As we discussed last week, the disconnect between reality and perception so common in dementia is not simply denial or stubborn pride. It is a medical condition called anosognosia, and it affects the majority of people living with dementia. Understanding this condition fundamentally changes how we approach conversations, decision-making, and future planning.
How to Approach an Existential Crisis
Gradually losing memory, independence, the ability to care for oneself and becoming dependent on others for basic needs may be the clearest definition of an existential crisis. Ignoring early symptoms or warning signs often increases the likelihood of this outcome.
However, choosing in advance what level of care and support we would want while we are still cognitively healthy can significantly reduce this risk. It can also ease the emotional strain and financial burden that so many families experience.
In the United States, care is often guided by a medical model, which emphasizes treating illness, maximizing safety, and prolonging life. While this approach offers clear benefits, in dementia it can lead to a gradual loss of autonomy and dignity. As cognitive decline progresses, increasing levels of assistance become necessary, often resulting in a prolonged period of dependence. In this context, maintaining physical health can sometimes mean extending life in a state of significant impairment.
An alternative is the social model of care, more common in parts of Europe. A well-known example is the dementia care community Hogeweyk, outside Amsterdam. Here, the focus shifts to quality of life, autonomy, and allowing a more natural life course.
Residents with moderate to severe dementia are free to move about independently, with access to shops, restaurants, and social activities. Interestingly, many become more physically active after admission. This environment does involve greater riskmsuch as falls or minor injuries. And when incidents occur, care typically emphasizes observation and comfort rather than aggressive medical intervention.
In contrast, under the medical model, a similar incident might result in an immediate trip to the emergency room and extensive testing. This experience is often exhausting and leads to increased confusion. When discussing these differences, many people express a preference for a shorter, more natural end over prolonged dependency.
This is why it is so important to clarify our preferences for care while our thinking is still clear.
Starting Difficult Conversations About Care Choices
My family once said to me, “Not everyone is comfortable talking about death at the dinner table.” So how do we begin these conversations?
Given what we know about the gradual loss of self-awareness in anosognosia, it is critical to clearly document now what conditions we would not want to live in, and what matters most to us at the end of life.
Here are practical steps to help guide this process:
1. Use conversation starters
Tools can make these discussions easier and more natural:
- Go Wish Card Game
(https://codaalliance.org/go-wish/)
This game helps individuals identify their top priorities at the end of life; such as being with family, being pain-free, or feeling that life is complete. Sorting these priorities into categories (most important, neutral, or discard) can open the door to meaningful conversations. - Five Wishes
(https://www.fivewishes.org/for-myself/)
This comprehensive document allows you to designate a medical decision-maker and clearly outline how you want to be treated, what care you prefer, and how you wish to be remembered.
2. Complete a dementia-specific healthcare directive addendum
Standard advance directives often do not address the gray areas unique to dementia. Consider including specific instructions such as:
- If I lose decision-making capacity due to dementia, I do not want my life prolonged; even if I appear content.
- Do not pursue diagnostic tests or treatments that are burdensome or painful and would keep me in a compromised state.
- Prioritize comfort, including the use of strong pain relief if needed.
- Do not coax, assist, or force me to eat. Allow me to eat only what I choose and can manage independently.
- Enroll me in hospice care as soon as possbile.
3. Use the Dementia Values and Priorities Tool
This resource helps define your care preferences in specific scenarios:
https://compassionandchoices.org/dementia-values-tool/
4. Designate the right decision-maker
Choose someone who can make difficult decisions and will honor your wishes – even in the face of disagreement from others.
5. Share your choices widely
Ensure your preferences are accessible. Share them with family members, your attorney, and your medical providers.
Looking Forward with Hope and Realism
More than 7 million Americans are living with Alzheimer’s disease in 2025, and nearly 12 million people provide unpaid care for those affected. Approximately 80% of this care takes place at home, and the burden is expected to grow as our population ages.
Understanding anosognosia reshapes how we navigate the dementia journey. It explains why loved ones may resist evaluation, deny the need for help, or struggle to understand our concerns. Most importantly, it underscores the urgency of planning ahead – before planning becomes impossible.
There is also reason for optimism. Prevention strategies offer actionable steps to support brain health (See Footnotes 1 and 2 below). Ongoing research continues to expand our understanding, and emerging treatments such as amyloid-targeting therapies (ATTs) are beginning to change the landscape.
By reducing stigma, adapting communication strategies, normalizing cognitive screening, and clearly documenting our wishes, we can better navigate memory loss. Even as independence fades, we can preserve dignity and honor personal autonomy.
Facing mortality directly may feel uncomfortable, but it can also reduce fear and deepen our appreciation for each day.
