Seniors living with dementia in Canada facing gap in palliative care
Few seniors living with dementia in Canada receive palliative care and end-of-life services, despite having higher mortality than other seniors.
The Public Health Agency of Canada reports that in 2013–2014, the age-standardized mortality rate for seniors living with dementia was 4.3 times higher than that for other seniors: 107.4 per 1,000 population age 65 and older compared with 25.3.Reference1
Dementia is an illness for which there is currently no cure. The Alzheimer Society of Canada suggests that when seniors living with dementia reach the terminal stage of the disease, a palliative approach may improve the quality of living and dying for both patients and their families. It advocates for a palliative approach for people with advanced dementia that should be individualized to meet the needs, values and preferences of each senior and family.Reference2
However, research suggests that — compared with seniors without a dementia diagnosis — seniors with dementia are less likely to be referred to palliative care teams, are prescribed fewer palliative care medications, and are infrequently referred to or are denied access to hospice care.Reference3
- Difficulties in assessing needs, specifically for seniors living with dementia, and making a prognosis of the course of disease
- Difficulty in predicting time to death for those with dementia
- Limited access to palliative care programs, especially in rural and remote communities
- Communication barriers between different health specialists and between providers and families
- Dementia in particular not being seen as a palliative care issue by families, patients and some health care practitioners
Findings from CIHI’s analysis
10,980 seniors with dementia died in acute care hospitals in 2015. More than half of them (67%) were identified as having palliative needs, and 21% of the 10,980 were hospitalized primarily for palliative care. These proportions were similar among seniors without dementia who died: 66% and 24%, respectively. However, the proportions were lower than those for the 21,726 patients who had cancer and died and didn’t have dementia: about 82% of patients with cancer were identified as palliative and 41% of these patients were admitted to hospital primarily for palliative care.
“The further away you get from having a metastatic cancer, the poorer the palliative care gets. The units in typical hospitals are not set up with behavioural environments such as seclusion rooms where you could manage someone who is agitated,” said Dr. Barry Campbell, medical director of geriatric psychiatry at St. Boniface Hospital in Winnipeg. “Such rooms could be created in the bigger centres.”
In long-term care
The number of residents with dementia who died and had a record of receiving hospice/palliative care in Canadian long-term care or nursing homes was 1 in 20. These numbers were similar for residents without dementia.
The lower proportions observed in long-term care than in hospital may be related to issues with capturing whether palliative care was provided — patients might have received care that was palliative in nature but that wasn’t recorded as such.
“Long-term care homes certainly provide end-of-life care, but sometimes not in the typical intense palliative care fashion that would be present, for example, in patients’ homes or hospices,” said Dr. Peter Tanuseputro, who is a physician in the Division of Palliative Care at the Ottawa Hospital and an investigator at the Bruyère Research Institute.
Long-term care facilities might also not all have the dedicated resources or specialized skills and knowledge required to provide palliative care.Reference8
At home with home care
Almost 20% of seniors living with dementia receiving home care were palliative home care clients, compared with 32% of seniors without dementia. The proportion of seniors who had a cancer diagnosis and were palliative home care clients was twice as large, regardless of the presence of dementia.
There might be data quality issues with capturing palliative care in patients with or without dementia. Patients might be identified as palliative but it is not always clear if they received palliative care services in acute care or home care. There may be under-reporting of palliative care provided in long-term care facilities.
- Back to reference 1 in text
- Public Health Agency of Canada. Dementia in Canada, including Alzheimer’s disease External link, opens in new window. Accessed March 9, 2018.
- Back to reference 2 in text
- Alzheimer Society of Canada. Dementia and end-of-life care External link, opens in new window. Accessed March 9, 2018.
- Back to reference 3 in text
- Tanuseputro P, et al. Palliative care delivery across health sectors: A population-level observational study External link, opens in new window. Palliative Medicine. 2017.
- Back to reference 4 in text
- Torke AM, et al. Palliative care for patients with dementia: A national survey External link, opens in new window. Journal of the American Geriatrics Society. 2010.
- Back to reference 5 in text
- Hines S, et al. The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: A systematic review External link, opens in new window. JBI Database of Systematic Reviews and Implementation Reports. 2011.
- Back to reference 6 in text
- Hill EM. Investigating Barriers to Access and Delivery of Palliative Care for Persons With Dementia in London, Ontario External link, opens in new window [master’s thesis, Western University]. 2014.
- Back to reference 7 in text
- Mitchell SL. Advanced dementia External link, opens in new window. New England Journal of Medicine. 2015.
- Back to reference 8 in text
- Canadian Hospice Palliative Care Association. End-of-life care in long term care External link, opens in new window. Accessed March 12, 2018.