In recent experience I am discovering that there is much in a word. My first examples: caregiver and care partner. Both refer to someone who cares for another person, especially those loved ones with long-term needs. Often this is a spouse or adult child who is called upon because Grandpa or Mom can no longer function in total independence. I will link this to Alzheimer’s and dementia.
In early stages termed Mild Cognitive Impairment (MCI), a loved one forgets, but not to an extreme degree and this forgetfulness does not disturb ordinary life. Maybe a bill goes unpaid, a meeting is missed, or there are troubles retrieving the correct word. Usually, the person later recalls the error and can rectify it.
During the forgetfulness stage, people unite as care partners, working in tandem to decide important decisions as life rolls along under secure circumstances. This partnership may endure into early-stage dementia because there are enough lucid periods of time that safe choices can be made as a team and small indiscretions fixed.
Middle to late-stage dementia brings severe memory loss. While good moments exist, they decline as the disease progresses. An example, in early stage, Dad probably can drive to the store and back with no problem.
He is in familiar surroundings and knows the route. In mid to late stage, driving becomes problematic as stop signs are ignored, speed limits are mysterious, exiting the garage leaves loose boards, and parking produces hazards.
The partnership melts as Dad states “I’m fine” but the caregiver recognizes potential dangers such as children dashing out into the street or getting T-boned at an intersection. A new relationship develops. I mention these terms as they were under debate during Nevada Task Force for Alzheimer’s Disease (TFAD) sessions. I mentioned the discrepancy numerous times but a lone rural voice vanished with the State Plan went to print. I vow the crank up my volume for future meetings to share my outlook as well as my many caregivers.
Another interesting word mix: cultural competency and cultural humility. I realize the value of being aware and considerate of cultural differences. Perhaps I do not truly understand a decision based on cultural preferences, but it is not that I object to it but rather that it is something new to me, something I need to learn more about to increase my knowledge and awareness.
Wikipedia defines cultural competence as “a range of cognitive, affective, behavioral, and linguistic skills that lead to effective and appropriate communication with people of other cultures.” The Nevada State Plan advocates competency as well as training that emphasizes cultural humility.
Humility covers vast ground and includes, according to the National Institute of Health, “lifelong learning and self-reflection; mitigating power imbalances; and institutional accountability.” Attributes are “openness, self-awareness, egoless, supportive interactions, and self-reflection [for] mutual empowerment, partnership, optimal care, and lifelong learning.” Wow! Enormous expectations, some that I try to live by, some that I am working on, and then some that leave a gaping “How?” I better put on my learning cap and dig in as I ponder if these competencies are attainable. At the Alzheimer’s Association Summit one speaker used the cliché to “walk in someone else’s shoes” to embrace understanding. Later a different speaker refuted the possibility as it is impossible to ever truly appreciate another person’s struggles. I guess I could slip one shoe on, wear my own on the other foot and literally limp along seeking enlightenment.
A final term is early detection. If someone suspects there is a cancerous growth beneath fronds of hair, the doctor would be remiss (or worse) to avoid inspection and a possible biopsy. However, an individual worried about cognitive decline is likely to be brushed off with a worthless prescription that we know does not touch the biology of Alzheimer’s disease (AD) or most dementias or worse “Go home and stop fretting.” No, a biopsy of the brain is not current practice, but CT/MCI scans reveal structural changes and additional testing may indicate MCI. Because of physician reticence and personal fear, often diagnosis of AD comes far beyond the point-of-no-return. While there is no current preventative medicine, reversal, or cure, Aducanemab and Lecanemab, drugs that attack the biological underpinnings of AD, are out of rounds of clinical trials and show promise, but are crazy expensive. Without availability to all, how can researchers unearth a cure? Early detection to identify the intricacies of AD is essential.
