Alzheimer’s Australia NSW is calling for cultural change in the community to help people with dementia live well, following the release of a new discussion paper, Living Well with Dementia.
Released to coincide with the inaugural Alzheimer’s Australia NSW Living Well with Dementia Conference, held in Sydney, the discussion paper recommends a shift in attitudes away from the commonly-held belief that a diagnosis of dementia means people are incapable of making their own decisions, and focusing instead on supporting them to do what they want and enjoy for as long as possible.
Alzheimer’s Australia NSW CEO The Hon. John Watkins AM said the research shows people with dementia don’t want to be told what to do or not to do; rather they want to be supported to do what they want to do for as long as they can.
“We know all too well how difficult and devastating a diagnosis of dementia can be,” Mr Watkins said.
“But our research also shows that people can live well with dementia by staying active and importantly, being supported to maintain their independence and continue to do the things they enjoy. To do this, we all bear some responsibility. There has to be broad societal cultural change so that when someone receives a diagnosis, they are not just written off, ignored and forgotten, which is what we so often hear.”
Mr Watkins said in order for this cultural change to be achieved, government investment in creating a dementia-friendly nation is crucial.
“Investing in incorporating dementia-friendly design and principles is vital for better dementia care provision in aged care facilities that is innovative and supportive – as is continued education for individuals with dementia and their carers living in the community, along with increased awareness and understanding among the general population,” he said.
There is an estimated 353,800 Australians living with the dementia – 115,000 of these live in NSW – and without a significant medical breakthrough, that number will increase to 900,000 by 2050.
Much of the focus of previous research on dementia has been on associated negative impacts, and as a result has done little to address the stigma attached to the disease. While there is an existing body of research looking into the quality of life and wellbeing of people caring for someone with dementia, few resources have voiced the thoughts, views and opinions of people with dementia and their carers in terms of living well with a diagnosis.
Trevor Crosby, who was diagnosed with younger onset Lewy Body dementia at age 65, says his strategy to live well with his diagnosis revolves around choosing to occupy his life fully with activities he finds enjoyable.
“This means spending time with my family, cultural experiences, and also participating in regular sport and exercise activities. I believe getting on with life by taking on activities that I enjoy has been crucial in my ability to live well with the disease,” Mr Crosby said.
In surveys and interviews conducted with people with dementia as part of the discussion paper, many respondents expressed a desire for attitudinal change towards people with the disease, and for more of a focus on giving choice to people with a diagnosis of dementia.
“I like to take part in new and exciting things, but my wife thinks they’ll do me more harm than good. I understand the risk involved, but it’s what I want to do,” said one of the respondents.
Another said: “If you get involved in something you get pleasure and enjoyment from, I guess that means you’re experiencing joy to some extent. Having dementia isn’t joyful, but your life with it can be enjoyable.”
Similarly, carers highlighted a need for change both in general community attitudes and in the provision of care and support services, with some expressing concerns about the lack of purposeful and engaging activities offered by service providers and the community.
“The activities offered by the respite service do not have a purpose. They are just entertaining/fill in the day. From my perspective, they seem more like a babysitting service. People with dementia can and should live a meaningful life, but quite often don’t as there isn’t the support and infrastructure for them in the community,” one carer said.
The research looks at key concerns and potential solutions to the challenges faced by people with dementia and their carers and it is hoped the findings of the discussion paper will help to reframe the conversation around dementia to be more positive.
“As a society, we need to shift our thinking regarding people with dementia,” Mr Watkins said.
“If we want to truly provide the best support to people with dementia, we cannot focus solely on clinical care. We must place more of an emphasis on the mental and emotional needs of individuals.
“A diagnosis of dementia does not define a person and does not mean they do not know what they want and how they wish to live their lives. People with dementia can be capable of making their own decisions and it is important they be allowed to do so.”
Recommendations from the discussion paper include:
Given the loneliness and isolation that can be experienced by those living with Dementia I wonder if now is the time to begin setting up phone hot lines for those living alone or even those with a partner who is still having to work for tele-chats, if the hot lines became (eventually) localised it could be that a D-Mate could come around for a visit...? D-Mates could be male or female, of any age.
Hi John, Here is the link to the discussion paper online https://nsw.fightdementia.org.au/files/NSW/documents/Discussion%20Paper%20Living%20well%20with%20dementia.pdf. Would you also like a hard copy sent to you as well? The Dementia Daily Team
Can you please send to me the discussion paper? I have YOD and endeavour to live well with dementia and also advocate for many issues surrounding dementia. Thanks