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Dementia, Advance Care Planning, and COVID-19

Dementia, Advance Care Planning, and COVID-19

April 13, 2020 | Caregiver Resources

Advance care planning is the term used to describe the process of thinking about, discussing, and recording your wishes for your care at a time in the future when you are not able to make decisions for yourself. The most important part of this planning process is to designate a person who will speak for you when necessary. Another component is describing your wishes about future care, support, treatment, or values.  
Dementia plays an obvious role in advance care planning in that dementia can impair a person's ability to make decisions about his/her future. However, people with dementia are often still able to participate in an advance care planning process even well into the disease and should not be counted out of these decisions.  A well-known article in the Journal of the American Medical Association (JAMA) provides a host of tips for assisting people with dementia in advance care planning. A few of these tips include: 

  1. Start as early as possible, preferably when the person is in the earlier stages of their dementia. 
  2. Choose the correct advocate. A person who will be available, willing, and able to make responsible decisions for someone if the most valuable component of an advance care plan.  
  3. Do not assume the person does not have capacity to communicate their wishes for the future. A diagnosis of dementia does not automatically mean that the person does not have decision-making capability.  
  4. Integrate the conversation into everyday life. Look for casual opportunities to discuss the person's values or preferences.  
  5. Explore and document the person's general values and concerns.  
  6. Use a tool designed specifically for individuals with dementia. Several free advance care planning documents are available such as this one by Dr. Barak Gaster at the University of Washington. 

Even in the current time of COVID-19 and social distancing restrictions, there are several resources available to help anyone complete an advance care plan. One of our partners, Varnum Law, has shared information about remote notarization for estate planning documents including those designating a patient advocate and durable power of attorney. This allows anyone wanting to complete one of these documents to have it legally notarized using video instead of in-person witnesses. Another community resource, Making Choices Michigan, is helping individuals and families discuss and complete advance care plans via video or telephone conference. Contact them here.  

Rethinking Dementia has compiled additional resources on advance care planning in West Michigan and organizations who offer assistance with this process. Check out this page on our Resource Guide for more information. 

Sources and Further Reading: 
Advance Directives for Dementia: Meeting a Unique Challenge
Advance Care Planning in Dementia
NIH National Institute on Aging Advance Care Planning Resources
Making Choices Michigan

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Page last modified December 11, 2020