AboriginAl And Torres sTrAiT islAnder demenTiA newsmAY 2013 issue 13

in This issue

koori growing old well sTudY 1-2eAr heAlTh 2TrAumATic brAin injurY 3memorAndum of undersTAnding 3coffs coAsT demenTiA resource 4worried AbouT Your memorY resource 4AboriginAl And Torres sTrAiT islAnder heAlTh surveY 5Aihw heAlThY for life reporT 5closing The gAp reporT 6pepA progrAm 6

“A previous study in the remote Kimberley region of Western Australia found higher rates of dementia at younger ages, but research in the majority urban population has been lacking.

“Like remote communities, however, Aboriginal people in urban areas have a disproportionately high burden of many of the risk factors and systemic diseases that have been linked to dementia in studies around the world. Improved understanding of this issue has important implications for ensuring access to appropriate services for Aboriginal people with dementia and their families and for future service development.”

Glenn Rees, CEO of Alzheimer’s Australia, said that this study yet again demonstrates the need for increased research.

“This would help us provide culturally appropriate services for Australia’s Indigenous community,” Mr Rees said.

1

koori growing old well sTudY The rate of dementia in Aboriginal Australians is three times that of Australia’s non-Indigenous population, a three year study into how Aboriginal Australians age has found.

The preliminary results from the study were presented at Alzheimer’s Australia’s 15th National Conference in Hobart.

Professor Tony Broe, a Senior Principal Research Fellow at NeuRA (Neuroscience Research Australia), conducted the Koori Growing Old Well Study: a census of all resident Aboriginal people aged 60 years and over, across five urban and regional Indigenous communities: Kempsey, Nambucca, Coffs Harbour, La Perouse and Campbelltown.

Most Aboriginal Australians live in urban or regional areas like these, with only about 30% living in remote areas.

“The number of older Aboriginal Australians is increasing rapidly, and yet little is known about their health and dementia rates,” Professor Broe said.

2 Australian and Torres Strait Islander Dementia News No 13 May 2013

A sTudY To prick up Your eArs: heAring loss AssociATed wiTh cogniTive decline

Those experiencing hearing loss in later life may be at a higher risk of developing dementia, according to new research published in the Journal of the American Medical Association.

Dr Frank Lin and his colleagues from the John Hopkins Centre on Aging and Health in the USA investigated whether hearing loss is independently associated with accelerated cognitive decline.

The researchers examined data from 1,984 older adults from the ‘Health ABC Study’, a prospective observational study that began in 1997. These were people who did not have any cognitive or hearing impairment (as measured by the Mini- Mental State

Examination and audiometric testing) when they first enrolled in the study, and for whom regular test data was available over the following 11 years.

The results showed that those who experienced hearing loss during six years of the study period had a 30-40% faster rate of decline in cognitive abilities than those with normal hearing.

The researchers suggest that further research is needed to investigate the basis of the association and whether hearing rehabilitative interventions could affect cognitive decline.

For more information please click on the following link:

Press link: The New York Times

Journal link: JAMA Network (2)

The study was conducted between 2009 and 2012, with final data collection in October 2012. Analysis of that data is ongoing, however, preliminary results suggest the prevalence of dementia over 60 years of age is more than 13% in Aboriginal Australians. “However when we adjust for the younger age of the Indigenous population, the rate is 21% or three times the general Australian rate of 6.8%” Professor Broe said.

“These preliminary results from the Koori Growing Old Well Study confirm earlier studies on remote Aboriginal populations.

“Of the causes for dementia in Aboriginal Australians, Alzheimer’s disease was the most common. Vascular dementia and dementia due to head trauma were also common, but alcohol related dementia was uncommon.”

The researchers believe that this higher rate of dementia could be associated with factors across the whole life course, from disadvantage in early childhood onwards, and including mid-late life systemic diseases. This will be addressed in forthcoming analyses.

