By Dalia Gottlieb-Tanaka, PhD
Looking after a person with memory impairment is complicated. Is enough being done to alleviate the burden of care?
Canadian and American reports on family caregiving, specifically unpaid care, do not describe a very favourable picture of the status of family care in the two countries. In fact, being a family caregiver (relative, neighbour, or friend) may cause depression, anxiety, loss of income, and may lead to chronic diseases.
In the report Families Caring for an Aging America by Schultz and Eden (2016), the authors found that “the pool of potential family caregivers is shrinking” due to lower birth rate and geographical distances that separate families. While women continue in the traditional role of caregiving, we see more males stepping in as caregivers, which forces them to juggle their responsibility to support their families economically with a need to care for their aging loved ones.
In 2016, as published by the Alzheimer’s Society of Canada, 564,000 Canadians are living with dementia and 56,000 people with dementia are being treated in Canadian hospitals. This leads to an important question: What is happening to the rest of the more than half a million people with dementia? Most probably, they still live at home or in thousands of care facilities spread across Canada. The Alzheimer’s Society reports that 1.1 million Canadians are affected directly and indirectly by this medical condition and this includes caregivers.
In British Columbia, the Ministry of Health publication The Provincial Guide to Dementia Care (May, 2016) reports there are about 62,000 people living with dementia in the province with a prediction of 87,000 people by the year 2024. The Prevalence and Cost of Dementia in Canada (2016) stated that the majority of care and support for people with dementia is actually provided by family caregivers. In 2011, about 400 million hours of unpaid caring were provided for people living with dementia.
Based on statistics published in Canada’s 2011 Census, the population in the Okanagan Corridor (North, Central and South Okanagan) is about 300,000 people. Twenty-seven percent of the total population in the Okanagan valley are seniors (65+), which is about 80,000 residents. In a Canadian Mortgage and Housing Corporation report on housing market information for the Okanagan/Thompson/Shuswap region, about 6,800 residents (75+) are in need of downsized housing with a potential growth to 8,500 to 9,700 in 2026.
So, what is being done in North Okanagan, mainly in Vernon, to alleviate the burden of care? To put it bluntly, not enough. And this underlines the concerns expressed in Canadian and American reports.
In the American report on the lack of support for family caregivers, Schultz and Eden stated that taking care of an older family member with memory impairment may last up to five years and even longer. In a typical situation, the realization that something is wrong with our loved ones’ functioning can come too late, and actions must take place almost immediately and on an emergency basis.
This is the time when our health authorities need to step in and offer substantial help. However, in the Vernon area, which I am familiar with, caregivers may consider themselves lucky to be put on a waiting list for educational sessions (there is room for only 25 people at a time). That’s where they’ll learn how to handle and interact with a person living with dementia. In addition, if an older person with dementia is assessed as incapable to continue living at home, the waiting time could take several months before that person is placed in a care facility. The more difficult cases will be referred to local hospitals, which are far from suitable for people with dementia. Families are then forced to care for their loved one at home.
Caring for a person with memory impairment is complicated. Caring families need to plan to accommodate physical changes to the house to make it safe, spend social time, and take on medical appointments and treatments. Most of us are not prepared with plans and strategies to make these changes as significant people in our lives become more incapacitated.
One would think that given the high percentage of older people living in the Okanagan area, this would be an important factor among the issues that focus on aging people. Unfortunately, efforts to develop long-term social plans and programs for older adults in Vernon have failed to attract the attention of either local governing authorities or granting agencies that might help. It is not enough to predict how many residential units will be needed to house older people in the Okanagan Valley; we need to think about their mental wellbeing as well. We need a place where family caregivers can join their loved ones and spend quality time together that is enjoyable for both of them. We need adult day centres that can provide appropriate quality programs, where a family caregiver is confident about dropping off mom or dad for a few hours a day or in a week, without feeling guilty or ashamed.
There is a great example of such a day centre in West Vancouver. Members with dementia enjoy wonderful social sessions based on creative expression activities. At times family caregivers join the sessions and learn how to interact with their loved ones, add interest to their daily routine, and at the same time have a much-needed break from providing care.
In the three years I have lived in Vernon, I have met family caregivers who are desperate to come up with suitable activities for their loved ones and find a support group that will share common concerns and offer practical solutions. Not all older adults with dementia can be accommodated in care facilities and many will continue to live among us in the community at large. We need to find ways to support them and their caregivers. Solutions and recommendations are discussed in reports and in the social media, but they need to be implemented sooner rather than later, as the population of seniors with dementia grows.
If you cannot join a local support group, you may want to check the following websites:
In Vernon, the Society for the Arts in Dementia Care offers a program for clients with early signs of dementia and their caregivers. Contact the Vernon & District Immigrant Services Society at #100 – 3003 30th Street, or call 250-542-4177.
Dalia Gottlieb-Tanaka, PhD, lives in Vernon. She conceived and developed the award-winning Creative Expression Activities Program for seniors with dementia. She continues to deliver presentations and workshops in the US, Canada, Israel, and Europe. Dalia founded the Society for the Arts in Dementia Care in British Columbia and is the moving force behind the annual international conferences and workshops on creative expression, communication, and dementia (CECD). Dalia can be reached at firstname.lastname@example.org.
*Reprint from our Seniors Health 2016/2017 Issue