Amazing things happen when people with dementia have the freedom to do things they enjoy, in familiar environments, surrounded by people who watch out for them and help them feel accepted.
In the Netherlands, a dementia village has become an international model of what can happen when people with dementia are given extraordinary freedom in a safe, structured environment. Meanwhile, in England and now in the US, many communities are exploring ways to become dementia-friendly so that people at earlier stages of memory-robbing conditions can remain actively involved in social and cultural activities.
Contrast that to what typically happens: We care for loved ones at home for as long as possible, and then the alternative is often an assisted-living facility or a nursing home. But when loved ones get there, they are often isolated, lonely, scared and oversedated—all of which accelerates their cognitive and physical decline. “Assisted-living facilities are now what nursing homes used to be, and nursing homes are really hospitals,” says certified Alzheimer educator Dayne DuVall, chief operating officer of the National Certification Board for Alzheimer Care.
There are better ways. Here are some of them that you can take advantage of or adapt to your loved one’s particular needs…
A NEW MODEL: A VILLAGE BUILT FOR PEOPLE WITH DEMENTIA
Imagine an environment where someone with dementia can leave his house and take a walk whenever he wants, shop, take in a movie and eat with neighbors in a family-style dining room. The town looks like the kind of place he may have once lived in.
That’s the experience in Hogewey in the Netherlands, a residential facility outside Amsterdam where elderly people with dementia live in a seemingly normal community, complete with parks, a grocery store, a restaurant, a theatre, post office, barbershop and other amenities. The residents are generally people with “moderate-stage” dementia.
Although they are restricted to the facility’s grounds, the 152 residents are free to roam around the community, which has on-site geriatric nurses and caregivers dressed in street clothes who provide around-the-clock care. The residents live in groups of six to eight to a home, with one or two caretakers on site. Residents also manage their own homes, including cooking, cleaning and laundry—with some help. For safety’s sake, cameras monitor the residents 24/7, and there’s only one door in and out of “town,” so there’s little risk that residents will wander off the premises.
To some, it’s a little disquieting to have a community where residents are essentially deceived into believing that they are living in a normal community—a real-life version of The Truman Show, as it were. But the benefits are that residents can maintain social engagement and much more independence. “There has to be some oversight—somebody has to be monitoring what’s going on,” says DuVall. “To me, the simulation connotes safety.”
The benefits are many. Research shows that putting people with dementia into environments that mimic their familiar, formative experiences helps them cope better. So Hogeway mimics traditional towns from 50 or so years ago. There are even living clusters for different lifestyles such as urban, homemaker, trade/craft, upper class…and Indonesian.
According to CNN’s chief medical correspondent Sanjay Gupta, MD, whose reporting helped create international interest in the Hogewey model, the residents take fewer medications and eat better than others of the same age and condition—and live longer, too. “On a mental level, they also seem to have more joy,” he reported. “It’s a difficult thing to measure, but that is the most important thing here at Hogewey.”
WHAT WE CAN LEARN FROM HOGEWAY
The Hogewey model has inspired international interest. There are dementia villages being planned in Switzerland, England and Canada—and in Florida, where the Miami Jewish Health Systems is actively planning a Hogeway-like expansion of their dementia care facilities called EmpathiCare.
There are obstacles to widespread adoption of the model here, however. The primary one is cost. It’s very expensive. In the Netherlands, Hogewey is heavily subsidized by the government, which covered almost all of the nearly $25 million dollars it cost to build and subsidizes operating expenses, too. Even then, the families of residents need to pay as much as $3,600 a month. In the US, a dementia village on that scale may be affordable only for the rich.
But sometimes, great ideas create change in surprising ways. The example of a more humane way to treat people with dementia, one that gives them more freedom and dignity than was thought possible, is inspiring. And it’s just one example…many communities in the US are striving to find better ways to provide care. There may be elements of the Hogewey model—environments that mimic an earlier time, professionally-staffed movie theaters that look like the real thing—that assisted-living facilities may adopt.
We can also change our communities so that it is easier for people with dementia to stay in their own homes longer, while remaining socially active. All over the US, people with early-stage dementia, who are largely still aware and functioning, are establishing “memory cafes” where they can come together to socialize and share resources. Entire states are trying to figure out how they can be “dementia-friendly”—safer and more accepting of residents with memory impairments.
Whether we build entirely new communities, or work to make our existing communities embrace people with dementia, the concept is the same—people with memory-robbing diseases who can stay social, engaged in meaningful activities and treated with respect, live better lives until the very end.