Living Wills and Dignity-Based Dementia Planning

Advanced healthcare directives, or living wills, are a critical component of a comprehensive estate plan, providing guidance to family and caregivers regarding end-of-life medical decisions. But what happens if someone is suffering from a long-term, progressively worsening condition like dementia or Alzheimer’s? Should they be provided life-saving and life-prolonging therapies throughout their decline? And how should we care for someone who believes that being trapped in a mild or moderate state of dementia is intolerably demeaning? The truth is that standard living wills are not designed to address these complicated questions.

Posted on October 29, 2018

In response to this often overlooked aspect of healthcare planning, medical professionals, lawyers, and bioethicists have developed a number of tools for dementia-specific medical decision making. These tools are designed to ensure every person can create a dementia-specific advanced healthcare directive that clearly communicates their wishes and treatment goals at each stage of cognitive decline. Specifically, these tools provide dignity-centered options to those who would prefer to avoid a prolonged battle with dementia. And the emergence of these planning tools comes at a critical time: currently, approximately 6 million Americans are living with some form of dementia and this number is projected to rise to nearly 16 million by 2050.

How dementia-specific planning tools work?

Dementia-specific planning tools are predicated upon the idea that each of us is free to choose how to live with dementia and for how long. The tools provide an outline of the stages of dementia (often mild, moderate, and severe), including a description of symptoms associated with each stage, and ask individuals to select how they would like to be cared for at each milestone. The options include:

• Taking all measures to prolong life
• Taking all measures to prolong life except resuscitation and assisted respiration
• To receive care only in their home, even if they were to become very ill
• To receive only comfort-oriented care and no treatment that could prolong life (including antibiotics and other basic medicines)

There are no right answers: some people may choose to take all measures possible to prolong life even in the advanced stages of dementia while other may choose to reject life-sustaining care much earlier. The key is to find the right approach for you.

Why you should create a dementia-specific living will?

If a time comes when you are unable to make your own medical decisions due to dementia, having a living will that includes dementia planning is the best way to ensure your dignity and autonomy are respected. Additionally, a dementia-specific living will is a huge help to the family members and medical professionals overseeing your care: it can be difficult to make the decision to withhold life-saving or life-prolonging treatment for a loved one or patient that appears relatively comfortable and doesn’t face imminent death. Providing clear instructions reduces their burden and helps ensure you receive the right type of treatment at the right time.

When to start planning for a possibility of dementia?

Everyone should consider how they would want to be cared for if they were suffering from dementia. Ideally, this should be done before the onset of dementia-related cognitive decline: long-term healthcare planning is a complex task which may be overwhelming for individuals already suffering some degree of dementia. While it’s never too early to make arrangements for your future, we would recommend creating a dementia-specific living will before you turn 65.

If you have yet to execute a living will, or would like to add provisions to your living will that specifically address dementia, we would urge you to consult an experienced estate planning attorney today.