Nothing About us Without us

Inclusion matters to those living with dementia

Mary Beth Wighton is frank about why she no longer carries a credit card and doesn’t have ready access to cash.

“People with the type of dementia I have struggle with finances,” says Wighton, 52, who was diagnosed with probable frontotemporal dementia, a type of young-onset dementia, six years ago.

But the conclusion to “close the bank” wasn’t made for her; it’s a decision she and her care partner came to together. Another change they negotiated was switching doctors shortly after her diagnosis. Wighton’s original physician equated dementia with incompetence, while her new doctor shares Wighton’s view that keeping busy and working hard — not giving up — is the best medicine.

“We realized very quickly that we had to do things for ourselves. We had to advocate for ourselves,” says Wighton. “No one else was doing that for us.”

In the years since her diagnosis, Wighton, who lives in Southampton, Ontario, has become an advocate for herself and a voice within Canada’s dementia community, telling others it’s their right to be included in decisions around their health, care, work and life. Her message is so strong that she was recently appointed to the Ministerial Advisory Board on Dementia — she is one of two people living with dementia who sits on the board, and her lived experience will help guide our national strategy.

To be meaningful, Wighton says Canada’s National Dementia Strategy must promote inclusivity, which is a hot topic in the dementia community. Also known as the “Nothing about us without us” movement, inclusion means letting people who are living with dementia have a say in decisions that impact them. It also means providing them with access to adequate support.

“It is about our basic human rights, as members of civil society, to be supported to live in our communities with support for our disabilities,” says Kate Swaffer, an international dementia and human rights activist based in Australia, who was diagnosed with young-onset dementia at age 49. “It is also about adequate health care, respectful language on our terms, and truly adequate — and mandated — disability support.”

Inclusion sounds like an easy concept to activate, but one of the biggest obstacles to dementia inclusivity is stigma. Because dementia affects cognition, well-meaning friends and family — and even those in the medical field — often assume people living with dementia are not mentally capable to make decisions.

So strong is this stigma, survey results released in January by the Alzheimer Society of Canada showed that 46 per cent of respondents said they’d be embarrassed to have a dementia diagnosis.

On the path toward equal inclusion, “the biggest hurdle I have seen is the systemic and gross underestimation of the capacity of all people with dementia, even in the later stages of the disease,” says Swaffer. “It is still too much ‘us’ and ‘them.’”

Surrey, B.C.-based Jim Mann agrees there is a lot more work to be done to get over the stigma. Mann, who is also on the Ministerial Advisory Board on Dementia, was diagnosed with Alzheimer’s in 2007 at the age of 58. In the intervening decade, he has worked hard to educate people about the condition.

“So many people think that, as soon as you’re diagnosed, it labels you incapable or incompetent and you immediately go into residential care. And, for most people, it’s a journey,” says Mann. “Most of us are able to live a good life with the diagnosis, and that’s a big message.”

It’s a message that will go a long way toward making inclusion a reality. [ ]