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Planning Together for Living with Dementia

Patty SchwabAs a recent graduate of University of Utah’s Gerontology Interdisciplinary Program, I recently completed my master’s project.  I had hoped to find a way to cover what to expect with dementia and how to plan for future care in a way that would make it more accessible to people facing one of the greatest challenges that life can offer. However, what I really learned is that, no matter the value of the information or the style of approach, it’s understandably very challenging to start these difficult conversations. Yet, my review of the research on advance care planning has convinced me even more that these conversations are worth it!

Researchers have shown that advance care planning improves quality of life for people living with dementia by reducing worry (Poppe, 2013) and depression while also increasing their confidence (Hilgeman et al., 2014). Sharing preferences early in the disease also can add meaning and well-being to late life by improving the likelihood of receiving care that fits their preferences and lifestyle (Bravo, 2018). Yet, despite these benefits, the majority of people with dementia have not participated in advance care planning (Wendrick-van Dael et al., 2020). In case you or someone you know might need to know where to begin, here are some tools that can get you started.

First, start by checking out the “advance care planning” link at the top of this page.  The Utah Commission on Aging page offers all of the forms you need to plan for late-stage medical care (whether or not you have dementia).  These crucial forms include the Utah Advance Health Care Directive, a toolkit for documenting end of life wishes, the POLST form to direct medical providers, videos on how to use these forms, and a phone number to call if you need any assistance.  Then, if you’d like to expand your planning to include more dementia-specific care decisions, consider using one of these planning tools:

-The Conversation Project’s Starter Kit for Caregivers of People with Alzheimer’s Disease or Other Forms of Dementia (Institute for Healthcare Improvement, 2021): This tool goes beyond medical planning by addressing psychosocial preferences such as the type of support you want from others and what matters most to you during the last stage of life. This booklet also guides family members on how to sensitively lead these conversations.

-The LEAD Guide (Dassel et al., 2019): This tool, which is designed for the person with dementia to lead the discussion, also covers both medical and psychosocial care decisions as well as the values behind those preferences. It also provides space for people to specify anything else that’s important to them toward the end of life and to add updates if preferences later change.

No matter which tools you choose to use, remember to plan as early as possible because dementia does interfere with the ability to make and communicate decisions, sometimes sooner than you might expect. Also, keep in mind that your wishes are most likely to be met if you write them down and discuss them with your loved ones and medical providers.  But, if either discussing or writing them down makes you too uncomfortable, then at least do one or the other. Finally, keep the completed forms handy and share copies with your loved ones so that they can advocate for your wishes when the time comes.

While I realize that beginning advance care planning early in a disease can be quite difficult, making this hard choice now will bring you many more positive moments during the later stages of dementia. If you’re interested in more details on what to expect with dementia or how to plan for future person-centered care, you can listen to my recent discussion on this topic (and many other professionals’ helpful talks on dementia care) at Utah Geriatric Education Consortium’s Fireside Chats page.

Bravo, G., Sene, M., & Arcand, M. (2018). Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: Which is more likely to reflect the older adult’s preferences. Journal of Medical Ethics, 44(7), 498-503.

Dassel, K., Utz, R., Supiano, K., Bybee, S., & Iacob, E. (2019). Development of a dementia-focused end-of-life planning tool: The LEAD guide (Life-Planning in Early Alzheimer’s and Dementia).

Innovation in Aging, 3(3), 1-12.

Hilgeman, M. M., Allen, R. S., Snow, A. L., Durkin, D. W., DeCoster, J., & Burgio, L. D. (2014). Preserving Identity and Planning for Advance Care (PIPAC): Preliminary outcomes from a patient-centered intervention for individuals with mild dementia. Aging & Mental Health, 18(4),411-424.

Institute for Healthcare Improvement. (2021). The conversation project

Poppe, M., Burleigh, S., & Banerjee, S. (2013). Qualitative evaluation of Advance Care Planning in Early Dementia (ACP-ED). PLOS ONE, 8(4), 1-7.

Wendrich-van Dael, A., Bunn, F., Lynch, J., Pivodic, L., Van den Block, L., & Goodman, C. (2020). Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences. International Journal of Nursing Studies, 107, 1-13.

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Last Updated: 7/27/21