Unpaid caregivers of seniors with dementia are more likely to experience distress and spend more time providing care compared with caregivers of other seniors.

This information is a part of Dementia in Canada, a new digital report by the Canadian Institute for Health Information (CIHI). The report highlights various challenges in providing care for seniors living with dementia, including those faced by unpaid caregivers.

Most seniors with dementia in Canada live at home and need support to do so, which is why the role of unpaid caregivers is so important. The data reveals the following:

  • Children and spouses most commonly take on the role of caregiver of seniors with dementia (58% and 32%, respectively).
  • 45% of caregivers of seniors with dementia experience distress, compared with 26% for caregivers of other seniors.
  • Unpaid caregivers of seniors with dementia spend an average of 26 hours a week providing care, compared with 17 hours for caregivers of other seniors.

“A cloak of invisibility gets put on people living with dementia and to some extent their family. People avoid eye contact, they avoid conversation and they struggle with their awkwardness and grief. 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.”

— Catherine Ann, caregiver

“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. We hope that our report will help spark conversation about how to better support these people, who play such an essential role in health care systems.”

— Kathleen Morris, Vice President, Research and Analysis

Impact of dementia

The Public Health Agency of Canada (PHAC), which collaborated closely with CIHI on this report, estimates that more than 402,000 seniors in Canada, or 7.1% of all people 65 and older (excluding Saskatchewan), have dementia; two-thirds of those are women.

The overall increase in the population of Canadians 65 and older is a primary contributor to the increase in the number of seniors with dementia in the country. The number of seniors with dementia increased by 83% between 2002 and 2013. The PHAC data shows that approximately 76,000 new cases of dementia are diagnosed in Canada every year — which is about 14.3 new cases per 1,000 people 65 and older.

“These statistics demonstrate the significant and growing impact of dementia on Canadian society. That is why the Government of Canada has made it a priority to work with stakeholders and partners from across the country to inform a national dementia strategy. Our joint collaboration, evidence and advice, including what we heard at the National Dementia Conference last month, will position Canada to provide the best possible support and quality of life for people living with dementia, their families and their caregivers.”

— The Honourable Ginette Petitpas Taylor, Minister of Health

Dementia across the continuum of care

The report describes the differences in care experienced by seniors with and without dementia. Data on settings such as home care, long-term care and hospital care are included.

Some key findings include the following:

  • 61% of seniors with dementia live at home. Most of them require support to do so comfortably.
  • In long-term care, seniors with dementia are more likely to be physically restrained (9% versus 3%) and given potentially inappropriate antipsychotics (27% versus 11%) than residents who do not have dementia.
  • Seniors with dementia spend more time in emergency departments, have higher hospitalization rates and experience more hospital harm.

Spotlight on issues

The report also features information on family doctor preparedness, the impact of falls, access to palliative care, young-onset dementia, prevention and treatment and unpaid caregivers.

Highlights for these topics are as follows:

  • 2 out of 5 Canadian doctors feel well-prepared to manage the care of their patients with dementia.
  • Fewer seniors with dementia receive palliative care and end-of-life services than seniors without dementia.
  • Hospitalizations for falls are about 23% higher for seniors with dementia in lower-income neighbourhoods than in more affluent areas.
  • 3% of dementia cases are diagnosed before age 65 (young onset). Canadians with young-onset dementia may face more stigma related to the disease and have unique challenges because they are likely still working.

About CIHI

The Canadian Institute for Health Information (CIHI) is an independent, not-for-profit organization that provides essential information on Canada’s health systems and the health of Canadians.

We provide comparable and actionable data and information that are used to accelerate improvements in health care, health system performance and population health across Canada. Our stakeholders use our broad range of health system databases, measurements and standards, together with our evidence-based reports and analyses, in their decision-making processes. We protect the privacy of Canadians by ensuring the confidentiality and integrity of the health care information we provide.

Understanding the lived experience of Canadians with dementia and those responsible for their care is essential to improving access to health services and maintaining the quality of life for those affected by the disease.

This report is part of a broader CIHI commitment to improve information on issues affecting seniors in the country, as described in our strategic plan.

About PHAC

The Public Health Agency of Canada (PHAC) empowers Canadians to improve their health. In partnership with others, its activities focus on preventing disease and injuries, promoting good physical and mental health, and providing information to support informed decision-making. It values scientific excellence and provides national leadership in response to public health threats.

We are a federal institution that is part of the Health portfolio External link, opens in new window.

Media contact

Olivia Olesinski

Riley Denver