Frail Seniors Find Ways To Live Independently

Yves here. This program to help “seniors” stay in their homes and out of high-cost nursing homes and retirement facilities is high impact and inexpensive. It’s also the sort of program that demonstrates that there is plenty of important community work that a Job Guarantee could fund.

By Judith Graham. Originally published at Kaiser Health News

DENVER — Pauline Jeffery had let things slide since her husband died. Her bedroom was a mess. Her bathroom was disorganized. She often tripped over rugs in her living and dining room.

“I was depressed and doing nothing but feeling sorry for myself,” said the 85-year-old Denver resident.

But Jeffery’s inertia faded when she joined a program for frail low-income seniors: Community Aging in Place — Advancing Better Living for Elders (CAPABLE). Over the course of several months last year, an occupational therapist visited Jeffery and discussed issues she wanted to address. A handyman installed a new carpet. A visiting nurse gave her the feeling of being looked after.

In short order, Jeffery organized her bedroom, cleaned up her bathroom and began to feel more upbeat. “There’s a lot of people like myself that just need a push and somebody to make them feel like they’re worth something,” she said. “What they did for me, it got me motivated.”

New research shows that CAPABLE provides considerable help to vulnerable seniors who have trouble with “activities of daily living” — taking a shower or a bath, getting dressed, transferring in and out of bed, using the toilet or moving around easily at home. Over the course of five months, participants in the program experienced 30 percent fewer difficulties with such activities, according to a randomized clinical trial — the gold standard of research — published this month in JAMA Internal Medicine.

“If someone found a drug that reduced disability in older adults by 30 percent, we’d be hearing about it on TV constantly,” said John Haaga, director of the Division of Behavioral and Social Research at the National Institute on Aging, which provided funding for the research.

Positive findings are especially notable given the population that was studied: 300 poor or near-poor older adults, nearly 90 percent women, over 80 percent black, with an average age of 75 and multiple chronic medical conditions such as heart disease, arthritis and chronic obstructive pulmonary disease. While about 1 in 3 older adults in the U.S. need help with one or more daily activities, rates of disability and related health care costs are higher in this challenged population.

Half of the older adults in the trial received the CAPABLE intervention, which includes six visits by an occupational therapist, four visits by a registered nurse, and home repair and modification services worth up to $1,300. The control group received 10 visits of equal length from a research assistant and were encouraged to use the internet, listen to music, play board games or reminisce about the past, among other activities.

Both groups experienced improvements at five months, but older adults who participated in CAPABLE realized substantially greater benefits. Eighty-two percent strongly agreed that the program made their life easier and their home safer. Nearly 80 percent said it enabled them to live at home and increased their confidence in managing daily challenges.

Sarah Szanton, who developed CAPABLE and directs the Center for Innovative Care in Aging at the Johns Hopkins School of Nursing, attributes positive results to several program elements. Instead of telling an older adult what’s wrong with them, a mainstay of medical practice, CAPABLE staff ask older adults what they’d like to be able to do but can’t do now.

Seniors often say they want to cook meals for themselves, make their beds, use the stairs, get out of the house more easily, walk around without pain or go to church.

The focus then turns to finding practical solutions. For someone who wants to cook but whose legs are weak, that could mean cutting vegetables while sitting down before standing up at the stove. A bed may need to be lifted on risers and a grab bar positioned between the mattress and box spring so a person can push herself up to a standing position more easily. Or, a nurse may need to go over medications and recommend potential changes to a person’s primary care doctor.

“Why does it work? Because we’re guided by what people want, and in order to get better, you have to want to get better: It has to be important to you,” said Amanda Goodenow, program manager for CAPABLE at the Colorado Visiting Nurse Association, the agency that assisted Jeffery. In Colorado, CAPABLE has been funded by a local foundation and Habitat for Humanity, which supports the program in six markets.

Hattie Ashby, 90, who has lived in the same two-story house in Aurora, a city adjacent to Denver, for 43 years, told Goodenow last summer that she wanted to get up and down the stairs more easily and walk around outside the house. Ashby has high blood pressure and COPD.

“They gave me a walker and made arrangements for me to put my oxygen tank on it so I could go to the mall,” she said, recalling some of what the CAPABLE staff did. “They fixed the wall in my bathroom and put something I could hold onto to get in and out of my bathtub. And going up and down my stairs, they put another rail on the wall where I would be able to hold onto.”

