Koori Dementia Care Project (KDCP) Acknowledgment of country. KDCP undertaken in the communities of : Primary Aim 20/12/2013

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1 Koori Dementia Care Project (KDCP) Translating Dementia Research Knowledge into Care and Practice with Aboriginal Communities Aboriginal and Torres Strait Islander people are warned that there may be photos of now deceased people within this presentation Acknowledgment of country I would like to acknowledge the traditional custodians of this land on which we stand. I would also like to pay respect to the Elders past and present and extend that respect to other Aboriginal people present. There is no place in Australia where there is no Aboriginal Land, and this is the only place in the world where Indigenous Australians belong What is the Koori Dementia Care Project? Funded by Ageing Disability and Homecare Auspiced By Neuroscience Research Australia and supported by The Dementia Collaborative Research Centre Builds on the current work of the Koori Growing Old Well Study (KGOWS) Informed by evidence and translation of research KDCP undertaken in the communities of : Coffs Harbour Nambucca Kempsey Via a Mid North Coast Project Mt Druitt (Western Sydney) La Perouse Campbelltown Holly Mack, Charmaine Moran, Sharon Wall, Mervyn Davison and Aunty Sue Hoskins Primary Aim The primary aim of this project is to inform, educate and build capacity in NSW Aboriginal communities, and with associated service providers, about the effects of dementia on older Aboriginal people and their families. Aunty Edna Patron Campbelltown Aboriginal Deb Ball July

2 Essential elements of Project Engagement of Aboriginal Dementia Knowledge Holders in each community (Aboriginal Dementia Educators) Mentored by project manager in Dementia knowledge Project Manager mentored by Aboriginal Dementia Knowledge Holders in Cultural knowledge = Collaboration and Partnership Evidence based - Informed by Aboriginal belief is that a life out of balance, having lost connection to the land and to traditional relationships, causes sickness... and some have described dementia as a sick spirit. Arkles, R., L. Jackson Pulver, et al. (2010) Aboriginal health incorporates a whole of life outlook that focuses on the family and community. Psychosocial, emotional, physical, spiritual and cultural health all are facets of personal, family and community responsibilities. (Hampshire, Broe et al. 2005) Thus, the development and provision of Aboriginal aged (and dementia) care should reflect these holistic needs (Buti 1996) Underpinned by this understanding: Trekof Hope for a Dementia Cure In the middle part of the brain is a black spot, which is the first sign of dementia and it spreads like a vortex through the other brain cells. The rest of the black around the brain is the other cells dying and the silver represents the minimum of brain tissue that is left. The red shapes represent the blood flow, the blood cells, and the veins. There are slight greens in there, which to me is always to do with mentality that acts like a calming. Also in the centre of the brain is the Eye of the Mind. We are all born with the Eye of the Mind and we will die with the Eye of the Mind. It s just part of our existence; the eye will always be there, even in sickness. The tracks in the top right and lower left hand corners symbolise the memory leaving the brain. The black in the background is the death of the brain tissues, everything s gone, and that s where it goes to when it dies. It symbolizes loneliness and how the person feels with dementia. We don t know where it goes to and that is what we are hoping to find out. The flowers represent hope; hoping one day there will be a cure for dementia. The red in the flowers is strength and power because we must have the strength and the power to have hope. The gold also means strength and it signifies the sun, hoping that the sunlight comes in, and that there will be a brighter day for those people suffering from dementia. ( Mary Page, Aboriginal artist, 2012 Koori Dementia Care Project) Kimberley Study : (2008) Rural and Remote Australia 363 Aboriginal Australians (45 96) 45 Dementia cases Prevalence of dementia: 12.4% at 45 yrs+ (n= 45) 5 x non-indigenous 2.4% 23.8% at 60 yrs+ (n = 40) 3-4 x non-indigenous 6.8% CIND prevalence = 8% (cognitive impairment no dementia) Evidence Based!!!!! Koori Growing Old Well Study 5 Urban and Regional communities of NSW (2013) 336 Aboriginal Australians (60-92) 45 Dementia cases Dementia Prevalence (age adjusted) = 21% Dementia Rate = 3 x non-indigenous rate of 6.8% Young onset common 40% <65 yrs of age Prevalence consistent across urban & regional sites MCI (Mild cognitive impairment) = 17.5% RESULTS: Dementia Types WHY the high dementia rate? + Birth parenting education resilience employment physical/mental activity social support low birth wt. separation anxiety vascular+ risk child trauma head injury incarceration depression Old age 2

3 Building capacity?? An approach to the development of sustainable skills, organisational structures, resources and commitment to health improvement in health and other sectors, to prolong and multiply health gains many times over. Hawe et al: 1999 Elements of building capacity Respect and value pre-existing capacities Develop trust Be responsive to context Avoid pre-packaged ideas and strategies Develop well planned and integrated strategies Dreambox: open.abc.net.au NSW Health Department 2001 A true culturally appropriate understanding of Person centred care Understanding Partnership Values Processes and systems Learning styles Culture Beliefs Communication Dreambox: open.abc.net.au Dreambox: open.abc.net.au Things to consider in collaborations / partnerships Acknowledge the uniqueness and strength of each contributor Think about the process as much as the outcomes Demonstrate genuine respect Invest meaningful time Enhance communication Make meetings REALLY work Walking together mutual mentorship 3

4 Developing resources where appropriate Achievements (or have we succeeded)??? Aboriginal Dementia Knowledge holders with a high level of dementia literacy and competency working across the communities. Increased dementia awareness and knowledge across the six communities Improvement in the diagnosis of dementia Increase in the take-up of support for carers through increased community and family education Increase in the understanding and acceptance of the range of community support services available for carers Development of a person-centred (community centred) model of care within Aboriginal care. The commencing of a dialogue abound service responses BUT WE HAVE MORE TO DO!!!!!! Mary Page, Aboriginal artist, 2012 Koori Dementia Care Project Dreambox: open.abc.net.au Understanding the Impact of Dementia On Brain The brain and dementia Working with Older Aboriginal and Torres Strait Islander people Two clear challenges It should be no survey without service Dr Fred Hollows A Research challenge: We must find out what are the important modifiable factors causing the high rates and early onset of (predominantly Alzheimer s) dementia in Australian Aboriginal people A Knowledge Translation challenge: Prevention: We must find out the best way to address modifiable causes or risk factors Capacity Building: We must continue the process of dementia and aged care capacity building with Aboriginal communities developed in the Koori Dementia Care Project Aged and Dementia Care: We must assist Aboriginal communities to build services and achieve access to mainstream services that are culturally appropriate Must increasingly be carried out for Aboriginal people by Aboriginal people The AAG (amongst other organisations) has a responsibility to ensure that these things happen 4

5 AAG -ATSIAAG Questions : Comments 5