People suffering from dementia lose their ability to take an active part in conversations, everyday activities, and their own physical upkeep.
They are prone to sudden mood swings, irritability, depression, and anxiety.
They may be stricken with delusions and wild hallucinations.
All of these things can be understandably upsetting to friends and families. There’s a lot of stigma surrounding this situation.
Taking care of a spouse or parent with dementia can be an overwhelmingly isolating experience, though no one is more isolated than the person experiencing severe cognitive decline firsthand.
While many of us would do anything to stay out of them, the sad fact is residential memory care facilities are often the end-of-the-line reality for those living with extreme dementia.
During the first summer of the COVID-19 pandemic, nursing home deaths attributed to Alzheimer’s disease and dementia increased by more than 20 percent, owing to such factors as chronic staffing shortages and a ban on outside visitors.
As DeAnn Walters, director of clinical affairs for the California Association of Health Facilities, told Politico:
We’re trying to be supporter, social worker, caregiver, friend and housekeeping for the resident. It’s putting a lot of pressure on the caregivers and the operation of the facility to make sure everyone has what they need. Before the pandemic we couldn’t even get socks on people and you’d see them walking around barefoot.
Not the vision any of us would choose for our parent’s golden years, or our own.
The Hogeweyk, a planned village just outside of Amsterdam, offers a different sort of future for those with severe dementia.
The above episode of By Design, Vox’s series about the intersection of design and technology, explores the innovations that contribute to the Hogeweyk’s residents overall happiness and wellbeing.
Rather than grouping residents together in a single institutional setting, they are placed in groups of six, with everyone inhabiting a private room and sharing common spaces as they see fit.
The common spaces open onto outdoor areas that can be freely enjoyed by all housed in that “neighborhood”. No need to wait until a staff member grants permission or finishes some task.
Those wishing to venture further afield can avail themselves of such pleasant quotidian destinations as a grocery, a restaurant, a barbershop, or a theater.
These locations are designed in accordance with certain things proven to work well in institutional settings – for instance, avoiding dark floor tiles, which some people with dementia perceive as holes.
But other design elements reflect the choice to err on the side of quality of life. Hand rails may help in preventing falls, but so do rollators and walkers, which the residents use on their jaunts to the town squares, gardens and public amenities.
The designers believe that equipping residents with a high level of freedom not only promotes physical activity, it minimizes issues associated with dementia like aggression, confusion, and wandering.
Co-founders Eloy van Hal and Jannette Spiering write that the Hogeweyk’s critics compare it to the Truman Show, the 1998 film in which Jim Carrey’s title character realizes that his wholesome small town life, and his every interaction with his purported friends, neighbors, and loved ones, have been a set up for a highly rated, hidden camera reality TV show.
They describe The Hogeweyk as a stage for, “the reminiscence world”, in which actors help the residents live in a fictitious world. Many Alzheimer’s experts have, however, valued The Hogeweyk for what it really is: a familiar and safe environment in which people with dementia live while retaining their own identity and autonomy as much as possible. They live in a social community with real streets and squares, a real restaurant with real customers, a supermarket for groceries and a theatre that hosts real performances. There is no fake bus stop or post office, there are no fake façades and sets. The restaurant employee, the handyman, the caretaker, the nurse, the hairdresser, etc.—in short: everyone who works at The Hogeweyk uses their professional skills to actually support the residents and are, therefore, certainly not actors.
Professional care and support goes on around the clock, but rarely takes centerstage. Normal life is prioritized.
A visitor describes a stroll through some of the Hogeweyk’s public areas:
In the shade of one of the large trees, a married couple gazes happily at the activity in the theatre square. An elderly gentleman, together with a young lady, intently study the large chess board and take turns moving the pieces. At the fountain, a group of women chat loudly on colourful garden chairs. The story is clearly audible—it is about a memory of a visit to a park in Paris which had the same chairs. Passers-by, old and young, greet the women enthusiastically. A little further on, a woman is talking to a man opposite her. She is gesturing wildly. After a while, another woman joins the conversation. The two women then walk through the open front door of Boulevard 15.
The covered passage smells of freshly-baked cookies. The scent is coming from De Bonte Hof. Amusing conversations can be heard that pause for a moment when the oven beeps in the kitchen that has been decorated in an old-fashioned style. A tray of fresh cookies is removed from the oven. Two women, one in a wheelchair, enter the venue, obviously seduced by the smell. They sample the cookies.
The supermarket across the street is very busy. Shopping trolleys loaded with groceries are pushed out of the shop. The rattle of a shopping trolley dissipates into the distance as it disappears from view towards Grote Plein. A man reluctantly pushes the full trolley while two women follow behind him arm in arm. The trio disappear behind the front door of Grote Plein 5.
A staffer’s account of a typical morning in one of Hogeweyk’s houses reveals more about the hands-on care that allows residents to continue enjoying their carefully designed home, and the autonomous lifestyle it makes possible:
Mr Hendricks wakes up on the sofa. He unzips his fly. I jump up and escort him to the toilet just in time. I grab a roll of medication for him from the medication trolley. He is now walking to his room. We pick out clothes together and I lay them out on his bed. He washes himself at the sink. I watch briefly before leaving. Fifteen minutes later, I poke my head through the door. That’s not how electric shaving works! I offer to help, but Mr. Hendricks is clearly a bit irritated and grumbles. He’ll be a little less shaven today. We’ll try again after breakfast…
We help Mrs Stijnen into the shower chair with the hoist. She is clearly not used to it. Discussing her extensive Swarovski collection, displayed in the glass case in her room, turns out to be an excellent distraction. She proudly talks about the latest piece she acquired this year. On to the shower. The two other residents are still sleeping. Great, that gives me the chance to devote some extra time to Mrs Stijnen today.
The doorbell rings again and my colleague, Yasmin, walks in. She’s the familiar face that everyone can rely on. Always present at 8 a.m., 5 days a week. What a relief for residents and family. She, too, puts her coat and bag in the locker. The washing machine is ready, and Yasmin loads up the dryer. The table in the dining room is then set. Yasmin puts a floral tablecloth from the cupboard on the table. Mr Hendricks lends a hand and, with some guidance, puts two plates in their place, but then walks away to the sofa and sits down. A Dutch breakfast with bread, cheese, cold cuts, jam, coffee, tea and milk is served. Yasmin is making porridge for Mrs Smit. As always, she has breakfast in bed. Yasmin helps Mrs Smit. It is now 08:45 and Mr Hendricks and Mrs Stijnen are sitting at the dining table. Yasmin pushes the chairs in and sits down herself. They chat about the weather, and Yasmin lends a helping hand when needed.
Mr Hendricks is really grumpy today and is currently grumbling at Mrs Jansen. I’m wondering if we’re overlooking something?
Learn more about the Hogeweyk, the world’s first dementia village here.
Watch a playlist of Vox By Design episodes here.
The Restaurant of Mistaken Orders: A Tokyo Restaurant Where All the Servers Are People Living with Dementia
How Music Can Awaken Patients with Alzheimer’s and Dementia
Dementia Patients Find Some Eternal Youth in the Sounds of AC/DC
– Ayun Halliday is the Chief Primatologist of the East Village Inky zine and author, most recently, of Creative, Not Famous: The Small Potato Manifesto. Follow her @AyunHalliday.