselbowing each other and saying things like ‘Didyou see that? The doll just talked!’”Peter had a broken ventriloquist doll at home,

but had no idea where to have him fixed. Aftertalking to Ron Blaskett, he got the name andnumber of Gordon Ross, a man who specialised inmaking and repairing dolls for ventriloquistperformances. Ross was also making reproductions of Gerry

Gee. Peter got his doll repaired, but after muchdeliberation, bought himself one of the superior,but costly Gerry look-a-likes. After witnessing thereaction at Strathalan, he wanted to know ifworking with a ventriloquist doll could helpresidents become more engaged, alert andconnected.As it turned out, the residents loved the doll and

continue to respond positively to ventriloquistperformances. The pair move around the facilityduring the day, with Peter and Marty integratingtheir show into the fabric of day-to-day care atStrathalan. A constant role play occurs withresidents, visitors and staff, encouraging laughter,humour and fun interaction with the doll. Theprocess is very different to standardimplementations of doll therapy for people withdementia – the ventriloquist dolls are not left inthe complex for the residents to pick up as andwhen they choose, and Marty and the otherventriloquist dolls are only used in activeperformances which engage residentsindividually.

Drawing out responsesOne of the most remarkable results of the programhas been to observe the way in which the use of aventriloquist doll opens up residents, particularlythose who are withdrawn or depressed. Peoplewith dementia, who may fear talking about theirsituation, emotions and difficulties to care staff,will often open up to a ventriloquist doll. PeterCoughlan related that one woman who had notspoken for around two years opened updramatically when introduced to the doll. “Shekissed his cheeks, gave him a two-armed hug, andthen she grabbed his collar. He had a sheepskin

How ventriloquism is helpingpeople to speak for themselves

James Baldwin writes about the Melbourne-based BaptcareStrathalan initiative, the Ventriloquist Dolls in Music TherapyProgram, which brings accessible, interactive comedy topeople with dementia

James Baldwin isContributing Editorof the AustralianJournal of DementiaCare



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collar on, and she said: “That’ll keep you warm forwinter!” Another resident who rarely communicated

with her family or care staff also opened up to thedoll, engaging with it where she would not engagewith people. Peter became interested to find out more about

ventriloquism and dementia. He began askingother ventriloquism performers from aroundAustralia for their thoughts on why residentsmight open up to a doll instead of a person. Thegeneral conclusion was that the doll is a surrogate,non-threatening entity, who evokes Vaudevillianimages of humour and light-heartedness whichmakes communication easier. Ventriloquism isassociated with a kind of ‘truth-telling’ – the dollsare typically not constrained by the same socialmores and restrictions which people are pressedinto, and so, communication with them is easierand freer.

Scoring systemPeter went on to contact Dr Bruce Barber, aresearcher and lecturer in Melbourne University’sNational Aging Research Institute (NARI), to gethis advice on research methods to probe thisquestion more systematically. The BaptcareStrathalan team, with Dr Barber’s advice,developed a scoring system for testing whether ornot residents showed higher degrees of interactionand engagement with the doll versus listening tomusic or interacting with a member of staff. Eachsession was conducted with an observer inattendance. The interactions were scored under three

conditions: one with questions to the resident by amember of staff (the control group), one withmusic and questions, and one with the doll talkingand asking questions. The study revealed a 28 percent increase in engagement when the doll wasused compared to the other two types ofinteractions.Performing with the dummy takes a flair for

comedy, a gregarious personality and a lack offear. “It’s not for the faint-hearted,” Peter reports,“You have to be able to get a doll, you have to beoutgoing, you have to be able to role play anddevelop a character.” He noted, however, that theperformer does not necessarily need to know howto perform closed-mouth ventriloquism. Peter alsoadds that, “I’d love to see other aged care workersembrace this phenomenon, and use it daily. It’s awinner.”The program started in 2010 and continues to

develop. The next step will be to combine theventriloquism performances with music to offerresidents the opportunity to engage with the dollin song as well as conversation. It is hoped thatthis will bring the benefits associated with musictherapy into the interactions. There is clearly anopportunity for further research into theeffectiveness of this approach.

Baptcare operates eight aged care homes across Victoriaand Tasmania. To find out more about Baptcare’s services,visit www.baptcare.org.au

Dolls have been observed to have agenerally positive effect as a form oftherapy with people who have dementia.A pilot study in 2006 based in theUniversity of Newcastle in England(Mackenzie et al) questioned care staffabout the use of dolls in a high-levelresidential care facility. The dolls were leftin visible locations, such as tables andhobby niches, where the residents wereable to find and collect them.

The study found that the overwhelmingresponse was positive, with care staffreporting that residents who made use ofthe dolls were less agitated, more engagedand more likely to communicate with staff.

Despite its effectiveness, this approach hastriggered ethical and moral debate over the

suitability of using dolls as therapy for olderresidents on the grounds that it is potentiallyinfantalising. Infantilisation refers to thetreatment of old age as being a secondchildhood, with accordingly diminishedrespect for the adulthood and history of anolder person. Problems associated with dolltherapy include the risk of over-investmentin the dolls, overstimulation and criticismfrom family and other residents of peoplewho use the dolls.

Reference Mackenzie L, James I, Morse R,Mukaetova-Ladinska E, Reichelt K(2006) A pilot study on the use of dollsfor people with dementia. Age & Ageing35(4) 441-44.

Doll therapy in dementia care

Peter with Marty and another of his ventriloquist dolls


D E S I G N


Designing for dementia: key designprinciples in Indigenous settings

Architect Kirsty Bennett discusses the applicationof design principles to a long-term residential carefacility for older Indigenous people with dementia

How do we design appropriatefacilities for Indigenous peoplewith dementia? As an architect, I

find that one of the most fascinatingthings in any new project is getting toknow the client. What is important tothem? What are their dreams? What aretheir values? How do they wish to live?What are they able to do? Whendesigning for older Indigenous peoplewith dementia it is no different. Thesequestions can be asked in any setting. Itis the answers and the meaning of theresponses that will differ according to theplace and people, however the answerscan be understood with reference to a setof key principles.This article will illustrate the

application of a set of principles to thedesign of an aged care facility forIndigenous people with dementia andtheir application in the development ofan audit tool for measuring the strengthsand weaknesses of these specialisedfacilities.

Key design principlesThe late 1970s and early 1980s saw thebeginnings of interest in the building ofspecialised units for people withdementia. Purpose designed cottageswere built in Aldersgate in SouthAustralia, designed by the architect BrianKidd. The CADE units were establishedin NSW (Fleming & Bowles 1987) and theLodge Programme started in Victoria(Marshall & Eaton 1979).As a result of this work and that

undertaken in other parts of the world, anumber of key design principles havebeen identified as important (Fleming &Bowles 1987, Fleming & 1994, Kidd 1988,Calkins 1988, Cohen & Weismann 1991and Marshall 2001). In 2003, RichardFleming, Ian Forbes and I identified 10key design principles for people withdementia, and developed theEnvironmental Audit Tool (EAT) tomeasure these principles in practice (seeFleming, Forbes & Bennett 2003): • Be safe and secure.• Be small.• Be simple and have good ‘visualaccess’.• Reduce unwanted stimulation.• Highlight important stimuli.• Provide for planned wandering. • Be familiar.• Provide for opportunities for privacyand community.• Provide links to the community.• Be domestic.While these are design principles for

people with dementia, they are alsodesign principles which are of benefit tothe whole community. All of us, forexample, would like to know where weare, where we can go and what we willfind when we get there.

Applying key principles It is vital to recognise that these areprinciples of design. They are not achecklist of items, simply to be ticked offone by one. They are not rules to beapplied in the same way to everysituation. They are principles to be

understood and interpreted in eachparticular setting to determine what theymean. The principles are the start of aconversation. The responses to theprinciples can be very different,depending on where the project is andwho will live there. The key designprinciples can be applied effectively invery different cultural settings. This isclearly seen in their use in the design ofTjilpi Pampaku Ngura (TPN), on theAnangu Pitjantjatjara Yankunytjatjara(APY) Lands, in the north western part ofSouth Australia near the border of theNT, WA and SA.In this context it is also vital to note the

importance of undertaking meaningfulconversations and consultation. Therewill be things when working withIndigenous communities that as non-Indigenous people we are not told. Therewill be a reason for something being theway it is that we are not told about orsimply do not understand. Gender andskin groups will determine who can talkto whom among Indigenous and non-Indigenous people. The wayconsultations are held will be particularlyimportant and cultural matters willinfluence where meetings are held andwho is present. It will also impact on thetime needed to make decisions and theway decisions are made.

Design principles at Tjilpi Pampaku NguraTjilpi Pampaku Ngura (meaning ‘oldman, old woman’) is an aged care facilitywhich is home to up to 16 Anangu eitherfor respite or a longer stay. Threearchitects worked on the project: AdrianWelke of Troppo Architects who hasexperience in designing and building inremote areas, Paul Pholeros, an expert inIndigenous housing who has worked onthe APY Lands for many years, and Icontributed my experience in designingfor people with dementia. It was openedin 2000 following a long consultationprocess which considered the needs andhopes of the people of the APY Lands. Itcomprises a series of separate bedroom

Kirsty Bennett is an architect who hasspecialised in designing for older peopleand people with dementia for over 15years. She is currently Manager ofMajor Projects and Architecture for theUniting Church in Australia, Synod ofVictoria and Tasmania. She is alsoManager, Environmental DesignEducation Services at the NSW/ACTDementia Services Training Centre atthe University of Wollongong.

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buildings, each containing twobedrooms (which can have three orfour people living in them) and an ensuite bathroom. These units are placedin the landscape and connected byopen walkways to a central buildingwhich contains a lounge/dining area,staff facilities and communal toiletsand bathrooms.TPN is not like a residential aged

care facility in a city or suburb ofPerth, Melbourne, Adelaide orHobart, but the process for its designwas not dissimilar to that in otherplaces. Here too, the architects metwith Anangu and aged care workersand explored what the designprinciples could mean in that place.The first things to consider werequestions which focused on whatolder Anangu want and are able to do,what is important to them, theirexperiences and their expectations.Anangu said that they want toparticipate in cultural business, travel,hunt and gather, teach youngAnangu, visit their traditionalcountry, attend funerals and conductsorry business. They wish to maintainfamily and community links, socialise,practice traditional arts (such as makingartefacts, basket weaving and painting),sing, dance and tell stories, and sit by thefire with other Anangu. It is importantthat they have shelter from the elements(of extreme heat extreme cold, dust andrain), have sheltered shady places to sitwith a view, have good food includingbush tucker, feel safe and have securestorage for their belongings.Many Anangu come from homes

where good housing is defined by theavailability of running water, afunctioning toilet and a place to cook.Anangu will expect to go outside nomatter how sick they are, and will wantto lay near fires and live close to or on theground. Anangu can live happily withvery limited belongings. Whileeverything comes and goes from thebuilding it is not the feature but rather aplace for retreating in times of badweather and storing things. It will beimportant that there can be separationbetween men and women and thatfamily/social relationships that requiredistance between people can berespected. It will also need to be possibleto make a sorry camp, a place wherepeople can move to and from when aperson dies. It was apparent that whileAnangu are more agile than other frailolder people (seen for example in theway they climb into the back of vehiclesand sit on the ground for hours) they arechronically ill with diseases such as

diabetes, kidney, respiratory, skin, eyeand heart disease and mobility problems.Having gained a greater

understanding of these ‘big picture’questions, it was then important todetermine which of the design principlesare most relevant when designing forolder people on the APY Lands and whatthe most appropriate response to theseprinciples was. These are now describedand illustrated below.

Be safe and secureTPN is surrounded by a high wire fence.It is easy to see and is an obvious barrier.In this setting, however, this is an entirelyappropriate response. Fences are seen as a positive thing on

the APY Lands, perhaps in a similar waypeople from other cultures may view thewall of a lounge room. The fence serves anumber of purposes. One is to preventresidents at TPN leaving. Another is toprevent non-residents coming to TPNuninvited. Another is to identify thisplace as the older person’s place, therebyoffering them peace and security.

Be smallAnangu have an interesting appreciationof scale as they live with the vastness ofthe landscape and the smallness of awiltja (traditional outdoor shelter). TheTPN is a small facility that has then beenbroken up into a number of smallbuildings. Bedroom units are separate

buildings that are distant fromcommunal areas. All the buildingsare placed in the landscape and thisvastness is reinforced by thebuildings’ separateness. Thebuildings are designed to be smallobjects in a vast landscape, ratherthan be a significant presence.

Be simple and have good ‘visual access’When the Anangu sit in or leave thelounge/dining room at TPN they seethe sheltered path which leads to thebedroom units and the surroundinglandscape. When the Anangu leavetheir bedroom unit they see thelounge/dining room and thelandscape. In this way Anangu havea clear view of the places that are ofinterest and importance to them andso can choose where they wish to go.