“It is a remarkable service for a senior citizen to be encouraged, to be helped, to be supported that way,” Ashby said.

It also turns out to be a cost-effective investment. For every dollar spent on CAPABLE, nearly $10 in combined savings accrues to Medicare and Medicaid, largely because of hospitalizations and nursing home placements that are prevented, research by Szanton and others has shown. (Many CAPABLE participants are eligible for both government health insurance programs because of their low incomes.) The average program cost per person is $2,825, far below the average $7,441 monthly cost of a semiprivate room in a nursing home in 2018.

With a new grant of nearly $3 million from the Rita & Alex Hillman Foundation, Szanton is turning her attention to expanding CAPABLE across the country. Currently, the program is available at 26 locations in 12 states, and Medicaid programs in Massachusetts and Michigan have adopted a version of it for some members. A major challenge is securing funding, since public and private insurers don’t typically pay for these kinds of services. So far, foundation and grant funding has been a major source of support.

Szanton hopes to persuade Medicare Advantage plans, which cover about 19 million Medicare recipients and can now offer an array of nonmedical benefits to members, to adopt CAPABLE. Also, Johns Hopkins and Stanford Medicine have submitted a proposal to have traditional Medicare offer the program as a bundled package of services. Accountable care organizations, groups of hospitals and physicians that assume financial risk for the health of their patients, are also interested, given the potential benefits and cost savings.

Another priority will be looking at how to extend CAPABLE’s impact over time. Since benefits diminished over a 12-month period in the just-published clinical trial, additional program elements — phone calls, extra visits and follow-up assessments — will probably be needed, said Dr. Kenneth Covinsky, a professor of geriatrics at the University of California-San Francisco and co-author of an editorial on CAPABLE that accompanied the study.

He’s bullish on CAPABLE’s prospects. “As clinicians, when we see older patients with conditions we can’t reverse, we need to understand we haven’t run out of things we can do,” Covinsky said. “Referring patients to a program like CAPABLE is something that could make a big difference.”

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56 comments

      1. Wukchumni

        There’s a waiting list to get into my mom’s assisted living place, as they cater to those that bought a home in LA in 1965 for $23k that’s now worth a million. If my mom lives to be 100, they will effectively have gotten every last Cent that she received for it, when selling.

        And the assisted living place where she lives is a bit of a freak, in that most every other one requires you to buy an apartment for around $400k, while she’s on a month to month lease.

        One thing about caring for elders though, the turnover of staff where she lives is something to behold, they must’ve gone through from 6 to a dozen different people in each position in 3 years since she’s been there.

        Reply
        1. marieann

          My sister in law in the US is in an assisted living care home. It costs $4,000 per month. It is a beautiful place and she gets excellent care. She could no longer manage at home because of dementia problems.
          I think it is well worth the money, care doesn’t come cheap. I hope her investments and the sale of her home last, if not we will all be chipping in to keep her well looked after.

          Here in Ontario we have had lots of stories in the newspapers recently about the poor care given to the seniors in the nursing homes…..the staffing is a big problem-as in not enough.

          I worked in a hospital and know that many people can manage well with a bit of help. Here that help is hard to come by, I’m glad to see this programme working out.

          Reply
          1. Shonde

            If you know someone who needs in home help, maybe you can ask on NC who wants to emigrate to Canada? I looked into Canadian immigration when I was considering my move from CA. I did not fit the multitudes of categories that would have allowed me to do so and ended up back in Minnesota where my family mostly resides. However, one category that would have fit for me was if I had potential employment in Canada, if I am remembering correctly.
            From my long term reading of NC comments, gotta feeling lots of us would love to move across the border.

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          2. crittermom

            > It costs $4,000 per month… I think it is well worth the money, care doesn’t come cheap.

            When studies have shown that many people in this country can’t afford a $400 emergency, that means most certainly can’t afford $4,000 month.

            > I hope her investments and the sale of her home last, if not we will all be chipping in to keep her well looked after.

            Not all elderly have investments & the sale of a home to provide for their care @ $4,000 mth, nor do all have family who can afford such (note my first point).

            I’m very happy to hear your mother is able to afford such good care & obviously has children who are willing to chip in if need be.

