In-home vs. facility care: Good science and how our group made a difference

Tony484

You may remember that I came across an online article from Johns Hopkins University that was primarily focused on in-home care, and it included the following statements: "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."

I was surprised by these claims and attempted, without success, to find research that supported relationships between in-home care and one’s quality of life and longevity. Given the number of academics in this group as well as my overall skepticism that these relationships had been well documented, I reported these claims here and asked for assistance with a more thorough literature review. Many members of our spousal/partners group were upset by the claims, and responded to my post in no uncertain terms. I said that I would contact the researchers at Johns Hopkins and ask about the basis of these claims that in-home care resulted in a happier and longer life. I also included some of your anonymous responses in my communications with the Hopkins researchers.

It took some time for me to identify and communicate with the appropriate researchers, who were very responsive as well as concerned that their article only contain information that could be well substantiated.  Consequently, they revised the article and removed the earlier version’s claims about quality of life and longevity. 

I see this as an excellent example of good science, in which mistakes can be made, but when discovered, they are quickly admitted to and corrected.  I also see this as an example of the productive advocacy of our spousal/partners group. Below is an email I received from Dr. Quincy Samus at Johns Hopkins.  In case the link that Dr. Samus sent me is not live here, you can find the revised article at the address I pasted into Dr. Samus’s email.

Dear David,

I wanted to provide an update regarding your concerns related to the Johns Hopkins article you cite below.  The article has now been updated, which I think better reflects the research cited and the spirit of our overall perspective and approach to family-centered dementia care.  Thank you for bringing this to our attention, for your patience with getting this resolved, and for your advocacy for caregivers, families and those living with cognitive conditions.

 Please find the article here:  Dementia Care  

 [ https://www.hopkinsmedicine.org/health/wellness-and-prevention/safe-and-happy-at-home ]

Please let me know if you have any other concerns or questions.  Best wishes to you and your family as you continue to navigate this issue as well.

Sincerely

Quincy

jfkoc

David....thank you for the update and thank you for going the extra mile.

Comment; wish that we all lived somewhere  that there were dementia care specialists.

Suzzin

I'm sorry, but these kinds of articles are so frustrating. First of all, it's such a simplistic and superficial review. Yes, many of us would like to keep our loved ones at home, either their home or if necessary in ours. But many of us, for a wide variety of reasons, can't or won't do that. These articles just serve to pile on the guilt. "It's so easy! Just add a grab bar in the toilet, and, hey, make sure you schedule plenty of rest and relaxation for yourself!" It's so, so, so much more complicated than that.

Iris L.

Bravo for your advocacy, David!  You confronted the academics with reality.  I truly believe they fabricate a good deal of their publishings.

Iris

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M1

Bravo Tony, you made a real difference.  That's a much more balanced statement, for what it's worth.  I agree with Suzzin that a lot of such articles are too simplistic and superficial regardless, but I applaud you for making the effort, and Johns Hopkins for responding.  A lot of people read what Johns Hopkins has to say, to this one may matter more than others.