Alzheimers New Zealand will be releasing a Dementia Declaration today in conjunction with research being launched on experiences of people living with dementia and care partners.
The declaration, written by Kiwis who have dementia, outlines what people with dementia need to live well in New Zealand.
Alzheimers New Zealand board member, Alister Robertson, who has dementia, will issue the declaration when the This is our story research is launched.
The declaration is a first for the New Zealand dementia community, he said.
“We wrote the declaration as a vehicle for change. For too long people living with dementia have been marginalised and stigmatised, both by society and by the health sector.
“Our lives do matter…we want to be treated the same as everybody else…we’re asking that we be treated with respect, kindness, understanding and acceptance.”
Robertson, who was diagnosed with Alzheimer’s disease in 2014 at the age of 60, said problems facing people with dementia include a lack of adequate and appropriate support and care services and difficulties navigating the health system.
“Add to that the social isolation, stigma and discrimination, the lack of control over, and involvement in, decisions that affect us and being marginalised as if our lives are over and of no consequence the moment the diagnosis is made.”
Robertson, who lives in Napier, said his journey to a diagnosis started when went to his GP after noticing he was having difficulty with some tasks and because his father had Alzheimer’s he thought he should get tested.
“Even though in the back of my mind I knew that I would receive a diagnosis, I was still shocked when it came.”
The first 12 months were the hardest because his whole life had to change, he could no longer drive, he had to give up his business and he felt like he had lost his status.
“Your life is turned upside down.”
One of the hardest things for Robertson and his wife to deal with was the stigma and lack of understanding from society.
“People think of the later stages of dementia…I’m still the same person as I was before the diagnosis.”
Robertson said the declaration will be made available throughout the country for people to measure themselves against.
“We hope the Declaration will help to change things for the better.”
Alzheimers New Zealand chief executive Catherine Hall said the declaration is a really strong statement about what people with dementia want and need.
“It’s the first action that has come out of the research, I’m really excited about it.”
People can pledge their support and share the Dementia Declaration by visiting www.alzheimers.org.nz/our-voice/dementia-declaration.
Banner: Alzheimers New Zealand board member Alister Robertson, who has dementia, will issue the declaration today. Photo/Supplied