            This program appears to provide a solution for those who can’t afford the assisted living alternatives that are currently available, yet unaffordable to so many.

            It sounds like an excellent, common sense program from this article.

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            1. marieann

              Yes I do know that not many folk have money to pay those fees.It is my sister in law not my mother.

              My grandmother in Scotland was in a good care home for the last few years of her life, she had many grandchildren that helped with fees.

              That is why I think this new programme is such a good idea. Even here in Canada the elderly get poor care because of finances.

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              1. crittermom

                I’m sorry! I don’t know why I had ‘mother’ stuck in my head when typing.

                The cost of care is horrifying, so I’m in total agreement that this program is a good idea, in addition to the fact it’s actually improved care, as well, with interaction & ways to help them take care of themselves while remaining in their own home.

                The part in the article that really stood out to me was this: “For every dollar spent on CAPABLE, nearly $10 in combined savings accrues to Medicare and Medicaid…”
                That’s huge so will hopefully get more attention due to the savings.

                With things gearing up for the next election, maybe someone we can stomach to vote for will adopt this way of thinking so more states (or better, all) will offer it?

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          3. Carla

            @marieann — would you mind sharing the city and state where your sister-in-law’s assisted living facility is located? $4,000 a month sounds extraordinarily low to me. As the article above states, nursing home care averages over $7,000 a month nationally, and assisted living does not cost much less, especially for dementia care.

            And yes, the CAPABLE program looks promising. What a novel idea: asking people what they want. Who’d a thunk it?

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            1. Clive

              I agree. I helped my mother in law sort out some short term respite care for a friend with either distant or (it has to be said) couldn’t really give a stuff local family. We ended up having her friend stay in a £1,500 / week place near where my mother in law lives (c. $2,000 / week) and it was a nice enough facility with long-serving and experienced, caring staff — but no more than adequate.

              I wouldn’t have checked her cat into the sub $1,000-1,500 / week equivalent places we looked over.

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            2. marieann

              She is in Jackson Michigan.
              This is assisted living, I think the nursing home part is more expensive, I suppose she will have to move to higher levels of care eventually.
              She does have many medical issues also…old age did not smile kindly on her, she is 86 now.

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            3. ArcadiaMommy

              Our grandmother had to pay several hundred thousand dollars up front in addition to the monthly $3500 fee for her assisted living place in Palm Springs (small 2 BR place). It was quite fancy with many amenities and it was good for her socially as she lived to be 99 but it was just over the top. Unfortunately when she needed a high level of care after she fell and broke multiple bones they could not provide it and she was basically kicked out to a rehabilitation facility that also couldn’t really care for her. It was heartbreaking. My boys saw what happened to her and they know to give me the pillow if I am in that condition. At least I hope they will.

              Reply
          4. Yves Smith Post author

            I don’t know how you have a place that is $4K a month. In Alabama, officially now the poorest state in the US, assisted living in a facility that gets only 2 Medicare stars but no deposit required is $5K a month.

            And this story isn’t about dementia patients. It’s about people who are cognitively OK but feeble.

            Reply
            1. marieann

              She has many medical problems that started when she was 65 and had a stroke, so she managed in her home for 20 years. Her confusion came over time as her health deteriorated, and she could have probably managed by herself for a few more years if her physical health had been strong but together they wore her down.

              A programme like the one mentioned probably could have given her a few more years at home.

              Moving her to a facility, I think, caused a lot of the increase in confusion…..such choices we have to make, and so hard for her children.

              I don’t know about the average prices of care in the US, I just know the price of this one.
              I don’t even know the average price in Canada and whether or not we will be able to afford it when the time comes.

              Actually I thought it was $5000 but my husband told me it was $4000

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            2. kareninca

              I have a relative in MI (in the Holland area) and from hearing about her experiences with her mother in law’s care and her own volunteering activities, I’ve gotten the impression that the prices in that region are remarkably low. And that the care is good. It is actually an area that I had already planned to keep in mind for the future, when I’m disgorged by California.

              Reply
        2. lordkoos

          Employee turnover is high in that business – the work can be back-breaking, dealing with the residents can be difficult, and the pay is low.

          Reply
          1. Carla

            I think the management of most places leaves a great deal to be desired also — and that can contribute to high turnover as well.

