If there was ever an industry in need of disruption it’s the highly regulated, risk-averse world of care facilities for the elderly. That’s one reason De Hogeweyk comes as such a revelation.
Situated in the town of Weesp, about 20 kilometers from Amsterdam, De Hogeweyk is a fresh take on nursing home design and concept. It quickly becomes clear, while touring this community, that the creators of De Hogeweyk are working hard to break free of conventional notions about what’s possible for elderly people with advanced dementia.
“Our vision is to look at what elderly people in their last few years really want and need,” explains Eloy van Hal, a senior consultant with Vivium, the mostly government-funded foundation that owns De Hogeweyk. “Our focus is on quality of life. To help our residents to live as normal a life as possible.”
Though De Hogeweyk is officially classified as a nursing home, it looks nothing like a traditional, hospital-style nursing facility. There are no wards, long hallways or buildings that appear institutional. Instead, De Hogeweyk (weyk means neighborhood in Dutch), resembles a typical Dutch village, with streets, squares and a courtyard where residents can roam safely and unaccompanied. Like any neighborhood, De Hogeweyk has shops, a restaurant, a pub, a theatre and other recognizable amenities, situated in two-story brick buildings.
Only people diagnosed with “severe cases of dementia or Alzheimer’s disease” are qualified to move to De Hogeweyk, per rules of the Dutch national health insurance, which covers most of the residents’ costs. But residents are not restrained, kept indoors or forced to live on institutional schedules, as often happens in nursing homes. In contrast, De Hogeweyk promotes an active lifestyle, and residents are encouraged to begin their days, eat meals and do other activities when it suits them.
Though the community is gated, residents are encouraged to stroll or bike (on side-by-side bicycles) around as much as they wish within its confines. If they get lost or confused, there is always a staff member nearby to provide assistance. Residents are also encouraged to help with cooking, folding laundry, shopping and other household tasks that help residents remain active and give them a sense of purpose.
De Hogeweyk’s 170 residents live in 27 houses, each shared by six or seven residents and a caregiver who cooks, cleans, accompanies residents to social events and supports them with activities of daily living. All residents have a private bedroom and share a living room, dining room and other public areas with their housemates.
Each house is designed around one of four “lifestyles,” to which residents are assigned based on their lifelong habits and preferences, after testing and interviews with their families. For example, residents accustomed to eating traditional Dutch foods might be assigned to a “Homey” household, while those with more cosmopolitan tastes might live in a Cultural household where French or Italian dishes are served.
Residents of each house typically eat lunch and dinner together. But the care team encourages and supports individual decision-making as much as possible. “In every house the team helps the residents experience a normal day for every individual,” says van Hal. “Residents decide when they get out of bed, what they do during the day. The staff will not take over your life and say ‘you’re in a nursing home, and we decide what you will do.’”
The Hogeweyk concept originated in the early 1990s, when Yvonne van Amerongen, Jannette Spiering and other management team members of a traditional nursing home grew disillusioned with the hospital-style care their demented patients were receiving. In 1993, this team launched a “small-scale living” pilot project at the nursing home, with a goal of providing a more normal life for people with severe dementia. By the early 2000s, the Hogeweyk concept was developed and approved by the Dutch nursing home regulator. Over the next few years the original nursing home was dismantled to clear space, and De Hogeweyk opened its first houses in 2008.
By some measurements, residents of De Hogeweyk are indeed healthier and more joyful than those in conventional nursing facilities. They are more active, spend more time outdoors, eat more and appear less agitated than people living with dementia in standard facilities. “Some residents became too heavy because they were eating too well,” laughs van Hal.
The need for medications has also dropped at De Hogeweyk, as the community’s approach seems to reduce anxiety and aggression among residents. It is part of the Hogeweyk concept to discuss a resident’s medications with families and physicians, to determine whether these medications are still adding to quality of life. “About 50 percent of residents were taking anti-psychotic medications in 1993 [at the nursing home that was later transformed into De Hogeweyk] and now it’s about 7 percent. We are working toward zero,” says van Hal.
Not surprisingly, given the rising prevalence of dementia globally, De Hogeweyk has sparked interest among dementia experts around the world. According to the World Health Organization, more than 35 million people have dementia worldwide, and this number is expected to double by 2030 and triple by 2050, with a corresponding increase in dementia-related healthcare costs.
