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.

Relat­ed Con­tent 

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.