The music was neither fake nor true.

October 1, 2018 11:58 AM

"The Comforting Fictions of Dementia Care." Larissa MacFarquhar explores many dimensions of treatment for people afflicted with memory diseases. (SLNewYorker)

Short interview with the author. Previously: Larissa MacFarquhar on organ donation, Derek Parfit, altruism, and Peter Singer.

posted by doctornemo (31 comments total)

People with dementia often ask to go home. Some ask even if they’re still in the house they’ve lived in for years; but people in institutions can ask many times a day. Telling a person in an institution that they live here now, that this is their permanent home, is usually neither comforting nor convincing, so, to address this problem, many nursing homes and hospitals have installed fake bus stops. When a person asks to go home, an aide takes them to the bus stop, where they sit and wait for a bus that never comes.

Jesus - as someone w/some family history of this, this confirms the decision that I made when I bought a copy of Final Exit in my 30s. At the first hint, I'm outta here.
posted by ryanshepard at 12:21 PM on October 1, 2018 [17 favorites]

Thanks for posting this. It's a tricky one. My father has dementia, has read Contented Dementia and isn't happy with the idea of being lied to. Fortunately, at the moment, he doesn't seem to mind me saying he's wrong about things (I do try not to be all The Truth all the time). He told me a long story the other day about visiting my aunt in hospital (which he never did) in Birmingham and how the hospital had been taken over by the prevailing B'ham culture, with brightly-dressed people living in its alleys and cooking on portable stoves. I said I thought there was a nugget of truth in that, which he knew quite well was disbelief, and he found that amusing. He seems to enjoy the fantasising without having to be believed. Possibly because he's never been that interested in other people's views. How it will play out in the next few years though I don't know and I have the dread, as does he.
posted by paduasoy at 12:22 PM on October 1, 2018 [7 favorites]

Oof. My mother, who was a brilliant scientist, lives in a swanky memory care facility now. Fortunately it's not the angry and frightened kind of dementia, but if my mother of 2008 could see my mother of 2018, she'd tell us to give her the Old Yeller treatment.
posted by slkinsey at 12:39 PM on October 1, 2018 [5 favorites]

As someone who has dealt very closely with a loved one with dementia, I can attest that the “go with the flow” method of speaking with them is the way to go, especially as the disease progresses.
posted by Thorzdad at 12:39 PM on October 1, 2018 [25 favorites]

My mother insisted on the truth religiously with my father, and I think it was unbelievably distressing for him. I can understand the desire to give the person dignity by being truthful, but I really don't think it's the right move having seen it in person. Being told over and over, all day long, that you are wrong and basically crazy and mistaken and can't trust anything... I have no words.
posted by thegreatfleecircus at 12:49 PM on October 1, 2018 [15 favorites]

We experimented with accepting the fantasy with my grandmother, but found it was often not very workable. She would tell a distressing story and then ask us why the authorities didn't intervene. We were therefore damned either way - either we said that they didn't intervene in a bad situation, which caused her outrage, or we angered her by doubting the story. We tried to steer a middle course around speaking to the feelings rather than the stated facts, and using distraction, but it didn't work hugely well. She was a very clever and argumentative academic and absolutely on to any sign of us disbelieving her.
posted by paduasoy at 1:10 PM on October 1, 2018 [7 favorites]

It's so hard to acknowledge their concerns while not lying. Because just when you think they won't hold you accountable for the lies, they catch on -- because many forms of dementia also come with paranoia.

Dad was easier to deal with in many ways, because he was basically a nice guy. But he had his pride, and he was still pretty mobile, so he didn't like being on the locked memory floor, and a couple of times managed to get out and go around the corner to the diner for a cup of coffee and a burger. (Which wouldn't have been so bad except he used a walker and the traffic in the area was pretty heavy and dangerous for pedestrians.)

Mom was mean, and paranoid, and covered her memory lapses with anger. And so she would accuse the residence staff of stealing her rings when in fact she hid them in a tissue in her sweatshirt pocket. She knew exactly where she was, and she was having none of it. She assumed we were lying about everything, so even telling the truth didn't help.

