Over 500,000 Canadians are currently living with dementia, including 70% of persons living in long-term care. Each diagnosis of dementia (of which Alzheimer’s disease is the most common) influences around 3 family members and can affect people’s thinking, mood, behavior, personality, speech, swallowing and mobility. Many people do not understand that dementia is ‘not a normal part of aging’, ‘behaviours are caused by the disease and not controlled by the person’, and ‘just because a person looks physically fine, they may still be unwell’. Misunderstandings and symptoms make it challenging to provide care to persons with dementia and to support their family caregivers.
Each person’s journey with dementia is extremely unique, and depending on the type of dementia people may live 5 to 25 years! This makes predicting the future and preparing for end-of-life difficult. Increasingly, professionals are treating dementia as a chronic, terminal disease, which like cancer, can benefit from a palliative approach.
A palliative approach refers to care that focuses on quality-of-life, smooth transitions and whole-person care for the person with dementia and their family. A palliative approach can include ‘curative’ treatments (for example: cognitive enhancers or antibiotics), but the focus is on making quality-of-life the best it can be. Too often professionals focus on physical needs, while a person’s quality-of-life is greatly influenced by their social connections, emotional well-being, day-to-day activities and spiritual peace.
A palliative approach to care involves care planning and preparing to meet a person and families’ diverse needs and preferences (social, emotional, spiritual, practical and physical) from the time of diagnosis until after-death. Connecting families to resources earlier than during the last days and hours of life (for example: social work, chaplaincy, or palliative care consultants) can ease the journey, help families cope and adjust in bereavement. More and more, a palliative approach to care is being integrated into long-term care homes to optimize the quality-of-life for residents and families.
Strengthening a Palliative Approach to Care in Long-Term Care (SPA-LTC) http://www.chpca.net/projects-and-advocacy/projects/strengthening-a-pall…
Durepos, P., Wickson-Griffiths, A., Hazzan, A. A., Kaasalainen, S., Vastis, V., Battistella, L., & Papaioannou, A. (2017). Assessing palliative care content in dementia care guidelines: a systematic review. Journal of pain and symptom management, 53(4), 804-813. https://doi.org/10.1016/j.jpainsymman.2016.10.368
Funding Provided by: the Canadian Frailty Network, Canadian Institutes of Health Research, Canadian Nurses Association, Alzheimer Society of HNHB
Guest post by Pamela Durepos, PhD (c) Researcher; Caring Ahead: Preparing Families for End-of-Life in Dementia through a Palliative Approach.