While I hope to age well, I know there is always the possibility of living with dementia. Physically, this feels daunting. As someone who is already neurodiverse, I can imagine misplacing items more often, struggling with fatigue, and experiencing even slower processing than I already do. While those challenges worry me, I think I could adapt to the physical changes more easily than the emotional ones. Emotionally, I believe the experience would be challenging. I am a very independent person, and I imagine I would feel a mixture of grief, fear, and frustration over losing my identity, my independence, and the abilities I have worked so hard to build.

Socially, I can picture the embarrassment and frustration that might come from repeating a story without realizing it or struggling to find the right word. I know how isolating that could feel. Financially, aging can already present burdens, but dementia would add layers of expense such as increased doctor visits, medications, home modifications, support services, and, eventually, the likelihood of in-home or long-term care. For that reason, I believe early planning would be essential. Investments, power of attorney, and outlining my wishes for how I would like my dementia journey to unfold would ease the weight of uncertainty and reduce the pressure on loved ones when difficult decisions arise.

If I were to receive this diagnosis, I think my first reactions would be panic and denial. I would fear losing my independence, no longer being able to drive, and becoming a burden on others. Yet, knowing myself, I also believe I would feel a sense of urgency to advocate for myself while I still could, to share my wishes openly, and to establish support systems before the disease progresses. My vision of aging, traveling extensively, and enjoying spontaneity would inevitably change and become more localized. Structure would replace spontaneity, and work or travel might have to end sooner than I would like. With the right support, I would hope to continue enjoying the things that give me joy: hiking and crocheting, pottery, music, time outdoors, time with loved ones, and volunteering in smaller, more manageable ways.

Using the CARA model, I would focus on supports that reduce stress and help me conserve energy. Utilizing this model would mean leaning into predictable routines, surrounding myself with supportive people, and using adaptations that simplify daily life. Alongside this is the importance of Generalized Resistance Resources (GRRs), which are assets that make challenges more manageable. For me, GRRs would include tools like calendars and alarms, medication dispensers such as Hero, strong social support, engaging in meaningful daily activities, financial planning, and maintaining steady health habits, including regular exercise and following a Mediterranean-type lifestyle. Resilience, in this context, would not mean living without difficulty, but rather living days that feel more predictable, supported, and meaningful, even with cognitive decline.

A study completed by Peeters et al. (2023) explores how resilience can be understood and supported in people experiencing cognitive decline, including dementia. Peeters et al. (2023) define resilience as a system’s capacity to recover after a stressor, emphasizing that this applies not only at the micro-level (individual and care partner dyads) but also at the meso-level (communities, healthcare systems) and macro-level (societal and policy contexts). For example, at the micro level, resilience involves coping strategies that allow a person with dementia to adapt and maintain quality of life. At the meso level, dementia-friendly communities and integrated care networks can improve resilience by creating environments where individuals can continue to participate socially and feel supported. At the macro level, national strategies, such as the Netherlands’ providing personalized care to individuals living with dementia, illustrate how policy can build resilience by ensuring long-term, sustainable systems of support. Resilience appears to be not only individualistic but also shaped by care partners and families, but communities, and even national policies (Peeters et al., 2023). Reading this article made me think and shifted my perspective on resilience. Resilience is not just about inner strength, but also about the systems around us that can either weaken or sustain us.

Overall, imagining myself living with dementia is frightening, but it also shows me where hope lies. With early planning, supportive relationships, and communities designed to empower rather than isolate, life could still hold meaning, connection, and purpose, even if it looks a little different.

Peeters, G., Kok, A., de Bruin, S. R., van Campen, C., Graff, M., Nieuwboer, M., Huisman, M., van Munster, B., van der Zee, E. A., Kas, M. J., Perry, M., Gerritsen, D. L., Vreede-Chabot, E., The, A.-M., van Hout, H., Bakker, F. C., Achterberg, W. P., van der Steen, J. T., Smits, C., … Olde Rikkert, M. (2023). Supporting resilience of older adults with cognitive decline requires a multi-level system approach. Gerontology, 69(7), 866–874. https://doi.org/10.1159/000529337