But I've understood for a while that "wanting to go home" basically means "I want to be happy and comfortable and not afraid of the way my brain no longer works". Moving them "home" won't fix that, and of course every time you move them it makes matters worse.
posted by suelac at 1:19 PM on October 1, 2018 [13 favorites]

It seemed to me like nearly everyone was talking around the fact that many aging people want something meaningful to *do*, whether they've lost their memory or not. My grandmother is still sharp as a tack, and as long as she was physically capable of painting she was very content with her life, but last time I visited her she was very down in the dumps because she could no longer hold a brush. The way we institutionalize the elderly in the US isn't conducive to generate meaningful activities. And the only alternative we can imagine is relying on unpaid labor performed largely by daughters (like my aunt, who has sacrificed her own life and artistic career to care for my grandparents).
posted by muddgirl at 1:33 PM on October 1, 2018 [16 favorites]

That was a rough read.  My own mother is 3100 miles away, experiencing vascular dementia, and is in permanent care now.  My brother had been taking care of her, but it eventually became too much, and it's just so heartbreaking to know your own mother now requires being watched and cared for 24 hours a day and there's nothing you can do about it.  We kids were begging her to treat her high blood pressure way back in the 70s when she was in her 30s and 40s, but she didn't like the side effects of the drugs.  Even when her own mother declined in the exact same fashion due to her refusal to control her diabetes, she continued to refuse to treat the hypertension.  It's clear from whom I got my stubborn streak.

And her decline affects each of us differently.  My brother's had to deal with it daily for years, living only blocks away, but does get the one benefit of daily exposure turning it familiar at least.  Cold comfort for him I'm sure, as I'm on the other side of the continent and haven't had to struggle with the issues directly like my brother.  But on the other hand my rare journeys home mean I get to see multi-year declines in one brutal moment.  I don't know which is worse.

I've been calling home weekly now for years, after a long period of rarely speaking mostly due to me clearly taking after my mother—she loves us all dearly of course, but was never the type to need to speak to us daily or even monthly after we were grown—we're a rather independently minded lot, my family.  But as the decline became too obvious to ignore I broke that habit and began calling every week just to talk, because it became clear I was at some point going to have to admit I'd said goodbye to the mother I'd known even if she was still physically here, and I had no way of knowing when that would be.  And I've been so lucky.  My brother and sister would report the difficulties she was having, but since I live so far away, when I call she can pretend everything's normal, and even better, she rarely had any issues when speaking with me, other than taking a few moments to get up to speed or occasionally searching for a word.  So I can relate to the temptation, the need to play along.

This last call though I started through the usual chit chat, mentioning the weather was beginning to turn out here, and next thing Mom asked was "What are you doing out in Seattle?"  Oh dear God, nothing prepares you for that moment.  I've lived here for over 17 years.  What can you do?  I blew it off with a simple offhand comment that I'd been out here for a while and moved on with more cheerful talk.  I held it together at least until I got off the phone, but it's still haunting me at unpredictable moments.  Next week her memory may be a bit better.  It may not.  I have no way to know, but the one thing I do know is you don't come back from this; it's a one way trip with many brutal stops and brief moments of clarity before it resumes its relentless march. And it's devastating to watch.

Goodbye, Mom.
posted by los pantalones del muerte at 1:37 PM on October 1, 2018 [31 favorites]

My first thought is that VR technology might one day be of great help or use in these environments. I know if I, for some reason, got to this age and point of condition, I'd find much solace in a virtual fantasy world of some kind to live out my days.

"“All of them said, Why do you lie to us when we are at our most vulnerable? Would you wish your relationships with others to be based on deceit? Why do you create fake worlds for people with dementia? Why do you convert care homes to look like pubs or cinemas? For me,” he says, “that was a light-bulb moment. It shouldn’t be about deceiving people. It should be about giving them meaningful lives in the present, rather than trying to keep them in nostalgic themes from the past.”"

These are some tough questions because the answers are so far from comforting and offer no real resolution. What does it mean to have a meaningful life in the present when in many ways you are past that stage of life, whatever you might have once defined as the meaning of any stage of life. There is no "going home" and they are physically incapable of realizing whatever realities they had in their previous life.