Reduce unwanted stimulationAt TPN the kitchen and laundry areplaced away from resident areas andaway from the view. There are twocirculation systems: a ‘front of house’way for residents and a ‘back ofhouse’ route for staff. This allows

residents to be undisturbed by theservicing and operation of the buildingand instead to focus on the areas that areof interest to them such as a bedroomunit and the lounge/dining room.

Highlight important stimuliFor many Anangu it will be the outdoorenvironment which will offer the mostmeaningful stimulation and cues. Rocks,

View to country at TPN

TPN offers a place to be on one’s own orwith others outside


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views, mountains and fire are all likely toassist wayfinding and orientation. As aperson moves around TPN there areconstant views and engagement with theoutdoor environment. Anangu aredirected toward bedroom units and thelounge/dining area by the coveredpathway. Internally, a large painting by local

Anangu marks the approach to the loungeroom. Otherwise, internal finishes aredurable and simple in response to theharsh demands of the environment.

Provide for planned wanderingThere are many ways people can moveabout at TPN. The outdoor environment isdeliberately free from paths and insteadremains in a more natural state. People areable to move about outside from place toplace as they wish, following their ownroutes and creating new ways asappropriate.Circulation between buildings is clearly

defined by covered walkways. A simplepath is laid under the walkway. This isdesigned to be easy for people to moveabout on in wheelchairs, on foot or bycrawling.

Be familiarFor Anangu, outdoor shelters (wiltjas) area very familiar part of their lives. Theoutdoor environment was designed forthese to be introduced and removed asappropriate over time.Rooms have been designed to be of a

size that is familiar to Anangu, recognisingthat they are used to being inside in a

small space or outside in big country. The en suite layout is similar to the

layout of bathrooms in houses on the APYLands. Even if the older people have notlived in a house they may have visited oneand so the design could be familiar.

Provide for opportunities for privacyand communityMuch of life in Indigenous communities islived in public. On the other hand, privacybetween different skin groups and gendersis very important. There are many ways people can be with

others or alone at TPN. The lounge/diningroom is a place for people to gather and betogether in small or large groups. It isimportant, however, not to assume that allthings are done in public. Privacy inbedrooms is a big issue at TPN. Visitorsare not allowed in residents’ bedrooms.Bedrooms are seen as private secure placesrather than as meeting places. Outdoors,verandahs, wiltjas and trees provide manyopportunities for people to sit (or lie) andbe with others or be alone.

Provide links to the communityThe relationship between TPN and thecommunity is best reflected in theselection of the site itself. Despite olderAnangu ’s strong desire to take part in thelife of the APY Lands, it was seen as veryimportant that older people were given aquiet place to live, away from the noiseand humbug (or bother) of the community.This is entirely consistent with the wayolder people choose to live in tents on theedge of the town centre so they are awayfrom the noise and any trouble.The selection of the site and its cultural

and spiritual significance was seen asmuch more important than the design ofthe facility itself. It was important that thesite was a place where all Anangu could

The relevance of key design principles indifferent cultural settings has also been seen inthe development of an Indigenous Aged CareDesign Guide for the Department of Health andAgeing. Led by Paul Pholeros, Kirsty Bennett,Adrian Welke and Maureen Arch, the projecttook the key principles of the EAT andexamined how these are relevant toIndigenous people. This has resulted in thedevelopment of an Indigenous EnvironmentalAudit Tool (IEAT). The IEAT is designed to beused in Indigenous settings across Australia inlocations as geographically and climaticallydifferent as Boroloola, Brunswick and Pukatja.It is organised around the ten design principlesof the EAT, but questions have been reviewedand revised to respond to Indigenous settings.

A number of additional questions have beenadded to the principle of ‘Be safe and secure’and it has been renamed ‘Safety, security andhealth’ to reflect the need for greater emphasison designing for health in many Indigenoussettings. Over 90 per cent of the failures of healthhardware in Indigenous housing are due to poorinitial construction or lack of routine maintenance(Dept Family Community Services 2007). As aresult, Indigenous people do not have the abilityto carry out the most basic healthy livingpractices: the ability to wash people, particularlychildren; the ability to wash clothes and bedding;to be able to remove waste safety from thehouse and immediate living environment; theability to store, cook and prepare food (DeptFamily Community Services 2007).

In remote locations, aged care facilities canface difficulties in providing functioning healthhardware due to the harsh environment, lack ofavailable tradespeople and poor design andmaintenance. The IEAT therefore asks anumber of additional questions to determinewhether kitchens, toilets, bathrooms andensuites are functioning in the aged care facility.

The principles of ‘Visual access’ and ‘Privacyand community’ include a greater emphasis onoutdoor living. ‘Privacy and Community’ alsoincludes this emphasis and the questions alsoexplore group sizes in more detail. InIndigenous settings, much of life can be livedcommunally and so there are times when largegroups are very desirable.

‘Domestic activity’ identifies a number of otherthings that would be specifically appropriateand desirable for Indigenous residents to beinvolved in, including access to clean sand forsitting and dancing, being able to enjoy views tocountry, sleeping or resting in a cool (or warm)place outside and being able to make spears,create artefacts and or brew a cup of tea.

The IEAT also introduces another principle,‘Creating an enabling environment –Accessibility’. This is in response to the greaterlevel of physical impairment that manyIndigenous residents are likely to have as aresult of chronic illnesses such as diabetes andeye disease. It also recognises that Indigenouspeople are likely to want to be outside nomatter how frail they are.

Indigenous Aged Care Design Guide

Anangu sitting in a wiltja at TPN


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feel welcome, recognising that people willcome from all parts of the APY Lands andso for many people TPN will be onsomeone else’s country. The importance ofsite selection is reflected in the time takento choose a site: three years. This includedan extensive process of visiting all parts ofthe APY Lands to talk through the issues.Many Anangu travelled great distances totake part in these meetings. It alsoincluded making an inventory of all thethings that were required to make thefacility work in each community, such asgood power supply, good water supply,access to a health clinic, staff, good roads,a (food) store and an airstrip.

Be domesticFor Anangu a ‘domestic’ environmentwould mean having easy access to theoutdoors and being able to sit around, eatoutside, sleep outside, and see thesurrounding country with adequate shadeand shelter. It means having access to fireto make a cup of tea, make a spear, to cook,to make artifacts, to keep spirits away, toprovide warmth and to dance and sing.(All of these activities and tasks requiredifferent sorts of fires.) It means having afire that can be moved during the day tosuit the sun and wind. Older people at TPN are able to

continue to do much of what they wouldlike to do. This includes painting, sittingoutside under a wiltja, looking out longway to country and watching the path ofthe moon and the stars.

ConclusionIt is apparent from this brief review of thedesign of Tjilpi Pampaku Ngura and thedevelopment of the IEAT that the keyprinciples of designing for people withdementia are relevant when designing forolder Indigenous people. It is vital torecognise the strength of Indigenousculture and the influence this can have ondesign of settings for older people. Thekey design principles offer a way toexplore this by using a design approachwhich has been widely recognised.The key lies in exploring the principles

and starting afresh with every project. Letus not assume we know how older peoplewish to live. Let us not presume to knowwhat is important to them. Let us consultmeaningfully and take time to sit witholder people and hear their stories. Andthen let us apply the key design principlesin an imaginative way that createsinspiring environments for people withdementia.

ReferencesArch M, Paddy M, Ducasse E, McManus D, Carefor frail older people on the Anangu PitjantjatjaraLands in Anderson, J,W, Hughes, D, Judd, S,

Kiyoya, E, Wijnties, M (2012) Design for aging:International case studies of building andprogram. Hoboken, New Jersey, John Wiley &Sons.Australian Bureau of Statistics (2005) 2005 Yearbook. Canberra, Commonwealth of Australia.Bennett K (2000) An Australian approach todesign for older people with dementia. STRIDEMagazine, June/September.Bowles J, Fleming R (1994) The prostheticenvironment in dementia care in Dementia: Apositive view. Australia, Canberra, Department ofVeterans’ Affairs.Calkins P (1988) Design for dementia: Planningenvironments for the elderly and the confused.Owings Mills, Maryland, National HealthPublishing.Cohen U, Weismann G (1991) Holding on tohome: Designing environments for people withdementia. Baltimore, John Hopkins UniversityPress.Fleming R, Bowles J (1987) Units for theconfused and disturbed elderly: Development,design, programming and evaluation. AustralianJournal on Ageing 6(4) 25-28.Fleming R, Purandare N (2010) Long-term carefor people with dementia: environmental design

guidelines. International Psychogeriatrics 22(7)1084-96.Fleming R, Forbes I, Bennett K (2003) Adaptingthe ward for people with dementia. Sydney, NSWDepartment of Health.Garvey G, Simmonds D, Clements V, O’Rourke P,Sullivan K, Gorman D, Curnow V, Wise S,BeattieE (2011) Making sense of dementia:understanding amongst Indigenous Australians.International Journal of Geriatric Psychiatry 26649-46.Department of Family and Community Services(2007) National Indigenous housing guide.Canberra, Commonwealth of Australia.Judd S, Marshall M, Phippen P (1998) Design fordementia. London, Hawker Publications.Kidd B (1988) Hostel design guidelines.Canberra, Department of Community Servicesand Health.Marshall M (2001) Environment: how it helps tosee dementia as a disability, in Benson S (ed),Care homes and dementia. London, HawkerPublications.Marshall E, Eaton D (1979) Forgetting but notforgotten: Residential care of dementing elderlypeople. Melbourne, Victoria, Uniting Church inAustralia.

Above: the covered walkway. Below: a painting by Anangu marks the approach to the lounge.



How to raise a SMILE: the SydneyMulti-site Intervention of

LaughterBosses and Elder ClownsDr Peter Spitzer, aka Dr Fruit-loop, explains the work of Elder Clowns and LaughterBosses in dementia care, while Dr Lee-Fay Low shares some of the early findings fromthe world’s largest study into the effects of humour therapy on people with dementia

Dr Peter Spitzer is theco-founder of theHumour Foundation,a not-for-profitdedicated to bringingelder clowns andhumour-basedinterventions toAustralian hospitals.He is currently themedical director of theFoundation. [email protected] for moreinformation.

There’s nothing like a good laugh, and they canbe hard to find in residential aged care. In NewSouth Wales, the Humour Foundation has

introduced two interlinked collaborative programs –Elder Clowns and LaughterBoss training – that havebeen bringing humour and joy into the lives ofpeople with dementia with a unique collaborationbetween residential aged care facility (RACF) staffand specially trained Elder Clowns from theAustralian Humour Foundation. A study of the twoprograms – the Sydney Multisite Intervention ofLaughterBosses and Elder Clowns (SMILE) – is thelargest study into the effects of humour therapy onpeople with dementia in the world.

The benefits of laughter for people with dementiaGelotology is the study of humour and its effect onthe human body. The Association for Applied andTherapeutic Humor (AATH), founded in 1988,defines therapeutic humour as “... any interventionthat promotes health and wellness by stimulating aplayful discovery, expression, or appreciation of theabsurdity or incongruity of life’s situations. Thisintervention may enhance health or be used as acomplementary treatment of illness to facilitatehealing or coping, whether physical, emotional,cognitive, social or spiritual” (AATH 2001). On the physiological level, laughter stimulatesrespiration, relaxes arteries and improves bloodflow as well as oxygen saturation of peripheralblood. Positive effects of laughter on hypertensionand diabetes – common co-morbid conditionsaccompanying dementia – have been noted.Laughter has been researched in the field ofpsychoneuroimmunology, with studies showing adrop in serum cortisol (‘stress hormone’) levels andthe enhancement of immune system function.People with dementia often experience degrees ofchronic pain, which may be undiagnosed anduntreated, and laughter is beneficial as a non-pharmacological tool to help manage pain.Gelotological interventions have shown positiveeffects on performance, mood, optimism, anxietyand depression.Older persons who have a better sense of humourand use humour as a coping mechanism are morelikely to live longer (Svebak et al 2006), age well(Solomon 1996), and be more satisfied with theirphysical health and life in general (Celso et al 2003).The ability to experience the positive benefits of

humour does not diminish over the course ofdementia. People with dementia may lose the abilityto communicate clearly through use of smiling andlaughter at a relatively early stage of the condition,but despite the lack of physical cues, theydemonstrate the associated health and mental healthbenefits of laughter and humour from onset throughto late-stage dementia (Tadeka et al 2010).The same study, based in Japan, goes on to notethat: “Dementia patients are usually underconsiderable strain, at least at the beginning of theirillness. Patients’ families are placed under evenmore stress because of the burden of care. A positiveemotion, together with laughter, may enabledementia patients to cope with their illness better,improve immune function, increase pain tolerance,and decrease the stress response. When a positiveattitude is shared by patients and staff, it can have apositive effect on the emotional-affective andcognitive functioning of the patients” (Tadeka et al2010, p5).

