WINTER 2010 NEWSLETTER

Winter 2010 Alzheimer’s Australia (Qld) 1

Those providing support and care for people with dementia face ethical problems on a daily basis. The balance lies between safety and freedom for a person who may experience wandering and deciding what is in the best interest of a person living with dementia while considering the conflicting needs of that person and their carer. All of these things are relative to making ethical decisions for everyone involved in the care of a person with dementia.

To help inform you Alzheimer’s Australia (Qld) is pleased to announce a seminar on ethics in dementia care with our international guest speaker, Professor Julian Hughes. Alzheimer’s Australia (Qld) in association with Griffith University will host this informative seminar on Friday 18 June at the Griffith University Eco Centre.

Professor Hughes’ research in ethical decision making in dementia care will provide a platform for discussion of the ethical concerns surrounding dementia care, including end of life issues. His presentation for the seminar will be Ethical issues and decision-making in dementia care.

Professor Hughes is a consultant in old age psychiatry based at North Tyneside General Hospital in the UK. He is honorary professor of philosophy of ageing at the Institute for Ageing and Health, Newcastle University. As well as three books (co-edited, edited or co-authored) he was a special adviser on palliative care and ethical issues at the end of life to the guideline development group, which led to the NICE-SCIE guideline on dementia in 2006. More recently he served on the working party of the Nuffield Council on Bioethics, which produced Dementia: Ethical Issues in October 2009.

Professor Wendy Moyle will also deliver a presentation on Maintaining identity: an important driver for quality dementia care at the seminar. Professor Moyle leads an evidence-based practice for older people research agenda in the Research Centre for Clinical and Community Practice Innovation (RCCCPI), a research program in the Griffith Institute of Health and Medical Research at Griffith University, Brisbane. The focus of her research is the impact of social engagement on quality of life and best practice evidence for the management of agitated behaviours in people with dementia.

A family pays tribute to their grandmother. See page 7 for their story.

Dementia and ethics

BOOKING INFORMATION

Limited places are available with tickets just $25 per person. The Griffith University Eco Centre is located at the University’s Nathan campus on Kessels Road, Nathan. Registration will commence at 9.00am and the event will conclude by 11.30am. Bookings are essential and you can download a registration form here.

Dementia raises many ethical issues – perhaps more than any other major chronic disease. To stay informed you cannot afford to miss this event.

(Left) Dr Julian Hughes (right) Professor Wendy Moyle

Queensland CEO’s message

More support welcomed in healthcare reform

Dementia must be given priority in the health and aged care reforms

Winter 2010 Alzheimer’s Australia (Qld) 2

“Of even greater importance in terms of achieving consumer choice was the recommendation made by the National Health and Hospital Reform Commission to directly link Government subsidies to people rather than places, thus enabling access to the mix of residential care and community care needed for each individual,“ he said.

“The Australian Government’s support for

Despite the budget disappointment, Alzheimer’s Australia welcomes the recent announcement by the Rudd Government of increased funding for aged care and proposals for the Australian Government taking full responsibility for funding and policy in aged care.

Glenn Rees, CEO of Alzheimer’s Australia, said that: “It had been evident for some time that there was a need for national responsibility in aged care if the reforms needed to achieve greater consumer choice were to be realised. This was the starting point for work on long term aged care reforms.”

Glenn welcomed the new consumer directed care packages as Alzheimer’s Australia has actively advocated for consumer directed care models that would provide greater choice to older people in the types of services received, and how and where they were delivered.

this principle should be given before the reference to the Productivity Commission to set the scene for real reform.”

The proposed new one-stop-shops linking information and assessment recognised the needs of people living with dementia for easier access to the aged care system, continuity in their care and reduced numbers of assessments.

The extra residential aged care places to free up hospital beds were welcomed, but did not address underlying concerns about the sustainability of the aged care system.

“There was no recognition in the Government’s new policy statement that dementia must be given priority in the health and aged care reforms if the aged care system is to respond effectively to care needs of the growing number of people with dementia.”

Alzheimer’s Australia has set out a strategy for addressing the growing challenge of dementia in its budget submission Dementia: Facing the Epidemic.

“The health and aged care reforms will struggle over the coming years if dementia is not recognised as a health priority and additional funding is not provided for dementia care, dementia research and dementia risk reduction,” said Glenn.

In 2005 the Dementia Initiative was implemented with funding for five years. However silence in the 2010 Budget raises new concerns about the impact that will be felt by people with dementia.

