End of life planning for people with dementia

If your loved one has dementia, how do you create an end-of-life plan that accounts for their wishes? We look at the challenges and benefits involved.

End-of-life planning can come with unique challenges for people living with dementia and their families. We discuss some challenges and benefits, and how to create an end-of-life plan.
When it comes to end-of-life planning each one of us should discuss our wishes and plans for the decisions that may need to be made on our behalf at the end of our lives.
Talking now with those close to you and finding out what their wishes are can avoid confusion, guilt and heartbreak for the whole family, particularly if they are unable to communicate their preferences at a time that may already be very stressful and difficult for all concerned.
While this can be true for many conditions or situations, it is more so for a condition like dementia, which impacts a person’s ability to communicate, reason and make decisions. If a person’s wishes are not made clear and discussed before diagnosis or early in the experience of living with dementia, your loved one may not be deemed to have capacity to do so at end of their life. This leaves families with the responsibility of making difficult decisions at an already difficult time.

Advice for people in this situation

The important thing is to plan well ahead and have the discussions now. Advance-care planning can be supported by documenting the treatments they wish to have or not to have, and by them appointing someone with their legal consent to make these decisions in the event they are unable to do so. This type of forward planning supports the whole family by guiding them in regards to decisions throughout the loved one’s experience of living with dementia.
People living with dementia may still have capacity to make decisions and, if so, be given opportunities to do so. This can depend on the type of dementia and the progression of the condition. Doctors, nurses and other health professionals can support the person and the family to assess decision-making capacity.
If this planning hasn’t happened, families need support to make ‘best interest decisions’ on their behalf. This means ensuring any decisions are in keeping with your loved one’s personality and beliefs and are reflective of how they have lived their life.

Daughter kissing elderly mother

What are the most important things to consider?

Help them make a detailed plan. Don’t just think about treatments or pain relief – they can also plan to have people and things around them that give them comfort and a sense of belonging. This could be music, food, spiritual and cultural preferences or needs. By encouraging your loved one to provide as much detail as possible about how they want the end of their life to be, they are in turn giving you the gift of comfort  during a difficult time.

Where to find more information and support

For more information, advice and support, contact:

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