H U M O U R T H E R A P Y

Dr Lee-Fay Low is an NHMRCPostdoctoral ResearchFellow at theDementiaCollaborativeResearch Centre forAssessment andBetter Care Outcomesat UNSW.

Doris enjoying a dose of bubbles

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The art of clowningClowning has a long history as a performing artform that invites play, interaction and laughter. Theinternationally renowned ‘Father of Clown Doctors’is Patch Adams, a doctor based in New York City. Asa young doctor in the 70s, Patch Adams beganclowning for hospital patients. Big Apple Circusestablished the Clown Care Unit in New York Cityin 1987, and was the first structured hospital clownprogram with frequent and regular visits to hosthospitals. There are now many hospital clowningprograms around the world where hospital clownswork in partnership with other health careproviders. Professionalism of the hospital clownsand the programs they deliver are high priorities,with regular training, program and scheduledquality assurance reviews. Clowning in hospitaladdresses the psychosocial needs of patients as wellbrightening the atmosphere of the facility as awhole.It was a very natural progression for this art formto spread from paediatric hospitals into other areas,partnering with healthcare professionals working inadult medicine, rehabilitation and palliative care.Regular programs have been delivered to aged carefacilities by overseas clown doctor units for the past10 years. These include the Big Apple Circus ClownCare Unit Vaudeville Caravan in the USA; theHearts&Minds Elderflowers in Scotland; and Foolsfor Health Familial Clowns, who operate in Canada.Programs for older people with dementia differfrom clown doctor programs used with cognitivelyintact patients. Although these programs operateindependently, a number of common themes haveemerged and these include: avoiding thehospital/doctor persona of the performer as used inhospitals; avoiding stethoscopes and medicalschticks; more detailed briefing by staff; sensitivetailored interactions based on individual needs;

flexibility in delivering multiple art forms; and thetoning down of costumes and characters. However,all performers continue wearing the traditional rednose.

A healthcare–arts partnershipThe Humour Foundation has been deliveringhumour therapy to paediatric hospitals, generalhospitals and palliative care facilities since 1997.Visits to residential aged care facilities (RACF) wereinitially irregular, and as a result impact andconnection with everyone in the facility was limited.The comment “Why don’t you come more often?”signalled an inadequately met need.In my capacity as co-founder of the HumourFoundation, I developed a new program model in

It will make a big difference if the cultureof the facility, including management, iswelcoming of humour, play and creativity.This can also make a difference to staff,improving staff satisfaction, decreasingstress, and reducing turnover.

Any humour intervention will involve somerisk, a performance or a joke cansometimes ‘fall flat’. This risk is lessenedthrough training, experience, trust andgood communication with the resident. So,take the risk with good heart, handlinghumour slowly and sensitively. Being alertfor signs that today is not the day for joking.

Here are some ideas for bringing laughterto any facility:

• Put up a humour notice board. Thisdoesn’t take a lot of management and

becomes a constantly changingfaçade. Only funny (constructive)material can be posted.

• Transform a stainless steel trolley into ahumour cart. Use creativity to dress itup – a mobile giraffe, perhaps? Leaveroom for props that can be available forplay. Over the course of a busy day,brief humour and play interventions arethe way to go.

• Similarly a wicker play basket sitting inthe corner can be loaded with greatperiod hats, scarves and other objects,which can be picked up by residents orcarers on the way from A to B.

• Take photographs. Many residentshave photos of the past. How about aphoto in the present?


Introducing more humour into daily aged care

The LaughterBossSMILE graduates, withProfessor HenryBrodaty at the top left



which staff members attend training in humourintervention skills with a visiting professionalClownDoctor. This became known as theLaughterBoss model and was introduced at TheFirst National Conference on Depression in AgedCare: “Challenging depression in aged care” hostedby HammondCare at the University of NSW,Sydney, Australia in June 2003.The LaughterBoss is a modern day court jester.The main role of the LaughterBoss is to bring play,humour and laughter into the residential facility.The LaughterBoss aims to reduce staff stress andimprove morale as well as assist staff to enhancequality of life for people with dementia, reducedepression and meet the psychosocial needs of theresidents. This is done through assistingcommunication, increasing emotional support,giving residents cognitive control, providingpositive diversion and generally improving themood around the nursing home. While the mainfocus of the LaughterBoss is on the residents, staff,visitors and the general community have oftenreported a positive impact.The ideal candidates for LaughterBoss trainingare RACF staff members who have an intimateknowledge of the people (residents, staff andfamilies) and a thorough understanding of theenvironment and culture of the facility. TheLaughterBoss is not a specific member of staff – theycan be a registered nurse, an assistant in nursing, adiversional therapist, an activities co-ordinator or amember of the care staff. LaughterBossescompleting training receive a certificate stating thatthey are now ‘certifiable’.Training does not make the LaughterBoss aprofessional performer. They keep their ‘day job’ aswell as emerging as a new identity in the facility,

which not only reduces costs, but which alsoaddresses and enhances recommended multi-disciplinary interventions. They should be easilyrecognisable and be available to do their work as theneed arises. They also lead the way in introducinghumorous themes, special days and events.Importantly, to do their job well, the facilityLaughterBoss requires the support,acknowledgement and blessing from management.Complementary to the LaughterBoss role is theposition of Elder Clown. Working in partnershipwith LaughterBosses, Elder Clowns are skilledprofessional performers auditioned, trained andexperienced with clowning in care settings wherepeople have different levels of physical, emotionaland cognitive abilities and needs. The Elder Clownand LaughterBoss play off each other non-threateningly while building rapport and trust withresidents within and across visits. Humourintervention techniques include story-telling, mime,song, magic and slapstick. The Elder Clown is animproviser who uses the LaughterBoss to helpgather information regarding the residents’ abilities,previous history and interests. They then use theirown experience and intuition to create tailoredinteractions, or ‘plays’ that better connect with theresident. For people with dementia these plays may allowthem to act out old scripts from their past. The ElderClown and LaughterBoss keep notes after each visitto facilitate the continued development of theseinteractions over time. These notes can be used innursing and medical reviews, and may also be ofbenefit in case management reviews. TheLaughterBoss and Elder Clown are unique and newhealthcare–arts partners.This model of partnership is unique to Australia.

The Sydney Multisite Intervention of LaughterBosses and Elder Clowns(SMILE) study is the biggest study of humour therapy anywhere in theworld to date.

Researchers wanted to find out whether the anecdotal reports of thebenefits of humour therapy for older aged care residents could besubstantiated with hard evidence. The aim of the study was to examinethe effects of humour therapy on resident mood, social engagement,quality of life, agitation and behavioural disturbance.

406 residents from 36 residential aged care facilities were involved inthe study. Researchers blind to whether residents were in the usual carecontrol group or humour therapy intervention group collected datausing well-established assessment tools such as the Cornell Scale forDepression in Dementia (CSDD). Dementia-related quality of life wasmeasured with the DEMQOL resident and proxy versions, the socialengagement subscale of the Multidimensional Observation Scale forElderly Subjects (MOSES), the Cohen-Mansfield Agitation Inventory(CMAI), and the Neuropsychiatric Inventory Nursing Home version (NPI).Demographic, clinical and observational information were also collectedat baseline (that is, before the intervention), after the 12-weekintervention, and again at 26 weeks.

Residential aged care facilities were randomly allocated to either humourtherapy or control groups. The humour therapy intervention comprisedone-day training on how to incorporate humour into daily care for a staff

member nominated by the facility to act as their LaughterBoss. ElderClowns (performers experienced in using humour in health care settings)visited once per week for 12 weeks, engaging in two-hour humourtherapy sessions to engage residents through music, conversation,props and other techniques. LaughterBosses partnered with ElderClowns during these visits, providing information which allowed fortailoring of interactions about resident history, personality and function.LaughterBosses were encouraged to continue use humour techniquesbetween Elder Clown visits and after these sessions had ceased.

The first papers from the SMILE study have been submitted forpublication. Observational data and staff reports show that residentsenjoyed the humour therapy sessions and were happy and engagedduring the sessions. The results also suggest that humour therapydecreased agitation compared with controls. LaughterBosses alsoreported benefits of participating in the program, including increasedstaff morale, more laughing and better communication at work betweenstaff, and better knowledge of residents. Researchers were also toldanecdotal stories of individual resident responses to the program, suchas residents beginning to talk again, or residents whose depressionlifted significantly during the program. Researchers are using the resultsto improve our knowledge of how to administer humour therapy andhow to judge its effects on people with dementia.

Dr Lee-Fay Low

About the SMILE Study

ReferencesAssociation for Applied andTherapeutic Humor (2001),What is therapeutic humor?http://www.aath.org/general-information.Celso BG, Ebener DJ,Burkhead EJ (2003) Humorcoping, health status, andlife satisfaction among olderadults residing in assistedliving facilities. Aging andMental Health 7 (6) 438. Solomon JC (1996) Humorand aging well: A laughingmatter or a matter oflaughing? AmericanBehavioral Scientist 39 (3)249 Svebak S, Kristoffersen B,Aasarod K (2006) Sense ofhumor and survival amonga county cohort of patientswith end-stage renal failure:a two-year prospectivestudy. International Journalof Psychiatry in Medicine36(3) 269-81.Takeda M, Hashimoto R,Kudo T, Okochi M, TagamiS, Morihara T, Sadick G,Tanaka T (2010) Laughterand humor ascomplementary andalternative medicines fordementia patients. BMCComplementary andAlternative Medicine 2010.www.biomedcentral.com/1472-6882/10/28.




In overseas models, clowning performers work inpairs, but they don’t have the kind of workingpartnership with health staff that exists between theLaughterBoss and Elder Clown. The LaughterBossreceives weekly input from visiting Elder Clown asthey work together. During the rest of the week theLaughterBoss works alone, implementing their ownnew humour therapy interventions and/or buildingon interventions initiated by their Elder Clownpartner. This means that for an RACF, there is notonly the occasional visitation by a pair ofperformers, but rather, that humour-based therapyis integrated into the RACF and the lives of theresidents.For optimum results, and to maintain humour,fun, creativity and some mischief around thenursing home, the Elder Clown visits should takeplace once a week for three months, and thenfortnightly. This model helps to make the programmore financially viable for aged care facilities.

The partnership in actionOn arrival at the RACF, the Elder Clown meets withthe LaughterBoss before they start their roundstogether. This time is used to discuss the profile andget an update of the resident with dementia theywill be visiting. Entries about humour therapyinterventions made in the resident’s notes will alsobe reviewed. Choice of plays, music, costuming andother factors will be discussed. The Elder Clown isgenerally the principal performer in the session,with the LaughterBoss assisting and joining in theinteraction as appropriate. There are opportunitiesfor the LaughterBoss to take the lead role. De-briefing, including note taking, takes place at theend of the session. Concepts for taking the humour

therapy forward for the next week are proposed.The practice is co-operative and reflective.Pairing the Elder Clown with the LaughterBosshas multiple benefits:• for the LaughterBoss, this will reinforce andaugment their humour training, and give themideas to try when the Elder Clown is not present• for the Elder Clown, they will be working with astaff member who knows the residents well andwhom the residents trust, facilitating building of arelationship with the Elder Clown• for the resident, it means that the Elder Clowninterventions are sustained by the LaughterBoss.