I think dementia is the scariest affliction I know of, your own brain no longer trustworthy or reliable.
posted by GoblinHoney at 1:58 PM on October 1, 2018 [5 favorites]

I don't think we have (in the US) a good concept of what it means to live a meaningful life as we age. That doesn't mean it's not possible or a worthwhile goal. It means we have to look past the idea that capitalistic production is the only purpose in life, and that being dependent on someone else is infantilizing because adults naturally produce while children naturally consume. It also has to involve paying caregivers a higher salary, whether they are professionals or family members, because we have to recognize elderly care as important and vital work.
posted by muddgirl at 2:48 PM on October 1, 2018 [15 favorites]

Dr. Stokes urges honesty and validation, but admits it is challenging to do. Then in the next paragraph, he laments that paid nursing home caregivers are “transient” types who he implies shouldn’t be trusted (wow!). When are we going to wake up and realize this is REAL, vital work that should be appropriately compensated? I have been a caregiver for many people with disabilities. Some have cognitive disabilities. But the one time I had a client with dementia... I couldn’t do it. The work was both boring, exhausting, and depressing. So I vowed to never again take a job caring for a person with dementia. It’s difficult work and the people who do it should be respected.

Thank you for posting this article. It was very thought provoking... I will be mulling it over for a while.
posted by shalom at 3:00 PM on October 1, 2018 [20 favorites]

I'm assisting in caring for my father, who has Alzheimers. He is pretty far along that trail but still enjoys his life. It's hard on us to see his decline but as I say, he genuinely still enjoys his life even though it is diminished.

The most difficult thing has been taking him out with us to restaurants, shopping, just helping him to be outside and among people--because of all the loud comments from strangers about how they would rather eat a bullet than end up like father. Fortunately father is also a bit hard of hearing but we still hear it, and it hurts.
posted by tumbling at 5:32 PM on October 1, 2018 [9 favorites]

I’d rather have happiness than my dignity.
posted by bq at 5:36 PM on October 1, 2018 [3 favorites]

I remember reading about a dementia care unit, I think in the Netherlands, which was structured very much like a little village. There was a small general store at which the residents could buy food. (I am not sure how they handled cooking.) There was a bus that ferried people from their garden-apartment style homes to the store or the park or the library. According to that website, there is a restaurant, bar, and a theater as well. It seemed like a much more dignified alternative to the usual state of dementia care in the US, which is locked doors and Seroquel.
posted by basalganglia at 6:26 PM on October 1, 2018 [10 favorites]

This has been my daily life for seven years now. We've managed to keep Mom in her own home with Dad for that long, through the earlier stages the article focuses on to the point where she's now been non-verbal for about year. We were lucky that she's mostly been the happy, compliant sort, and only very rarely the terrified and angry sort. This has meant we've been able to manage without any sedation during the day and only a minimal amount overnight. For the first few years I managed it alone. For the last few, my daughter has been doing a yeoman's job helping, spending half the time with her. Dad helps as much as he can, but his own physical health prevents much direct assistance. It has been exhausting emotionally in ways I can't put into words.

After a couple weeks of hospitalization earlier this year the doctors officially designated her palliative. In our jurisdiction this means they felt she likely had less than six months to live. That designation helps with costs, and has enabled us to have health care aides in regularly to help with bathing and toileting. That has been a relief, but they need constant management and physical help.

Her physical health is really pretty good for her age, and there-in lies the crux. The idea that she is palliative is surely because people whose dementia is this far advanced in the normal healthcare system do normally die within months—not because of the dementia itself, but because the long-term care system does a good, but not great, job of preventing accidental infections, aspirating on food/water, trauma from a fall, etc. That's a horrible path, and yet I can't say with certainty that we're doing a better thing by keeping her safe and healthy.

It was worth it to make the years she was aware of as happy a time as possible, but there is no good solution at the end.

As a caregiver, it is like raising a child in reverse—every bit as life-consuming, but watching as, day by day, a loved one becomes less and less rather than more and more.

What I do know is, at the slightest hint of such symptoms, I will add a little bottle to my medicine cabinet labelled, “If you can't remember what these are for, take all of them.”
posted by bcd at 7:29 PM on October 1, 2018 [13 favorites]

OK, I skimmed. This is my life so reading about it is a bit tough. Mostly it was horrifyingly familiar: the repetitive attempts to go home, the lying. I was skimming for something in particular though: one horrible aspect of dementia care I come back to constantly when visiting my mom (who incidentally mostly hates me since she got super demented, although somewhat less as her dementia gets even more advanced - she can get used to just about anybody if they stay in her field of vision long enough now).

