Dementia and end-of-life care
In the early stages of the disease, you can help the person with dementia choose to make all or most of their arrangements in advance of death, such as the planning and pre-payment for a funeral or memorial service, and burial or cremation. The advantages of doing this early on are that the person with dementia is able to make their wishes known and you are not requested to make many difficult decisions or arrangements.
Even if you haven’t done a great deal of advance planning, it is very helpful to make some preliminary plans in advance regarding the choice of funeral director, the type of service and where it will be held, who will officiate, whether you want music or readings, and whether a burial or cremation is preferred.
“Pre-planning the funeral while my mom still had her faculties was a huge help. I couldn’t imagine having to go through all that without her direction.” – Debbie George, a caregiver in Halifax
For other people, however, making arrangements in advance may seem too final an action or too emotionally difficult. Whatever the degree of planning that has been done, it is important to know about the arrangements that need to be made after death.
Practical things to consider
- If the death is likely to occur in a long-term care home or hospital:
- Talk with the staff in advance if your faith, cultural or ethnic background requires any special customs or rituals after death, so that they can plan with you.
- Ask about end-of-life programs such as a guest room for privacy, comfort baskets and dignity robes to prepare the body for final viewing.
- The long-term care home may also have a respectful ritual to honour the person and family when the body is removed.
- If the death is likely to occur at home:
- Communicate with health-care providers (such as home care nurses) who need to be contacted at the time of death. As soon as possible after the person dies, an appropriate medical professional such as a doctor or nurse must be contacted to pronounce death. It may not be appropriate to call the emergency services if aggressive treatment is not in keeping with the person’s wishes, since ambulance crews are required by law to provide aggressive life-saving treatment unless a Do not resuscitate (DNR) order is in place.
- Write a newspaper obituary.
- Make decisions about gifts to charity. Include the information in the obituary.
- Keep a record of cards, visitors and donations so these can be acknowledged later.
- When planning the timing of the funeral, consider the schedules of people coming from out of town.
- Some people record the service so the words can be replayed anytime and be sent to those who could not attend the service.
“I wanted to do my mom’s eulogy. That was the end of the journey together through Alzheimer’s. My niece wrote a poem for mom and read it at the funeral. Mom had a lot of the arrangements pre-planned, which was a huge relief for me.” – Debbie George, a caregiver in Nova Scotia
- Planning a funeral from Canadian Virtual Hospice
Next section: Physical changes at end of life