ConclusionFrom the point of view of the Elder Clowns thebenefits of laughter and humour on people withdementia are clear. Caring for people with dementiais stressful and demanding , and as aged care inAustralia continues to move towards person-centered care, there is an increasing appreciation ofthe role of humour in improving the lives of peoplewith dementia. SMILE is a three-year NH&MRCfunded study, and is a world first randomisedcontrol trial looking into the effects of humour,laughter and play on people with dementia inRACFs. The results of the research are being broughtto the attention of practitioners across Australia in aseries of knowledge transfer workshops beingpresented by the Dementia Training Study Centresand the UNSW Dementia Collaborative ResearchCentre. Together, professional performers,partnering and working together with health carestaff, will make a palpable difference to the difficultjourney for residents, families and staff – the ‘Art ofMedicine’ at work. �

Above: Professor Richard Fleming (holding rubberchicken). Right: Care Manager Mark



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Under-assessed and under-treated:chronic pain management of peopleliving with dementia has a troubled

history. Studies tell us that somewherebetween 18 per cent and 89 per cent ofthose with dementia experience chronicpain (McAuliffe et al 2009). The imprecisenature of those figures is in itselfconcerning, but accurately assessing theextent of the problem is very difficult dueto the symptoms of dementia itself. Whatwe do know for certain is that the risk ofpain increases as we age, and that peoplewith dementia remain extremelyvulnerable to misdiagnosis. Too often,pain goes undetected or is inadequatelymanaged in people with dementia.The problem is that someone with

dementia is less likely to be able toarticulate the location, type or degree ofpain. This alone demands a fundamentalrethink in the way care is provided. Thereliance on non-verbal cues to assess painrequires a high level of appropriate skillsand knowledge related to noticing andaccurately interpreting these cues.A recent development is challenging

the status quo via a series of targetedtraining modules aimed at betterassessment of pain in people withdementia. The genesis of the initiativewas a literature review conducted byProfessor Rhonda Nay, Dr DeirdreFetherstonhaugh, Megan O’Donnell andLinda McAuliffe from the VictorianDementia Collaborative Research Centres(DCRC). Pain assessment in older peoplewith dementia: literature review waspublished in 2009, and highlighted thecomplexities associated with treating painin older people with cognitiveimpairment. In particular, it identified theobstacles to effective pain assessment andmanagement, as well as the strategiesneeded to overcome those obstacles.Towards the end of 2010, ‘Pain

assessment in older people withdementia: literature review’ (PAD) wasnominated by Professors ElizabethBeattie and Rhonda Nay for KnowledgeTranslation (KT) by the DCRC team, ledby Dr Tom White. The aim was to equipstaff on the front line of dementia carewith the latest research on painprevalence in people with dementia andthe treatment of pain, using a formatmost likely to bring about changes inpractice. The result has been that 18months down the track, the painassessment and management learningmodules are being rolled out across thecountry. Using the PAD review as a

springboard – and incorporating acombination of power point slides,photos, handouts and presentation notes– the training modules have been shapedto meet the needs of nursing and healthpractitioners working across the fullrange of dementia care settings.An updated dementia e-learning

program is currently being implementedin acute care hospitals in NSW,integrating the best resources from acrossthe country with the aim of creating acomprehensive national e-learningpackage. At the same time, an in-servicecourse designed for the eight-membernetwork of Dementia BehaviourManagement Advisory Services(DBMAS) is focused on helping their staffimprove pain assessment in the nation’sresidential aged care facilities (RACF).The emphasis is on creating practical

outcomes in regards to painmanagement, which in itself hasdemanded widespread consultation. Theprogram designers talked individuallywith each DBMAS, and through thoseconversations, decided on what best suitstheir particular circumstances. Whenasked about the breadth of theundertaking, Dr White said: “We neededto think in terms of the people using theresearch, find out what their needs wereand put it in a form that was usable. EachDBMAS is different and there needed tobe flexibility so that the presentationcould be adjusted to fit any setting. In asense it was being customised for everysituation.”

Recognising pain Both the PAD review and KT projectacknowledge one of the key obstaclesfacing dementia care is recognising theexistence of pain. Evidence suggests thatnursing staff may be predisposed bytheir training to attribute distressingbehaviour by people with dementia topsychological symptoms rather than lookfor alternative causes.The danger of this default position was

underlined by a joint British-Norwegianstudy (Husebo et al 2011) which suggestedthat agitation in non-verbal people withdementia, often attributed to Behavioural

and Psychological Symptoms of Dementia(BPSD), might in fact be an expression ofundiagnosed pain.Reported by the BBC in July last year,

the study was conducted across nursinghomes in Norway and raised seriousquestions about the reliance on anti-psychotic drugs in treating people withdementia. Importantly, the study foundthat the use of simple painkillers reducedagitation symptoms by as much as 17 percent over an eight-week period andcould significantly reduce thedependence on anti-psychotics whichexacerbate pain and carry the risk ofserious side-effects.With an estimated 150,000 UK patients

needlessly prescribed anti-psychotics, itis perhaps not surprising that theChairman of the National CareAssociation, Nadra Ahmed, describedthe recognition of the link between painand agitated or aggressive behaviour inpeople with dementia as a “majorbreakthrough”.Certainly those behind the DCRC KT

project are acutely aware of the problemof unnoticed pain in people withdementia. This is illustrated in a series oftroubling photographs of injuries,incorporated into both the e-learning andin-service programs. Taken by CathyEdgar, a Clinical Nurse Consultantspecialising in pain assessment, thephotos capture severe ulceration ondementia patients where pain was clearlypresent but not recognised or treated.According to Tom White such

oversight demonstrates a fundamentalmisunderstanding of both pain anddementia, which enables trained staff toobserve serious wounds and yetconclude that no pain exists. Nursesquestioned about the lack of painassessment for a patient pictured,characterised the presence of “moaning”as a symptom of dementia rather than aresponse to some underlying cause.Tom White added: “In one of the

photos a person’s heel is entirely gone,yet they were never assessed for pain. Asa result of that wound they died afortnight later. So the question is, howlong were they in pain?”

Pushing past the pain barrierKathy Stone reports on new training modules

designed to improve identification, assessment and

treatment of chronic pain in people with dementia

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“I think we have to consider the factthat because these people are non-verbal,staff may assume there is no pain. Thatthe UK study showed agitation decreaseswith use of painkillers should be a hugeflashing sign about the importance ofassessing pain before undertaking BPSDtreatment.”

Overcoming the barriers to pain assessmentThere are several key obstacles toeffective pain assessment detailed in thePAD review and taken up by the KTproject. These are divided into two sub-groups: those barriers pertaining to staff– for example the inability to recognisepain, insufficient training, misdiagnosisor late diagnosis and failure to useappropriate assessment tools – and thosebarriers particular to older people withdementia, such as difficulty indifferentiating between types of pain anda desire not to complain.The strategies for overcoming these

problems are often deceptively simple.For example, taking the time and gettingto know a non-verbal person withdementia increases the likelihood ofrecognising their pain cues. Otherstrategies include: applying intuitiveknowledge derived from a diversity ofclinical experience; improving staffeducation and training; using acombination of pharmacological,cognitive, physical and alternativetherapies; and implementing objectivepain assessment tools. The PAD reviewconcluded that comprehensive educationand training in detecting pain was apriority, along with effective painassessment tools specifically developedto deal with all stages of dementia.Older people with dementia may

express discomfort through facialexpressions, body movements,

verbalisations, changes in interpersonalinteraction, alteration in normal routinesand change in mental status. Frowning,grimacing, grunting, fidgeting, changesin sleep patterns, crying and irritabilityare some of the pain behaviourscommonly observed by staff. Earlyrecognition of these behaviours and signsis crucial in identifying instances ofchronic pain.Critically, there are no quick fixes when

it comes to assessing pain in a personwith dementia. Opinions vary as to thelength of time (from one week to threemonths) a nurse may need to becomesufficiently familiar with a person torecognise pain signals. Thereafter,regular reassessment and evaluation isrequired until the pain is effectivelytreated.While it takes time to know a person

well enough to feel confident in detectingsubtle changes in behaviour or personalhabits which may be symptomatic ofunderlying pain, the use of skilledobservation and an understanding ofnon-verbal communication will improvepain recognition and treatment in thosesettings where the length of stay is short,such as emergency departments andacute care.A key factor in achieving successful

outcomes is the use of pain assessmenttools. The KT learning modules takeparticipants through the range of painmeasurement scales available, includingdementia-specific assessment tools thathave been shown to enhance painmanagement for people who are non-verbal.Clearly, though, this is a time intensive

approach that faces challenges in the wayit is implemented. The move towardstemporary and agency staff in RACFscoupled with significant levels of staffturnover are likely to hinder successfulpain assessment programs. The PADreview notes: “Greater workforcestability is therefore required for staff tobe able to know and work consistentlywith individual persons so that they canincrease the success of the detection,assessment and ultimately the treatmentof pain in older adults with dementia.”“The critical success factor, based on

the research, is knowing the personwell,” Tom White said. “Some RACFsallow eight days to assess for pain andhospitals are not set up for that. On theother hand, the high turn-over of staff inRACFs presents its own barriers tosuccessful pain assessment.”Many of the questions surrounding

pain assessment tools concern the lengthof the process. The usual response to thepresentation of assessment tools is: “Did

I hear that right? Do you really have toassess every four hours after pain isdetected until it goes away?” There isalways that element of surprise.Nevertheless, making the effort upfrontcan save a lot of distress and time spentin responding to behavioural andpsychological symptoms of dementiacaused by untreated chronic pain furtherdown the track.

Towards pain free careTranslating the latest dementia-painresearch into focused learning is by nomeans the end game, but it is a vitalintermediary step towards thedevelopment of care practices thathonour the dignity of each person withdementia.Growing awareness of the prevalence

of pain in people with dementia is anexcellent first step, and the level ofinterest in the training programs givescause for hope. It is early days yet forimplementation of the pain researchfindings, but there is strong focus oncreating a greater appreciation of howpain impacts on people with dementia.The obvious winners from embarking

on effective pain assessment andmanagement are those living withdementia and their families, though theripple effect extends much wider. TomWhite believes that, at the very least, itwill result in more positive end-of-lifeexperiences for people with dementia,reducing the trauma on patients, and theburden of care on families andprofessional carers.About 24 per cent of people admitted

to acute care in NSW hospitals havedementia, and many of those people areexperiencing undiagnosed chronic pain.Ultimately, this is an issue that engagesevery level of the health care system –from questions of staffing levels tomatters of workplace morale – but at itsheart, it remains a question of humanrights and the obligation on every societyto seek the pain-free care of its mostvulnerable citizens.

Please contact your DBMAS to inquire aboutthe in-service course, or direct your queries toDr Tom White at [email protected]

ReferencesHusebo B, Ballard C, Sandvik R, Nilsen O,Aarsland D (2011) Efficacy of treating pain toreduce behavioural disturbances in residents ofnursing homes with dementia: clusterrandomised clinical trial. BMJ (10.1136).McAuliffe L, Nay R, O’Donnell M,Fetherstonhaugh D (2009) Pain assessment inolder people with dementia: literature review.Journal of Advanced Nursing 65(1) 2-10.

The research guiding the pain assessmentand treatment knowledge translation workcomes from the DCRC Carers andConsumers, led by Professor ElizabethBeattie. Researchers Professor Rhonda Nayand Dr Deirdre Featherstonhaugh are basedat LaTrobe University and the associatedVictorian Dementia Training Study Centres(DTSC). The training products, Pain In-Service, and the foundation documents forDementia e-learning modules were preparedby Sharon Wall, an independent clinicalgerontologist, nurse educator and memberof the DCRC Knowledge Translation (KT)Team. The DCRC KT Team is led by Dr TomWhite, KT Specialist, who was interviewedfor this article.

Acknowledgments

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Appetite for life: what can help improve the mealtime experience?

Lynn Malloy describes her review of studies on the mealtimeexperience for people with dementia in formal care settings. Shefocuses especially on what can help mealtimes to provide ‘food for thesoul’ as much as they provide fuel for the body, and the importance ofguidance and emotional support for care staff

Lynn Malloy is anoccupational therapistcurrently working asActing Manager ofthe Haringey MemoryService, Barnet,Enfield and HaringeyMental Health NHSTrust, London, UK Mealtimes mark the rhythm of each and

every day and can be the time of greatestcontact between resident and care worker.

If Living well with dementia, the EnglishDepartment of Health’s 2009 National DementiaStrategy, is to be realised in care settings,mealtimes seem a very good place to direct someattention. In 2010 I carried out a review of studies that had

taken place over the previous ten years on‘mealtimes for people with dementia living in caresettings’. This was the final part of an MScprogramme at City University. Also, as anoccupational therapist working in mental healthservices for older people, I was interested infinding out what evidence there was from aroundthe world.Being able to feed and eat independently can be

one of the last activities of daily living that is lostwith the progress of dementia (Manthorpe &Watson 2003). Nevertheless there are risks ofmalnutrition (Berry & Marcus 2000), weight lossand dehydration (Castellanos et al 2003), and beingin formal care does not necessarily lessen theserisks. I would suggest that just as important as these

outwardly observable signs or symptoms are the‘under the surface’ consequences of not taking intoaccount the emotional and relational aspectsinvolved in taking food with others. Not only does food provide strong, pleasurable

sensory experiences, but most of us also have

strong associations and memories of sharing foodwith others, with specific meanings varying tosome degree from individual to individual andacross cultures. Food and sharing a meal is usedfor example to celebrate, commemorate, mourn,build and foster relationships and cope withfeelings (Fjellstrom 2004). Often, for an individual with dementia living in

care, these connections to past and current lifeexpressions are lost. Eggers et al (2005) looked at‘fragmented experience’ and how care staffcounteracted or inadvertently contributed towardsa fragmented experience for the person withsevere dementia. They describe how connectionsbetween experiences in the present, past andfuture become increasingly difficult to make.In this article I will focus on the five categories of

interventions that emerged from the thirteenstudies reviewed. I am particularly interested inmealtimes being a time where people cometogether – around a table or when a care workersits with an individual. And in discussing the fivethemes, I will be keeping in mind this relationalaspect to mealtimes and highlight aspects of thestudies that care settings in the UK might want toconsider putting into practice.The thirteen studies I looked at fall into five

categories: • making changes to the environment (Altus et al2002, Cleary et al 2008, Mc Daniel et al 2001,Nolan et al 2004)

• the use of music at mealtimes (Richeson et al2004, Thomas et al 2009)

• education and training of care staff (Chang & Lin2005, Suominem et al 2007)

• finding out more about the experience ofmealtimes (Chang & Roberts 2008, De Bellis et al2003, Gibbs-Ward et al 2003, Pasman et al 2003)

• a combined study looking at meal time routines,how mealtimes were experienced and care staffeducation (Mamhidir et al 2007).

