The overall goals of palliative and end-of-life care are to improve the quality of living and dying for people with dementia and their family. A palliative approach to care is not only beneficial at the end of life but often for months in advance. Palliative care can start much earlier and be provided at the same time as potentially curative treatments. A person may continue to receive any necessary medications. These include medications to manage chronic conditions such as diabetes or high blood pressure, as well as those that prevent pain and discomfort.
The Canadian Virtual Hospice defines palliative care as “an approach to care that focuses on comfort and quality of life for those affected by progressive, life threatening illness. The goal of palliative care is to control pain and other symptoms, support emotional, spiritual and cultural needs and maximize functioning.” In the past, a palliative care approach was most commonly offered to individuals in the final stages of dying from cancer. But there is now a consensus among experts that a palliative approach to care for people in advanced dementia is considered the best practice and that the care should be individualized to meet the needs, values and preferences of the person and their family.
“It’s important for staff to be informed about the ‘little things’ that will help keep the person comfortable.” – Barbara Dylla, a former caregiver in Montreal
Effective comfort care requires that staff have the skills to assess facial expressions, movements, reactions and changes in the individual so they can effectively diagnose and treat any discomfort. A person-centred approach to palliative and end-of-life care involves not only good physical care, but also compassionate communication and support to minimize the person’s emotional and spiritual distress, and maximize their comfort and well-being. The staff are there for you and other family members to confide in and to provide support.
Planning for end-of-life care should begin as soon as possible after a diagnosis of dementia. As part of this planning, people with dementia and their families may want to consider long-term care homes that adopt a palliative approach to end-of-life care and give staff the specialized training needed to provide personalized palliative care. Also, it may be helpful to check if the long-term care home provides a private space for the person and the family to spend final days or hours together.
- One chance to get it right, by the Leadership Alliance for the Care of Dying People, provides information on how individualized palliative care plans that reflect the needs and preferences of the dying person can be developed and carried out
- Comfort care at the end of life for persons with Alzheimer’s disease or other degenerative diseases of the brain: a guide for caregivers, by the Health and Social Services Centre — University Institute of Geriatrics of Sherbrooke (CSSS-IUGS)
- Webinar: Dementia and End of Life Care, by the Alzheimer Society of Canada and brainXchange
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