Van Hal says he regularly consults with organizations in Australia, Canada, England, Italy, the United States and other countries seeking to develop similar facilities. Although no other dementia-only community in the Netherlands offers the exact same care that De Hogeweyk provides, concepts such as small-scale living concept, cooking with residents, lifestyles, community supermarkets, the importance of outdoor environments and a focus on quality of life have been adopted by many Dutch care homes over the past 25 years.
De Hogeweyk is also the clear model for several new projects in other countries, including care homes in Brisbane, Australia, Rome and Saskatoon, Canada. Van Amerongen and van Hal are both senior consultants for Be The Hogeweyk Care Concept, a department of Vivium that consults with people and organizations interested in the Hogeweyk concept.
Cost is often cited as a barrier to developing Hogeweyk-like dementia communities in other countries, especially those like the United States that don’t have socialized healthcare systems. Van Hal scoffs at this argument, pointing out that the cost per resident at De Hogeweyk is similar to traditional nursing homes at around €6,500 per month (equal to about $7,400). A private room at a U.S. nursing home costs about $7,600 per month, on average, according to seniorliving.org. (It should be noted that residents of De Hogeweyk never pay more than €2300 per month, with some residents paying as little as €150 depending on income and assets.)
“Funding is not an obstacle. Our budget per resident is similar to traditional nursing homes,” says van Hal. “The total cost of about €6,500 per resident covers all our real estate costs, all the medications, all the caregivers, all the food. It’s all included. In every Western country this budget is available. But maybe too many residents with severe dementia are in hospital wards, and that costs you around three times as much. If you change your policies you can reduce the costs.”
A bigger obstacle than cost could be finding facility administrators willing to take the kind of risks that De Hogeweyk’s leadership has taken. “You must take calculated risks, and you must take people on your path. That’s why change happens so slowly. Most of the CEOs just don’t want to do that,” explains van Hal.
De Hogeweyk, for example, opts not to follow regulations that require a licensed physical therapist to lead mobility-support exercises for residents, on grounds that it’s more natural when residents walk and do other strengthening activities as part of their normal daily routines with guidance from staff in their house.
“The CEO of Vivium takes a risk every year that the insurance company that funds us will say ‘you’re not working according to regulations. You don’t provide enough physical therapy, and so we will cut your budget,’” says van Hal. ”One of the problems is that regulations will always follow the innovation. First you have the innovation, and then you have new regulations.”
Information about De Hogeweyk is available at https://www.vivium.nl/verpleeghuis-dementie-hogewey-de-hogeweyk-weesp and http://www.bethecareconcept.com. The terminology is a bit confusing: Vivium owns Vivium Zorggroep Hogewey, a non-profit nursing home that operates De Hogeweyk. De Hogeweyk is the section of the nursing home where residents live.
Following are some quotes from my conversation with Eloy van Hal, during a tour of tour of De Hogeweyk in July 2018:
*“We want to leave the nursing home behind. You don’t want to live in a nursing home for the rest of your life. I don’t want that. I want to live in a house in a neighbourhood. I want to socialize. That’s what we’re trying to create here.”
*”If you move in here, and you will die here. Ninety-nine percent of the people who move here will die here. It’s very important that you have fun in your last two or three years. When you’re locked up and treated like a patient, you stop living and start dying. That’s why we talk about residents, and not patients. We don’t focus on the disease, but what they still can do. We focus on quality of life, being engaged in daily life.”
*”Most of the work is done by well-educated care workers. They’re not nurses, but they are allowed to give medications and do certain nursing tasks. They are all trained as care workers, but they are also a sort of mother or father of the household. They make sure that the residents can continue their lives. They are also responsible for making sure there is a nice atmosphere. That the residents who live in that house get a meal preference of that lifestyle, that it’s clean and neat and pleasant. That there is a normal daily rhythm.”
*”Living in a house with five or six other people, living in a group in a neighbourhood, is a good model for most people with dementia because the households help them stick to a normal daily rhythm. But you are an individual, so the household does not prescribe how you should act or what you should do during the day.”
*”It’s essential that residents can continue their lives. In a normal environment. So you live in a house where you can make your own decisions. When you get out of your bed, what you do during the day. And there is staff around that will support you. [The staff] will not take over your life and say ‘you’re in a nursing home, and we decide what you will do.’ We promote real person-centered care.”
