In my latest post for Blog 1 I shared that one aspect of aging that genuinely concerns me is cognitive decline, particularly dementia. Because I have witnessed dementia affect my family, imagining myself in that situation is not merely an academic exercise. My great grandmother could not remember who my family and I were and did not remember that we came to visit her. My grandma would cry and the nurse would write a note on the board sharing that we came to visit.
I understand that dementia can gradually change a person’s memory, communication, decision-making, relationships, and ability to complete everyday activities. The possibility of forgetting important experiences, becoming unable to recognize my children or grandchildren, or losing the ability to express myself is frightening.
Physically, dementia could eventually affect my ability to manage daily activities safely and independently. I might need assistance with preparing meals, taking medication, driving, maintaining personal hygiene, or moving safely throughout my home. Although dementia primarily affects cognitive functioning, its consequences could influence nearly every part of my physical well-being. I might become more dependent on others and eventually require home-based assistance, adult-day services, assisted living, or another form of long-term care.
Emotionally, I believe I would initially experience fear, sadness, frustration, and grief. Much of my identity is connected to being a father, minister, author, speaker, and community leader. I use my memory and communication skills to preach, write, mentor others, and lead Rebuilding Broken Men, Inc. Losing some of those abilities could make me feel as though I were losing important parts of myself. I might also experience anxiety about becoming a burden to my children. However, I would want my family to remember that needing help would not make me less valuable or less deserving of dignity.
Socially, dementia could make it more difficult for me to maintain relationships and participate in activities that give my life meaning. I might withdraw because of embarrassment or because following conversations had become difficult. Friends or relatives might also stop visiting because they felt uncomfortable or did not understand the condition. One of my greatest concerns would be having people speak around me instead of speaking directly to me. Even if my communication abilities changed, I would still want companionship, affection, spiritual connection, and opportunities to participate in family and community life.
Financially, dementia could create significant expenses for medical appointments, medication, transportation, home modifications, professional caregiving, and long-term care. My children or other relatives might have to reduce their working hours to assist me, affecting their finances as well. I would therefore want to prepare early by organizing my finances, investments, estate planning with a lawyer, completing advance directives, communicating my care preferences, and determining who I trust to make decisions if I am no longer able to make them independently.
My initial reaction to this imagined situation is fear. The thought of looking into the faces of my children and being unable to remember who they are is especially painful. I would also be frustrated by knowing what I once could do but struggling to perform the same tasks. Nevertheless, I do not want fear to cause me to view people living with dementia as if their lives have ended. A diagnosis may change how someone lives, but it does not erase that person’s humanity, history, relationships, faith, or need for purpose.
Changes to My Imagined Later Life
In my ideal later life, I remain active and independent. I imagine myself preaching, writing, mentoring younger people, traveling, studying Scripture, enjoying my family, and watching the work of Rebuilding Broken Men, Inc. continue to grow. Dementia could change that vision significantly. I might no longer be able to travel alone, lead an organization, prepare sermons independently, or remember everything I had accomplished. My schedule might become more structured, and I might need reminders, supervision, or assistance with decisions.
However, I would not want everything about my envisioned later life to disappear. My need for love, faith, family, respect, and meaningful involvement would remain. Even if I could no longer preach an entire sermon, I might still find comfort in hearing Scripture, singing familiar hymns, praying with someone, or attending worship. Photographs, recordings, books, and stories from my life could help my family connect with me. My activities might become simpler, but they could still have meaning.
This reflection has helped me distinguish independence from dignity. Independence means being able to do things without assistance, while dignity means continuing to be respected even when assistance is necessary. Dementia might reduce my independence, but it should never remove my dignity or my right to participate in decisions for as long as possible.
The CARA Model, GRRs, and Resilience
The Coping, Appraisal, and Resilience in Aging model explains that resilience is influenced by how an older adult appraises a stressful situation, the coping strategies the person uses, and the resources available to support adaptation. Aldwin et al. (2024) found that resilient older adults may draw upon their lifetime experiences to conserve coping effort while maintaining a sense of coping effectiveness.
My initial appraisal of dementia would probably be that it represented danger, loss, and helplessness. The CARA model challenges me to consider whether I could gradually reappraise the situation. Reappraisal would not mean denying the seriousness of dementia. Instead, it would mean recognizing what remained possible, determining what I could still control, and accepting help with what I could no longer manage alone.
My generalized resistance resources, or GRRs, would include personal, interpersonal, spiritual, professional, and material resources. Personally, my education, communication skills, life experiences, sense of purpose, and ability to advocate for myself could help me cope during the earlier stages. Spiritually, my faith in God, prayer, Scripture, church community, and belief that my worth is greater than any diagnosis would be essential resources.
My social resources would include my children, extended family, friends, church members, and trusted caregivers. Professional resources could include social workers, physicians, neurologists, counselors, support groups, cognitive-stimulation programs, and adult-day services. Financial resources, health insurance, stable housing, transportation, advance directives, and long-term-care planning would also influence my ability to adapt.