            Reply
              1. kiwi

                They are in for profit as much as anyone else. And non-profit status does not change the entitys’ greed.

                The greed heads see all these people from the ’40s and ’50s who managed to build assets, so naturally, the greedheads must suck as much of it up as they can.

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          2. ArcadiaMommy

            Yes it is. Just awfully hard, draining work. Maybe you can sort of get used to it but it broke my heart, the little bit of helping I did with our sweet granny.
            Another thing I noticed is that most of the caregivers were quite surprised to see family helping with the day-to-day care (changing linens, changing diapers, bathing, feeding, reading to her, basic grooming, holding hands, etc.). And I get most people don’t have the time to manage this.

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            1. Amfortas the Hippie

              aye. my experience working in a couple of nursing homes is 20 years old…but yes. management sucked, and the suits that would swoop in from time to time were even worse.
              I was a cook, and it was easy work, so i didn’t expect to get rich…but the nurses and especially the aids were underpaid and overworked and generally treated like crap by the bosses.
              patients suffered as a result.
              old folks are hard to manage sometimes…especially when they have “cognitive difficulties”. One of the places I cooked in was specifically for the crazy and demented…not for humanitarian reasons or to better their care…but to separate them from the other, more manageable patients.
              the aids in that place should have been making ten times what they were paid.
              bunch of naked escape artists and poo sculptors.
              most heartbreaking job i ever had.

              Reply
            2. ChiGal in Carolina

              Coming very late to this thread but just wanted to add it is very important if at all possible for family to “partner” with the underpaid and overworked front line staff at any facility.

              They will appreciate the help and it also conveys that you don’t feel you are “too good” to do the work they do, which is generally so looked down upon by society.

              As a result they will take better care of your family member. It’s a win-win.

              Reply
      2. JohnnySacks

        Heck, they only build them in areas where (e.g. via Fidelity 401K/brokerage account heat maps) indicate that there’s plenty of investments to strip. I’m also assuming if you outlive any housing equity, savings, and investments you may have had the fortunate situation to build up over a lifetime, they’ll (essentially) dump you on the curb.

        One of the main problems with in home care is theft, so I assume part of the assessment is to inform family to lock up checks, credit cards, cash, jewelry, etc. (grift all the way down the food chain)

        Reply
        1. Shonde

          You are right about the in home theft. After my husband died, I started to fix up the house and discovered one male caretaker had cleaned out all the good tools in the garage. I know which one it was but alas no direct proof other than sightings reported by neighbors. So if possible, install a camera(s) to watch the home anytime you are not available when a caretaker is present. It is difficult to say what someone might find valuable (tools??) so best to watch over everything.
          Most caretakers are honest but some, just like the general population, leave much to be desired. Also, once you find out what the agencies are paying the caretakers, you sometimes have to accept that folks might occasionally need something to hock just to pay rent.
          Unless you have home insurance coverage, best to go through agencies since caretaker work can lead to back issues and more. Once had a good one who unfortunately tripped over my dog and hurt her knee. I was glad the agency had to cover the disability.

          Reply
  1. katiebird

    Thank you for this post!

    A year and a half ago both my parents fell (the same weekend!) ending up in wheelchairs, making their split level house totally unlivable for them. Even once we found a more or less perfect apartment for them, they just couldn’t do things they way they alway had.

    Because of Mom’s health issues she qualified for home health and that came with some occupational therapy. I kept hoping that the therapist could help with some of the things covered by the CAPABLE program, but it didn’t really. And of course, it didn’t help my father at all (that is a long story)

    The thing I have noticed these last months, is my vast ignorance of what is available for people in their situation. So any posts about options for aging is really important to me. Thanks again!!

    PS. Does anyone here use or know about T-coil and Loop technology? I am wondering if it would/could help my mom hear people on the phone (assuming we get her a hearing aid with the t-coil)

    Reply
    1. Shonde

      For hearing problems: Check out the Clarity Professional XLC3.4 phone. When I lived in CA until recently, a free program provided these phones (plus others) to anyone who was medically diagnosed with a hearing problem. There was no income qualification in CA so if your mom lives in CA find out about this program.
      I purchased my own phone when I knew I was leaving CA and they are available on the internet without a prescription. This phone works great for me without a hearing aide and yet works well with a hearing aide also.

