When I considered the potential problematic aging situations that I shared in my first blog post, they fell into two categories. I have seen how gastrointestinal cancer and depression have significantly shortened the lives of people in my family. While that is traumatic for the surviving loved ones, the suffering ends for the person who was ill. Using the CARA model in these circumstances, it would be most beneficial, on an individual level, to have financial stability to afford quality medical care. On a social level, having my family and/or an established living facility to support any needs that might arise from attending additional appointments would also be beneficial.

But these known circumstances are not what I wanted to focus on. I also mentioned concern around dementia, and the impact that it would have on my family. I feel as though this situation would not necessarily shorten my life expectancy, but instead put an abrupt halt to hopes that I have for a fulfilled later life. Dementia seems like a gradual stripping away of the self, not only from the individual but from an entire community. I imagine that I would be less physically active due to a lack of desire or a lack of safety. I would feel an immense amount of guilt for the burden that I know my loved ones will be taking on. Socially, I might become more reclusive, especially if my living situation needs to change for my own safety or to make things easier for my caregivers. Financially, I hope to be prepared to help afford care as it becomes increasingly necessary over time. While I initially thought the financial burden would have been of most significant concern, I keep coming back to the emotional strain that this diagnosis would have on myself and my family. If my spouse and daughter are still alive and able to care for me, as I said, I would feel incredibly guilty for the unknown journey ahead. I tend to be the levelheaded caregiver in my family, but a circumstance like this would disrupt that dynamic for all of us. I would feel a lot of pressure to organize and prepare as best I can for all possible outcomes. This is one of my anxious superpowers, if you will, and I imagine that I would exhaust that habit before it disappears.

I can’t think of much that would remain the same in this circumstance besides spending time with my family, even if it’s not in the enjoyable way I had imagined. My ability to enjoy experiences like seeing an innovative piece of theatre or trying quirky food combinations won’t mean as much. I can’t fathom losing the history that I have developed throughout my life and being able to add to those experiences in my own mind. Not being able to relish in visiting places I’ve always dreamed of, or watching my daughter accomplish her goals, with the memory of how far she’s come, feels devastating.

Using the CARA Model in this dementia scenario, I would first establish an advanced healthcare directive to ensure my family that while I am of sound mind, I know what I want for my future self. I would also need to organize my financial resources to alleviate my family of that responsibility and make sure that we find a facility where I can reside if my loved ones can no longer care for me. Most importantly, I want to be sure that my caregivers have a support system of friends, family, and medical professionals who can assist them through what could be a long and arduous experience. Here, resilience would mean being at peace with the fact that I have prepared my family and myself as best as possible. I hope to have a renewed sense of hope that whatever comes, I won’t face it alone.

Initially, I struggled to see how someone’s dementia diagnosis would be impacted by policy until I discovered the article A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families, Scheeres-Feitsma, T. M. Et. al (2025). This piece is from the Netherlands, and I learned that the law can have a direct influence on the choices one can make regarding their dementia care. The researchers interviewed seven people who had been diagnosed with dementia between six months and three years before the initial interview. Three years later, the able or surviving interviewees were reinterviewed, as were the family members who had attended their initial interview. Each of the participants in this study had expressed, to varying degrees, a desire to pursue euthanasia as a result of their diagnosis. What I found most intriguing is the participants’ understanding of the law regarding euthanasia and the concept of due care. Essentially, all participants prioritized self-determination and the impact on their family as reasons for their choice. Many leaned on relatives to fulfill their medical directives. What they did not realize is that the family’s input carries no weight. The final decision must be made by a physician in consultation with the patient. The fact that families were involved in the discussion around euthanasia was emotionally driven. In the study, two patients completed euthanasia during the three years between interviews, two willingly withdrew their directives, one still had not come upon the right time, one’s family no longer mentioned it because her desire had faded during the progression of the disease, and the last was beyond the legal parameters and no longer eligible.

This is where we really see the differences between these patients. The progression of disease varied for each person, as did the circumstances surrounding their care during the three years. To some, it was most important to follow through with what their sound mind had decided, and their families respected that. For others, they realized that living with dementia could be managed, while others no longer had an understanding of their disease and lived in the moment. As for the caregivers in this study, none of them showed opposition, as they hoped to honor the decisions of their loved ones. However, some were able to influence their understanding of how life could look after potential shock and fear gave way to living daily. This article puts into perspective the need to understand medical rights and regulations, but also reminds us that we can never predict what our journeys will look like. By establishing solid GRRs, we can rely on the safety net we have prepared.

References

Scheeres-Feitsma, T. M., Schaafsma, P., & van der Steen, J. T. (2025). A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families. Death Studies, 49(8), 1012–1022. https://doi.org/10.1080/07481187.2024.2376819