Dementia researchers are taking care of caregivers

January 25, 2019 | By More

January is Alzheimer Awareness Month in Canada. This annual campaign raises awareness of the impact of Alzheimer’s disease, which is the leading cause of dementia. More than 400,000 Canadians aged 65 and older live with dementia.

According to the Public Health Agency of Canada, more than 400,000 Canadians aged 65 and older are living with dementia. The impact is double that number when you consider family members who act as caregivers – most often a spouse or adult child. 

Dementia progresses differently for each individual. Because it affects memory, behavior, mood, and communication, dementia can put a strain on a relationship and make caregiving difficult. A person living with dementia may appear to be unpredictable, irrational, and become frustrated, upset, or even strike out. These symptoms of dementia can leave caregivers feeling helpless and alone.

Imagine you’re a senior caring for a spouse with dementia. You may be retired and have your days free. But you may have your own health or mobility issues that make it difficult to provide the care you would like to give.

Now imagine you’re employed and caring for a parent with dementia. You’re holding down a full-time job and maybe raising children of your own. You may need to juggle medical appointments for your parent with your children’s appointments and activities. You may even have to absorb the cost of home care services to ensure your parent’s needs are met.

The time, energy, emotional, social, and economic costs of providing this level of care can result in a financial and emotional load that is overwhelming. 

The Canadian Consortium on Neurodegeneration in Aging (CCNA) is finding ways to support caregivers in meeting their practical and emotional needs. Their projects and tools will equip families and caregivers to support people living with dementia, nurturing the quality of life of all involved along the dementia journey.

Drs. Joel Sadavoy and Mary Chui, who are based at the Reitman Centre for Caregivers at Sinai Health System, are leading a CCNA team dedicated to responding to the challenges of caregivers. They developed the Reitman Centre Working CARERS Program, which helps improve a caregiver’s capacity to navigate the dual role of being employed and providing care full-time. This includes fostering problem-solving strategies, interpersonal skills, and an understanding of how to manage competing responsibilities.

“We’re investigating key factors that affect the practical, psychological, and social lives of Canadian family members who are employed while also providing care to a senior with dementia at home,” says Dr. Sadavoy. “Our goal is to understand their challenges and help them acquire skills and emotional resources to balance their competing responsibilities.”

The program is part of a larger component for caregivers within Ontario’s province-wide dementia strategy. Other forms of support include skills training, an online mindfulness therapy program, and an arts-based activity group for caregivers and people with dementia. These activities are designed to provide social engagement and strengthen the ability of caregivers to look after their loved ones while taking care of their own emotional well-being.

Although based in Ontario, these programs are now being assessed for their fit in rural communities in Manitoba and Nova Scotia. Based on what the CCNA team learns, they will work with corporate and community partners to scale-up the programs, enhance accessibility and use of the interventions that are effective, and promote health policy changes.

Podcast series broadcasts the voices of people with lived experience of dementia

When Mary Beth Wighton was diagnosed with dementia at age 45, one of her strongest impressions was of no longer being identified as her own person.

“I was referred to as a person living with dementia or a care recipient,” says Mary Beth. “It meant that my care partner could represent me.”

This was the first thing she worked to change in her role as an advocate for people living with dementia.

Mary Beth, who is the chair of the Ontario Dementia Advisory Group, shares this experience in the first episode of Dementia Dialogue, a website and podcast series.

The podcasts are based on a research project titled Mapping the Dementia Journey. The project  is led by Dr. Elaine Wiersma at Lakehead University in Thunder Bay, Ontario along with colleagues Dr. Pauline Sameshima also at Lakehead University and Dr. Sherry Dupuis at the University of Waterloo. Dr. Wiersma’s research is supported by the Canadian Institutes of Health Research.

David Harvey, former Chief Policy and Programs at the Alzheimer Society of Ontario, produced the podcast series as a means of increasing our collective understanding of dementia and gaining some insight on the lived experience of dementia.