Changes to the mealtime environment Four studies looked at the dining roomenvironment or how meals were served andwhether changes made a difference to how muchfood was eaten, interaction levels and/or levels ofagitation. The interventions were:

Electronic databases CINAHL, PsycINFO, British Nursing Index, MEDLINE and AMEDwere systematically searched for primary studies which reported on mealtimes, eatingand feeding difficulties for people with dementia living in formal care settings,specifically in order to understand the mealtime experience from the perspective

of the person with dementia and/or staff member, or to report the findings from anintervention aimed at improving the mealtime experience

Once the databases had been searched, the abstracts were read and assessed. Thereference sections of these papers were then hand searched to identify further studiesmissed in the electronic search. The time scale of the study meant that there was nosearching of grey literature such as conference papers and PhD theses.

The time period 2000-2010 was chosen to capture literature subsequent to a previousliterature review with a time period of 1993-2003 (Watson et al 2006).

Search strategy

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• a change in how meals were served, from pre-plated meals to self service serving bowls

• a change from individuals deciding on a day-to-day basis where they sat, to having a routineseating plan

• the introduction of a clock and a written wall-mounted notice in the dining room of whenmeals would be served

• a reduction in noise and an increase in lightinglevels.

All these studies reported positive outcomes: onparticipation and communication (Altus et al2002), on food and fluid intake (Cleary et al 2008,Mc Daniel 2001) and a reduction in repetitivequestioning about food and mealtimes (Nolan et al2004).

The mealtime experienceFour studies set out to find out more about theexperience of mealtimes from the perspective ofthe individuals with dementia and the care staff(Chang & Roberts 2008, De Bellis et al 2003, Gibbs-Ward et al 2005, Pasman et al 2003). The chosenresearch methods included participant and non-participant observation, which aimed to capturethe complexities of mealtimes. These four studies were all carried out in

settings where it was reported the majority ofindividuals required assistance to eat. As will befamiliar to readers of this article, this situationimmediately brings the care staff and resident intoa closer relationship. These studies suggest thatdirectly assisting a resident to eat presents twomain challenges for care staff. Firstly, how tobalance the ‘task’ of assisting someone to eat withthat of ‘relating’ to another human being.Secondly, the care staff’s knowledge and skillsabout dementia and the associated eating andfeeding difficulties. All but Chang & Roberts

(2008) present findings that indicate how difficultit can be to achieve a balance between the task andrelational aspects of mealtimes.

Music at mealtimesTwo studies explored the use of listening to musicduring mealtimes and the impact on calorie intakeor the percentage of food eaten (Richeson et al2004, Thomas et al (2009). The former study wasalso interested in exploring the use of music onagitation levels in residents and to explore apossible correlation between agitation and theamount of food consumed. This study developedfrom a concern expressed by staff at the levels ofagitation at mealtimes. The two studies contrasted in how they chose

the music to be played. Richeson et al (2004)played ‘soothing music’ chosen by the staff.Thomas et al (2009) played music that reflectedfavourite music styles of the residents. Bothstudies report positive findings and aimed to buildon previous studies into the use of music atmealtimes. These earlier studies, Goddaer et al(1994), Ragneskog et al (1996) and Denny (1997),were preliminary and invited furtherinvestigation.

Education and training Two studies looked at the effects of staff education:a feeding skills training programme (Chang & Lin2005) and the nutrition education (Suominen et al2007). Both studies collected data to show theeffects on the staff involved in the study and onthe individuals with dementia. The resultsregarding food and calorie intake are different foreach study. Chang & Lin found no differencebefore or after the intervention. Suominen et alreport a sustained increase in calorific intake atone year post intervention. There are a number ofpossible reasons for this different outcomeincluding the level of difficulty individualsexperienced at mealtimes and how muchassistance they required. Also Suominen et alreport that they employed an education theoryand reflective practice model. There are cleardifferences between these two studies in educationstyle and emphasis on peer learning,multidisciplinary discussion and reflection.Embedding of the learning in the Suominen et alstudy may be reflected in their study outcome of asustained increase in calorific intake.

Combined studyThe final study in the review explored weightincrease, an alteration in meal routine and an‘integrity promoting care’ educational element(Mamhidir et al 2007). The study reports an increase in residents’

weight following the education programme and acorrelation between weight increase and improvedintellectual functioning. It is difficult to separateout whether the change in intellectual functioningmight in fact be due (or partly due) to the differentcare culture. Mamhidir et al (2007) also reportincreased interaction between staff and residentsfollowing the education programme which

Directly helping a resident with dementia to eatpresents challenges for staff, both with the physicaltask and relational aspects.


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possibly lends credence to the suggestion abovethat the change in care culture has an impact onaspects other than a resident’s bodily weight. Thisstudy also incorporates the change fromindividually plated meals to ‘help yourself’serving bowls on the dining tables, similar to Altuset al (2002). This environmental change immediately

provides the setting for more interaction in the actof sharing and possibly cooperating. The servingbowl seems to symbolise an act of faith on the partof the staff that residents (with support whererequired) will know how to respond. To make thisleap from serving plated food to a more facilitativestyle requires the staff to change their perspectiveand approach.

Strength of the study resultsOverall the strength of the evidence from thestudies reviewed was variable. Some used verysmall sample sizes, limited statistical analysisand/or consideration of confounding variables.There was however a significant number ofstudies that collected qualitative data asrecommended in an earlier literature review(Watson & Green 2006).

Implications for practice

Changes to the dining room environmentThe findings of this literature review suggest thatthere are environmental interventions that canmake a contribution to creating a better mealtimeexperience for people with dementia: • listening to music• displaying a clock and orientation notice board • having a routine seating plan • using serving bowls in place of pre plated meals. None of these interventions require significant

sums of money, so in terms of resources theyshould be within reach of the majority of settings.However, what this review has also found is thatinterventions can be more effective when staff areappropriately supported in implementingchange. Care staff can express frustration with the status

quo of their work settings, but there may also bean unspoken, perhaps unacknowledged,ambivalence about changes which increaseinteraction between residents and care staff.

The task and relational elementsAlthough feeding and supporting a person withdementia to eat is a concrete task, it takes placewithin the context of a relationship – the personwith dementia who is increasingly challenged bythe effects of dementia on their comprehensionand engagement with the world and the careworker who is spending time with someone whois going through this experience. Under theseconditions, the way in which the care workermanages their emotions will have a psychologicalimpact on the person with dementia. In previous UK JDC articles, Morton proposes a

model which builds on Kitwood’s interpersonal,person-centred approach by introducing the ‘thirddimension’ of intrapersonal dynamics (Morton2007a). This model refers to the emotional level ofexperience and communication; some of whichcan be put into words and some of which remains‘under the surface’. For someone with dementiawho is finding it increasingly difficult to verballycommunicate, a psychodynamic understandingsuggests that there is increased reliance on non-verbal communication (Bender et al 1997,Davenhill 2007, Malloy 2009). To stay ‘inrelationship’ with the other person, the careworker is therefore challenged on an emotionallevel. This needs to be acknowledged andsupported by the workplace.

Providing containmentClear leadership in both modelling good practiceand in creating a particular culture within a settingwas also noted as significant in some of thestudies. Supporting good practice and initiatingchange requires management skills. There is aknowledge and skills element, a social elementand an emotional/relational layer. To hold allthese in mind is challenging, and ‘containing’leadership and management is key. Containmentis a concept from psychodynamic theory and hasbeen discussed in the context of dementia care by anumber of clinicians including Balfour (2007)Morton (2007b; 2008) and Waddell (2002). For a care worker in a dementia care setting, a

sense of containment can be provided by:• a manageable work load, with a clear role andthe necessary skills and knowledge training

• having their needs as a care worker understood,on emotional, physical and psychological levels

• having a sense that their manager/supervisor isthoughtful about their work and holds the‘bigger picture’ of the care setting over time.The more contained a staff group, the more

capacity they will have to work sensitively andthoughtfully with the individuals with dementiain their care. Structures and interventions for care staff, to

keep the right balance between a task orientatedand a relational approach, can include clinicalsupervision and group reflective sessions, asdescribed by Davenhill (2009), which places anemphasis on the emotional aspects of workingwith individuals with dementia. My review suggests that practice development

training and education specifically around eating

Mealtimes are a multilayered experience, forthe individual with dementia and the carestaff. How care homes or dementia unitsestablish a culture which supports staff willsignificantly impact on how effectivelymealtimes enhance well-being for theresidents with dementia


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and feeding is enhanced through a reflectiveelement provided by keeping diaries and/orsmall group discussion. Leadership andstructures to support reflective practice can allcontribute to containing the inherent anxietiesthat staff will inevitably be exposed to in theirwork. Lintern et al (2000) put forward a strongargument that “training is not enough to changecare practice”.

Assessment of eating and feeding difficultiesThis review identified a tendency to not formallyassess eating and feeding difficulties. This bothreinforces a generalised attitude to individualswith dementia and means that interventions, aparticular approach or the need for a referral for aspecialist assessment (to occupational therapy orspeech and language therapy) is not considered.The whole area of maintaining an individual’sskills through adapting the immediateenvironment, diet, seating, eating utensils and

approach requires a multidisciplinary approachwhich settings need to know how to access.

ConclusionIn the combined study by Pasman et al (2003)outlined above there is a quote from a member ofthe care staff who describes how she “takes to heart”whether a resident eats or refuses the food that she isoffering. I think this offers another insight into theemotional and relational layer of mealtimes, whichcan become obscured by an over emphasis on eatingand feeding being purely functional tasks.Mealtimes are a multilayered experience for theindividual with dementia and the care staff. Howcare homes or dementia units establish a culturewhich supports staff will significantly impact onhow effectively mealtimes enhance ‘well -being’ forthe residents with dementia. This article was first published in the UK Journal ofDementia Care 19(6) 35-38.

References

Altus DE, Engelman KK, Mathews RM (2002)Using family-style meals to increase participationin persons with dementia. Journal ofGerontological Nursing 28 9.

Balfour A (2007) Facts, phenomenology andpsychoanalytic contributions to dementia care. In:Davenhill R (Ed) Looking into later Life – apsychoanalytic approach to depression anddementia in old age p237. Karnac, London.

Bender MP, Cheston R (1997) Inhabitants of a lostkingdom: a model of the subjective experiences ofdementia. Aging and Society 17 513-532.

Berry E, Marcus E (2000) Disorders of eating in theeldely. Journal of Adult Development 7(2) 87-99.

Castellanos VH, Silver HJ, Gallegher-Allred C,Smith TR (2003) Nutrition issues in the home,community and long term care setting. Nutritionin Clinical Practice 18(1) 21-36.

Chang C, Lin L (2005) Effects of a feeding skillstraining programme on nursing assistants anddementia patients. Journal of Clinical Nursing 141185-1192.

Chang C, Roberts BL (2008) Culturalperspectives in feeding difficulty in Taiwaneseelderly with dementia. Journal of NursingScholarship 3 235-240.

Cleary S, Hopper T, Forseth M, Van Soest D(2008) Using routine seating plans to improvemealtimes for residents with dementia. CanadianNursing Home 19(3) 4-10.

Davenhill R (2007) No truce with the furies: issuesof containment in the provision of care for peoplewith dementia and those who care for them. In: RDavenhill (Ed) Looking into later life;psychoanalytic perspectives on depression anddementia in old age. Karnac, London.

Davenhill R (2009) Psychodynamic observationand emotional mapping. A tool for continuingprofessional development and research in servicesfor older people. Quality in Aging 10(1) 32-37.

De Bellis A, Willick C, Mitchell P (2003) Food forthought: residents with dementia who requireassistance with eating and drinking. Geriatrician21(3) 5-10.

Denney A (1997) Quiet music: an intervention formealtime agitation? Journal of GerontologicalNursing 23 16-23

Department of Health (2009) Living well withdementia – a National Dementia Strategy. DH,London.

