Dementia and end-of-life care
Advance care planning
Advance care planning is the process of planning for a person’s future health-care based on conversations about their values and beliefs. Developing a clear plan in advance can reduce family distress and help ensure that the person receives the end-of-life care that they want.
“The window of opportunity to include the person in end-of-life decisions is well before they are gone. I started having these discussions with my parents as they were aging and getting more frail. I asked, ‘what would you like us to do?’ I believe in being proactive because it helps in the end.” – Rachael Mierke, a caregiver in Winnipeg
What should be discussed?
It is important that everyone involved in the conversation understands the progression of the disease and the typical needs near end of life so that you are able to talk about these issues early on.
Some questions you might want to think about and discuss are:
- If given a choice, would the person prefer to die where they are living (e.g. at home or in a long-term care home), in a hospice or in the hospital?
- What medical interventions, if any, such as cardiopulmonary resuscitation (CPR) or feeding tubes, would the person want?
- Does the person have any special wishes at the time of death, such as family and friends nearby, music playing, or specific faith or cultural rituals?
A person’s verbal wishes can be just as valid as a legal document, such as a living will or advance health directive, although it is still a good idea for the person to write down their wishes. A written advance care plan can name someone to be a substitute decision-maker when the person with dementia is no longer able to express their wishes for health and personal care decisions.
“Choose a person you can trust who will follow your direction.” – Rachael Mierke, a caregiver in Winnipeg
For more information on the types of planning to consider, please see Planning for the future.
- Tips for talking about end of life
- Speak up advance care planning workbook by the Canadian Hospice Palliative Care Association
- Decision-Making: Respecting Individual Choice in the Alzheimer Society’s Tough Issues series
Next section: Appointing substitute decision-maker(s)