“Importantly, the vast majority of older Aboriginal Australians do not have dementia, so we also have a lot to learn about successful ageing and resilience from this population,” Professor Broe said. The information gathered during the Koori Growing Old Well Study is now being used to develop education and services on the Mid North Coast, Campbelltown, Western Sydney and La Perouse for older Indigenous people with dementia, and their families.

“What’s important now is that the major gaps revealed by this research in Aboriginal health are followed as rapidly as possible by health service provision for the participating Aboriginal communities,” Professor Broe said.

These services include the Koori Dementia Care Project (2001-2012), funded by Ageing Disability and Home Care, to provide better health education and ageing support to urban and regional Indigenous populations, and visiting aged health care services, which will be delivered by geriatricians from Prince of Wales Hospital and is funded by NSW Health Connecting Care.

Left: Professor Tony Broe

Australian and Torres Strait Islander Dementia News No 13 May 2013 3

TrAumATic brAin injurY

memorAndum of undersTAndingbY john price

On Friday March 15, 2013 Maree McCabe, CEO of Alzheimer’s Australia Vic (AAV) and Jill Gallagher AO, CEO of the Victorian Aboriginal Community Controlled Health Organisation (VACCHO), signed the inaugural Memorandum of Understanding (MOU) between our two organisations.

The timeline for this event saw initial discussions commence in mid-2012 with the intent of the MOU to affirm and clarify the nature of the relationship which exists between AAV and VACCHO and the foundations which underpin this collaboration that were formed more than 5 years ago. Both organisations share a common goal in seeking to improve the capacity of Aboriginal Health Workers and carers to improve the quality of life for people with dementia.

The purpose of the MOU is to formalise our relationship in order to work collaboratively together to achieve better quality care and support to people with dementia. This will incorporate the delivery of targeted education to families, carers and Aboriginal health workers as well as developing culturally specific resources to improve access to services. We will work collaboratively with VACCHO and its members to develop a ‘Pathway for Dementia Diagnosis Tool’ that can be adapted to meet the diverse Victorian community’s needs.

John Price, Service Access Liaison Officer (SALO), Aboriginal, AAV, has been pivotal to seeing this event into fruition, and has been central to the establishment of the relationship with VACCHO, its members and staff over the past 5 years. Prior to the funding for the SALO position, John had established links, formed friendships and networks in Victorian Aboriginal Communities, in the course of his previous role as Facilitator and Educator, all of which has culminated in the signing of the MOU.

The MOU now sets the foundation and platform to enhance our working collaboration within Victorian Aboriginal communities and will see our two organisations work closely together. With Phase One of the Modified KICA study now complete and a new modified Regional and Urban Cognitive Tool now available, this partnership will see training be delivered to Aboriginal Health Workers around the implementation and use of the tool. Phase Two of the Validation Study of the new Modified tool is currently under funding review.

Traumatic brain injury refers to any external force or impact to the skull that is severe enough to injure the brain. Very severe traumatic brain injury will result in death or permanent disability. Less severe injuries that result in concussion can also cause short-term or persistent changes in a person’s cognitive abilities including learning, thinking and memory.

The association between traumatic brain injury and dementia risk is becoming increasingly evident. Research suggests that athletes who play contact sports such as football and boxing (that involve repeated impact to the skull) may develop ongoing cognitive impairments. There is even a specific type of dementia for the progressive brain damage resulting from repeated minor traumatic brain injuries called chronic traumatic encephalopathy.

This degenerative condition involves a build up of the toxic tau protein and progressive death of brain cells. As with other causes of dementia, chronic traumatic encephalopathy is associated with memory loss, confusion, depression, suicidal thoughts and personality changes.

More research is needed to better understand the link between traumatic brain injury and dementia and to understand why moderate, severe and repeated mild traumatic brain injuries may increase risk.

For more information please click on the following link:

Press link: Science Daily

Journal link: American Journal of Geriatric Psychiatry

Australian and Torres Strait Islander Dementia News No 13 May 20134

new demenTiA resources developed on The coffs coAsTbY judY bArTholomew

Two new brochures and a DVD about dementia have been developed on the Coffs Coast region of NSW targeting the local Aboriginal community.