Eggers T, Norberg A, Ekman S (2005)Counteracting fragmentation in the care of peoplewith moderate and severe dementia. ClinicalNursing Research 14(4) 343-69.

Fjellstrom C (2004) Mealtime and meal patternsfrom a cultural perspective. Scandinavian Journalof Food and Nutrition 48 161-164.

Gibbs-Ward A, Keller HH (2005) Mealtimes asactive processes in long term care facilities.Canadian Journal of Dietetic Practice andResearch 66(1) 5-11.

Goddaer J, Abraham L (1994) Effects of relaxingmusic on agitation during meals among nursinghome residents with severe cognitive impairment.Archives of Psychiatric Nursing 1 150-158.

Malloy L (2009) Thinking about dementia – apsychodynamic understanding of links betweenearly infantile experiences and dementia.Psychoanalytic Psychotherapy 23(2) 109-120.

Mamhidir AG, Karlsson I, Norberg A, Kihlgren M(2007) Weight increase in patients with dementia,and alteration in meal routines and mealenvironment after integrity promoting care.Journal of Clinical Nursing 16 987-996.

Manthorpe J, Watson R (2003) Poorly served?Eating and dementia. Journal of AdvancedNursing 41 162-169.

McDaniel J, Hunt A, Hackes B, Pope J (2001)Impact of the dining room environment onnutrional intake of Alzheimer’s residents: a casestudy. American Journal of Alzheimer’s Disease

and other dementias 16(5) 297-301.

Morton I (2007a) Psychoanalysis and dementiacare: towards a new relationship. Journal ofDementia Care 15(5) 30-31.

Morton I (2007b) Psychoanalysis and dementia:understanding disturbance and distress. Journalof Dementia Care 15(6) 18-20.

Morton I (2008) Psychoanalysis and dementia:the dynamics of care. Journal of Dementia Care16(1) 29-31.

Nolan BAD, Mathews RM (2004) Regardingmeals in a special care unit: an environmentaldesign intervention. Journal of GerontologicalNursing 30(10) 12-16.

Pasman H, The B, Onwuteaka-Philipsen B, vander Wal G, Ribbe M (2003) Feeding nursing homepatients with severe dementia: a qualitative study.Journal of Advanced Nursing 42(3) 304-311.

Ragneskog H, Kihlgren MI, Norberg A, Gerdner L,Buckwater K (1996) Dinner music for dementedpatients: analysis of video recorded observations.Clinical Nursing Research 5 262.

Richeson N, Neill D (2004) Therapeutic recreationmusic intervention to decrease mealtime agitationand increase food intake in older adults withdementia. American Journal of RecreationTherapy 2004 (Winter) 37-41.

Suominen MH, Kivisto SM, Pitkala KH (2007)European Journal of Clinical Nutrition 61 1226-1232.

Thomas DW, Smith M (2009) The effects of musicon calorific consumption among nursing homeresidents with dementia of the Alzheimer’s type.Activities, Adaptation and Aging 33 1-16.

Waddell M (2002) Inside lives: psychoanalysisand the growth of the personality. 2nd edition p248-249. Karnac, London.

Watson R, Green S (2006) Feeding andDementia: a systematic literature review. Journalof Advanced Nursing 54 25-32.


R E S O U R C E S & E V E N T S


ResourcesBook review

Events

� Maintain your brain: What you can do to improveyour brain’s health and avoid dementia

Dr Michael Valenzuela • $27.99 • 2011 • ISBN 9780733330223

A book written by a researcherrecognised as the top-rankedNHMRC Research Fellow in2010-11 by the AustralianGovernment National Healthand Medical Research Councilmight well be expected to be aheavy read. However, DrMichael Valenzuela exploresthe complexities of the causesof dementia in a way thatclarifies the issues, informs usof current debates and conveysan excitement about the fieldthat leaves the reader feelingrefreshed.Having reviewed the

definition of dementia and thecharacteristics of Alzheimer’sdisease and vascular dementia,Valenzuela lays a firmfoundation for the advice heprovides on how we canreduce the chances ofdeveloping dementia. He leadsthe reader to an understandingthat the distinction betweenAlzheimer’s disease andvascular dementia may not bea clear cut as was oncethought. He describes therevolutionary ideas of DrKaren Cullen of the UniversitySydney, which explains theplaques associated withAlzheimer’s disease as beingthe result of microbleeds. Ifthis idea turns out to be

correct, the traditional beta-amyloid cascade hypothesiswill no longer be tenable andthe focus of anti-Alzheimer’sdisease drugs will need to turnto combating microvasculardisease rather than plaqueformation.The book continues with a

range of well explained,evidence-based suggestionsfor maintaining healthy bloodcirculation. These includeeating the right foods preparedin the right way and managingcholesterol levels.Valenzuela then takes up the

old adage that we need to ‘useit or lose it’. Drawing on 40years of evidence frombehavioural science, heexplains the benefits of anenriched sensory environmentand goes on to link this withpractical advice on exercisingour minds and bodies.This book pulls together a

wealth of research findingsand practical advice. It offerssomething of interest toeveryone interested inreducing their own chances ofdeveloping dementia or incaring for others who needadvice and support.Richard FlemingProfessorial Fellow,University of Wollongong

Frontier Services NT Dementia Behaviour Management Advisory Service(DBMAS) has developed Dementia: Things to do, a new resource thatprovides activity ideas for carers of Indigenous people with dementia. It wasdeveloped after consultation with cultural advisors and feedback from focusgroups held in remote communities where care was already being provided.The resource is appealing and full of bright, colour photographs taken inWugularr. It explains the symptoms of dementia, the importance of providingactivities for people with dementia, and offers communication tips and ideasfor carers. Some of the hands-on activities listed include going back toCountry, collecting bush tucker, bush aromatherapy, painting and weaving,storytelling and physical activities and games such as chair football andboomerang golf. The resource was funded by the Department of Health andAgeing Dementia Community Grant 2009, and it should go a long way inhelping carers in remote Indigenous communities improve the quality of lifefor people living with dementia. Judy Ratajec, DBMAS Program Manager,said: “We all need to have purpose and meaning in our lives. Providingactivities for a person with dementia gives them back some meaning; toactually be involved in something gives them that purpose back.”For more information contact www.frontierservices.org or tel 1800 699 799.

The Dementia Training Study Centres (DTSC) are in the process ofestablishing a national website. When completed it will provide access to allof the resources developed by the five DTSCs. At the moment there areDVDs, workbook and manuals available on caring for Indigenous peoplewith dementia in remote areas, person-centred care, general dementiaknowledge, palliative care and living with dementia. Access these and moreat: www.dtsc.com.au/category/resources/

The Dementia Foundation for Spark of Life has launched a new website atwww.dementiafoundation.org.au. The Foundation is now activelyfundraising to offer grants for practitioners to train in the Spark of Life approach.

FinerDay, a new reminiscence therapy-based website, has been launched.The site offers free reminiscence and activity resources, as well as a hub forrecording life history and communicating with friends and family online. Thesite is set out in an easy to use format and can be used in individual orgroup sessions. View FinerDay at: www.1finerday.com

The new I CAN! I WILL! website (see: www.alz.co.uk/icaniwill) hosted byAlzheimer’s Disease International, aims to be an ‘ideas library’ for dementia.The site is aimed at everyone with an interest in dementia – people livingwith dementia, family carers, campaigning groups and professionals – andinvites anyone to contribute ideas on raising awareness and care andsupport for people with dementia.

The Bradford Dementia Group has posted a video on YouTube whichexplains about dementia care mapping (DCM) and how Bradford DementiaGroup training is able to help improve dementia care in the UK and beyond.View the video at http://tinyurl.com/6ganm4

� 29-31 MaySpark of Life Practitioners Course Three-day course to become aSpark of Life practitioner (one-day introduction also available on 29th) inSydney. Sponsored by and held at the Kirribilli Club. For details:[email protected]

� 5-7 JuneBehavioural and Psychological Symptoms of Dementia:Using Evidence to Inform and Lead Change

One-day Knowledge Transfer Master Class. Brisbane (5 June) and Cairns (7June). Joint initiative between the Queensland Dementia Training Study Centreand Dementia Collaborative Research Centre: Carers & Consumers. Fordetails, email: [email protected] or call (07) 3138 0071.

� 13 JunePerson-centred care

One-day Master Class in Sydney. Presented by the Aged Care Standards and accreditation agency. To register, visit:http://www.accreditation.org.au/education/person-centredccare/

� 14 JuneKnowledge Transfer workshops

One-day involved workshops on pain management, humour, assessingdementia in people with a CALD background and understanding dementiaamongst indigenous Australians. Presented by leading researchers, hosted bythe WA Dementia Training Study Centre in Perth. For details, email:[email protected]

� 27-29 JuneRisky Business 2012: International Dementia Partnership

Three-day conference in Sydney. Hosted by the International DementiaPartnership of The Dementia Centre, HammondCare and the DementiaServices Development Centre, University of Stirling. To register, please visit:http://dementiaconference.com/, call Michelle Andrew on (02) 8788 3081, oremail: [email protected]

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Research FocusThis section aims to provide a channel of two-way communication between researchers andpractitioners in the expanding field of social, psychological and nursing research in dementiacare, including all aspects of nursing and care practice, communication and the environment.

Looking and thinking locally is avaluable exercise if we want to betterunderstand the everyday lives of

people with dementia and their carersand the kinds of help and support thatthey draw on. In this article we outlinethe main findings from a study A placecalled happiness? Networks, neighbourhoodsand informal dementia care thatinvestigated the role neighbourhoodsplay in the lives of carers and formercarers of people with dementia. Theresearch was conducted in Salford in thenorth west of England. In this project wefocused our attention on carers of peoplewith dementia and set out to answer twomain questions:• How do carers make use of theirneighbourhood and what does it mean tothem?• How are carers and people withdementia supported locally, and whatcan be done to improve this support?

We began by holding three discussiongroups with over 30 carers from acrossSalford, recruited through carer supportgroups. These groups helped us tofamiliarise ourselves with the

neighbourhood-related issues that wereimportant to carers. We then workedmore closely with 14 carers and formercarers to better understand thesignificance of neighbourhoods for them.These 14 participants each completedtwo tasks:• Social network ‘mapping’: each carerwas given a large piece of paper andasked to depict in whatever way theywanted all the people who wereimportant to them. This was then used toguide a later interview.• Walking interviews: we asked the carerto take us for a walk around theirneighbourhood to the types of places thatthey visit and use in their everyday life,or Mobility diaries (carers who chose notto do a walking interview kept a recordof their trips outside the home over onefull week. We then interviewed themabout this record).

Our findings reveal three overarchingthemes regarding the importance ofneighbourhoods for dementia care:• the changing meanings of home• being able to get out and about• proximities.

The changing meanings of homeCarers’ feelings about the home changeas opportunities to maintain outdooractivities become more challengingMuch existing research on dementia andthe outdoor environment tends tooverlook the home. In contrast, our workreveals a dynamic relationship betweenthe domestic sphere and the worldbeyond the front door.

Carers talked of a number of ways inwhich their feelings of home havechanged as a result of the presence ofdementia: of the ways in which theillness has altered future plans, such asdecisions to move house or evenemigrate. The meaning of the home alsochanges for friends and relatives. Somecarers talked about how they sensed areluctance in friends and family to callround as frequently as they hadpreviously, especially if unannounced,and of not staying for as long when theydid visit. While this may be because of �

What does ‘neighbourhood’ meanfor carers of people with dementia? Richard Ward, Andrew Clark and Matthew Hargreavesoutline the findings of a study that looked at how carers ofpeople with dementia relate to their neighbourhood, andthe implications for improving local support

This Research Focus section of the Australian Journal of Dementia Care aims to keepreaders up to date with the fast expanding field of social, psychological and nursingresearch in dementia care. By this we mean every aspect of person-to-personcommunication, nursing and care practice and organisation, and the influence of allaspects of the environment. The aim is to provide a channel of two-waycommunication between researchers and practitioners, to ensure that researchfindings influence practice and that practitioners’ concerns are fed into the researchagenda.

Each Research Focus will include a comprehensive review by a leading expert of significant research in a subject area.

We would like to hear from you, specifically with the following:

� notice of the publication (recent or imminent) of peerreviewed papers with practical relevance to dementia care;

� research reports available for interested readers;� requests or offers for sharing information and experience inparticular fields of interest.

Richard Ward is a Project Worker, School ofNursing, Midwifery and Social Work,University of Manchester/GreaterManchester West MH NHS FoundationTrust, UK; Andrew Clark is a Lecturer inSociology, School of English, Sociology,Politics and Contemporary History,University of Salford; Matthew Hargreavesis a postgraduate student, Manchester Schoolof Architecture, Projects [email protected]

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� difficulties in accommodating visitorswhen caring for someone with moresevere dementia, carers also sensed that,for some visitors, the house has becomeassociated with stigmatised illness thatthey perhaps choose to avoid.

