Some new research indicates that Medicare will soon offer payment for early-stage Alzheimer’s drugs such as Lecanemab. Attacking the biology rather than symptoms, this offers a chance to slow the progression of the disease providing more time for living and planning. Some ask, “What good would an Alzheimer’s diagnosis do when there is no prevention, reversal, or cure?” I understand their perplexity, but I also know that each step in experimental treatments draws us closer to a cure.
The VA has approved payment and hopefully other medical support will follow. In my situation, I believe I would want an honest diagnosis, as painful and frightening as that might be, realizing that from this I can learn as can my family and friends and perhaps it will change the life course for many in the future.
Early detection means longitudinal studies of Alzheimer’s as it changes over time. For my mom, within three years she advanced from independent living to moving closer to my sister so that she could be in her home, to a group home, and finally to fulltime in-home care. We did not see these distinct steps ahead to their arrival, but in hindsight we became better prepared to assist my sister when she developed younger onset Alzheimer’s. We visualized a picture of the road forward, although hazy and incomplete, and could organize for future needs. Because of this, Carole stayed at home alone while my brother-in-law worked then transitioned to his in-home care to eventually full-time live-in support. Safe and in familiar surroundings with secure and excellent care, she thrived until her final months.
Living in San Jose, Carole also had access to adult day care, “The Club”, where trained staff guided her through the confusing advancement of the disease. From games and exercise to crafts and dancing and finally to handing her small bites and sips as she completed her circuitous route around the meeting room to maintain her strength, Hearts and Memory Activity Center gave her life. Since Carole left, the Center has added a garden and child care – How lovely! How vital to happy living!
For both Mama and Carole, the homestay brought safety and familiarity plus saved thousands of dollars. On a recent Alzheimer’s Support Group Facilitator Zoom call I learned that from diagnosis to the end-of-life with Alzheimer’s and other dementia averages $300,000. Incredible as this sounds, I have seen the bills – doctors’ visits, travel to specialists, paid in-home care, and long-term residential care are expensive. Staying at home with healthy living support greatly relieves the pocketbook.
In Winnemucca our respite program offers a 3.5 hour reprieve for caregivers. Those dedicated individuals have a chance to shop, clean, mow the grass, or relax while loved ones engage in a nutritious lunch, games, crafts, and music. Although this represents a tiny fraction of a 24/7 day, it works. Much of the success is because of the generosity of our community through the Turkey Trot and various donations. The Sprint Triathlon June 3rd, is one event – and I promise anyone can succeed in the swimming, biking, and running event. Proceeds go straight back to local respite and education.
If this sounds too physical for your tastes, good news! The Alzheimer’s Association along with Alzheimer’s Awareness have a terrific Longest Day Golf Scramble scheduled June 25th. Our first experience with staging this, the Age- and Dementia-Friendly Winnemucca Team welcomes all comers. The goody bags are awesome, raffle and silent auction prizes roll in, gifts await participants and winners. You can join the fun by heading to the golf course (the easiest), the ADF-Winnemucca website (adf-winnemucca.com) or Alzheimer’s Association website (alz.org) where you click on the Longest Day then Winnemucca and voila! The latter also has more prizes designed just for you and to advertise this wonderful occasion. Some groan, “I don’t golf” which resides out-of-bounds, in the rough. In a Scramble, the best ball counts and every team member is bound to triumph at least once.
Leaving you to plan for the future, in November, I believe, the Campos Family Vineyards (in Byron CA, near Stockton) has slated a tentative Fun Run. Not only will you dash through beautiful countryside, wine awaits at the end. One of the vineyard’s specialties includes “Forget Me Not” to honor Sylvia who has dementia. Proceeds fund Alzheimer’s research. I’m just saying – wow! What a way to make a positive difference in the lives of others.