Let’s be friendly to people with dementia

Ronnie Nishmas, left, who lives with dementia, laughs with recreation therapist Rachel Gavendo while participating in a dance class at Baycrest hospital in Toronto on Tuesday, December 9, 2014. The dance class is a pilot project with Canada’s National Ballet School studying the effects of dance on seniors with dementia. (Darren Calabrese/Canadian Press)

Over half a million Canadians have dementia – a number expected to double within 15 years. An editorial published today in the Canadian Medical Association Journal urges Canada to meet the challenge by building dementia-friendly communities. 

The Alzheimer’s Society of B.C. says that dementia-friendly communities are places in which people with dementia and the family members that care for them feel included and supported wherever they live, work and play.  Dementia-friendly community refers to a physical space such as a city, a district or a neighbourhood.  It can also refer to a social community – a group of people with shared interests such as a social club, a religious organization, a group of professionals or even a business.  A 2016 report by the Standing Senate Committee on Social Affairs, Science and Technology proposed a national strategy for dementia-friendly communities to build social networks and environments that support people with dementia and their caregivers.

How the dementia-friendly approach works depends on the community and what it wants to accomplish.  You can change the physical environment.  Since people with dementia have trouble navigating, it might mean putting up signs that are clear and easy to read, with easy landmarks.  

You can also change the community in which the person lives.  For example, you can train transit workers, law enforcement officers, shopkeepers, bank employees and others to recognize symptoms of dementia and teach employees communication skills. People with dementia tend to wander.  You can train people in the community to look for signs that a person is lost and to help them.

The idea originated in Japan, which is the oldest society on Earth. Close to nine million people in Japan have dementia or a milder form of cognitive impairment.  The annual social cost of providing for their needs works out to $160 billion in Canadian funds.  I saw some of what Japan is doing when I visited in February. Since 2013, the Dementia Friendly Japan Initiative has partnered people who have dementia with private enterprise, academics and non-profit organizations to raise awareness and improve lives.  

The government launched a 10-year plan to build community networks.  It introduced compulsory long-term care insurance to meet the social as well as medical needs of seniors.  To reduce stigma, the government even banned the use of the Japanese word for dementia.  

Since 2005, the government has recruited and trained close to 6 million volunteers to support people with dementia.  The government has funded a multi-billion dollar ‘moonshot’ program to develop robots that can assist seniors with dementia; it’s years away from anything practical. Aside from that, much of what I saw in Japan depends heavily on the goodwill of volunteers.

The other tremendous challenges the one facing family members who care for people with dementia. An estimated 3.8 million Canadians provide informal care for a loved one.  They provide over 19 million hours of services per year, a number expected to double by the year 2031.  I think that’s an underestimate. Women provide 80 per cent of the care.  Often, it falls to an aging partner.  Dementia is a progressive disease, which means an older caregiver faces increasing burdens as their own capacity diminishes. At least one study found that informal caregivers provide an average of 8.2 hours of support day and night seven days a week with little or no respite.  

I watched my late father care for my mother for 15 years. It was a huge burden that ultmately hastened his health. For adult children, it means putting careers on hold.  At all ages, informal caregiving often leads to social isolation, burnout and depression.

The Senate committee report that I mentioned has 29 recommendations to improve care for people with dementia.  It calls for $3 billion in new funding over the next four years to beef up home care plus $540 million for long-term care.  The editorial in CMAJ says the federal government and the provinces should pay close attention to the report’s recommendations.  

The recent federal budget adopted proposals in the Senate report to use employment insurance and tax credits to provide some income relief to informal caregivers.  The editorial says those measures don’t go far enough.  More than that, paying people an income to care for loved ones isn’t the fix. Communities must step up to provide services and places to share the caregiving load to protect the health and mental resilience of informal caregivers. Those are laudable goals, but it’s going to cost a lot more money than Canadian taxpayers will be willing to pay.  

I adore the idea of dementia-friendly communities.  But I have grave doubts we’ll see them in Canada anytime soon. Looking at the example of Japan, I predict we’ll be depending more and more on the unpaid work of informal caregivers, and on the goodwill of volunteers.

Until I watched my dad throw everything he had into caring for my mother, I had no idea what it was all about.  Now I know.  Let’s stop calling them people with dementia.  They’re just plain people.