For four weeks past and two to come I have had the pleasure of being a part of a Dementia Self-Management discussion group. Camaraderie and interaction describe two of the characteristics of our meetings; friendship and support are two more.
Bumps, twists, and tangles, literally and figuratively, depict the Alzheimer’s and/or dementia road, however it is not a journey that needs to be traveled alone. I frequently receive texts or phone calls from those navigating cognitive decline in themselves or a loved one, and often our conversations are secretive. I understand this.
With inadequate treatment, cure, or reversal, challenges occur in even trying to assess the intricacies and uniqueness of these diseases. That’s where support groups and education programs become so important.
The “self-management” title underestimates the extensive reach of the many messages and advice offered. The additional insight of attendees expands the outreach and power of each page.
With six modules, we started with introduction and overview followed by types of dementia, planning health care and lifestyle, and making sense of a diagnosis and will complete our sessions with connecting with others and focusing on the possibilities. Parts of the information contained in our spiral-bound book matches perfectly with what our members are facing; in other areas disagreement and clarification demands arise. What better way to learn and increase knowledge than to interact with others? For example, Module 1…
While it leads the reader through dementia types, misconceptions, and diagnosis, we wondered, “Where is denial?” The initial reaction of someone who receives a dementia diagnosis frequently includes “Why me? This cannot be!” And rightfully so. Cognitive changes may surface from a variety of sources: infection, anesthesia, stress, or a bad prescription reaction. A physician recognizes some of the symptoms of dementia; a neurologist will note more. The correct diagnosis leads to correct procedures. Why should anyone demand less?
Module 3 encourages a healthy lifestyle to reduce risk including getting moving, eating smart, resting well, activating brain power, staying connected, and controlling potential risks like smoking and overeating.
The “Six Pillars of Brain Health” created by the Lou Ruvo Center for Brain Health with the Cleveland Clinic outlines these and reminds us that when we utilize this plan, we help take care of our brains. The module ends with “Defusing Stress”. Yep, we are right back with facing the fact that our lives are filled with stress and worry. I am an expert at providing suggestions for eliminating stressful elements in life, however, adhering to my own best intentions challenges me. Stress abounds.
To address the value and interpretation of words, we tackle the terms “support partners” (preferred term in the book, “care partner” (favored term of Dementia Friendly Nevada, and “caregiver” (approved term of local support group members. Into the mix we tossed caretaker. This last word required time to digest as it seems too close to undertaker, but we came to agreement on the differentiation for those who care for and support loved ones in need. We then designed a visual wheel starting with support partners. Far-reaching, this includes family, friends, healthcare professionals, bankers, and others who play roles in an individual’s life. Stating that someone with a dementia diagnosis should be open with everyone, I concur with reservations. Being private, I would not announce this to the world, but I would convey the situation to a “support team” (see what I mean by interpretation?).
Once the support partners are established, we move to care partner or caregiver. Years ago, my support group explained to me that in the early stages of Alzheimer’s, they were partners as they organized desires for the future, but when the disease ravages cognitive abilities, the partnership dissolved and the caregiver stepped in as decision-making assumes another dimension. Incapable of certain choices, a loved one, the caregiver, adopts the responsibility. Finally, the caretaker debate. This, we defined as professional, long-term care providers. Not to suggest that these people are not loving and kind, but we accepted that devotion and the heart are fragile and need a degree of separation. When we determine the best graphic, we’ll trademark it to share.
Module 4 examined uncertainty, loss, change, and setbacks. Heavy topics, I think you can see how group trust becomes essential to honest communication. At this point we nitpicked book format and proffered counsel. Evaluating each paragraph empowered our personal opinions and feedback. Amazing emotions filled the room. With two modules to cover, I can only imagine our findings.