This December, Gianna Homes, a single-family house serving as a memory-care facility, petitioned Minnetonka’s city council to expand its capacity from 10 patients to 11. The proposal sounded innocuous, but neighbors complained that the place was already producing too much traffic and jamming the streets with parked cars. What’s more, they didn’t like seeing Alzheimer’s patients strolling in the street with their caretakers. Minnetonka turned Gianna down.
Was it the parking that bothered neighbors so much or their discomfort with Alzheimer’s disease?
Having a less than welcoming attitude toward Alzheimer’s or any other form of dementia is understandable. The disease, which takes a patient from mild cluelessness to an inability to remember much of anything, is one of the most vicious around — and futile, since it ends not in remission or cure but death. The very thought of it engenders dread and distaste.
But we’d better put on our big-boy and big-girl pants and get over all that. Dementia may lie in the future (or even the present) for many of us. At age 65 one person in eight has Alzheimer’s, usually undiagnosed. By age 72, one in three experiences cognitive decline. At age 85, up to half of all persons will have some form of dementia. And increasingly scientists are seeing Alzheimer’s as developing along a continuum that starts much earlier than previously suspected. One study based on data from the Rochester (Minn.) Epidemiology Project shows that from 1990 to 1994, 4.6 percent of the 560 new cases of dementia occurred in age 40-64.
The U.S. government is taking a medical-biological approach to the disease. Its “vision” is to prevent and effectively treat Alzheimer’s by 2025.
“Scientists are looking for pre-symptomatic biological markers” that lead to the disease, says Susan H. McFadden, professor emerita of psychology at the University of Wisconsin at Oshkosh who has worked extensively with dementia patients. The result, we can hope, is a vaccine that protects future generations. But, she asks, “What about all the people who have symptoms now?”
Problems of daily life
For them the problems are manifold. Beyond the horrors of getting a diagnosis and finding themselves dependent on a spouse or adult child, people who have trouble thinking properly face endless problems in daily living, even in the earlier stages of the disease. Surveys of patients and caregivers in various communities have highlighted the issues: difficulty remembering PIN numbers in banks; large, impersonal supermarkets that are hard to navigate; worry about taking a long time in a check-out line and inconveniencing other people; problems writing checks; figuring out complicated time tables for public transportation; encountering unhelpful sales staff; inability to socialize with other people; and the disease’s stigma which sometimes sends people running in the opposite direction.
Bruges, Belgium, (population 117,000) has come up with a partial answer: remaking itself as a dementia-friendly city. Throughout the town, shop owners have installed signs displaying a knotted-handkerchief to show that they are places where people with dementia can get extra help. Special counselors provide practical advice for those who are suffering from the disease and therapy for their caregivers. Additionally, police have developed a database of vulnerable citizens, their home and work addresses and other information that could expedite a search when someone goes missing.
David Cameron, the British prime minister in 2012, announced an all-out attack on dementia, which currently affects 800,000 of his countrymen. The Brits will, like the United States, invest money in research, but their major focus is to improve the quality of life for those who already have dementia. Cameron ticked off three goals: removing the stigma; making sure people are properly diagnosed; and developing a range of services that meets the changing needs of those who are diagnosed. As part of the overall strategy Cameron issued a Prime Minister’s Challenge on Dementia, for 20 cities, towns and villages to become more dementia-friendly by 2015.
York (population 181,000), a tourist town in the northeast of England, for example, has been working on, among other things, creating better signage, designing leisure services such as health walks and guided bicycle tours for people with dementia and adapting various games (like croquet) for people who have trouble thinking. The plan is that once the community becomes more navigable by people with Alzheimer’s, more of them will be able to stay in their homes for longer periods of time. That in turn reduces the necessity and length of nursing home stays.
The United States is woefully behind in thinking about how better to accommodate people with dementia. The Twin Cities, a historically progressive place, I thought, should get on this bandwagon. As it turns out, a statewide campaign has already begun; in fact, we can congratulate ourselves that, thanks to the Alzheimer’s Working Group, created by the state Legislature in 2009, we are perhaps the only place in the nation that’s making such an effort.
Called ACT on Alzheimer’s, the group, which is composed of 50 community groups and 150 individuals, has set as one of its many goals the creation of what it is calling “dementia-capable communities.” “We want to equip them to support Alzheimer’s patients,” says Olivia Mastry, the group’s executive director.
The effort is as yet in its infancy. There are pilot programs in six St. Paul neighborhoods, Walker and Wilmar, Minn., and St. Louis Park. Additionally, the Twin Cities Jewish community has set up its own task force, one of whose initial aims, according to Annette Sandler, director of aging and disability services for the Jewish Family and Children’s Service, is to help rabbis recognize symptoms of the disease and refer families for help in getting a diagnosis.
ACT has already developed a community toolkit that can be downloaded from the website. It guides town groups in assessing problems that residents with memory problems face and then helps them to develop solutions. Depending on what the issues are, they may try to ramp up training of sales people in local businesses to recognize and trouble-shoot for customers with dementia or to educate police and other first-responders to notice and deal with cognitive disabilities. Sandler, who also oversees the St. Louis Park group, says that one of its goals is to raise awareness of dementia and somehow diminish its stigma.
That’s a tall order, particularly in a society where most people are, via computers and smart phones, trying to perform every task more quickly and decisively than ever before. Accommodating people with Alzheimer’s disease means slowing down and letting compassion rather than efficiency guide our actions.