Alzheimer’s is a frightening word. It’s a real word attached to real people. The numbers of people so affected by the disease, patient and caregiver alike, are staggering. It’s a significant issue with far reaching costs not only to those affected but to the society at large.
Even the newest medications are insufficient to make much of an impact on the inevitable when it comes to dementia. Leqembi and Donanemab are designed to eliminate specific configurations in the brain, known as plaques and tangles. But speak to any researcher and they will tell you that no one is sure that these neurological anomalies are the cause of the disease. They correlate, but that only means that they are found in the brains of those so diagnosed. They are also in the brains of those without the malady. The new drugs, monoclonal antibodies, are proteins that target specific sites on a cell and are said to slow down the progression of the disease in about a third of that population. They are not cures, but they are something.
Treatment beyond these medications is a rag bag of personal attention and the holy trinity of recommendations relating to nutrition, exercise and social interaction – basically the same advice you receive for most illnesses.
Enabling the Alzheimer’s patient to live with dignity and comfort falls to the caregivers, most often family members who, facing a steep learning curve, have to navigate the moment-to-moment changes in cognition that are evidenced by the patient. In effect, Alzheimer’s affects both the patient and the caregiver. The everyday world is not set up to accommodate the needs of the Alzheimer’s patient. The world goes on without them as cognitive connections are lost. But there are organizations…
Motorcycle riders have a community as do bird watchers and people who think the moon is made of cheese. Alzheimer’s patients and their caregivers have associated support groups, usually connected with the Alzheimer’s association or a medical facility. These are problem solving, resource finding groups that build a resource base for the care of the patient and the caregivers. By their very nature, they provide important social connections as well as support for both the patient and the caregiver.
Come along with me and see what else – that is both caring and life affirming – is available.
Let’s go to the Memory Café. No special attire required. Come as you are. Truly.
Based on an international template invented in the Netherlands, there are over a thousand cafes in the United States. Locally, Pebble Hill Presbyterian Church in Dewitt adopted the concept and implementation of a Memory Café as its outreach program. The “café” meets on the second Wednesday of the month in the church hall. A dedicated group of parishioners plans and executes a warm, welcoming social program that invites the dementia patient and caregiver to have an hour and a half of relaxation and fun.
Quoting from their brochure, “As one caregiver put it … ‘this is the only place we can come where I too can relax because I know everyone is in the same situation.’ We often hear that people who couldn’t imagine they would like such an event are surprised at how much fun they have. Once they join us, they keep coming back.”
Each month’s café presents the guests with a homemade light lunch, snacks, beverages, humorous stories, birthday and anniversary wishes, a sing along and entertainment. Two months ago, the guests were entertained by an hysterically funny skilled magician (and I hate magicians) who once was the opening act at Three Rivers Inn for some of the most famous entertainers of our times. This month we enjoyed the talents of a brass quartet of trombones that rocked the room with contemporary nostalgia.
Let me take you to our table last Wednesday. The luncheon tables, decorated appropriately for the season, encouraged conversations among the guests. These conversations flow! We talked of our former occupations, people whom with whom we’ve worked, our families, doctors, summers in and around Syracuse, restaurants that are no longer here and downtown Syracuse in the 1950s and 60s. There were no shy guests when it came to the sing along. The entire room stood and applauded the brass quartet. They were fabulous.
The Memory Café is a catalytic setting that enables you to feel the normal that you are, whatever, wherever that may be.
The success of Memory Café has inspired the Onondaga Public Library to offer its own version Memory Cafés at the Hazard and the Betts Branch libraries. We attended the Hazard Branch this morning and learned about the history of McCarthur stadium. The guests were eager to share their baseball stories from being promised a day off at school if the Dodgers won the series to meeting some of the Toronto Blue Jays at McArthur. We will attend the Betts branch Memory Café next week, looking forward to the special therapy that these gatherings provide. The library is eager to provide experiences that copy the success of the Dewitt site.
The “treatment” for the Alzheimer’s patient, or any patient diagnosed with dementia, focuses on support for the strengths that remain. Social interaction, the feeling of belonging, for either patient or caregiver, is just what the doctor ordered. It is reaching across the barriers of loss to the places of the self, elevating the importance of an essential humanity which always remains, no matter the loss.
Alzheimer’s is a complicated disease involving a combination of genetic, lifestyle and environmental factors that affect the brain over time. Bravo to the giant pharmaceutical companies that are investigating the causes of Alzheimer’s and working on diagnostic tests, producing medications that can slow down the decline or finding a cure. But in the here and now it is the actions of a few who see the value of the person as they are, as they are becoming, to offer these islands of time and fun that recall the words of Margaret Mead, “Never underestimate the power of a small, dedicated group of people to change the world; indeed, that is the only thing that ever has.”’
Contact information : Pebble Hill Presbyterian, Tim Frazee, 315-446-0961. syracusememorycafe.com. OCPL: 315-435-1900, OCPL MemoryCafe@Hazard, OCPL MemoryCafe@Betts,