Some carers felt isolated within thehome, in part because of difficulties ofgetting out, but also because of a lack ofsocial interaction with visitors to thehome.

It’s when you go home. Then you feel isolatedand you think there’s no one but you that’s inthis situation and you’ve got to keep tellingyourself ‘Oh no, I was out this afternoon’, or‘I was out yesterday’ or ‘I’m going outtomorrow or the day after and am meetingpeople who are in the same situation.’(Carer at discussion group)

Such experiences suggest that for somethe home can take on potentiallydiscomforting meanings. However,carers and people with dementia can,and do, leave the home, and place greatimportance on these trips, however brief.

Being able to get out and aboutLeaving the home is crucial for well-beingHaving a set routine of visits to particularplaces is one way of maintaining a senseof familiarity and comfort: of feeling ‘athome’ away from home. Some carersrecalled incidents when they have feltuncomfortable in unfamiliar places,having to explain the behaviour of thosethey care for, or where difficulties hadarisen with access or travelarrangements. Consequently, placesfrequented outside the home tend to bethose considered ‘safe’:

If she sees it’s nice and sunny she might wantto go out for something to do… There’s acoffee shop where we go in and the girls makea big [fuss], they love [her] you know, theythink she’s great you know, always seeing toher, and she wouldn’t know them in thestreet. (Male carer)

This ability to get out and aboutrepresents an ongoing connection with awider world that becomes increasinglyimportant to maintain, given thepotential challenges presented by ashrinking world and the changingmeaning of the home.

However, leaving the home requiresplanning. Here, our analysis suggeststwo important ideas: ‘organisedspontaneity’ and taking ‘planned risks’.Outings demand considerable ‘effort’ interms of cost, time and energy to arrangeand complete. Carers talked of thedifficulties of undertaking a seemingly

straightforward outing; for examplearranging alternative care if going aloneor ensuring the needs of the person withdementia are met if being accompanied.Consequently, while carers embark onspontaneous trips, these tend to be toplaces previously visited, or to meetfriends or relatives, often at specifiedtimes in order to make planning easier.

Carers are acutely aware of thepotential risks facing those they care forwhen leaving the home and sought toreach agreement with those they care forabout how to manage this. Often, tripstaken independently of the carer involvevisits to local shops or to neighbours’homes – to locations where carers feelsupport would be provided in anemergency. In this way, local placesbecome vital in enabling carers to limit,to a degree, the risk of the homebecoming a prison and maintaining both

their own independence and that of theperson they care for.

Recognising the potential to get out andabout may be as important as actuallydoing soMaintaining opportunities to get out andabout is important for both the carer andthe person being cared for. For instance,one carer discussed the importance of alocal venue:

We’ve got the cricket club further up which isvery functional, very good. Dave is still amember because he enjoyed cricket. He’s notable to go up, but he likes to be a member still,so it’s there in his mind that when he feels likeit he can go. (Female carer)

It is not necessarily actually going tothese places (which, practically, may bedifficult) that matters here, but rather thepossibility to do so. For carers and peoplewith dementia it is important that theworld does not just exist as a series ofphysical spaces, but also as imagined andremembered places that could be visited.Our findings suggest that the potential tovisit such places can be equallyimportant. This is particularly the case inrespect of open, green spaces and thevalue to carers of knowing that they arenearby.

The scope of neighbourhood living isshaped by questions of mobilityHaving the means to travel is importanttherefore not just for getting out, but alsofor maintaining the opportunity to do so.It is also important when carers have lesstime because of caring responsibilities:

Without the car I think I would have killedhim or walked out… I’ve got the relief ofbeing able to say, ‘Fancy going out? Come on,let’s get in the car and go for a ride’. And Ithink, ‘I’ve left the house, I’ve left thewashing and the ironing, especially thecleaning.’ It didn’t mean you were a prisonerin your own home, it didn’t make it so that‘You’ve got dementia. You can’t go out. Youdon’t know where you’re going’.(Female carer)

The car in particular is seen as asymbol of autonomy: a vehicle ofopportunity as well as movement. Carersreliant on public transport felt limited inthe scope and times they could travel,especially given the amount of work thatwent into organising trips. Even so,carers without a car frequently rely onfriends and other carers to help withtravel, so that mobility itself createsopportunities for sociability.

What does existing research say aboutneighbourhoods and dementia?Getting lost: Much early research lookingat people with dementia outside theirhome is concerned with the risk of gettinglost. For instance, McShane et al (1998)described this risk as substantial –affecting about 40 per cent of those whotook part in their study. That researchfound a strong association betweengetting lost and a subsequent move toinstitutional care, while many carersresponded to such episodes by keepingthe person they cared for at home,sometimes under lock and key.

Creating dementia-friendly environments:As thinking about dementia has evolved,so research has started to look beyondsymptoms and their effect on people’slives to consider the wider environments inwhich people live. Mitchell et al (2003)introduced the idea of dementia-friendlycities and looked at how different featuresof the urban landscape might supportpeople with dementia to get out andabout. The findings showed that forpeople with early stage dementiasometimes small alterations to things likesignage and street furniture could make abig difference in maintainingindependence.

Experience of a ‘shrinking world’: Dugganet al (2008) found people experience ashrinking world when they have dementia.This is often because they lose theconfidence to venture too far from homeand feel safest when they’re close tohome. Many people have their drivinglicence removed as a result of receiving adiagnosis and find the prospect oftravelling longer distances on publictransport quite daunting. Consequently,neighbourhood boundaries can constrictas dementia progresses.


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ProximitiesThe study identifiescomplex associationsbetween physical andsocial proximity inhow carers and peoplewith dementia fosterrelationships over timeFor carers and peoplewith dementia theexperience of ashrinking worldmeans that the peoplein closest proximityoften take onparticular importance.Staying local meansbumping into peoplewho are familiar andwho recognise them:

I used to walk roundwith (the person withdementia) and he got toknow people. He can’tremember them now, buthe does know they’refamiliar and they’ll say‘hello’, and he knowsthen he’s safe, because they’re familiarlooking… so that’s his security.(Female carer)

Seeing familiar faces maintains a senseof comfort and acts as a reminder to thisperson with dementia that he is notstraying too far from home. This linkbetween proximity and a sense of safetyunderlines the value of local connectionsand demonstrates the importance of face-to-face contact when it comes tounderstanding the type of help andcontact that people value the most. Suchcontact doesn’t have to be close orprolonged, for even fleeting exchanges ofgreetings are important in helpingsomeone to feel safe.

The role of neighbours: maintaining a polite distance A central aspect of the research is theimportance of neighbours. While somecarers know their neighbours ‘well’,these tended to be relationships ofacquaintance rather than intimacy. Theissue of disclosing the diagnosis ofdementia revealed much about suchrelationships. Carers often stopped shortof telling their neighbours about thediagnosis, in part because of the intimacyof disclosure, but also because of a fear ofgossip:

Carer: Yes his sister knows [about havingdementia]… and my friend… that’s it. Interviewer: Okay but that’s it... so you’ve

not told your neighbours? Carer: No not really no, no actually. Interviewer: I know it’s a personalquestion but can I ask you why you’ve... Carer: Well, the reason why is because Idon’t want them to spread it all over theplace. Just leave him as he is.

However, despite differing depths ofintimacy with neighbours, and attemptsto maintain relations at a distance,neighbours do become important formaintaining a ‘watchful eye’ and in timesof emergency. As well as providing thesecurity of a ‘background presence’, suchneighbourly relations are importantsources of support:

We’re all very friendly but not imposing,we’ve all had sort of jobs and work, so we’velearnt that yes we’re here for each other, butnot always bopping in and out of each other’shouses as such, we’ve got our own privacywhich is a good thing, but if any help isneeded then they’re there for you… There’s alot of older people who have been here formany, many years, so those again are alwaysthe caring people because they know yourhistory, and they’ve known our children, andthey ask about them and they understand thesituation. (Female carer)

Neighbourhoods have a collectivecapacity to help and support carers andpeople with dementiaA further aspect of note is the type ofhelp that often remains hidden and/or

undocumented in the lives of peoplewith dementia and their carers.

These were the kind of encounters thatwere unplanned and difficult toanticipate but nonetheless demonstratethat support and help exist in unexpectedplaces such as cafes, restaurants andsupermarkets. This suggests that abroader awareness and understanding ofdementia can make a positive differenceto those affected by it:

He used to go to Tesco’s a little distance fromwhere we are and various members in Tescogot to know him and of course, if they sawhim getting his shopping they’d make surehe’d put it in the bag and sort his money outand send him back home again…(Discussion group participant)

Carers spoke about their anxieties ofbecoming separated from the personthey cared for when out and about but,by staying local and visiting familiarplaces, they rely on support from familiarpeople such as shop-workers:

…and you would turn around and he’ddisappeared, you wouldn’t know where hewas and I found that going to all the sameshops, I could say to the people ‘Has myhusband been in?’ Because they were used toit and they’d say, ‘Well, if he turns up, we’llsend him to the car park.’ So I always knew,most of the time, when I got to the car park hewas there.”(Discussion group participant) �

Above: Walking interview route withimages taken by carers along the way.Left (and front cover): This contouredneighbourhood representation wasdesigned by one of the researchers andused to facilitate discussion with twocarers about places of local significance.


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� Carers surround themselves withpeople who understand dementiaMany carers we interviewed had beensurprised by how many people they hadencountered who had experience ofdementia in their own families. Oftenthese individuals took on a more activerole supporting carers. However, carersalso described friends and familybecoming distant, losing contact, oravoiding them after the diagnosis. Onecarer described how well-meaningfriends who didn’t understand dementiawould offer unhelpful advice: she foundherself having to explain things to themor defending the person she was caringfor against criticism:

I’ve got other friends, they do understand to apoint that I am busy and my lifestyle haschanged, that I’ve got a commitment to [theperson with dementia] but they don’tunderstand the dementia. So, they’reresponse is… a sort of hard factual approachto it but that is the lack of understanding ofthe dementia mind. (Female carer)

A clear message emerging from theresearch is that, while friends and familyare loved and are cherished for their helpand support, the most valued supportoften came from other carers with sharedexperiences:

We’ve all got… there’s something that bindsus one way or the other and if one hasn’t beenthrough it then the other one has. So that’squite special that. (Female carer)

This also highlights the role played byformal support services, and those whowork in them, in facilitating contact andultimately friendship between carers:

[Support group workers] interacted witheverybody, joined everybody in and theyalways found time to come and speak to youindividually within the groups at the time…the discussions we were having, theinformation we were getting, that was goodand then they always say, don’t forgetafterwards, we’ve got the quiet room ifanybody wants to speak to us one-to-one.(Female carer)

ConclusionAlthough the participants in this studylived in the same city and were of asimilar age, their experiences of theirneighbourhoods varied a great deal.Some had quite extensive supportnetworks with a diverse mix of family,friends and acquaintances, others had amore limited number of contacts. Somehad networks that stretched nationallyand internationally while others had a

closely knit group of friends and familymainly clustered nearby. Such varietymeans we must not make assumptionsabout the type of help or support that isavailable to individual carers. However,we have been able to outlinecommonalities in the nature andexperiences of support that carers foundmost helpful and meaningful.

Our findings reveal the importance offace-to-face contact for carers as a meansof maintaining a sense of independence,sociability and freedom, enabling them tofeel like individuals above and beyondtheir duties and identities as a carer.While welcome support was receivedfrom various sources, the most valuedsupport often came from fellow carerswho repeatedly provide vital informationand emotional support based onexperience. The study also revealed theimportance of the organisations andagencies that facilitate the comingtogether of carers and former-carers.

Our research also implies a cautiousoptimism. Beyond formal services andspecialist resources, those carers wespoke to described a web of support thathelps them in their daily struggle to careand maintain some semblance of a lifebeyond their front door. It is clear thatwider awareness of dementia and thechallenges it creates underpins a networkof often hidden support, reassurance,and assistance in times of need.Neighbourhoods have the capacity tocollectively support carers and peoplewith dementia in ways that we are onlyjust beginning to understand. �

� ReferencesDuggan S, Blackman T, Martyr A, Van Schaik P(2008) The impact of early dementia on outdoorlife: a ‘shrinking world’? Dementia 7(2) 191-204.McShane R, Gedling K, Keene J, Fairburn C,Jacoby R, Hope T (1998) Getting lost in dementia:a longitudinal study of a behavioural symptom,International Psychogeriatrics 10 3 253-60.Mitchell L, Burton E, Raman S, Blackman T,Jenks M, Williams K (2003) Making the outsideworld dementia-friendly: design issues andconsiderations, Environment and Planning B:Planning and Design, 30 605-32.