It is a great honour and privilege to be writing my first CEO’s report for Alzheimer’s Australia (Qld).

I am greatly disappointed that the Federal Budget did nothing to address the dementia epidemic. It is clear that dementia as the major chronic disease of this century is not on the radar of those responsible for health policy. It is hard to know why dementia was not ranked alongside other chronic diseases such as cancer, heart disease, diabetes and obesity. For families and carers struggling in the community to support those with dementia, the budget is a scant recognition of the efforts they are making or of the impact that dementia will have on families and carers of the future.

The Dementia Initiative in the 2005 Budget had laid the basis for some optimism for those living with dementia and that an opportunity would be taken by successive Governments to address the dementia epidemic. The Initiative has resulted in effective action in respect of high care community packages, training, dementia care research and support through the National Dementia Support Program administered by Alzheimer’s Australia.

In Queensland there were 36,000 people with dementia in 2005, currently there are over 46,000 and it is projected to grow to over 123,000 by 2030. More support is needed now to ensure the needs of Queenslanders are fully considered in the times ahead.

Victoria Beedle, CEO

Planning is well underway for the Alzheimer’s Australia 14th national conference, to be held at the Brisbane Convention and Exhibition Centre from 17 to 20 May 2011.

The conference, hosted by Alzheimer’s Australia (Qld), will showcase the latest thinking and practice around dementia, as well as offering delegates a break from the daily grind of work in a relaxing location. Online registrations for the conference and a call for papers are now open.The Conference Chair, Marianne Gevers, says: “We have secured some excellent speakers for the event, which has the theme Take a different view. There will be a good mix of overseas and local presenters, thought-provoking topics and practically-focused workshops.”

Confirmed keynote speakers include:

Professor Raymond Tallis, a philosopher, poet, novelist and cultural critic who trained as a doctor at Oxford University and at St Thomas’ in London before becoming Professor of Geriatric Medicine at the University of Manchester and a consultant physician in Health Care of the Elderly in Salford. Professor Tallis retired from medicine in 2006 to become a full-time writer, his works include an alternative understanding of human consciousness and of what it is to be a human being.

Professor Steven R. Sabat, who has been at Georgetown University since earning his doctorate at the City University of New York in 1976, where he specialized in neuropsychology. Professor Sabat’s research focuses on the intact cognitive and social abilities of people with Alzheimer’s disease in the moderate to

severe stages of the disease; the subjective experience of having the disease; and the ways in which communication between those diagnosed and their caregivers may be enhanced. These issues are explored in The Experience of Alzheimer’s Disease: Life through a Tangled Veil and Dementia: Mind, Meaning, and the Person.

Research fellow and consultant Diana Kerr has many years’ experience in the field of social work, both as a practitioner and as an educator. She developed the MSc degree in Dementia Studies at the University of Stirling in Scotland and in 2002 moved to the Centre for Research on Families and Relationships, where she continues her research into intellectual disability and dementia. She is the author of Understanding Learning Disability and Dementia: Developing Effective Interventions. Her next book, co-authored with Heather Wilkinson, will focus on the night-time care of persons with dementia in residential facilities.

Themes for the 14th national conference include ethics and decision making in dementia care; personhood, identity and consumers’ rights; best practice and new approaches to dementia and dementia care; and the latest developments in research and treatment.

Visit the conference website for more information about speakers, the venue, accommodation, social events and sponsorship opportunities, as well as to book your place: www.alzheimers2011.com.

Dementia experts heading for Brisbane

Winter 2010 Alzheimer’s Australia (Qld) 3

Alzheimer’s Australia 14th national conferenceBrisbane Convention & Exhibition Centre

17 - 20 May 2011

take a dif erent view

www.alzheimers2011.com

Professor Raymond Tallis

Professor Steven R. Sabat

Researcher Diana Kerr

The need to nuture

Winter 2010 Alzheimer’s Australia (Qld) 4

Qld Meals on WheelsMeals on Wheels Qld has more than 15,000 volunteers and approximately 300 paid staff.

Together they ensure more than 2.4 million meals are delivered across Queensland each year to an average of 10,000 clients per day.

Meals on Wheels is one of Australia’s leading volunteer-based organisations and is dedicated to the well-being of the community.

On any given day the volunteers leave their homes, or their jobs in offices, shops or farms, to deliver a nutritious meal to fellow Queenslanders.

They may discuss the events of the day, have a cup of tea or share a laugh – but most of all they feel a part of their community.

