21 July 2016

Supporting people to live with dementia

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As the number of Australians living with dementia rises there has been a concerted effort to create a well informed and funded national plan for a comprehensive and positive dementia strategy.  At the centre of all discussions between stakeholders then must be the experience of people living with dementia and the impact of the strategy on them and their families and carers.

Kate Swaffer, Chair and Founder of Dementia International Alliance and member of the World Dementia Council was diagnosed with early onset dementia at the age of 49. As an advocate for people living with dementia, Kate has been working not only to raise awareness and call for further research on diagnosis and treatment but also to support people with dementia to live with the disabilities imposed on them by dementia while remaining engaged in lives that are meaningful.

When we spoke with Kate she talked of the imperative to move the focus of strategy towards an enabling pathway of support for people living with dementia. She also spoke of the need to move away from prescribing end stage management for early stage dementia.

What do you think needs to change to develop a dementia care strategy that supports and enables quality of care and wellbeing for people living with dementia?

“The health sector is still managing people with dementia post diagnosis as if we are all end stage in the disease process. This was probably true 30 years ago, but as the push for earlier diagnosis continues, this is not the case, and the sector has not caught up with the fact we are not end stage at diagnosis. We need to move away from the Prescribed Disengagement ®, to an enabling pathway of support that includes proactive rehabilitation and disability support, as we are entitled under the UN CRPD. This is in part, why I have been so active globally in the Human Rights space.”
How effective is the Australian system in providing authentic pathways for rehabilitation?

“Quite frankly, for people with dementia, it is not.”

In your travels as the founder of the International Dementia Alliance have you found other countries or strategies that have features we could adapt here in Australia?

“Unfortunately, I know of no other country that has moved away from prescribing end stage management, for early stage dementia.  Emerging evidence from professor Dale Bredesen suggests there is the chance to reverse cognitive decline, even in people with a confirmed diagnosis and I believe all countries need to start to see dementia another way, as currently we cannot afford dementia care (economically or socially) the way it currently encourages us to be dependent on the health sector, rather than promoting independence, for as long as possible.”

You have written about how we define the lives of people with dementia by what they can no longer do or what capabilities are diminished. How can we create awareness and support systems that focus instead on positive living, to focus on what is good in your life?

“I feel to create meaningful change, we need to support people to live with dementia, not only to die from it, and we need to change the public discourse away from tragedy and suffering as if that is the sum of our lived experience, to one that also highlights people can and do live beyond dementia.”

Hear from Kate and many other age care leaders and advocates at Akolade’s 2nd Annual Dementia Strategy Summit being held this October in Sydney.

Geethanjali has a Masters in Communications and Journalism and is a documentary film maker and producer. She is also a senior conference producer with over 10 years of experience. Previously she was Director of the Asia New Zealand Foundation Auckland Officer and also worked as a reporter/director for a Television New Zealand show.

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