The mostly unspoken thing in this article is who gets dementia care, and who does the caring. In every dementia unit (and assisted living facility) I toured when picking a place for my parents, I found residents who were more than 95% white, and caregiving and cleaning staff who were at least 75% black, Latinx, or first generation Southeast Asian immigrants.

Who gets the care and who does the caring. My mom is white. Her carers are almost all brown. There are a few white staff - from, as mentioned, a much less educated background than my mother. The starkness of racial inequality in elder care is truly repellent.

I, with my culturally white values, allow my mother to live in an institution. I tell myself she chose it: she chose to buy long-term-care insurance that stipulated residential care. Also, as mentioned, she hates me. But it's a very white thing to leave your elders in the care of strangers. And on the other side of the coin, my mother, because of multigenerational race-based economic inequality, had the education and job and bought a house (in part because her parents were able to buy a house) and basically has the resources ie money to pay someone to take care of her. And the majority of Americans do not.

So that's another part of this story.
posted by latkes at 8:08 PM on October 1, 2018 [21 favorites]

When I moved to Seattle about thirty years ago, my girlfriend and I stayed with her sister in a home-care group home for women with Alzheimer's, where she worked as a live-in aide. The women were in various stages of unravelment. The saddest ones were those that continually relearned that their spose was dead, just looping on where Stanley was until a caregiver would crack. The most entertaining tenant was a lady who had come over from one of the Scandinavian countries some time in the first decade of the twentieth century and worked in, ah, oh, the erotic entertainment field. She was a total hoot.

My wife and I and her family just relocated her mom to a "swanky memory care facility". She's lost most of her English and seems to be entering the aphasic phase, which is sort of good news. She just loops in Spanish on what seems to be a memory of something from her post-toddler days, and when she talks and cannot remember a word she will engage in a spontaneous onomontopeia using Spanish phonemes and hand gestures to describe the event or object or whatnot. She doesn't recognize herself in a mirror ("quien-es, mi mama?") or her husband, and she has a tendency to violence which was one of the determinants for re-situating her - if she pushed him down their stairs, it would be bad news for both of them.

I have no idea how, but she seems to recognize me, despite my ten-inch white beard. She's still in there. Linguistic thought is not the whole of our social and biological identity. I know she's scared and lonely there, and so does the rest of our family, but we couldn't see a better alternative. He was at risk; she was at risk; they see each other every day; she has better access to medical support; and so on. My father in law is beside himself, but also relieved and getting a good night's sleep for the first time in many years.
posted by mwhybark at 9:17 PM on October 1, 2018 [5 favorites]

My father, with dementia, has read this and emailed me to say:

I have now read the narticle and would like to inform any interested parties that I do not wish to be placed in a 1950s themed nursing home.
The above signatory is hereby certified by a competent person as being of sound mind.
posted by paduasoy at 11:22 PM on October 1, 2018 [14 favorites]

My grandmother (who had a variety of physical health problems almost her entire adult life) was never diagnosed with dementia or Alzheimer's, but during the last couple of months of her life she started to display signs of cognitive decline. My mother told me she asked to see her son (who had passed away a few years prior) a few times, and the last time I saw her awake and alert I left unsure of whether she actually knew who I was, which was tough but at least all of this was very close to the end of her life.
posted by The Card Cheat at 6:01 AM on October 2, 2018 [1 favorite]

Thank you so much for sharing this.

I found this quote from a memory care patient remarkable:

Later that month, she was going to turn one hundred, and she was trying to figure out how to think about this strange event. “I mean, that’s ridiculous,” she said cheerfully. “Who lives a hundred years? So I never believed it. If they have a party for me at a hundred, then I’ll be a hundred. I’m not objecting. But I’m not going to stay that way. After all, the year keeps going, and I’ll keep going along with it, and next year’s going to be a hundred and one, and then a hundred and two, and pretty soon I’ll be a hundred and five, and then what are they going to do with me? They’ll put me on a fence post and say, Look at that lovely lady, she lived a hundred and five years and nobody knows why, so we’re trying to find out why. What’s the point in living all that long if you can’t live it? And I don’t think I’ve been living it. I’m just existing. And when the time goes by and I say, Yeah, another year passed, and I’m a hundred and two, a hundred and three, a hundred and four, and then what? What number do I have to reach before something changes? Do I have to go to a hundred and ten, and then be something else? Or what? What’s it all for? That’s the question I’m asking, and I can’t get any answers.”
posted by eirias at 6:44 AM on October 2, 2018 [13 favorites]

