Imagine enabling people with severe dementia to live out their final months actively pursuing many of the interests and activities they had enjoyed throughout their lives, rather than being segregated from family and friends, sequestered into spartan hospital-like facilities, and medicated and sedated to near unconsciousness. Well, that is precisely the goal of the Hogeweyk, a residential dementia care facility located just a short train ride from the heart of Amsterdam in the Netherlands.
Just a Typical Nursing Home
The center was formerly akin to most nursing homes—a one-size-fits-all experience for residents with long disorienting corridors of monotonous colorless resident rooms, overtaxed nurses, aides dispensing medications and meals on rigid schedules, residents spending much of their days deposited to unobtrusive corners of hallways and dayrooms, bored family members affecting shorter and shorter visits, limited interaction between residents, and an institutional focus on what residents could no longer accomplish for themselves.
But Then…
But then, a team of visionary professionals decided to flip the script. Residents were to be seen as and treated as individual independent beings—with their own personalities, values, past experiences, pursuits, pass-times, likes, and interests. Rather than treating residents as patients with a relentlessly progressive disease—losing function daily—the center focused on who each resident was throughout their lives and what they retained of their personas, their interests, and their activities, despite the disease. They were grouped by such retained qualities and encouraged to maintain them—even develop them further—independently and/or with others, with a focus on mobilization, movement, and activities of normal daily living. Care givers soon noted that despite often severe cognitive disabilities, most of the residents maintained some of the interests of their lives and pursued them joyfully when given the opportunity and support to do so.
Life at the Hogeweyk
When an opportunity presented itself to rebuild the center, the Hogeweyk team did so to maximize their novel approach. The center is now arranged into twenty seven independent townhouse-style dwellings, each with a fully functional kitchen and spacious living room. Six or seven residents live in each house and are assisted by two attendants. Each resident has their own personalized bedroom and bathroom. There are four different types of housing interiors (from the conservative to the cosmopolitan) to coordinate with resident personalities and to facilitate a sense of familiarity. Within each house, residents are encouraged and supported to interact and to participate in activities of their choice. Many help with household chores such as cooking, cleaning, laundering etc.
The houses enclose outdoor spaces where residents can walk about, breathe fresh air, take in the sun (and rain), interact, enjoy quiet gardens, and/or head for various facilities and club activities. These include a small fully functional supermarket where food and household necessities are purchased, a restaurant (where residents, families, and neighbors can gather and eat), a pub, a movie theatre/auditorium, a beauty parlor/barbershop, a fitness center, a music room, an arts and crafts room, and more. Clubs supporting various hobbies and interests are almost too numerous to count. One such club involves weekly gatherings in the pub for the singing of traditional Dutch folk songs.
To qualify for admission, residents need to be in end-stage dementia (with approximately 1-3 years of life expectancy) and need to have reached a point where they can no longer live independently or be cared for in the home of a family member. Despite this level of disability, on any given visit, one will witness residents milling about the various facilities with or without assistants, sitting out at picnic tables, partaking in club activities, visiting with their families, participating in therapy, laughing, interacting, cooking in their kitchens, doing crafts, reading papers, or watching TV in their living rooms. Few seem to be lying in their beds or sleeping in a wheelchair within view of a nurses station (of which there are none).
Advantages of this System
Every year we take a group of Virginia Tech Neuroscience/Global Health Perspective students to visit the Hogeweyk. Most are intending to go into healthcare and many have worked within the American nursing home system. They are uniformly impressed and moved by the profound persistence of persona and personality, of activity and mobility, of physical robustness, of joy and verve, of interactive skills and drive, and of interest and motivation in the residents—in other words, of their preserved humanity. They note a stark difference between these residents and those in a traditional nursing facility. They also note the readily apparent presence of family members, children, and friends enjoying the plentiful and attractive communal spaces with the residents. They note that center feels like a little village rather than an institution. Yet, the administration at the Hogeweyk insists that the center receives no greater governmental funding than other Dutch dementia care facilities.
Acknowledgment and Acceptance of Death
One of the features that contributes to the center’s success is a realistic approach to end of life. The subject of death is not fastidiously avoided—by caregivers or family members. When it rears its head, death is not rabidly combated to the bitter end as if it was somehow a conquerable entity. Residents in terminal states are never subjected to weeks of ICU care, intubation, invasive procedures, and other tortures. Rather, the natural progression of the disease is acknowledged and accepted. With such an acknowledgement, however, impending death ceases to be a focus. Rather, optimized living is the focus. Readily reversible ailments are medically addressed as necessary, but devastating and/or preterminal events are addressed with expectant care centered on resident dignity and comfort.
Caretakers maintain that with the Hogeweyk approach, residents are more robust, more physically capable, more alert, less confused, less depressed, less agitated than in a traditional center. They note that medication utilization for both behavioral and medical issues are significantly reduced. As a result, residents don’t seem to inexorably deteriorate month to month but, rather, maintain functionality until they are close to death, at which point they tend to rapidly deteriorate and peacefully succumb.
Celebrating Meaningful Life
The ultimate focus of the center is a celebration of life until it comes to its natural end. There is far less a sense of warehousing of pre-terminal beings and far more a sense of indulging in the identities, activities, relationships that help define the best components of the human experience. The result is happier, more active and engaged residents, diminished stress and guilt in families (with greater involvement and engagement), and decreased stress and burnout in attendant caregivers. How this has not become the model for such care should be a question we are all asking.