Home care vs facility care -- What is the basis of this Johns Hopkins claim that home care is better

Tony484

A non-research article on the Johns Hopkins site, https://www.hopkinsmedicine.org/health/wellness-and-prevention/safe-and-happy-at-home states that "Research shows keeping a loved one with dementia at home helps them be happier and live longer" and similarly that "Of the 5.8 million people in the United States who have Alzheimer’s disease and other types of dementia, many remain at home, an option that’s been shown to help them stay healthier and happier and live longer."

Does anyone here happen to know the basis of this claim? I've been searching but haven't found anything very relevant. Thanks very much.  

Stuck in the middle

No idea.  Sounds to me like a general statement that may be true of some, but not nearly all, PWDs.

Joydean

My opinion only. I honestly doubt who ever wrote this article has ever taken care of a pwda 24/7 !

jmlarue

No clue what study they are making that sweeping generalization on. I haven't read the article and won't. Not worth my time. I can just about bet you that there will be no mention at all about the 30% of caregivers who die before their PWD. Did you see anything written about the even higher percentage who suffer chronic illness like depression and auto-immune disorders caused by the stress of caregiving? Probably not. Articles like this are hurtful. It builds a false narrative that every PWD will be less cared for, less happy, and die sooner if not kept in their home to end of life. That's one heck of a guilt trip to lay on spouses or family members who've placed their LO in congregate care because they've been pushed to the brink of mental, emotional, and physical exhaustion. This is just wrong.

Quilting brings calm

I agree with Jmlarue.   It’s not practical or even possible for all PWD to remain at home.  This is just a guilt trip done by someone with an agenda. File it right next to the study that says to breastfeed until age 2, or that children are happier with stay at home moms, or that vaccines cause autism. 

jfkoc

Read it. 

Unfortunately we do not all live in Baltimore or the dream world imagined. 

Ed1937

jmlarue wrote:

That's one heck of a guilt trip to lay on spouses or family members who've placed their LO in congregate care because they've been pushed to the brink of mental, emotional, and physical exhaustion. This is just wrong.

Perfectly said.

 

saltom

I have also heard anecdotal reports that many dementia patients do better in a care facility where there are more activities and structured routine.

Tony484

They are flogging their own work, which may be good work in terms of model development, but they certainly don't seem to address many of the issues discussed on this board. But the whole story line seems based on a "home is better" assumption which they say research supports, but where is that research?  On further reading, it almost looks like the Hopkins "article" is a ghost-written PR piece by non-experts.  What expert would say, without attribution or further elaboration, that "research shows" that home care increases longevity. I am a primary at-home caregiver who is now well into the ugly middle stages, with very high levels of support, and I could sure do without a "professional" guilt trip that if I can no longer provide in-home care, for whatever reason, research shows that I will probably not only harm my DW's happiness but will also probably kill her off early. The article does throw the bone that home care may not always be possible, but the brief mention of assisted living, nursing homes etc. as alternatives is introduced by reiterating that "Research shows keeping a loved one with dementia at home helps them be happier and live longer."

John1965

This article makes me angry. It’s hard to believe that JH has allowed its name to be associated with such a fluff piece of “research.” There’s no mention of the author of the article, only two “featured experts.”  After a cursory view of their biographies after a Google search,  a reasonable person could infer that they are biased zealots. My cynical side wonders if there is an “influencer” fee being paid by the likes of “Home Instead.”  What a business model! Charge clients (or insurance) $32/hour and pay minimum wage to helpers who come to your  home. My LO would benefit more from the structure and (hopefully) relatively stable staff at a care facility than by random strangers coming to our home. I saw in home agency workers in action when my octogenarian in-laws needed help. They didn’t have dementia, but rather heart and mobility issues. Over a month’s time, at least eight different aides showed up for daily six hour shifts. Some were decent, others pretty bad. Having strangers in the house was disconcerting for my in-laws. I can see it being even worse for my cognitively impaired LO.

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Stuck in the middle

I could be pretty upbeat and positive in Downton Abbey, with 50 servants for one family.  Ring a little bell and a maid runs in to sit on the toilet and warm it for me, while another carries in my Reader's Digest on a silver tray.  Someone else is caring for DW, of course.

