The report, “Attitudes to Dementia”, tracks the world’s largest survey to date on people’s attitudes and stigma around dementia. Seventy thousand people across 155 countries participated, including 1,088 New Zealanders.
One of those New Zealanders living with dementia is Bronwyn Donald’s mother. She also suffers hugely from the stigma associated with the condition, with former friends not talking to her and people avoiding her.
Bronwyn, who lives in Whanganui, says her mother’s dementia means she doesn’t understand what’s happening to her, but Bronwyn says the way her mother is treated because of her condition is ‘appalling’.
“There’s no need for such awful and unfeeling behaviour. No one asks to get dementia, like no one asks to get cancer or have a stroke,” she says.
“And just because you’ve been diagnosed with dementia doesn’t mean you suddenly turn into some strange creature. My Mum’s still Mum and she still deserves to be treated with respect.”
The stigma associated with dementia is the subject of the world’s largest survey on attitudes to dementia. The survey was commissioned by Alzheimer’s Disease International (ADI) and released in time for World Alzheimers Day (September 21).
The report, “Attitudes to Dementia”, indicates the fear of developing dementia is high globally, but the true understanding of the disease is low. This is worrying, as Alzheimer’s disease and other dementias are the fifth leading cause of death globally.
Key findings from the report are:
- There is a startling lack of global knowledge around dementia, with two thirds of people still thinking the disease is a normal part of ageing rather than a neurodegenerative disorder.
- 95 per cent of survey participants think they could develop dementia in their lifetime.
- Around 50 per cent of people living with dementia feel ignored by healthcare professionals (physicians and nurses).
- One in five people attribute dementia to bad luck, almost 10 per cent to God’s will and two per cent to witchcraft.
Alzheimers NZ chief executive, Catherine Hall, says that regrettably, the findings around stigma and dementia are not surprising.
She says recent research in New Zealand shows Kiwis living with dementia suffer the same problems with stigma.
“There is significant social isolation, stigma and discrimination. People with dementia often feel they have no control over, and involvement in, decisions that affect them.
“Many people diagnosed with dementia report being marginalised as if their lives are over and of no consequence the moment the diagnosis is given.”
Ms Hall says the New Zealand dementia community is already striving to address these issues and a key tool for doing this is the draft NZ Dementia Plan that is being prepared by leading representatives in the dementia sector, including Alzheimers NZ.
The ADI report contains 10 recommendations, ranging from the need for targeted public health awareness campaigns to reduce the risk factors for dementia, through to more timely diagnosis, better in-community support services, both for people with dementia and their care partners, more emphasis on Dementia Friendly programmes and more funding for research.
Alzheimers NZ recently released a Dementia Declaration, written by New Zealanders with dementia, outlining what they need to live as well as possible with the condition, and without stigma and discrimination.
“People with dementia are among the most vulnerable in our society,” Ms Hall says. “They need our support and acceptance, not our disdain and insensitivity.”
Alister Robertson, who has dementia and who helped write the Declaration, said it is a vehicle for change.
“It is our plea to be treated with respect, kindness and acceptance.”
Mr Robertson says very few people with dementia fit the mental image that seems all too prevalent of the vacant, disconnected individual who has to be restrained in a dementia unit.
“By far the majority of us live at home and we continue to do our best to live our lives as well as we can.
“The only difference between us and you is that we just so happen to have developed dementia. We could have developed any other condition as we aged, but we didn’t.
“Yes, we are no longer who we used to be before the diagnosis but we still need to be treated with dignity and respect.
“That’s the whole point of our Dementia Declaration.”