“We chose the audio podcast format because of its intimate quality,” says David, who hosts the series and interviews participants. “You can draw listeners in and keep their attention that way.”

The first series of six podcasts focus on the topic of changing and adapting to the symptoms of dementia and relationship dynamics. They feature the stories of people living with dementia and care partners , who share their experiences in intimate detail. 

Guy Chadsey from Stratford, Ontario, whose wife Alison is living with Frontotemporal dementia, spoke candidly about the early indicators of Alison’s condition. He also talked about how he is attempting to reconstruct his life while honouring his commitment to his wife, who has lived separately in a nursing home for the past five years. 

Susan Bithrey from Thunder Bay, Ontario shared her experience of caring for her husband Reg, who lived with Alzheimer’s disease for 11 years prior to passing away. She talked about how she had to learn how to be a caregiver on the job and how she hopes she made life easier for her husband.

Dr. Wiersma believes it’s vitally important to actively include people living with dementia in the research process.

“We need to incorporate the voices of people living with dementia to appreciate their experience and build approaches to care that respond to their needs,” she says. 

In 2019, Dementia Dialogue begins producing a new podcast series on the “system journey,” emphasizing primary care. The podcasts are part of a broader collaboration between the brainXchange and the Geriatric Health Systems Research Group at the University of Waterloo.

Dance program leads to health and social benefits for people with dementia and their caregivers 

More than 60 years ago, in Sadie Hawkins style, Missy Drummond asked her neighbor Dennis on a date.

They went to dinner and a hockey game. The next week Dennis invited Missy to go skating. The rest, says Missy, is history.

Now married for six decades, Missy, 81, and Dennis, 85, who live in Brandon, Manitoba, have five children, five grandchildren, and four great grandchildren. They have accumulated a lifetime’s worth of wonderful memories. 

For Dennis, however, those memories are beginning to flicker. He was diagnosed with Alzheimer’s disease five years ago.

After spotting an ad in her local paper last year, Missy signed them up for an eight-week seniors’ dance program offered in their area. The Sharing Dance Seniors program is a joint venture between Canada’s National Ballet School and Baycrest Health Sciences, a seniors’ health care and research centre based in Toronto, Ontario.

Each week, Missy and Dennis joined a group at the Prairie Oasis Senior Centre for the classes. By video, an instructor led the participants through a combination of dance moves set to the popular music of the ‘60s and ‘70s. The moves exercised their memories as well as their bodies.

“People were a bit hesitant at first,” says Missy. “But once the program got going people relaxed, went along with the moves and sang along to the songs, which everyone seemed to know.”

The value of the program stayed with them outside of the class. Missy says she and Dennis continue to practice the routines while watching television. She even finds herself doing the moves while doing chores around the house.

As part of the program, the couple were also involved in a research study on the program’s effectiveness in promoting social inclusion among people living the dementia and their caregivers.

The project is being led by researchers at Brandon University and Trent University (in Peterborough, Ontario), with funding from the Canadian Institutes of Health Research and the Alzheimer Society of Canada. 

Dr. Rachel Herron, a health geographer and Canada Research Chair in Rural and Remote Mental Health at Brandon University leads the project in Manitoba.

Dr. Herron and the team recruited 100 participants in Manitoba and Ontario. They have gathered information on the experience of participants through weekly diaries, interviews, focus groups, and the observations of members of the research team during the classes.

“The feedback has been overwhelmingly positive,” says Dr. Herron. “For participants living with dementia, the program gave them an opportunity to get out, to be with others, and to do something rather than sit at home.”

The evidence so far suggests the dance program has enabled participants to build a sense of comfort, connect with others, and express themselves. One couple, for example, started going to community dances after taking part in the program.

“There have been many deeply satisfying moments for us in this project,” says Dr. Herron. “We have witnessed people in the program not just dancing but also growing and relating to others in a different way.”

Category: Articles, Lifestyle & Environment

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