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Unpaid caregivers of seniors with dementia face higher rates of distress: report

A new report suggests more and more family members looking after loved ones with dementia are suffering distress, anger and depression. — Stock photo
A new report suggests more and more family members looking after loved ones with dementia are suffering distress, anger and depression. — Stock photo - Contributed

A new digital report by the Canadian Institute for Health Information (CIHI), shows that nearly half of unpaid caregivers — children, spouses, and other family — of seniors with dementia experience distress, anger and depression.

The Public Health Agency of Canada, which collaborated with the CIHI on the report, estimates over 402,000 seniors over 65 — or 7.1 per cent of Canadians (excluding Saskatchewan) — have dementia, of which some two-thirds are women.

The number of seniors in Canada with dementia increased 83 per cent between 2002 and 2013, with approximately 76,000 new cases diagnosed every year. This increase is believed to be the result of the growing Canadian population over 65.

In Newfoundland and Labrador, 49 per cent of seniors with dementia over 65, and 41 per cent of those over 80, are living outside of designated care facilities.

Of seniors living with dementia in Canada, approximately 61 per cent over 65, and 58 per cent over 80, are living outside of long-term care or nursing home facilities.

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Caregivers' voices: families can find themselves frustrated, alone in dealing with dementia

In the case of seniors in Canada with dementia, children make up 58 per cent, and spouses 32 per cent, of caregivers. Of these unpaid caregivers, 45 per cent experience distress compared to 26% of unpaid caregivers for other seniors, according to the CIHI report.

Unpaid caregivers of seniors with dementia tend to contribute an average of 26 hours of care a week compared to 17 hours provided to seniors without dementia.

“Unpaid caregivers devote so much time and energy to helping their loved one maintain their quality of life through the long course of this disease. We see that caregivers of seniors with dementia face significant challenges, especially as the disease progresses,” says Kathleen Morris, vice-president of research and analysis at CIHI.

According to the CIHI report, 38 per cent of caregivers of seniors with dementia show symptoms of distress, anger, or depression, and 21 per cent feel unable to continue with caregiving activities, which tend to be more intensive than in the case of seniors without dementia due to a higher incidence of cognitive impairment and a greater reliance on assistance in performing daily tasks.

In addition to physical and emotional struggles faced by caregivers of seniors with dementia is the financial burden which can result from caring for a loved one. An estimated $1.4 billion was paid out of pocket by unpaid caregivers of seniors with dementia in 2016, a figure expected to rise to $2.4 billion by 2031.

“A cloak of invisibility gets put on people living with dementia and, to some extent, their family. People avoid eye contact, they avoid conversations and they struggle with their awkwardness and grief,” says Catherine Ann of Newfoundland and Labrador, the primary caregiver to her mother, Isabel, who is in the last stages of dementia. “We need to change this — we need strong communities supporting people to stay at home as long as possible, to stay rooted in their family.”

Seniors with dementia, living at home, score worse on behavioural and cognitive scales and are more likely to have responsive behaviours such as verbal and physical abuse, socially inappropriate behaviour, and resisting care than other seniors living at home.

Of seniors with dementia receiving home care, 75 per cent do not exhibit any responsive behaviours, a larger portion than those receiving other forms of care.

In long-term care, seniors with dementia are more likely to be physically restrained (nine per cent compared to three per cent) and given potentially inappropriate antipsychotics (26 per cent compared to 11 per cent) than residents without dementia.

Seniors with dementia tend to spend more time in emergency departments, have higher hospitalization rates, and face more hospital harm than other seniors. 

In Newfoundland and Labrador, 34 out of every 100 seniors with dementia are hospitalized for medical conditions not requiring surgery. Nationally, seniors with dementia make up 12 per cent of hospitalizations.

The federal, provincial, and territorial governments have recognized the need to keep seniors at home and in their communities as long as it is suitable and beneficial for the person to do so. In addition, the recognize the stress put upon caregivers, and are expanding the services and programs available to support caregivers of seniors with dementia.

Based on the CIHI report, some recommendations and practices for keeping seniors with dementia living in the community longer include: avoiding unnecessary hospitalizations by ensure a safe environment, improving early detection, maintaining and improving activities of daily living, providing meaningful breaks to unpaid caregivers through respite and adult day care programs, and ensuring education, training, practice guidelines, and tools for primary homecare givers are available to support them.

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