Article in NeurologyToday
‘Village of the Demented’ Draws Praise as New Care Model
Featured is a novel model of care for demented patients, in which they live in a “make-believe” village that accommodates their interests and values.
No, it’s not a new cable series on AMC. Rather, Hogewey is a gated community founded two decades ago in a suburb of Amsterdam that has lately drawn imitators, praise, and press coverage as the world’s first “dementia village,” a radical rethinking of how best to care for people in the advanced stages of Alzheimer disease and other neurodegenerative disorders.
Most importantly, it’s definitely not a nursing home. “It’s so different from a traditional nursing home, you can’t compare it,” Hogewey’s founding director, Jannette Spiering, told Neurology Today during an interview via Skype.
The village’s 152 residents live in a land of make-believe, in which small group homes are designed to look old-fashioned, caregivers dress casually, and residents are free to roam about to shop for groceries, fix a meal in a communal kitchen, have a beer at a bar, or walk the carefully tended grounds.
All this, at a publicly funded institution that has the same budget as other nursing homes in Holland, and the same population. In fact, with a long waiting list of families hoping to place their loved ones there, Hogewey accepts only those with severe dementia. Care is provided around the clock, with a staff-to-resident ratio of four caregivers to every patient. As at a traditional nursing home, physicians are always on standby.
“We don’t choose our patients for their mobility or their degree of dementia,” Spiering said. And, she noted, patients remain at Hogewey until they die. Although 70 percent of Hogewey’s residents are ambulatory, those who are bedridden are included in all the daily activities, she said. “If you can’t walk, and you have to lie in a special chair, you are still part of a household and are still able to smell and hear and see.”
Rather than grouping patients by medical criteria, each home of seven residents is designed to suit one of seven different lifestyles: urban, for those who lived in a city and like to walk about; domestic, for those who stay mostly indoors; cultural, for those who are interested in the arts and like to try new things; Christian, for those who deeply value church life; craft, for working-class people who prided themselves on their jobs; Indonesian, for those who most value their ethnic heritage; and one for upper-class people raised on proper manners.
Whereas the working-class residents have a friendly, casual relationship with caregivers, preparing meals together and perhaps eating while watching television, the upper-class residents sit more formally, with fine tablecloths and glassware, and meals are brought to them by caregivers who play the role of servants. Indonesians eat cuisine prepared in their native style, and have homes decorated with traditional art, including sculptures of Buddha. The “urban” homes, on the other hand, are decorated with a modern, uncluttered look.
“We try to make it as much like your old life as possible,” Spiering said. “How you lived as a younger person is much more important than how you function now. It must be familiar. We create a surrounding and a way of living that they recognize and feel comfortable with.”The choice of which lifestyle best suits the resident is made by filling out a digital form and consulting with the resident and family. Odd though the arrangement may sound, the goal is deeply serious: to create an environment in which people with dementia can still enjoy life with a minimum of medication and frustration.
The cost per resident is no greater than for standard nursing homes in Holland, Spiering said — about 150 per day, the equivalent of about $200 in the United States at current exchange rates. And although she offered no firm numbers, she added that the use of antipsychotic medications fell from about 50 percent of all patients before Hogewey initiated its village model 20 years ago, to about 20 percent today.
“People with dementia do often get anxious and restless,” Spiering said. “In typical nursing homes, this restlessness and anxiety is most often treated with medication, What they don’t do realize is how the setting itself can create anxiety. We build homes which look like normal homes, with a normal village-like surrounding, where you can meet your neighbors, where you go out shopping, where you cook your meals in your house, just like you used to do in your own house. We support people with dementia in doing this, because they can’t do this by themselves any more. We create a surrounding they recognize. Medication is lower, because people don’t feel trapped.”
CLINICIANS WEIGH IN
Clinicians here in the United States expressed praise and curiosity about the approach, while raising the predictable questions and caveats about exactly how such a model could be translated.
“I would say it sounds very positive, if it works,” said Rachelle S. Doody, MD, PhD, the Effie Marie Cain Chair in Alzheimer’s Disease Research at the Baylor College of Medicine department of neurology. “No matter whether you have dementia, you should still have dignity, you still have the need for social interaction, and you still will feel better if you’re not constrained. Any model of care that tries to do those things for a person is desirable. The only question is does it work? Those things we can’t judge by press releases.
”While acknowledging the lack of peer-reviewed studies of the Hogewey model, Spiering said that the village has hosted visits from numerous physicians’ groups, including one which has posted video of its tour online, and that it has lately begun to draw imitators. Another village for people with dementia is being planned in Wiedlisbach, Switzerland, and two more in Germany, she said.
“I’m intrigued by it,” said Christopher M. Callahan, MD, director of the Indiana University Center for Aging Research. “There has been a movement in the nursing home industry for a decade or two to make the facilities more home-like, but this is something new. I would love to see them take the next step and collect good data on how well it works for their patients.”Sandra Weintraub, PhD, a neuropsychologist at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University in Chicago, said she had seen nothing like Hogewey in the United States. But, she added, “there is more and more effort in residential care facilities to make them more like a home and less like an institution. Other options are increasingly available for individuals with dementia. Physicians, including neurologists, should be aware of all the resources to help people with dementia find some meaningful activity in their daily lives in and outside of nursing home placement.”
FOCUS ON ENVIRONMENT FOR CARE
A variety of studies published over the past ten years have documented clinical benefits in dementia patients placed in home-like settings with innovative layouts specially designed to encourage walking and engagement with daily activities.“Environment makes an especially big difference,” said Habib Chaudhury, PhD, who studies architectural design for people with dementia as an associate professor at Simon Fraser University in Vancouver. “We talk about the importance of having a safe wandering path. Reaching a dead-end, a blank wall or a locked door is very frustrating and confusing for them. They need options for going places, to sitting areas, activity corners, things that attract them to engage.”“I’m all for this,” he said. “I’m really excited about the second project being planned for Switzerland as well. These villages have the potential to simulate the daily life of people from when they were younger through various activities in the home and neighborhood. Villages can provide a much wider range of movement compared to a typical dementia care unit. It would be important to see if such a neighborhood environment has any beneficial effect in behavior, functional ability, and cognition.”
No ethical concerns regarding Hogewey’s make-believe approach were seen by Steven DeKosky, MD, professor of neurology and dean of the University of Virginia School of Medicine.“I think personally there is nothing wrong with a system which in some ways is not exactly reality,” he said in an e-mail. After all, he noted, “persons who have significant cognitive impairment do not perceive the same reality as others. So my view is that if the family can be comfortable with an environment like this, where it is truly patient-centered, then it will work well.”Despite the aspects of fantasy, Spiering said, there is nothing make-believe about her residents’ sense of freedom and calm.“Today was a lovely day, the first nice spring day with lots of sun,” she said when reached in late March. “You saw everybody coming outdoors, looking around, watching the tulips. Sometimes you can’t tell who is a caregiver, who is a client and who is a family member. When you put them in a normal environment, they look healthy