The resources were funded by UnitingCare Ageing in collaboration with Alzheimer’s Australia NSW and developed locally through a Gumbaynggirr Advisory Committee.

One brochure focuses on Brain Health and identifies ways to reduce the risk of dementia. The other brochure outlines early signs and symptoms of dementia, and explains what to do if you are worried about your own or someone else’s memory. The original artwork for the brochures was created by local Aboriginal artist Caine Rosser.

The short DVD was filmed by Steve MacDonald of Life and Times and local people volunteered their time to act in the film. The film goes for about 5 minutes and is recorded in an interview format with family members talking about dementia and what can be done to help.

The resources will be ready for distribution by the end of May 2013. For further information or to obtain copies of the resources, please call Judy Bartholomew, Alzheimer’s Australia NSW on (02) 6651 6415 or email: judy.bartholomew@alzheimers.org.au.

Left: Uncle Barry Donovan, Sheree Drylie, Jo Johnson, Patty Airs

worried AbouT Your memorY? communiTY resource

Worried About Your Memory is a community resource filmed in Coffs Harbour aimed at raising awareness of dementia.

The DVD includes three short scenarios outlining risk reduction and what to do if people are worried about their own or someone else’s memory. Special target groups are younger people and the local Aboriginal community.

The DVD will be in a loop mode so that it can be played in GP surgeries, Centrelink offices and pharmacies. Local people volunteered their time to act in the DVD and filming was carried out by Steve McDonald of Life and Times. The DVD is available on the Alzheimer’s Australia website.

Alternatively, to view the resource, click here

Australian and Torres Strait Islander Dementia News No 13 May 2013 5

Abs conducTing lArgesT surveY of AboriginAl And Torres sTrAiT islAnder heAlThThe Australian Bureau of Statistics (ABS) has commenced the largest Aboriginal and Torres Strait Islander health survey which will improve our knowledge of the health issues affecting Indigenous Australians.

This survey will expand on the 2004-05 survey by increasing the number of participants by 30 per cent, collecting new information on exercise, diet (including bush foods) and measures of cholesterol, blood glucose and iron.

For the first time, the ABS will directly measure obesity and blood pressure levels, as well as nutritional status and chronic disease. By combining the self-reported information together with the biomedical samples, a more complete picture of the health of Aboriginal and Torres Strait Islander peoples will be available. Importantly this will give us some information about the level of undiagnosed conditions, such as diabetes.

While the biomedical component of the survey is voluntary, survey champion Cathy Freeman encourages people to get involved as: ‘you will be helping your family, your community, and future generations to live longer healthier lives’.

The survey will be conducted over 2012-13 across the country in cities and remote communities to create evidence to measure progress in improving Aboriginal and Torres Strait Islander health and contributing to Closing the Gap in life expectancy.

The first survey results will be released in November 2013 and will be used by a wide range of Aboriginal organisations, health researchers, public health advocates, government, clinicians and community health organisations. For further information on the ABS and detailed questions and answers click here.

posiTive resulTs in The Aihw heAlThY for life reporT

Improvements in Aboriginal and Torres Strait Islander health have been detailed in the latest Australian Institute of Health and Welfare report into maternal health, child health and chronic disease management.

Minister for Indigenous Health Warren Snowdon said he was happy to see that the Healthy for Life: results for December 2007-June 2011 showed the proportion of Aboriginal and Torres Strait Islander low birth-weight babies decreasing and the proportion of normal birth-weight babies increase from 80 per cent to 84.2 per cent.

“The report provides further evidence that we are on track to close the gap in infant mortality by 2018,” he said.

“It is especially good to see the proportion of expectant mothers consuming alcohol in the third trimester dropped from 21.4 per cent in 2008 to 17.9 per cent in 2011. That’s a good result for expectant mums and for little babies.