      Reply
    2. Shonde

      BTW, if your dad is a veteran, get him into the VA healthcare program pronto since the VA not only can help with OC and PT but also has a visiting nurse program all without income restrictions.

      Reply
      1. katiebird

        Thank you…. that is exactly what I mean about my ignorance. Dad died last May and we never knew about VA benefits for him. I wish I had known.

        Reply
        1. roxan

          I think the Vets also provide home care for widows of Vets. I don’t know if that program still exists, but worth looking into.
          Home care agencies charge a lot of money, and many require the patient to sign a contract to pay for several months of care whether they need it or not. They used to charge at least $25 an hour (it may be more now) and paid the caretakers under $10 an hour. That usually includes just light housekeeping, maybe some minimal cooking and shopping, as well as personal help such as bathing, toileting and dressing. Medicare pays for very little home help, and it’s limited to help with bathing & dressing. I could not find anyone who would actually cook for my mother, or even heat up pre-cooked items in the microwave.

          Reply
  2. pretzelattack

    this is a great program! as something like this is in my not too distant future, i’m very glad to know about it.

    Reply
  3. sd

    We are caring for an aging parent at home and pay for a senior helper twice a week – 4 hours on one day and 8 hours on the second – an expense covered by my brother and I. It helps with doctors visits, trips to the mall, grocery shopping, getting to a haircut, etc. One of the biggest benefits is the social engagement provides a huge boost in overall morale and energy. The boost from the helper lasts about 2 days.

    So reading about this study, one of the things that struck me was the social stimulation the program provided, from the handyman to the occupational therapist. Those engagements would provide an enormous boost to morale beyond just the service provided.

    We have a tidal wave of aging baby boomers coming and we are no way prepared to handle it.

    Reply
    1. Shonde

      If you and your brother have to cover the expense of a caretaker, that could mean your parent is not able to pay for it. That might indicate your parent could qualify for some county or state programs which provide in home help in many areas.
      I am only familiar with MN and CA both of which have income qualification programs but I am sure many other states also have them. Unfortunately (or maybe fortunately??), we never qualified for any programs like this but know the services provided in many areas are extensive.
      Save your money for special things to brighten your parent’s day or use it to rehab the home to make it more aged friendly.

      Reply
      1. sd

        Income qualification is based on total household income. My spouse and I both work, the only way we have found to make this work for all involved is with a helper.

        Reply
    2. shinola

      “We have a tidal wave of aging baby boomers coming and we are no way prepared to handle it.”

      Something this boomer has noticed in my area (‘burbs of Kansas City) is some former schools that were at full capacity when my siblings & I attended have been closed down. 2 former Jr. High’s (middle schools) have been torn down & “senior living facilities” built in their place.

      I wonder what these new facilities will become when the boomer “bulge” starts thinning out in 20 years or so.

      Reply
  4. dyu

    This is a really nice program that shows it is the human element which increases resilience. Much too often we hear how addressing these kinds of societal challenges requires the development and deployment of complex, internet-connected, monitoring/surveillance technology, which does not actually work and is just a money-making scheme for tech. Though, I have always wondered if there is a middle ground (or perhaps is there even a need for a middle ground?).

    Reply
  5. NotTimothyGeithner

    My mother is legally blind, but we grew up in a relatively senior friendly house as a result. My dad, sisters, and helped create a place where mom is “independent.” My parents have lived in the same house since 1989, so everything was done with a crazy, blind (based on my grandparents and great aunts and uncles, this will be my mother’s problem; maybe hoarding too) lady in mind. How do the people who have the betrayal of the body happen to them late in life handle the aging process. This is really a wonderful program.

    Reply
    1. Left in Wisconsin

      Completely agree. My only caveat is that these can’t be overflow jobs that depend on the status of the (private) job markets. So the JG has to START from the premise that if you prefer/choose to do this sort of work, you are welcome to do it forever regardless of the unemployment rate or the moaning of fast-food employers that will complain about not being able to get enough help.

      The early JG proposals suggested that the guarantee first required trying to find an available “market” job before one was eligible for a JG job. That is the wrong approach.

