The word “Alzheimer’s” hasn’t lost any of its dread, despite the fact that information about early warning signs, dedicated caregivers, and the triumphs of medical research assure us that with time, money and determination, someday the mystery will be solved and Alzheimer’s will no longer be “the disease without a cure.”
Dr. Dan de la Pena, executive director of the Research Center for Clinical Studies in Norwalk, was a major force in Alzheimer’s research long before it became an epidemic. He has been involved with each acquisition of knowledge: “What causes Alzheimer’s?” “How does it progress?” “Can anything stop it?” He explains, “We are now closer than ever to understanding how Alzheimer’s can probably be eradicated. When signs of memory loss occur, it can be the very beginning of Alzheimer’s or it can be mild cognitive impairment. The difference is indicated by the presence of amyloid, proteins that progressively destroy brain cells. We now have a tool that can detect amyloid.”
The premise is that if amyloid can be eliminated, its damage to the brain will be eliminated. “We now have a form of immunization designed to infuse antibodies that can destroy amyloid, and with it, a source of Alzheimer’s,” de la Pena says. “The antibodies can do no harm and the good they can do is momentous. Of course, the proof will come through more clinical trials, and that takes people wanting to be part of this crucial research.”
Meanwhile, what help is available?
The Connecticut chapter of the Alzheimer’s Association has a 24/7 helpline (800-272-3900) that covers questions that are the most frequently asked. Calling the helpline can provide an immediate sense of relief. There is basic information, including lists of diagnostic centers, memory evaluation resources, appropriate physicians, and more.
“Memory Loss” and “Memory Care” are two big titles, but there are many different levels of loss that require various types of care. That’s why it’s advisable to contact experienced professionals. One of the key themes that applies to the whole range of different levels of memory loss, from serious forgetfulness to oblivion, is what is generally called “person-centered care.” Despite frustration, irritation and even despair, the tone and the ambiance of caregiving must be compassionate, gentle and kind. If a patient says she is waiting to see her mother, husband, or baby, and that is impossible, the response shouldn’t be logical or corrective. “Your mother is dead” isn’t going to accomplish much: Here is a person whose mind is telling her that she is waiting for her mother. Arguing about it is simply a waste of time. This should be a basic part of caregiver training.
Maplewood Senior Living, with six Connecticut locations, including Norwalk, Newtown, Bethel, Darien, Danbury, and Orange, utilizes technology to help residents communicate. There are Skype rooms (Bethel) and touch screen computers (all locations) to connect residents to family members. No previous computer knowledge is needed. With the touch of a screen, residents can email friends, relatives, grandchildren in college. Residents have access to equipment that requires only the press of a button to see, hear and speak to family. Gina Saunders, corporate director of memory care and engagement, explains, “Even if a person has memory loss and/or other aspects of mental or physical limitations, he or she can still fulfill a long-delayed dream to learn a new language, pick up a new hobby, and enjoy daily life.”
Consistent with Jewish values and traditions, Jewish Senior Services of Fairfield’s mission, according to its website, is to assure seniors the health care, housing and geriatric services required to achieve the highest possible quality of life reasonably attainable for them. Admission to these services will be available to Jewish seniors on a priority basis, but all are welcome, regardless of religion. It is dedicated to offering comprehensive geriatric assessment and referral, social service coordination, and caregiver support. The company’s priority is enhancing the quality of life for those living with memory disorders and their caregivers through coordinated medical, psychological and social interventions that lead to an all-inclusive plan of care.
The Evergreen Program at The Greens at Cannondale in Wilton is designed to make daily activities fun for its memory-impaired residents. Aides are trained to “think like the people they care for,” and residents are engaged in activities tailored to their personal ability level. “The variety is designed to maximize participation, all day,” explains Sue Herbst, Evergreen program coordinator. Computer programs, music, bus trips, visits from therapy dogs, and golf cart rides are some of the activities. Most important, aides are specially selected men and women with recreational skills and compassionate personalities who have chosen their jobs out of love and respect for the people they serve.
The importance of environment for Alzheimer’s patients is tremendous. Waveny LifeCare Network in New Canaan, for example, counts its distinctive construction of Main Street in the Village as an integral part of memory restoration. “It’s designed to stimulate residents to re-live and remember the houses, shops, the beauty salon, the cafe, creating an experience of familiarity, security and belonging,” says Lori Civitella, director of residential care for Waveny.
Memory rehabilitation and deep caring are the main ingredients that ultimately produce confidence and sociability. The same factors are needed when people are cared for at home, but the sociability factor is harder to achieve. The GAP (Giving Alzheimer’s Purpose) group of the Connecticut chapter of the Alzheimer’s Association brings together caregivers and those for whom they care (usually husbands or wives). The group meets in Norwalk every other week for lunch, games, quizzes, hands-on craft projects, and conversation. It’s a respite for caregivers, a gathering of friends, and where difficulties are openly shared, eased, and minimized. For more information, call 800-272-3900.