Please if I require ‘memory care’ I want a 1960s themed unit with lots of Haight- Ashbury stuff.
I want to smoke all the dope. Vapeing it is ok. Because I get it about fire and old people with dementia, not a good mix. I want to do a few of the things I was too responsible to do as a younger person. Maybe the occasional trip to the zoo to feed some giraffes, if my behavior allows. Lots of music. No news. I’m sure someone out there could figure this out. Probably lots cheaper than the Dutch village.
posted by Katjusa Roquette at 7:15 AM on October 2, 2018 [10 favorites]

My mother in law developed dementia around 2005, though my father in law was (and is) mentally sound. We ended up moving them here to NC in 2007. It took us (me, really) six months to get her diagnosed, declared incompetent, and into an assisted living place for both of them. They were there for two years until she died, the last 6 weeks in the memory care unit, a.k.a., Zombie Ghost Land. The ONLY merciful thing about dementia is that, by the time someone is changing your diaper, you don't know it.

I spent those two years planning my suicide at age 80. She died in 2010, and I am almost over the PTSD. I have no solid plans for suicide, but I have no moral qualms about it. That experience was truly horrifying. Also, if David gets it, into the VA Home he goes. His mom was angry and violent, but weak as a kitten. I'm not having an angry and violent David in the house.
posted by corvikate at 7:41 AM on October 2, 2018 [1 favorite]

Speaking of weed, a lot of people with dementia are using it/having it given to them.

My mom has the angry/terrified flavor of dementia. It's fucking horrible. We finally tried some psych meds because she was miserable and so was everyone around her. They immediately made her incontinent and start falling on the floor. So I said fuck it and tried giving her a high CBD cannabis oil capsule. It made a big difference for a while. I would say at this point it doesn't make that much of a difference and a couple weeks ago we started some new anti-psychotics. If she lived with me I would definitely experiment with higher THC blends and edibles. If it made her happy and less afraid and angry, it would be great. I can't really experiment with ratios and dosing while she's in a facility.

Anecdotally I know at high-end memory care units here in the SF Bay Area, lots of people are being given CBD. I've talked to other people whose parents have dementia and they are informally giving them edibles. The doctors I've talked to about it aren't recommending it but aren't DISrecommending it either.

I don't think cannabis is a miracle drug but I do think we need some studies of cannabis in different formulations and dosing for people with dementia. I would give my consent now for such a study on me, as I'm certain I'm going to go down that road myself, except I plan to kill myself before I get to that point.
posted by latkes at 9:01 AM on October 2, 2018 [5 favorites]

My mother passed in 2013, just a bit too early for me to easily get my hands on edibles for her. I wish I had tried: as it was, she was on serious meds for much of the last few years, and they didn't seem to help her fear and rage much. I wonder if CBD would have helped.
posted by suelac at 9:12 AM on October 2, 2018

They do things like this in my father's nursing home. They play music from the 50s and polkas and have movie nights from the same period, as well as activities where they look at the pictures of stars of the time or talk about the big news events of the day. But my father grew up on the other side of the country and is at least 10 years younger than most of his floor mates. None of these things represents his culture. It just doesn't seem right. Then again, nothing about the situation is.
posted by koucha at 9:58 AM on October 2, 2018 [2 favorites]

I can only comment on this as a carer who works in a dementia ward. To everyone who is going through this with family members - my heart goes out to you. It is a really hard road and as much as there is a lot of shamey discourse (in the UK at least) about how people should "take responsibility" for their family members and not rely on the state to meet care needs, there's very little support for the practicalities of caring for older people - there's less understanding and support than there is for people caring for children, for example, it seems to me. Anyway.