It’s much more than just a meal – it’s about nutrition, daily personal contact and good old fashioned mateship.

These volunteers may be helping your grandmother,

practice of using dolls to provide a focus of attention, comfort and joy for people living with dementia. While doll therapy is not for everyone, some people may find deep symbolic significance in dolls. A doll can fulfil the need to nurture, give comfort and provide purpose. A doll may also inspire memories of a past time when the person cared for small children. Frances responded positively and felt that it was a shame that such a beautiful ‘child’ was alone. She immediately found a box to use as a makeshift bassinette and proceeded to care for and comfort the ‘baby’. The doll therapy satisfied her long standing need to give comfort which had been stripped away with the loss of her parents and her beloved dog.

The doll not only gave her the opportunity to give and receive comfort, it also gave Frances the ability to nurture. Her vocalising and aggression have settled and she has stopped packing her belongings as she is now occupied with the doll.

The husband of another recipient of a therapy doll from DBMAS in Queensland was so impressed by the positive change in his wife that he purchased a second doll for donation to the facility where his wife was a resident so others could also benefit.

As everyone with dementia has a different history and life story, each case is different. For more information about doll therapy and other ideas from the DBMAS team please call 1800 699 799.

A doll can provide comfort and joy

By Debra Tape

aunty or father. Meals on Wheels has been serving local Queensland communities for more than 50 years.

Meals on Wheels is a part of the Home and Community Care program (HACC), a joint Australian government, state and territory initiative. HACC provides funding for services which support people who may be frail aged and younger people with a disability and their carers to remain living in their own homes.

Frances lives in a rural and remote area and has never married. Her parents would not allow her to marry the love of her life as he was a worker on their station.

Frances worked on her parents’ property but also travelled extensively around the world and explored other career options, including becoming a jockey. She returned to run the family property after her parents passed away until she felt it was time to retire to an easier life. She had a dog, Susie, who was a lifelong companion and was adored but she too has since passed away.

In late 2009 Frances was referred to Alzheimer’s Australia (Qld)’s Dementia Behaviour Management Advisory Service (DBMAS) by the residential care facility where she now lives. She was being resistive to activities of daily living, vocalising (screaming and swearing) and packing up her belongings regularly.

The DBMAS team introduced doll therapy. Doll therapy is the

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The School of Social Work and Human Services at the University of Queensland, in partnership with the Faculty of Law at Queensland University of Technology, currently has a research project that aims to explore any issues associated with the use of the forms for advanced decision making in Queensland and suggest improvements to government concerning these forms for the people who use them. Improved forms are likely to be easier to complete and more effective for those who depend on them as decision-making instruments when decision-making capacity is lost or at risk of being lost.

The project is seeking to hear the views and experiences of a broad range of people who use the forms. If you have been involved in the completion of such a form or have used an EPA or an AHD in the past two years either as a principal or as an attorney, and are interested in participating in a focus group for this research project, please contact the project’s research assistant Carlie Rocco by phone (07) 3346 7314 or email c.rocco@uq.edu.au for further details.

Enduring documents: improving the forms, improving the outcomes

Enduring power of attorney (EPA) and advance health directive (AHD) documents can be useful planning and decision making instruments for people diagnosed with dementia and their family members. Completing EPAs and AHDs allows adults to be involved in financial, health and personal decisions even after decision-making capacity is lost. They are important legal documents for family members and others who are assisting with and/or making the decisions on behalf of someone with impaired decision-making capacity.

It is important that these forms remain accessible, user-friendly and as effective as possible for those who use them. It is equally important that these documents are as informative and provide adequate protection for the person filling them out (the principal) and any person who is appointed as an attorney. To achieve this requires a delicate balance between being rigorous and flexible, informative and simple to complete.

Research in Queensland helping GPs Australia wide

Most people consult their general practitioner (GP) for the diagnosis and management of dementia. Alzheimer’s Australia Research (AAR) grant recipient Dr Fiona Millard has been conducting research into ways of improving GP dementia diagnosis while measuring GP and patient understanding of the disease.

Dr Millard’s project, Dementia: GP diagnosis and management of dementia and raising awareness of dementia risk factors, was initially funded through AAR in 2007 after seeing evidence in surveys that showed many GPs feel inadequately trained to manage dementia cases. The project offers education and feedback from dementia cases to GPs throughout Australia, measuring whether this improves the diagnosis rate.

