PeoÂple sufÂferÂing from demenÂtia lose their abilÂiÂty to take an active part in conÂverÂsaÂtions, everyÂday activÂiÂties, and their own physÂiÂcal upkeep.
They are prone to sudÂden mood swings, irriÂtabilÂiÂty, depresÂsion, and anxÂiÂety.
They may be strickÂen with deluÂsions and wild halÂluÂciÂnaÂtions.
All of these things can be underÂstandÂably upsetÂting to friends and famÂiÂlies. There’s a lot of stigÂma surÂroundÂing this sitÂuÂaÂtion.
TakÂing care of a spouse or parÂent with demenÂtia can be an overÂwhelmÂingÂly isoÂlatÂing expeÂriÂence, though no one is more isoÂlatÂed than the perÂson expeÂriÂencÂing severe cogÂniÂtive decline firstÂhand.
While many of us would do anyÂthing to stay out of them, the sad fact is resÂiÂdenÂtial memÂoÂry care facilÂiÂties are often the end-of-the-line realÂiÂty for those livÂing with extreme demenÂtia.
DurÂing the first sumÂmer of the COVID-19 panÂdemÂic, nursÂing home deaths attribÂuted to Alzheimer’s disÂease and demenÂtia increased by more than 20 perÂcent, owing to such facÂtors as chronÂic staffing shortÂages and a ban on outÂside visÂiÂtors.
As DeAnn WalÂters, direcÂtor of clinÂiÂcal affairs for the CalÂiÂforÂnia AssoÂciÂaÂtion of Health FacilÂiÂties, told PolitiÂco:
We’re tryÂing to be supÂportÂer, social workÂer, careÂgivÂer, friend and houseÂkeepÂing for the resÂiÂdent. It’s putting a lot of presÂsure on the careÂgivers and the operÂaÂtion of the facilÂiÂty to make sure everyÂone has what they need. Before the panÂdemÂic we couldn’t even get socks on peoÂple and you’d see them walkÂing around bareÂfoot.
Not the vision any of us would choose for our parent’s goldÂen years, or our own.
The Hogeweyk, a planned vilÂlage just outÂside of AmsÂterÂdam, offers a difÂferÂent sort of future for those with severe demenÂtia.
The above episode of By Design, Vox’s series about the interÂsecÂtion of design and techÂnolÂoÂgy, explores the innoÂvaÂtions that conÂtribute to the Hogeweyk’s resÂiÂdents overÂall hapÂpiÂness and wellÂbeÂing.
Rather than groupÂing resÂiÂdents togethÂer in a sinÂgle instiÂtuÂtionÂal setÂting, they are placed in groups of six, with everyÂone inhabÂitÂing a priÂvate room and sharÂing comÂmon spaces as they see fit.
The comÂmon spaces open onto outÂdoor areas that can be freely enjoyed by all housed in that “neighÂborÂhood”. No need to wait until a staff memÂber grants perÂmisÂsion or finÂishÂes some task.
Those wishÂing to venÂture furÂther afield can avail themÂselves of such pleasÂant quoÂtidÂiÂan desÂtiÂnaÂtions as a groÂcery, a restauÂrant, a barÂberÂshop, or a theÂater.
These locaÂtions are designed in accorÂdance with cerÂtain things proven to work well in instiÂtuÂtionÂal setÂtings — for instance, avoidÂing dark floor tiles, which some peoÂple with demenÂtia perÂceive as holes.
But othÂer design eleÂments reflect the choice to err on the side of qualÂiÂty of life. Hand rails may help in preÂventÂing falls, but so do rolÂlaÂtors and walkÂers, which the resÂiÂdents use on their jaunts to the town squares, garÂdens and pubÂlic ameniÂties.
The designÂers believe that equipÂping resÂiÂdents with a high levÂel of freeÂdom not only proÂmotes physÂiÂcal activÂiÂty, it minÂiÂmizes issues assoÂciÂatÂed with demenÂtia like aggresÂsion, conÂfuÂsion, and wanÂderÂing.
Co-founders Eloy van Hal and JanÂnette SpierÂing write that the Hogeweyk’s critÂics comÂpare it to the TruÂman Show, the 1998 film in which Jim CarÂrey’s title charÂacÂter realÂizes that his wholeÂsome small town life, and his every interÂacÂtion with his purÂportÂed friends, neighÂbors, and loved ones, have been a set up for a highÂly ratÂed, hidÂden camÂera realÂiÂty TV show.
They describe The Hogeweyk as a stage for, “the remÂiÂnisÂcence world”, in which actors help the resÂiÂdents live in a ficÂtiÂtious world. Many Alzheimer’s experts have, howÂevÂer, valÂued The Hogeweyk for what it realÂly is: a familÂiar and safe enviÂronÂment in which peoÂple with demenÂtia live while retainÂing their own idenÂtiÂty and autonÂoÂmy as much as posÂsiÂble. They live in a social comÂmuÂniÂty with real streets and squares, a real restauÂrant with real cusÂtomers, a superÂmarÂket for groÂceries and a theÂatre that hosts real perÂforÂmances. There is no fake bus stop or post office, there are no fake façades and sets. The restauÂrant employÂee, the handyÂman, the careÂtakÂer, the nurse, the hairÂdressÂer, etc.—in short: everyÂone who works at The Hogeweyk uses their proÂfesÂsionÂal skills to actuÂalÂly supÂport the resÂiÂdents and are, thereÂfore, cerÂtainÂly not actors.
