Planning ahead - End of life care and support - Considerations

Although the topic of care and support for end of life is not easy to discuss early in the disease, it is important to express your preferences to your partners in care so there is no confusion or questions when you are no longer able to make decisions.

Some decisions you may need to make include:

• your preference for the use of artificial or tube feeding when swallowing becomes difficult
• mechanical respirators or ventilators if you are no longer able to breathe on your own
• cardiopulmonary resuscitation (CPR) if your heart stops
• surgery
• use of antibiotics or use of medications that may no longer be providing a clear medical benefit (e.g., drugs that lower cholesterol, drugs for osteoporosis) as your condition declines

These care decisions should also include limitation, withdrawal or refusal of these procedures and treatments. Talk with your partners in care and especially your Power of Attorney for Personal care now about your wishes regarding each of these items. 

Some other advance care planning decisions include where you want to live, what you want to eat and wear, and your preferences for personal care such as grooming. The ultimate goal for advance care planning is to maintain your dignity and comfort when you are no longer able to communicate your wishes.

Source: The information above comes from the following sources:

Compiled with additions with permission from Alzheimer Society of Peel (n.d.). Your guidelines to "A journey through care". Mississauga, Canada: Alzheimer Society of Peel.

Reprinted with permission from Mobile Interprofessional Coaching Team (MICT): Focus on Seniors Mental Health. (2009). Planning for the future: Understanding the language. In Living with Dementia: A Guidebook for Families. Ontario, Canada: MICT

Be sure to think about your wishes for care as your dementia progresses, and be sure you write it down as well. It is very important to communicate openly with your family, friends and your care team.

• Record items that are important to you so your family keeps them nearby
• Record dates that are significant to you, so they can still be acknowledged
• Record activities that you value, so that you can continue to take part in those even if it requires someone doing it with or maybe eventually for you
• Talk about when you and your family feel it is appropriate to move from your home into a home where there is more assistance is provided
• Be sure you have a substitute decision maker. It is helpful to let all of your friends and family members know who that person is.
• Discuss how you wish to be cared for in later life (do you want heroic measures taken? or do you just want to be kept comfortable with palliative care?)

Source: The information above was compiled from Alzheimer Society of Canada. (2003, November). Shared experiences: Suggestions for those with Alzheimer’s Disease. Ontario, Canada: Alzheimer Society of Canada..