Dr Millard explains, “Our project at James Cook University on GP management of dementia and reduction of risk factors should be completed in the next few months with results indicating there is more work to be done. To address this need, a further study is being planned which will assess GP dementia learning needs and ways of meeting these, especially in regional Australia.

“We showed that 30% of patients over 30 years had memory concerns, 54% would like a memory test although only 6.5% recalled having a memory test and 16% had heard about dementia from their GP.

“We also surveyed 127 GPs of whom 60% had received dementia training but only 27% felt adequately prepared to manage dementia cases. Despite this, 90% of GPs felt a doctor should discuss dementia with patients,” Dr Millard said.

Two trips to UK and Europe in the past year have established links with other dementia researchers and a further trip later this year is planned to set up a collaborative post-doctoral project. Presentations in Australia and international dementia conferences in Vienna, Paris and Greece have promoted the research widely. This research has been accepted for presentation in London at the International Stirling University Dementia Conference to be held in October 2010. Earlier results have been published in three medical journals and two conference proceedings.

Dr Millard adds, “We are grateful to Alzheimer’s Australia and Eli Lilly for their continuing support on this project.”

Fiona Millard with her poster presentation

now is the time for organisations in the community to act.”

Alzheimer’s Australia (Qld) community educator Maxine Tobias has held several education sessions for the staff and residents in Oak Tree villages. Maxine also made a presentation to the Oak Tree group’s annual conference in Queensland on the need for more community knowledge about the disease.

Findings in a recent American research study underscore the need to treat people with Alzheimer’s disease with dignity and respect, researchers say.

People with memory loss can still “remember” feelings associated with happy and sad experiences, the new study has found.

University of Iowa researchers showed clips of happy and sad movies to people with memory loss. Those surveyed couldn’t remember what they had watched, but they did retain the emotions triggered by the movie clips.

“Sadness tended to last a bit longer than happiness, but both emotions lasted well beyond [the person’s] memory of the films,” lead author Justin Feinstein said in a university news release. “With healthy people, you see feelings decay as time goes on. In two study cases, the feelings didn’t decay; in fact, their sadness lingered.”

The findings, published in the online edition of the Proceedings of the National Academy of Sciences, have implications for people living with Alzheimer’s disease, their families and caregivers.

“A simple visit or phone call from family members

As memory fades, emotions linger

Winter 2010 Alzheimer’s Australia (Qld) 6

Oak Tree pledges to support Alzheimer’s The Oak Tree Group recently announced the formation of its charitable foundation, The Oak Tree Trust, and its pledge to support Alzheimers Australia (Qld).

The Trust was set up to assist established organisations who specialise in research and support of diseases affecting Australian seniors.

“There are several well-known ailments affecting seniors in this country,” said Mark Bindon, one of the Trust’s directors.

“Our target for 2010 is Alzheimer’s disease and dementia. We believe part of our business focus should entail the contribution to ongoing research into these illnesses. We have the opportunity to make a meaningful contribution as part of our community focus,” he said.

A family visit can leave lingering feelings of happiness for a person with dementia

might have a lingering positive influence on a person’s happiness even though they may quickly forget the visit or phone call. On the other hand, lack of regular positive engagement with other people may leave the person feeling sad, frustrated and lonely even though they can’t remember why,” Feinstein said.

“What this research suggests is that we need to start setting a scientifically informed standard of care for people with memory disorders. Here is clear evidence showing that the reasons for treating people with Alzheimer’s with respect and dignity go beyond simple human morals.”

http://www.pnas.org

“The organisations that focus on researching these illnesses need our support.”

Oak Tree, through its resident community across multiple villages, will target specific fundraising opportunities to raise money for Alzheimer’s Australia (Qld).

Victoria Beedle, Chief Executive Officer of Alzheimer’s Australia (Qld), said: “We are very pleased the Oak Tree Group is helping to spread the word in the community about Alzheimer’s disease and dementia. Their fundraising will also help to support services for people living with dementia in Queensland.

“There are currently more than 46,000 people in Queensland with a diagnosis of dementia and with this number set to exceed 258,000 in just 40 years,

Winter 2010 Alzheimer’s Australia (Qld) 7

The walk for Joy By Renee Blaslov

How do you begin to say thank you to someone who has given you so much? How do you repay the gesture of unconditional love, support and encouragement? You can’t really, as you cannot truly measure that precious gift from one human being to another.

