I expressed fears around aging and dementia in my last post, regarding policies that could impact access to care and the effectiveness of prevention protocols, given the uncertainty of other diseases or injuries.  One of the biggest concerns I expressed was my thin social safety net with no extended family.  This already feels like a tenuous and vulnerable position from which to navigate physical limitations or injuries and adding cognitive decline to the mix increases my anxiety about the future.  My future concerns are not different from my initial post, as everything still feels uncertain and tenuous.  However, having more information via the CARA model has given the future more of a roadmap to navigate, as opposed to the haze of fear, so that is comforting and builds my resilience.

In terms of finances, we are not where we want to be.  We adopted our niece at 3 years old. She had a lot of trauma, and supporting and advocating for her was my full-time job, even though I had an actual full-time job.  With this focus, my husband has always been the main “bread winner.”  We have savings but a lot of our income over the years went to getting services and support for stabilizing our daughter. We also have a son. We are older and most likely will be okay, but again, nothing is certain.  What if one of us gets sick and cannot work until the age we were planning to or worse, dies?  What if an illness eats up the savings we have?  What if someone who I needed as support died? What if policy cuts undermine available resources?  What happens in these scenarios, especially if one is dealing with cognitive decline?

With cognitive decline and dementia, it would be difficult to maintain autonomy and the resilience I have had up to this point, based on current physical, emotional, and spiritual capacities.  It would be difficult to navigate daily life, forgetting things, feeling overwhelmed, and possibly frightened.  It would be hard to maintain the network of friends and community that I have relied on in the absence of extended family.  Reciprocal relationships are important to me, and I would not want to be a burden to anyone or not be able to be there for someone else.  Furthermore, at my age, people could start to relocate for retirement (if feasible), health, finances, or to be closer to children, creating community instabilities and support gaps. Increasingly, they will need their own families more as they face their own health issues.  I worry about future care and living options, especially if I do not have my full mental capacity that I have relied on for my entire life.  What if I lose the ability to advocate for myself?  That is scary to me.

For me, resilience would come from engaging GRRs on micro, mezzo, and macro levels to optimize my older life.  It would look like proactive engagement in keeping my community strong by using community services such as senior center activities, researching what services are available, proactively engaging a doctor and a gerontological social worker to make sure I have dementia support lined up, researching affordable and care-appropriate living options, joining social groups, learning and experiencing new things, taking educational and adaptive exercise classes, following preventative health protocols for cognitive decline, and staying engaged in meaningful service in ways that are accessible to me.  As much as I can, I would stay politically active and advocate for policies that positively impact aging adults and caregivers in terms of service and support.  I would seek generative activities, staying engaged with younger people, giving of my time and knowledge.  I would also maintain my spiritual and meditation practices to ground me during physical and emotional changes and seek therapy as needed to maintain a good attitude for “harmonious aging.”  If I were losing my memories, as much I could, I would try to tell people how much they mean to me, give them things that I cherish, tell my stories, write things down, and stay as present as I can.

My chosen article explored the impact of a diagnosis of early-stage dementia, in terms of self-concept, identity, and social roles, and the impact of community opinions of dementia on their sense of self.  It was a small, qualitative study of individuals ages 66-87.  Participants did not like the terms Dementia or Alzheimer’s because of the negative associations and stigma surrounding each.  They preferred to use memory loss or forgetfulness, and many sought to normalize their condition, comparing themselves to others their age in terms of their memory loss. Those with early diagnosis kept it within a small circle of family, professionals, and caregivers, because they feared gossip, being perceived as “crazy,” people acting differently, and being left out of things.

Many struggled between wanting help and wanting to be treated “normally.”  They wanted authenticity and honesty in their conversations and were aware when people excluded them or held things back, further impacting their identity and self-worth.  Above all, people wanted to preserve their dignity and feel like they were still contributing to life and participated in the study for this reason.  Stigma around the disease is isolating and more public education is needed to change the negative perceptions that impact identity.  Therapy is helpful with diagnosis acceptance and adjustment to changing conditions and social roles.

I found this article helpful because it spoke to the fears of losing oneself and one’s identity, especially when first diagnosed.  It was valuable to read people’s experiences of stigma and feeling left out, especially when they previously held social positions where people sought their counsel or saw them as an expert.  It underscored the importance of dignity and autonomy and using therapy to cope with the stresses of these changes.

References

Langdon, S. A., Eagle, A., & Warner, J. (2007). Making Sense of Dementia in the Social World: a  Qualitative Study. Social Science & Medicine (1982), 64(4), 989–1000.