“More Aboriginal and Torres Strait Islander people who need it are accessing chronic disease care, with those aged 15–54 years increasing from 11.7 per cent in 2008 to 15.2 per cent in 2011, as did the proportion aged 55 and over – from 14.7 to 20.7 per cent,” Mr Snowdon said.

The management of chronic disease in general practice has improved with the proportion of clients with type 2 diabetes who had a General Practitioner Management Plan increasing from 24.8 per cent in 2008 to 31.6 per cent in 2011, and the proportion with a team care arrangement also increasing over that period. Blood pressure testing in the last six-month period was up by 9.6 per cent between 2007 and 2011.”

The flexible Healthy for Life program allows services to develop priorities in line with local needs and the data is used to improve service planning and delivery. It also acts as a reliable study for further analyses of Aboriginal and Torres Strait Islander health.

Currently around 100 primary healthcare services participate in the program in 57 sites located in urban, regional and remote centres across the country.

Funding for the Healthy for Life program is ongoing.

To view the report, click here.

6 Australian and Torres Strait Islander Dementia News No 13 May 2013

closing The gAp – prime minisTer’s reporT 2013

progrAm of experience in The pAlliATive ApproAch (pepA) progrAm

On 6 February 2013, the Prime Minister tabled the fifth annual Closing the Gap report in Parliament.

The report details the progress made on the seven inter-linked areas integral to improving Aboriginal and Torres Strait Islander health:

• Early childhood• Schooling• Health • Healthy homes• Economic participation• Safe communities• Governance and leadership

To view the report, click here

The PEPA Program is an initiative of the Australian Government Department of Health and Ageing, funded through the National Palliative Care Program.

The overall aims of the program are to:• further improve the skill and confidence of the generalist health workforce to work with people with palliative care needs; and• provide opportunities to ensure palliative care providers across the continuum are aware of, and provide culturally appropriate palliative care and end of life support including care preferences, spiritual requirements and bereavement expression.

PEPA offers a tailored program for Aboriginal and Torres Strait Islander health workers. This program is flexible and customised to local needs within each state and territory.

Who is eligible?

PEPA placements are available for:

• Aboriginal and Torres Strait Islander health workers• Indigenous liaison officers• Indigenous community workers.• Male and female health workers are encouraged to apply. Applicants are welcome from all communities including very remote communities and the Torres Strait Islands.

For further information about the PEPA Program, click here

Become a dementia champion today, and let the government know we need more help for people with dementia. For more information visit http://campaign.fightdementia.org.au/

7 Australian and Torres Strait Islander Dementia News No 13 May 2013

This document has been made possible with the support of the Australian Government Department of Health and Ageing under the National Dementia Support Program.

The opinions expressed in the publication are those of the authors and not necessarily those of the Australian government.

This newsletter has been edited by Kristen Holdsworth.

Articles were contributed by John Price, Judy Bartholomew, and Kristen Holdsworth.

We can’t do it without you: please remember this newsletter belongs to you. If you would like to share a story, tell other people what’s happening in your community, or to make any other comments or suggestions, please contact:

Kristen Holdsworth

Learning and Development,

Alzheimer’s Australia Vic.

Email: Kristen.Holdsworth@alzheimers.org.au

Phone: 03 9816 5715

To download previous editions of this

newsletter, click here

For further information about dementia, click here

A series of help sheets about various dementia topics have been developed to inform Aboriginal and Torres Strait Islander people about dementia.

These include:

• Memory Changes

• What is dementia?

• Diagnosing dementia

• Alzheimer's disease

• Information for family and friends

To view the help sheets, click here

AboriginAl And Torres sTrAiT islAnder demenTiA help sheeTs

For the latest information about upcoming conferences, workshops and events look under the Dementia section on the Australian Indigenous Health InfoNet

Contact Numbers

National Dementia Helpline1800 100 500

Alzheimer’s Australia1800 100 500 orwww.fightdementia.org.au

Dementia Behaviour ManagementAdvisory Service (DBMAS)1800 699 799