In October 2009 and after the passing of our Grandmother, Joy Baker, my brothers, Jamie and Daniel and I made a pact that would in some small way, return that gesture of love. As Joy had Alzheimer’s in the last few years of her life, we wanted to raise money and awareness so that for generations to come, a cure may be found.

This was also a great way to remember, honour and respect a lady who despite her own incredible hardships in life, managed to rise above everything through her zest for life and her close family relationships.

With nine children, 32 grandchildren and around 50 great-grandchildren, Joy always had time for each and every one of her extended family and loved them all equally. She gave each and every one of them her unconditional love and showed firsthand what courage and a positive attitude in life can bring you.

How inspirational was this lady? Joy was born at 26 weeks gestation in 1926 and was given no chance of survival. She went on to raise nine children of her own in a violent and abusive marriage that finally ended when her husband was accidentally killed. Joy then met and married a true gentleman by the name of Bill Baker with whom she would spend the rest of her days.

This magnificent woman Joy has inspired her family and friends more than she will ever know.

As a tribute to Joy’s life and to raise awareness Rene, Jamie and Daniel will walk from Toowoomba to Ipswich on 24th and 25th of September 2010 as part of Dementia Awareness Week.

You can show your support for Rene and her family as they walk for Joy by going to their everyday hero page at http://www.everydayhero.com.au/Walk_For_Joy.

WAYS TO DONATE

If you would like to fundraise for Alzheimer’s Australia (Qld) we recommend the Everyday Hero site where you can make your own webpage with a link to our organisation. The site looks after all of the financial worries including issuing tax receipts making your fundraising easy and secure.

Donations to Alzheimer’s Australia (Qld) over $2 are tax deductible.

Alternatively, you can go to our website donation page www.alzheimers.org.au for a variety of ways to donate including direct online donations, donating by mail, fax and phone. There are also forms for in memoriam donations in memory of a family member or friend. Or you can use the simple form below to mail your donation to us.

Alzheimer’s Australia (Qld)’s mission is to reduce the impact of dementia on the community. We do this by providing leadership, information, advocacy and support for people with dementia, their carers and families throughout Queensland. We also work to raise awareness of dementia and promote the importance of good brain health. Our strength lies in our connection to Alzheimer’s Australia, the national leaders in dementia care, information, education and advocacy for more than 20 years.

© Lynton Crabb Photography

Regional community groups

Alzheimer’s Australia (Qld) Inc

Address PO Box 9360, GCMC Qld 9726Email info@alzqld.asn.auWebsite www.alzheimers.org.auPhone 07 3895 8200Facsimile 07 5538 8225 ABN 62 659 237 563

Dementia & Memory Community CentreAddress Unit 2, 9 Hubert Street Woolloongabba Qld 4102Phone 07 3895 8200

Alzheimer’s Australia Far North Qld IncShop 6a, 151-159 Pease StreetManoora Qld 4870Phone 07 4032 4884

Alzheimer’s Australia North Qld IncUnit 1, 56 Thuringowa DriveKirwan Qld 4817Phone 07 4755 1177

Alzheimer’s Australia Central Qld Inc238 Richardson RoadNorth Rockhampton Qld 4701Phone 07 4928 1926

Alzheimer’s Australia Mackay Region Inc1A, 54 Gregory StreetMackay Qld 4740Phone 07 4957 8799

Alzheimer’s Australia Wide Bay & Burnett IncLevel 1, 200 Bazaar StreetMaryborough Qld 4350Phone 07 4123 5611

Alzheimer’s Australia Darling Downs & South West Inc9C Bell Street Toowoomba Qld 4350Phone 07 4613 0052

Alzheimer’s Australia Sunshine Coast IncReflections Respite Centre8 Boxwood Avenue, Kuluin Qld 4558 Phone 07 5476 7833

Alzheimer’s Australia Gold Coast Inc90 Allied Drive, Arundel Qld 4214 Phone 07 5594 0270

Our services include:• Free community education sessions;• Subsidised training for aged care, respite and community sector workers;• The National Dementia Helpline (1800 100 500);• Dementia Behaviour Management Advisory Service (1800 699 799) 24 hours;• Support programs for people with dementia;• Counselling and referral services;• Regional support groups for carers;• Drop-in Dementia and Memory Community Centres; and• A varied calendar of events and activities

For further information please call 07 3895 8200 or email info@alzqld.asn.au.

NATIONAL DEMENTIA HELPLINE 1800 100 500 8am - 5pm Monday to Friday

More information is also available on our website www.alzheimers.org.au

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