A few things:
- working in a dementia ward can be extremely surreal. People think it's a cruise ship, the bar at the golf course, a hotel, a solicitor's office, and also, uh, a prison... I go with the flow but I also don't feel comfortable outright lying to people. And some people are muddled, but CAN take on board where they are with orientation, particularly if they have a bit of insight ("I've got lewey bodies, you see" someone I cared for used to say)
- mentally returning to the past can be, well, fraught - I've known people who seem to be reliving really traumatic memories, e.g. experiences of war, partners having affairs, death of a child, etc.
- this kind of reminiscence exercise assumes a shared cultural background. Where I work, a lot of things about the care we provide, from the food we serve to the music we play, assume a certain background of our patients - which is an okay bet as 99% of the people we work with are basically white and British. But I think there's a bit of a gap in services for people who aren't, particularly in more multicultural areas.
- I used to be on the fence about assisted suicide. I am not any more. For people who have the capacity to make that decision for themselves I think it should be available. Part of me feels terrible about this - I respect the people I care for and I want to help them live the best life possible. I don't want to be the person looking at someone with dementia and thinking that their life isn't worth living. But having seen how it is up close I dread going through advanced dementia myself.
- I've never judged people who can't take care of their loved ones at home anymore. For a lot people, having a parent or partner moved to a care facility is a difficult, wrenching decision - I've seen people in tears when they're talking about their partner going into a nursing home, even when they're clearly not managing at home themselves. Caring for someone with dementia just isn't like other care responsibilities. I know some people mourn the end of families taking care of their own, but the truth is people live a lot longer now - so a) their children, if they have them, can be in their 50s, 60s; their partners, if they have them, can be in their 70s, 80s, 90s - not a great age to cope with even the physical demands of this kind of care work imho and b) people can live with dementia for a long, long time. You could be talking 10 years of someone getting increasingly dependant, and caring for someone with advanced dementia is more than one person's 24/7 job.

Anyway. I guess I'm not saying anything new, but for everyone who is going through this in any capacity - I'm thinking of you and your loved ones.
posted by the cat's pyjamas at 11:40 AM on October 2, 2018 [14 favorites]

In addition to the issue of race that latkes raises, you can't talk about philosophies of dementia care without talking about the economics of nursing homes and how their administrators are often trying to extract every dollar they can from both residents and caregivers.

Let's say you are me, a long term care nurse, on a bad night. At the nurses
station, a resident with angry, agitated dementia is trying to crawl his way out of his wheelchair and telling the staff "please kill me now." Down the hall, another lady has new onset sudden confusion and you're trying frantically to catheterize her for a urine sample to rule out UTI. (UTIs can present as pure confusion in older adults, with few or no actual urinary symptoms). You may have to send her to the ER by the end of the night, but you're waiting for the OK from the doctor's office to send her out and the doctor is a hack who has million dollar contracts with literally a hundred nursing homes, so it may be a while. Another woman, with the sort of dementia that nurses document as "pleasantly confused," rolls herself up and down the hall talking non-stop about her upcoming trip to the beach. She's probably fine, she wheels in circles like this every night, but you should still keep half an eye on her to make sure she doesn't slip out of the chair or try to get off the unit. Ms. pleasantly confused's roommate, on the other hand, scratches and punches at every nurse and aide who takes care of her. She can't speak to let you know where she's hurting, but she can nearly break fingers on everyone who tries to access her feeding tube. It takes two aides plus a nurse to get her into bed, get her medications into the tube, and start her feeding. The floor should have four aides, but one person called out last minute and the harried supervisor can't find a new one with half an hour's notice, so you're working with three. Every minute that it takes 2/3 of your aides to clean Ms. finger- breaker is a minute that one other participant is sitting in a wet diaper inching toward a pressure ulcer. Meanwhile the phone is ringing off the hook at the nursing station, it's probably the supervisor asking why nobody is done with their documentation, and you can't snap and tell them " it's not done because we're literally cleaning shit," even though the possibility is always tempting. Your best CNA scowls and swears that after one more shift with this kind of physical abuse from patients she's putting in two weeks notice.

In this kind of chaos, who has time to think through the ethics of lying to a resident vs telling them honestly that they're not at the beach? You maintain safety any way that you can, and that often means saying whatever comes to mind to get you out of a sticky situation. I have straight-up told patients that continuing to refuse diaper changes means potentially getting sores that can burrow down to the bone. I have told others that the long-dead parent they're calling out for won't be coming to visit tonight, a sort of truth that hides the tragedy. For others, I play along with whatever happy fantasies they express. It depends on the resident, and how busy the floor is, and my mood, and a million other individual factors that don't fit neatly into one framework or another.

