26 Jun Ask Alice July 2020

Dear Alice,

Hi! It’s me, the Concerned Supporter again, with the questions you suggested I send you last month.

My questions are about planning for the possibility of dementia. A friend of mine who has seen several family members go through Alzheimer’s is currently doing his Advance Directive (AD), and he wants to think about his dementia-related wishes now and include them in his AD. What is the best way for him to do this? I have also started the AD process, but haven’t really thought about or discussed dementia-related wishes specifically. Is this something everyone should do?

Thanks for your help,

Concerned Supporter

Dear Concerned Supporter,

Great questions!

In recent years, we have certainly seen more people who are concerned about the effects of dementia as they age, and who want to make sure that the state of their cognitive abilities is taken into consideration when health care decisions are made for them. Fortunately, as dementia has become more prevalent, various tools have emerged to make it easier to include dementia-related concerns in the advance care planning (ACP) process. These tools provide information about the stages of dementia, and include forms which an individual call fill out to indicate the type of treatment they would want in the different stages. Some also address the desired location of care (i.e., how important is it to stay out of the hospital?), and the types of assistance in eating and drinking that would be acceptable. These forms need to be signed and witnessed like the AD, and then become a part of the AD. Some people also use the tools to think and talk about dementia-related issues, but then simply write their own statement about dementia as part of their AD rather than using one of the forms.

Please suggest that your friend give us a call. Our volunteer facilitators have easy access to these tools and can help him use them to address his concerns, and to make sure his dementia-related wishes become a meaningful and valid part of his AD.

With respect to your second question, the answer is no, this is not something everyone needs to do when they initially do their AD. It is a good idea to go ahead and address it if you are already starting to show signs of dementia, or if dementia is something you think and worry about a lot, usually because you have seen a lot of it in your family. Otherwise, it may not be necessary at this point. You should be assessing the need for updates to your AD and plan regularly, and since dementia progresses gradually, you should be able to take on these issues as soon as you or a loved one starts seeing signs of it. Moreover, even with the tools, addressing dementia in your initial AD will probably make your ACP conversations a bit more lengthy and complex. So if you don’t feel the need to address dementia now, don’t worry about it. Just remember that ACP is an ongoing process, and your plan will need to change as you do.

Thanks for your questions, and stay well!

Best wishes, Alice

As always, please contact Don Freeman, Taking Steps Brattleboro Coordinator, 802-257-0775, ext. 101, or don.freeman@brattleborohospice.org, for information about Advance Care Planning.

Till next month, folks. Please send your questions to Alice via info@brattleborohospice.org .