Here in the real world, I let DS eat in my car the other day, so I was out there cleaning it up so it didn't smell like a garbage can.  That's the chauffer's job, but . . .

Joe C.

I can attest that DW is much happier & engaged in MC than she was at home. I could take care of all her personal needs but I didn’t have the time or the energy to be an activities director as well. A few years ago I heard an interview with a PhD in Phycology who spent her career in the dementia field who said she had no idea how difficult the job of a caregiver was until she became the caregiver for her mother.

Faith,Hope,Love

I think whoever wrote this article should spend a couple of days with one of us, or with anyone who's giving 24/7 care for someone.

Twenty years ago, my FIL was undergoing cancer treatments.  My DH was the primary care giver at the time.   During an appointment with the oncologist, she looked at my DH and said to him you look exhausted.  Then she said this.  My aunt had cancer and my husband, and I thought we could care for her.  I'm a doctor and he's a paramedic.  We thought we were prepared for something like this.  In no time at all, we were totally exhausted and couldn't do it.  We had to bring in additional care.

Jo C.

I read it - I can see where there is some quite unfortunate superficial sounding writing that does not seem to be reality based and far too over-simplified - misses the mark.   They are doing their best from their point of view which is actually leading into the real message:  Johns Hopkins fee based programs.  Perhaps a new venture for them? 

 I read more by clicking on those little blue direct links and some other links to discover - Johns Hopkins has created some special fee based service programs.  In other words; it appears that Hopkins has a for-profit product to sell.    I wonder if they waive fees for the services if one has not got the funds or if their state Medicaid picks up all funds; my guess is probably not as there are aides and transport drivers, etc. who must be paid as well as other staff and administrative costs.

One such program provides AT COST services in the home and more for pwd.  It also seems that the product may have different costs for different services in their menu of choices from a group of said services.  Scroll down this link until you see the blue hyperlink for "personal care services,"  click on that and it will describe the specific services available. 

https://www.hopkinsmedicine.org/home-care-group/care-services/personal-care/memory-care.html

An idea came to mind.  If you feel strongly about the article AFTER you read the entire article and links, then it would perhaps be helpful to those at Johns Hopkins to get some input from experienced caregivers. Not scathing put downs, but honest experienced constructive input from those, "who know" and who are living it.   Anyone can be enlightened and it may be quite helpful for them to become so and take a new and more reality and empathy based approach that is not so superficial that it sets caregiver's teeth on edge.

Paris20

I agree that spending time with a caregiver might change the dynamic of this report. My husband with Alzheimer’s lived at home until he had a stroke. There was no way I could take care of him at home, even with help, because he was paralyzed on his right side. He needs strong caregivers and massive amounts of assistance.

What really bothers me is that so much of what I read about dementia focuses only on the PWD and the caregiver gets lip service at best. I am not a martyr and I don’t like to feel guilty, yet there have been times when I have experienced those awful feelings that caregivers get, e.g. «I’m not doing enough.» I have learned not to listen to well-intentioned but ignorant people who have no idea how truly awful dementia is.

Hoot619

Amen to all that answered this. Hoot

Rescue mom

This is interesting, and not in a good way. I think many of us expect different/better from JHopkins—which does indeed, as Jo points out,  appear to sell its own home help service.

 So the “research” (or content)  cited by the OP is little more than an ad/PR, in my view. There was also a line at the bottom of the JH home care service info, about how they don’t take insurances to pay for it, but their cost “may be offset” by delaying admission to a costly facility. (Eyebrows raised here). 

The real downside it that now I’ll have more questions about other things they promote. Do they have financial interest in (that) too?

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Lills

Paris20 wrote:  "I am not a martyr and I don’t like to feel guilty, yet there have been times when I have experienced those awful feelings that caregivers get, e.g. «I’m not doing enough.» 

Trust me...I chose to care for my DH at home and I STILL felt guilty.  I, too, felt there were times (every day!) when I experienced those awful feelings that I'm not doing enough.  I still sometimes wonder if I should have placed DH.  

Stage 5-6 was the hardest for me to care for DH at home.  He was at the stage where he still wanted to do things but everything he touched, he broke or ruined.  He was incontinent and he had to be watched so he wouldn't wander.  If we went out (post office, grocery store), he'd bolt after 5 minutes.  That was a very challenging time!