ProÂfesÂsionÂal care and supÂport goes on around the clock, but rarely takes cenÂterÂstage. NorÂmal life is priÂorÂiÂtized.
A visÂiÂtor describes a stroll through some of the Hogeweyk’s pubÂlic areas:
In the shade of one of the large trees, a marÂried couÂple gazes hapÂpiÂly at the activÂiÂty in the theÂatre square. An elderÂly genÂtleÂman, togethÂer with a young lady, intentÂly study the large chess board and take turns movÂing the pieces. At the founÂtain, a group of women chat loudÂly on colourÂful garÂden chairs. The stoÂry is clearÂly audible—it is about a memÂoÂry of a visÂit to a park in Paris which had the same chairs. Passers-by, old and young, greet the women enthuÂsiÂasÂtiÂcalÂly. A litÂtle furÂther on, a woman is talkÂing to a man oppoÂsite her. She is gesÂturÂing wildÂly. After a while, anothÂer woman joins the conÂverÂsaÂtion. The two women then walk through the open front door of BouleÂvard 15.
The covÂered pasÂsage smells of freshÂly-baked cookÂies. The scent is comÂing from De Bonte Hof. AmusÂing conÂverÂsaÂtions can be heard that pause for a moment when the oven beeps in the kitchen that has been decÂoÂratÂed in an old-fashÂioned style. A tray of fresh cookÂies is removed from the oven. Two women, one in a wheelÂchair, enter the venue, obviÂousÂly seduced by the smell. They samÂple the cookÂies.
The superÂmarÂket across the street is very busy. ShopÂping trolÂleys loaded with groÂceries are pushed out of the shop. The ratÂtle of a shopÂping trolÂley disÂsiÂpates into the disÂtance as it disÂapÂpears from view towards Grote Plein. A man relucÂtantÂly pushÂes the full trolÂley while two women folÂlow behind him arm in arm. The trio disÂapÂpear behind the front door of Grote Plein 5.
A staffer’s account of a typÂiÂcal mornÂing in one of Hogeweyk’s housÂes reveals more about the hands-on care that allows resÂiÂdents to conÂtinÂue enjoyÂing their careÂfulÂly designed home, and the autonomous lifestyle it makes posÂsiÂble:
Mr HenÂdricks wakes up on the sofa. He unzips his fly. I jump up and escort him to the toiÂlet just in time. I grab a roll of medÂicaÂtion for him from the medÂicaÂtion trolÂley. He is now walkÂing to his room. We pick out clothes togethÂer and I lay them out on his bed. He washÂes himÂself at the sink. I watch briefly before leavÂing. FifÂteen minÂutes latÂer, I poke my head through the door. That’s not how elecÂtric shavÂing works! I offer to help, but Mr. HenÂdricks is clearÂly a bit irriÂtatÂed and grumÂbles. He’ll be a litÂtle less shaven today. We’ll try again after breakÂfast…
We help Mrs StiÂjÂnen into the showÂer chair with the hoist. She is clearÂly not used to it. DisÂcussing her extenÂsive SwarovsÂki colÂlecÂtion, disÂplayed in the glass case in her room, turns out to be an excelÂlent disÂtracÂtion. She proudÂly talks about the latÂest piece she acquired this year. On to the showÂer. The two othÂer resÂiÂdents are still sleepÂing. Great, that gives me the chance to devote some extra time to Mrs StiÂjÂnen today.
The doorÂbell rings again and my colÂleague, YasÂmin, walks in. She’s the familÂiar face that everyÂone can rely on. Always present at 8 a.m., 5 days a week. What a relief for resÂiÂdents and famÂiÂly. She, too, puts her coat and bag in the lockÂer. The washÂing machine is ready, and YasÂmin loads up the dryÂer. The table in the dinÂing room is then set. YasÂmin puts a floÂral tableÂcloth from the cupÂboard on the table. Mr HenÂdricks lends a hand and, with some guidÂance, puts two plates in their place, but then walks away to the sofa and sits down. A Dutch breakÂfast with bread, cheese, cold cuts, jam, cofÂfee, tea and milk is served. YasÂmin is makÂing porÂridge for Mrs Smit. As always, she has breakÂfast in bed. YasÂmin helps Mrs Smit. It is now 08:45 and Mr HenÂdricks and Mrs StiÂjÂnen are sitÂting at the dinÂing table. YasÂmin pushÂes the chairs in and sits down herÂself. They chat about the weathÂer, and YasÂmin lends a helpÂing hand when needÂed.
Mr HenÂdricks is realÂly grumpy today and is curÂrentÂly grumÂbling at Mrs Jansen. I’m wonÂderÂing if we’re overÂlookÂing someÂthing?
Learn more about the Hogeweyk, the world’s first demenÂtia vilÂlage here.
Watch a playlist of Vox By Design episodes here.
RelatÂed ConÂtent
The RestauÂrant of MisÂtakÂen Orders: A Tokyo RestauÂrant Where All the Servers Are PeoÂple LivÂing with DemenÂtia
How Music Can AwakÂen Patients with Alzheimer’s and DemenÂtia
DemenÂtia Patients Find Some EterÂnal Youth in the Sounds of AC/DC
- Ayun HalÂlÂiÂday is the Chief PriÂmaÂtolÂoÂgist of the East VilÂlage Inky zine and author, most recentÂly, of CreÂative, Not Famous: The Small PotaÂto ManÂiÂfesto. FolÂlow her @AyunHalliday.