AcknowledgementsWe would like to acknowledge thesupport of the ManchesterInterdisciplinary Collaborative forResearch on Ageing (MICRA) whichfunded the study and Age ConcernSalford for help with recruitment. Wewould especially like to thank the 14carers and former carers who generouslyagreed to take part in the research.This article was first published in the UKJournal of Dementia Care 20(2) 33-36.

Cognitive stimulation ‘is beneficial in dementia’Cognitive stimulation therapies havebeneficial effects on memory and thinking inpeople with dementia, according to asystematic review by Cochrane researchers.Despite concerns that cognitiveimprovements may not be matched byimprovements in quality of life, the reviewalso found positive effects for well-being.

There is a general belief that activities thatstimulate the mind help to slow its declinein people with dementia. Cognitivestimulation provides people with dementiawith activities intended to stimulatethinking, memory and social interaction, inorder to delay the worsening of dementiasymptoms. In 2011, the World Alzheimer’sReport recommended that cognitivestimulation should be routinely offered topeople with early stage dementia.However, increased interest in its use indementia in recent years has provokedconcern about its effectiveness andpotential negative effects on well-being.

The review, published in The CochraneLibrary, included 15 randomised controlledtrials involving 718 people with mild tomoderate dementia, mainly Alzheimer’sdisease or vascular dementia. Participantswere treated in small groups and involvedin different activities, from discussions andword games to music and baking. Allactivities were designed to stimulatethinking and memory. Improvements wereweighed against those seen withouttreatment, with “standard treatments”,which could include medicine, day care orvisits from community mental healthworkers, or in some cases alternativeactivities such as watching TV andphysical therapy.

Those who received cognitive stimulationinterventions scored significantly higher incognitive function tests, which measureimprovements in memory and thinking.These benefits were still being seen one tothree months after treatment. In addition,positive effects on social interaction,communication and quality of life or well-being were observed in a smaller numberof the trials, based on self-reported orcarer-reported measures.

In one trial, family members were trainedto deliver cognitive stimulation on a one-to-one basis, with no additional strain onburden on caregivers reported. “Involvingfamily caregivers in the delivery of cognitivestimulation is an interesting developmentand deserving of further attention,” saidlead author Professor Bob Woods ofBangor University.

Woods B, Aguirre E, Spector AE, OrrellM. Cognitive stimulation to improvecognitive functioning in people withdementia. Cochrane Database ofSystematic Reviews 2012, Issue 2. Art.No.: CD005562. URL upon publication:http://doi.wiley.com/10.1002/14651858.CD005562.pub2


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Human trials are about to start on theskin cancer drug Bexarotene after a lot ofpublicity about the results of Americanstudies on its effects on mice. After 72hours of the drug’s administration, themice showed a significant reduction inthe amount of amyloid beta-a protein,and, when tested, showed a markedimprovement in their mental function. However, the researchers warn against

calling it a cure. Trials in mice do notnecessarily equate to success in humans.According to statistics, since 1995 therehave been approximately three hundredreports of treatments for Alzheimer’s

that work in mice, none of which haveproved successful in humans. One of thedifficulties is that scientists use youngmice with genetically modified brains,which are very different to an adulthuman brain. If Bexarotene is found towork in humans, the researchers alsowarn that while it reduces the amount ofdamage causing protein, it does notreverse any brain cell death.

Cramer PE, Cirrito JR, Wesson DW et al (2012)ApoE-directed therapeutics rapidly clear b-Amyloid and reverse deficits in AD mousemodels. Science, published online Feb 9.

Cancer drug and Alzheimer’s

Researchers from Cambridge University in the UK have made an exciting breakthroughwhich may aid in the research of neurological conditions, such as Alzheimer’s, bygrowing brain tissue from a sliver of human skin. Scientists have previously struggledto acquire cerebral cortex tissue and have relied on the controversial embryonic stemcell usage. Now, by using engineered skin cells the scientists have been able toreproduce brain development and therefore facilitate the testing of new treatments onhuman tissue. In a statement, Dr Rick Livesey of the Gurdon Institute and Departmentof Biochemistry at the University of Cambridge said, “This approach gives us the abilityto study human brain development and disease in ways that were unimaginable evenfive years ago.”

Brain cells created from patients’ skin cells. Retrieved March 19, 2012 from University of Cambridgewebsite: www.cam.ac.uk/research/news/brain-cells-created-from-patients-skin-cells/

Results of a study conducted at ErasmusUniversity Medical Centre in Rotterdam,published in the British Journal of ClinicalPharmacology, state that nursing homeresidents with dementia, who are onaverage doses of a type of anti-depressantmedication-Selective Serotonin Re uptakeInhibitors (SSRIs), are up to three timesmore likely to fall than similar people whoare not on the medication. The findingsalso stated that the risk of injurious fallsincreased if the residents were alsoprescribed hypnotic or sedative agents,such as sleeping tablets.A randomised controlled trial of more

than 300 older patients with probable orpossible Alzheimer’s disease in the UK,found that after a 3-month period of anti-depressant medication, no significantreduction in depressive symptoms whencompared with a placebo group werefound. “Depression is the leading co-morbidity in dementia. It is a cause ofgreat distress yet the treatments we useare not proven,” said Dr Banerjee,Professor of Mental Health and Aging atKings College, London.Lead author of the study, Carolyn Shanty

Sterke, said that treatment protocols needto take into account the increased risk offalling when SSRI’s are being used.Professor Henry Brodaty, of the Primary

Collaborative Research Centre, UNSW, inan accompanying editorial to the studystressed that the trial did not advocate theabandonment of anti-depressants in thesepatients. Rather, “...it raises questionswhether there are different pathogenicmechanisms at play in depression inAlzheimer’s disease,” he said.Sterke CS, Ziere G, van Beeck EF et al (2012)Dose-response relationship between SelectiveSerotonin Reuptake Inhibitors and injurious falls:A study in nursing home residents withdementia, British Journal of ClinicalPharmacology 73 1-3.

Anti-depressantmedication raisesrisk of falls

Cerebral cortex cells created

A study conducted by Ian Dreary at theUniversity of Edinburgh, UK and PeterVisscher at the University of Queenslandidentified changes to certain geneticmarkers that correlated to cognitivechanges in one quarter of the study group.Environmental factors were also taken intoconsideration. Perminder Sachdev, at theUniversity of New South Wales states “The

study confirms what he have suspected –that cognitive aging is partly geneticallydetermined – but we did not have the datapreviously to demonstrate this”.

Deary IJ, Yang J, Davies G et al (2012) Genetic contributions to stability and change inintelligence from childhood to old age, Nature482 212-15.

A study which looked at the aging anddeterioration of mental function, statesthat changes can start to occur at the ageof 45, increasing in later life. ArchanaSingh-Manoux at INSERM, Franceanalysed data collected over 10 years onover 10 000 people. His findings suggestthat the common assumption thatdeterioration occurs in old age is wrong.The study also says that deteriorationoccurs in every area of brain functionexcept vocabulary.

An editorial written by FrancineGrodstein states, “…Singh-Manoux andcolleagues have set a new benchmark forfuture research and, eventually, clinicalpractice. That is, efforts to preventdementia may need to start in adults asyoung as 45 years.”

Singh-Manoux A, Kivimaki M, Glymour MM et al(2012) Timing of onset of cognitive decline:Results from Whitehall II prospective cohortstudy, British Medical Journal 344 d7622.

Cognitive decline can start at the age of 45

Genetics may play a role in cognitive decline

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an index of articles


R E S E A R C H


Research has shown that simple testing could indicate the likelihood of developingdementia or stroke. The study involved more than 2,400 people with an average age of62+ over an 11-year period. Tests included in the study looked specifically at walkingspeed and hand grip. Results showed that those with a slower walking speed were 1.5times more likely to develop dementia. Those with a stronger hand grip had a 42 percent lower risk of stroke. Results are to be presented at the 64th annual meeting of theAmerican Academy of Neurology, New Orleans, on April 21-28. How fast you walk and your grip in middle age may predict dementia, stroke. Retrieved March 19, 2012 fromAmerican Academy of Neurology: www.aan.com/press/index.cfm?fuseaction=release.view&release=1027

UCLA neuroscientists have shown thatthey can strengthen human memory bystimulating a critical junction in thebrain. The findings, published inFebruary, could lead to a new method formemory in patients with earlyAlzheimer’s disease.Dr Itzhak Fried, Professor of

Neurosurgery at the David Geffen Schoolof Medicine at UCLA and senior authorstated, “The entorhinal cortex is the goldengate to the brain’s memory mainframe.Every visual and sensory experience thatwe eventually commit to memory funnels

that doorway to the hippocampus. Ourbrain cells must send signals through thishub in order to form memories that we canlater consciously recall.”The study involved monitoring seven

patients with epilepsy who already hadelectrodes implanted in their brain. Theresearchers monitored the electrodes torecord neuron activity as memories werebeing formed. When stimulation of thenerve fibres in the entorhinal cortexduring learning occurred the patientsdemonstrated better memory recall andcognitive ability.

“Losing our ability to remember recentevents and form new memories is one ofthe most dreaded afflictions of thehuman condition,” Fried said. “Ourpreliminary results provide evidencesupporting a possible mechanism forenhancing memory, particularly aspeople age or suffer from earlydementia.”

Suthana N, Haneef Z, Stern J et al (2012)Memory enhancement and deep-brainstimulation of the Entorhinal area, New EnglandJournal of Medicine 366(6) 502-10.

Memory boost possible by stimulating key brain gateway

Research has shown a link betweenhearing loss and dementia, though theexact pathway is unknown. Researchersat John Hopkins School of Medicine andThe National Institute on Aging in theUnited States have stated that thefindings could help in the fight againstdementia.Dr Frank Lin, MD PhD, Associate

Professor in the Department of Otology atthe John Hopkins University MedicalSchool recognised a gap in research abouthow hearing loss could affect braincognition. The study proposed that there isa possible link between the two, and thatthe brain of those with hearing loss may

become “overwhelmed” by the constantneed to strain and decode sounds.Dr Lin utilised data available in the

Baltimore Longitudinal Study on Aging(BLSA) and specifically 639 volunteerswho were tested every one to two years.At the start of the study 25 per cent ofvolunteers had some degree of hearingloss, but none had dementia. By 2008, 58volunteers had developed dementia, andwithin that group, 37 had significanthearing loss.

Lin FR, Metter EJ, O’Brien RJ et al (2011)Hearing loss and incident dementia, Archives ofNeurology 68(2) 214-20.

Hearing loss linked to dementia

Walking speed and hand grip predict dementia risk

A team of researchers in the University of Texas led by Dr Andrea Bradford havereviewed the non-pharmacological approaches to behavioural disturbance in peoplewith dementia. The study concluded that pain management is an evidence-based, feasible, and

underused, strategy that may be incorporated with other behavioural interventions tohelp prevent aggression in people with dementia. They describe a home-basedintervention that targets community-dwelling older adults with dementia and theirhome-based caregivers.

Bradford A, Shrestha S et al (2012) Managing pain to prevent aggression in people with dementia.American Journal of Alzheimer’s Disease and Other Dementias 27(1) 41-47.

A project based at the University ofAlberta in Canada has designed a newdiagnostic tool, the Dementia PocketCard, which allows family carers andmedical professionals to collaborate onfaster, more accurate diagnoses of early-stage dementia.Led by Dr Belinda Park, the project

outlined critical factors in translatingresearch on dementia into applicableoutcomes, tools and knowledge forfamily members of people with dementiaand medical professionals. The aim wasto develop an easy to use diagnostic toolfor general practitioners. As the projectprogressed, the team recognized thatfamily members play an essential role inthe identification of early signs ofdementia, and involving family membersbecame a key outcome.The Pocket Card Tool design drew on

two studies: the Registered NursesAssociation of Ontario (RNAO) BestPractice Guideline: Screening for Delirium,Dementia and Depression in Older Adultsamd the Deterioration Cognitive Observée(DECO), an informant questionnaire.Combining them, Dr Park’s team createdthe expanding card-sized document withsimplified case-finding tools andinformation, including the DECO.Assessments are conducted over a year

by family members using the tool, and theresults are used by a GP who refers thefamily on for specialist assessment. TheDementia Pocket Card provides an easyand accessible method for family andmedical professionals to speed diagnosisof early-stage dementia, leading to bettertreatment and higher quality of life.Parke B, Woo TKW, Cruttenden KE, Sapergia S& D’Hondt A (2012) The challenge of dementiacare knowledge exchange: Key factors in anational approach. Dementia 11 253.

Dementia screening toollinks families and doctors

Pain management linked to reduced aggression


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