*”In a traditional care home, sometimes 30 to 40 percent of the residents are treated in bed. We think that’s not normal and really not necessary. On a normal day like today, two or three of our residents are being treated in bed, and these people will die in a few days.”
*”When we started, we were unique in the Netherlands. Small-scale living. The idea of cooking with residents. People said ‘it’s impossible, it’s illegal, it’s against the hygiene regulations.’ So we’ve definitely changed the way care is organized in the Netherlands.”
*”What is small scale? When we started, 10 residents per house was considered small. But in my opinion 10 is not really small. We’ve found that six is the ideal size. But now eight is the norm in the Netherlands. It’s much cheaper and more efficient to have eight residents than six with the same staffing. But the quality of life is definitely less good. Two more people means more stress, more anxiety. It’s not so easy to run a household with eight people compared with six. So on those details there are not many similar projects.”
*“Do you think it’s more efficient to store the elderly in a facility? That’s not what people want, that’s not the future. Nobody wants that. The weird part is that society accepted until now that we store the elderly, that we lock them up and we say that is all we can do.”
*“I’m not telling you that [De Hogeweyk] is the solution for the future. We must also change our entire mindset on how we look at elderly people living with dementia. We must change the whole society, to a dementia-friendly society. That’s part of my dream. This is a good step forward in re-humanizing how we look at the elderly and how we look at quality of life. Meanwhile, we must develop better versions of the Hogeweyk, more open versions, more socially integrated. Because social inclusion is an essential part of this.”
*”We don’t have a dietician here. It’s so weird that when you move into a nursing home someone tells you you’ve eaten too many potatoes, or your smoking is unhealthy, or alcohol is unhealthy, you’re going on a diet. Most people want a recognizable meal, so that’s what we try to do. And you see that people eat better. When you eat at a table with six people and you get the support where you’re invited. And if you’re allowed to make that sandwich yourself people eat much better.”
*”Many regulations are based on traditional care homes … so you must challenge existing thoughts and regulations. We don’t use restraints. We are convinced its better for mom to walk around than for her to sit in a chair. And it’s a misunderstanding that she will fall less. That’s how we look at this now, but in the beginning people were very afraid. They were all thinking that we’d have more falling.”
*”We promote multi-generational interaction. In my dream, next time we will develop a day care center or a school in De Hogeweyk, so it’s incorporated. Or even elderly people without dementia living here or university students, so finally you create a normal neighbourhood, a dementia-friendly society.”
*”We wanted to show that cooking with residents is not dangerous. Why can’t a resident help with cooking? Nursing homes try to create a world where nothing happens, and that world doesn’t exist. That’s a risk we accept. By normalizing and de-institutionalizing and focusing on quality of life you see that the residents can do many things and it’s not stressful.”
*”What I see is that quality of life is higher for our residents for a longer period, and that the last phase goes quicker … Residents who move here live an average of 2.2 years. We provide the palliative care (in consultation with doctor and family) and pain reduction and whatever is needed. We accept that people die, that life will end sometime. Most people don’t want to be kept alive with a feeding tube.
*”The team helps provide a meaningful day. And because it’s a normal household, you can also involve them in normal meaningful activities. Go to the shop together or participate in cooking. You can cut the onions or peel the potatoes if that’s something you did for 60 years and that gives you a feeling of value. You can fold towels. Residents don’t do all the laundry, but they can be involved in it. It’s a very recognizable activity. The smell can be enough, the touch. Outside, the residents can wander around, make their own decisions.”
*”What is the main task of the physical therapist in our concept? Mobility. To help keep the residents mobile. How do we do that in our model? By bringing everyone here to the physiotherapy room once a week and doing exercises? No. It’s through normal meaningful activities inside and outside the house. Doing dishes in the kitchen, folding towels. Often the residents are standing or walking at home and attending a gym club. You’re not kept in a chair or restrained.”
*”We have only one physical therapist for 180 residents. In a traditional care home there would be at least three or four physical therapists. But it’s stupid to bring someone in to the gym to do an exercise and then bring them back home and sit on your butt for the rest of your day. So [the physical therapist] works more as an expert in supporting the home-based care teams who work with the residents almost the whole day. Most of the physical therapy is done by the care workers in a natural way.”
Photos courtesy of Be The Hogeweyk Care Concept, part of Vivium Zorggroep.