There is no reason everything needs to be this much of a mess. In an ideal world where nursing homes were adequately staffed and workers were fairly compensated there would be time to implement a coherent philosophy of dementia care. In reality, though, owners tend to see their facilities as profit-making machines and keep staffing at the barest possible minimum for the highest possible profit. That gross comment from Dr. Stokes about care workers being "transient types?" That's entirely by design. An RN can earn much more money doing almost any kind of nursing besides long-term care. CNAs go back to school for nursing, or move into more lucrative non-healthcare careers, or their bodies just give out from the physical labor of the job. The fact that most of the direct care staff are non-white just gives the mostly white administrators more leeway to see them as interchangeable cogs. "Swanky" facilities can pay better wages and retain staff for longer times, but of course those aren't accessible to many. (I would love to know whether the facility in the article takes Medicaid patients.)

I always describe the nursing home I work at as one of the most politically "woke" places I've ever been. My co-workers aren't going to rallies or joining activist groups, but everyone knows, deep in their bones, just how exploited they are. Everyone talks openly about the fact that the administration is effectively leaving people to die by neglect. There is universal disgust at for-profit healthcare and insurance companies. We all want to care so much more effectively than we are able to under current conditions. Socialist organizers, take note; come talk to the staff at your local nursing homes about workers rights and Medicare for all. This is the current face of your idealized working class.
posted by I am a Sock, I am an Island at 12:34 PM on October 2, 2018 [26 favorites]

When my grandfather was (is it "having dementia" or "demented"?) and would ask to go "home" my grandmother would lead him out to the car and drive around for awhile then go back home and tell him they were home.
posted by bendy at 10:31 PM on October 3, 2018

Another care home for those with dementia which has an environment imitating that of the residents' youth, this time in the UK: Nursing home lets people with dementia live down memory lane. Lauded by the CQC (Care Quality Commission).
posted by vincebowdren at 10:33 AM on October 6, 2018 [1 favorite]

This article has been staying with me a while because I work in the world of dementia and dementia care. The questions this article raises about the "fictions" employed are common; we debate all the time as to when various approaches to issues that come up in dementia care cross lines into being unethical.

From where I sit, one of the big considerations is around quality of life - in the absence of any kind of effective treatment or cure, it's really all we have. So employing strategies that increase people's quality of life and comfort - be they physical environments that are familiar, favorite foods, music, etc., are generally positive approaches. Responding to someone's emotional needs is a part of good care. The way I've learned to look at it is on a 2x2 matrix in terms of interpersonal warmth & skill competence, which I'm sure was developed as part of somebody's master's thesis at some point:

low empathy/warmth & low competency - abusive/neglectful care
high empathy/warmth & low competency - "helping" (basically, this care treats the person in need as an infant/child)
low empathy/warmth & high competency - manipulative
high empathy/warmth & high competency - relationship focused, high quality care

What we're aiming for is the 4th quadrant, obviously. What the article is worried about is the 3rd type -knowledge being used to manipulate the moods and emotional states of people with dementia. At the 4th quadrant, the environment and the staff approach are to engage people with dementia and their personal backgrounds to develop care settings that promote them being involved and participatory, to focus on remaining abilities and to work to involve those strengths. It becomes about the personal engagement and relationship.

Anyways, like I said I've been ruminating on this article for a bit, and that's where I landed. It's hard to get this right - as I am a Sock, I am an Island has noted above, the system level approach to care is not conducive to allowing the time and the resources needed for the relationship focus to happen, nor is it always the priority in a given moment where safety concerns for everyone need to be addressed. Most of the people who work in care settings have a schedule that basically allots them so many minutes per task per person per day; it is not easily changed or accommodating of the care needs of someone with dementia. As another example, we know one of the good practices in dementia care is to ensure that the same staff groups work with the same residents consistently - but this is hard to achieve in a world where funding models encourage the use of part time and casual staff, and where workforce expectations are for regular rotations of duties.

Sorry to revive a dead thread.
posted by nubs at 9:16 AM on October 23, 2018 [3 favorites]