My point is that ANY choice, whether to place or keep LO's home, is awful and brings different challenges.  Every choice is the right choice.  

Stage 7 brought new challenges; he was 100% bedbound.  To me, this stage was hard because I was trying to keep him occupied--not an easy feat.  I highly doubt DH lived longer because I was caring for him at home.  

Stage 8 is the absolute hardest.....Pain like no other!   And....even though I did my best, I still feel regret and guilt.  IMO:  It's not possible to quantify if home care or facility is better. 

Iris L.

My immediate thought on reading was that this is a marketing strategy for a home care company, sort of like APFM.  Of course, they are going to puff up their work.  They're selling home care!  I don't take it more seriously than I take other types of advertising or marketing.

Iris

Ed1937

Lills wrote:

Stage 8 is the absolute hardest.....Pain like no other!   And....even though I did my best, I still feel regret and guilt.  IMO:  It's not possible to quantify if home care or facility is better. 

For me, stage 8 is by far the hardest. I go to bed when I want, get up when I want, go out when I want, etc. There is nobody to please but me. I hate it. 

And I agree that it's not possible to say one is better than the other. And for everyone concerned, or just the PWD? There are just too many variables.

It seems to me that Johns Hopkins needs better PR. Or maybe the name is too big to worry about that?

Tony484

I think I've found the primary source of the claims made in the Hopkins piece, available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034346/  There may be other sources though.  I won't have time to read it carefully for awhile, though it appears that, in this study at least, all research participants were home dwelling, with no actual comparison with those in congregate living facilities. It is Hopkins research, and I agree that the piece on the Hopkins site was probably the result of the Hopkins PR machine.  If true, the Pollyanna-ish piece that  is what most caregivers probably see is a real disservice to those of us who have to make the incredibly difficult decision about placement. I'm going to try to contact the first author and ask about the sources of the PR-type claim.

jfkoc

Tony...please share what you find out

HollyBerry

I was thinking the same as others - this is part of the justification for insurance and medicare not paying for residential care.  If they can convince someone that we should all be keeping our family members at home and hiring help, "keeping them out of expensive long term care," then aren't we all just saints for saving the insurance companies some money??  so totally messed up.  But what's really messed up - REALLY, really messed up - is that in my city, I have faith that there will be good residential options when the time comes.  And for many of you, I hear that those options just don't exist and even when they do exist, they aren't within reach of many people.  That's what's messed up, and "research" shared by respected universities isn't helping clean up the mess.

Tony484

jfkoc etc al.  I will report in.  I started with the first author and what I think is a polite request for information/explanation.  Until I hear from someone, I'll work my way through the authors, starting with the MD who is both the second author of the research article and is one of the two listed as "Featured Experts" in the Hopkins piece with no authors. I haven't found a direct link to the research article, which I got through interlibrary loan, but if anyone wants a copy, email me a note at [email protected] and I'll send you one.  I've only been able to skim the paper a couple of times, but so far all I can tell is that it is solely a study of people living at home and compares people who receive a lot of support services from their program with those who don't.

Old89

I agree with everything said here and would add that after 3.5 years home caregiving was killing me.  My health has deteriorated significantly despite, therapy, support groups, reading book after book and reading this forum and eventually hiring an 8 hour a day caregiver.  Maybe I am just not emotionally suited to the role.  My wife did ok but I could see I would not make it to the end and that did her no good.  We are our second month in a continuing care facility.   I am fortunate we can afford two apartments one independent, one assisted.    The final straw for me was when my wife of 48 years started believing I was her brother and it was not right for us to live in the same house.  She is thriving.   She is happier than I have seen her in years.  I know not everyone will have this experience, but my point is that an article that suggests everyone is better at home is an over generalization.  People are different, couples are different, facilities are different.  I cannot hire a yoga instructor, art instructor,  water aerobics instructor, weekly live music happy hour, scrabble tournament, or throw monthly theme parties and have self enrichment and history lectures.  She is living her best life right now and I am grateful I could this option.  Neither of us was happy at home looking at each other and having the same meaningless "conversations" several times a day.  These distractions are very constructive.

Hoot619

When I read it all I could think of -If the hospital couldn't get you in and get your money than they could get in your home and take it.