Alzheimer’s Disease: Physical, Emotional, Financial, and Social Impacts

As I discussed in my last post, developing Alzheimer’s like both of my great-grandmothers is my largest fear as I age. From my first-hand experience with this condition, it was a totally debilitating disease. Physically, I know that those who suffer from this condition are progressively unable to care for themselves. An article describing the clinical presentation of Alzheimer’s disease describes that: “in the early stage of AD a person may live autonomously, may still work and be active in society… [while late stage] patients commonly need extensive help with their daily activities and personal care… [as individuals lose] their ability to manage their environment and movement” (Zverova, 2019). Furthermore, complications often arise in the final stage of the illness, including “immobility, deep venous thrombosis, malnutrition, [and] risk of meal aspiration and infections” (Zverova). These complications are not new to me, as both of my relatives with Alzheimer’s suffered continual infections and total immobility. It is not hard to imagine, then, that I too would endure some of these problems if I lived long enough with the illness. Furthermore, the knowledge of the progressiveness of this disease and the symptoms that can spawn in later stages would likely cause me to suffer with anxiety and depression if I were to be diagnosed. In fact, the depression among affected individuals is well documented. In the Effects of Alzheimer Disease on Patients and their Family, it is noted that “the most common reasons [affected] patients give for increased stress are fears about forgetting their loved ones, becoming a burden to their family, losing their independence…. [and] whether they will have enough money to pay for their care” (Grabher, 2018, p. 338). This anxiety about finances is a genuine concern as, in 2018, “AD and other dementias…cost the nation $277 billion…. [and] family members spend more than $10,000 a year caring for someone with AD” (Grabher, p. 335).  Thus, if I were not fortunate enough to be wealthy or well insured, I can imagine that this condition would cause significant financial strain on myself or my family who took care of me. Furthermore, dementia from Alzheimer’s would also affect me socially as well as it has been documented that, among those with the condition, “behavior and social skills may also deteriorate, precipitating interpersonal conflict that causes the individual with AD to become socially isolated or avoided” (Logsdon et al., 1999, p. 21). In the case of my relatives, their brief moments of lucidity brought about frustration as they tried to make sense of what was happening to them. I can imagine that I would deal with a similar situation as my condition became more apparent.

Impacts on my Ideal Life as an Older Person

All these changes I discussed differ greatly from the ideal life I imagine when I picture myself as an older adult. My ‘vision’ of a perfect aging experience is  one of calmness. I’d love to be able to enjoy my retirement, such as by traveling, spending time with my loved ones, and living comfortably without financial stress. Dementia, with all its great effects on mind, body, and finances as it progresses, would greatly interfere with my ability to enjoy the parts of life I’m looking forward to the most. It would be difficult to spend time with my grandchildren or my husband if I struggled to remember them, and I certainly wouldn’t be able to live as independently as I would like, such as traveling and enjoying going on long hikes, like I do now. I wouldn’t be able to leave the house alone, and my family would likely need to hire help to take care of me as other health comorbidities presented themselves. If I did not have the means, or the insurance, to cover these costs, it could seriously impact my family’s financial situation. Instead of taking care of those I love, they would need to take care of my own needs. This ‘peaceful’, ideal vision I have of my older years would likely be replaced with confusion, agitation, and stress as I faced the difficulties of Alzheimer’s disease.

Initial Thoughts

I had many revelations while researching about the process of Alzheimer’s in the making of this post and in further reflecting on what these changes might look like in my own life. Understanding the great weight that it has not only physically but mentally, emotionally, and financially has made me feel even more empathetic to those affected by the condition aside from my own personal experience. It is truly a disease which I feel like is not talked about as much as it ought to be, and needs to be further researched so as to prevent some of these side effects that can be so difficult both for patients and caregivers alike. In my own case, it  is hard for me to picture experiencing these difficulties at the stage I am now in my own life. In many ways, I think envisioning myself that way is so difficult because it is so different from the me I am today. Yet, I know that I am genetically at risk for developing the condition. It is hard not to feel frightened at that prospect. Imagining forgetting the ones I love, myself, and the ones I love makes me uncomfortable. I feel a certain dread in that I could become a burden to the ones around me, and that I could lose all the independence I now freely enjoy without much thought. It makes me feel grateful for the life I have now, and more apt to enjoy the little things I take for granted.

Resilience Using the CARA Model of Aging

The Cara Model of Aging, as discussed in our course material, defines resilience as the “ability to recognize, utilize, and develop or modify resources at the individual, community, and sociocultural levels in the service of three goal related process… functional health, life satisfaction, and purpose in life” (Aldwin & Igarashi, n.d., p. 12, 14). One of the most important ways I believe I could form “generalized resistance resources”, or GRRS, as the book discusses, to be able to cope with the process of developing Alzheimer’s is to ensure that I have a strong community of individuals around me who will support me and strong sociocultural resources, such as access to public programs, to assist with the financial and physical difficulties I may experience (Aldwin & Igarashi, p. 15). As we discussed, because of the degenerative and progressive effects of Alzheimer’s, I will have to ensure that I have a proper support system that will be able to take care of my needs. Because care for those with  Alzheimer’s can be extremely costly, I should also ensure that I have access to a myriad of resources, such as insurance, social security, Medicaid, and other public programs to ease the financial stress of the situation. With these major stressors alleviated, it would also be important, particularly in the early ages of diagnosis, for me to work on bolstering my individual resources such as “coping skills, self-support [and] spirituality” to be better able to face the challenges associated with Alzheimer’s related dementia (Aldwin & Igarashi, p. 15). With a strong community and sociocultural resource pool, however, I feel that I could move past my individual fears and become less frightened by the challenges ahead.

References

Aldwin, C., Igarashi, H. (n.d.) Coping, optimal aging, and resilience in a sociocultural context. In SW 4470: Aging Practice. Fall 2026. [Class Handout]. https://gastate.view.usg.edu/d2l/le/lessons/3694485/topics/77644130

Grabher B. J. (2018). Effects of Alzheimer’s disease on patients and their family. Journal of Nuclear Medicine Technology, 46(4), 335–340. https://doi.org/10.2967/jnmt.118.218057

Logsdon, R., Gibbons, L., McCurry, M., Teri, L. (1999). Quality of life in Alzheimer’s disease: patient and caregiver reports. Journal of Mental Health and Aging, 5(1), 21-32. https://www.academia.edu/download/42235075/Quality_of_Life_in_Alzheimers_Disease_Pa20160206-14055-zai373.pdf

Winkler, M. (2024, January 11). Scattered wooden letter tiles on a rustic wood surface highlighting the word ‘mind’. Pexels. [Image] https://www.pexels.com/photo/scrabble-letters-spelling-the-word-mind-on-a-wooden-table-19825313/

Zverova, M. (2019). Clinical aspects of Alzheimer’s disease. Clinical Biochemistry, 72, 3–6. https://doi.org/10.1016/j.clinbiochem.2019.04.015