In this situation, resilience would not necessarily mean defeating or reversing dementia. It would mean adapting to changes while preserving as much functioning, connection, identity, and quality of life as possible. Resilience would involve accepting appropriate assistance, remaining involved in decisions, continuing meaningful activities, and allowing my relationships and faith to support me. It would also mean having caregivers who focused on my abilities instead of seeing only my limitations.
What the Research Shows
Clare et al. (2019) studied 1,547 people living with mild-to-moderate dementia and examined factors associated with quality of life, life satisfaction, and well-being. Psychological characteristics and psychological health had the strongest independent association with participants’ perceptions of living well. Physical health, social resources, environmental circumstances, and the ability to manage everyday life were also relevant. This article challenged my assumption that dementia would automatically eliminate the possibility of a meaningful later life. It showed me that emotional health and supportive environments can influence how someone experiences the condition. The diagnosis matters, but the person’s entire life should not be reduced to that diagnosis.
Woods et al. (2023) examined cognitive stimulation as a clinical intervention for people with dementia. Cognitive stimulation involves enjoyable activities designed to stimulate memory, thinking, concentration, communication, and social interaction, often in a group setting. Their systematic review included 37 randomized controlled trials involving 2,766 participants with mild-to-moderate dementia. The researchers found moderate-quality evidence of a small, short-term cognitive benefit. Participants also demonstrated improvements in communication and social interaction, with slight benefits in areas such as mood, well-being, and daily functioning. The intervention does not cure dementia, but it may help individuals preserve certain abilities and remain socially engaged.
These articles reinforced the importance of person-centered care. If I developed dementia, I would want treatment to address more than my test scores or symptoms. I would want my caregivers and social workers to consider my relationships, spiritual life, emotional health, personal history, environment, and remaining strengths. The research gave me a more balanced perspective: dementia is still one of my greatest fears about aging, but a diagnosis does not mean that dignity, connection, growth, and meaningful moments are no longer possible.
References
Aldwin, C. M., Choun, S., & Spiro, A. (2024). The coping, appraisal, and resilience in aging (CARA) model: Longitudinal findings from the Normative Aging Study. Psychology and Aging, 39(8), 884–896. https://doi.org/10.1037/pag0000863
Clare, L., Wu, Y.-T., Jones, I. R., Victor, C. R., Nelis, S. M., Martyr, A., Quinn, C., Litherland, R., Pickett, J. A., Hindle, J. V., Jones, R. W., Knapp, M., Kopelman, M. D., Morris, R. G., Rusted, J. M., Thom, J. M., Lamont, R. A., Henderson, C., Rippon, I., . . . Matthews, F. E. (2019). A comprehensive model of factors associated with subjective perceptions of “living well” with dementia: Findings from the IDEAL study. Alzheimer Disease & Associated Disorders, 33(1), 36–41. https://doi.org/10.1097/WAD.0000000000000286
Woods, B., Rai, H. K., Elliott, E., Aguirre, E., Orrell, M., & Spector, A. (2023). Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews, 2023(1), Article CD005562. https://doi.org/10.1002/14651858.CD005562.pub3
Joshua,
Please take a look at my last paragraph of comments on your first blog post. That’s where I tell you how to upload your featured image.
This is really well written and a very thoughtful discussion. Your selection of GRRs and discussion of the CARA model is right on the mark, and you have incorporated those ideas with gusto. I have shared this observation with several of you, and I think it is important to mention it as we move into our discussion of dementia. This disease isn’t like throwing a switch. There is typically a progression, and it takes longer than we think. Often, folks don’t pay much attention in the early stages, or they hold on to some form of denial. And the moderate stage is often filled with moments of humor, memories, and stories.
I am in no way minimizing the devastating effects of this disease, and I think it’s time we put all those brilliant techno people on to coming up with a cure. But it is also important to remember that we continue to live our lives with this diagnosis, particularly at the beginning, and the same things that are important to us now continue to be important. We don’t become the dementia; we are living with dementia. Because the end is so hard, I think we often forget the beginning and the middle. I have trouble remembering that when I think about my mother right before she passed. If I stop and remember some of the earlier times, I am reminded that living with dementia is something altogether different than dying with it.
I also encourage all of you who have dementia in your families to remember that you actually may not have dementia as you age. What is you DON’T get dementia?? The only way we have to experience and enjoy those present moments is if we stay in the present. As hard as that is, it’s our gift.
The podcast with Jim Fox on the Memory Loss Tapes is difficult for those of you who have dementia in your family history. I encourage people to take that podcast in small parts, with breaks, and skipping what you need to skip. I struggle with that balance about helping you understand the potential realities of aging without creating an attitude of fear for your own aging. Not an easy balance, I admit.
Nicely done.
Dr P