      Reply
  6. diptherio

    I’m planning a co-housing/senior care project with some people in NW Montana. Our goal is to incorporate child care and gardening into the mix as well as elder care, so that everyone has ways to contribute to the community, as well as receiving care. We’re also shooting for multi-generational, in terms of residents. We’ve got the land and the core of a founding group. Meeting with some potential investors tomorrow. Wish me luck!

    Reply
    1. Carla

      diptherio — Please do report back on how it goes. Maybe you could contribute a whole post on your co-housing project — I’m sure the NC commentariat would be very interested. In any case, we got your back!

      Reply
  7. tongorad

    There’s plenty of work to do taking care of each other. I imagine some kind of WPA-type program that provides our seniors with the services they need.
    Perchance to dream…

    Reply
  8. Alexandra

    CAPABLE is a wonderful program. May I also suggest that people check with their local community action or area agency on aging to see if there is a Senior Companions program near them? The program is another way for seniors to stay in their own homes and independent for longer. Senior Companions are low-income (200% of federal poverty guidelines or less–most folks on social security qualify) people age 55 and over who volunteer to assist other seniors with errands, light chores, personal grooming, and/or simply passing the time together–completely free of charge. SCs go through a criminal history check before they can serve. And having a SC will not impact eligibility for home health care or CAPABLE assistance, so it can act as another layer of help and social connection.

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  9. Selwyn

    Florida Medicaid got this right. Numerous studies show people do better mentally and physically when they are allowed to stay in their own home as long as possible.
    Now, Medicare Advantage Plans are going to be allowed to offer this type of service – but not traditional Medicare.
    Regardless, it is better for those who don’t have dementia or other problems that would preclude staying home. And overall, it’s quite the savings to payers.

    Reply
  10. Jeremy Grimm

    We have nurses grossly underpaid for what they do. We have patients paying horrendous amounts for nursing care. A great deal of money is getting lost in the middle. The root problem is that the large pool of money is used to buy state licensing laws to protect and grow that middle cut at both ends, and state government [not unlike other layers of our government] has completely forgotten who they’re supposed to serve — or perhaps we were all lied to in high school civics class.

    Reply
  11. skk

    since my wife and I are 65, and its just us two, we have to plan for the future so this study interested me. Assisted living, in one guise or another beckons I’m pretty sure. So I read the abstract ! Fortunately or otherwise, I can’t extrapolate from the study to our circumstances.. Its of

    In this randomized clinical trial of 300 low-income community-dwelling adults with a disability in Baltimore, Maryland, between March 18, 2012, and April 29, 2016, aged 65 years or older, cognitively intact, and with self-reported difficulty with 1 or more activities of daily living (ADLs) or 2 or more instrumental ADLs (IADLs),

    Of the 300 people randomized to either the CAPABLE group (n = 152) or the control group (n = 148), 133 of the CAPABLE participants (87.5%) were women with a mean (SD) age of 75.7 (7.6) ; 126 (82.9%) self-identified as black. Of the controls, 129 (87.2%) were women with a mean (SD) age of 75.4 (7.4) years; 133 (89.9%) self-identified as black.

    I had to look up what “community-living” meant. It means out in the wild, in the sub-division, projects etc, not in assisted living. Brave souls !

    The comment on the abstract is also worth noting –
    https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2720136

    viz:

    “The research team screened 1229 persons to select 300 participants to complete a 5 month home intervention or a home minimalist home visit control arm with a respective 12 month f/u analysis. Then, with submission of the report, there was presumably another 1 year of careful editing. The cost per intervention person was $2825 that included up to $1300 for home repairs.

    I wonder whether each person in the study had an assessment of their extended family and next-door neighbor networks at the beginning of enrollment. Secondly, I wonder whether or not the number of hospital days required during the year before enrollment and two years after enrollment were impacted by the study. This information, if available, would generate a much wider impact from the study on healthcare reform. Given the socioeconomic status of these study participants, I dearly hope so.”

    Of course the comment is noting how much selection went on in this study – how randomized was it after all.. sure they randomized amongst the 300, but where did you get the 300 from? As in the Greco-Persian wars, if the 300 weren’t from Sparta but from Athens say – however randomised it was…

    Reply
  12. rtah100

    My father once prescribed a dozen yards of linoleum on the NHS to a patient who kept tripping on her hallway runner. Ah, the old days of hospital consultants’ clinical independence. :-)

    Reply

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