This is an article about strategy to maximize lifespan for individuals with Alzheimer’s disease. It reports on the results of a recent study which found that the longer the person with Alzheimer’s disease stays at home, the lower the risk of death associated with transfer. But there was a missed opportunity to explain why the published literature, including the study on which the article was based, does not lead to a clear conclusion about when to transfer a person with AD to a nursing home.
Although the article did mention in passing that the care of a family member with Alzheimer’s disease can be emotionally overwhelming and physically difficult, it failed to present the balance that needs to be struck between the benefits and harms to both the patient and the caregiver. Because the article did not contain quantitative information about the impact on patient longevity, it was less useful to the reader than it might have been. Just how big was the benefit in absolute terms? There was also no information on costs of either option – a huge issue.
The article’s strenghth is in the clear description of care-giver attributes that contribute to higer mortality of the patient with Alzheimer’s disease, such as care-giver denial.
There was no information about costs for caring for someone with Alzheimer’s disease at home or in an appropriate institution, or what resources might be available to help defray some of the costs associated with either. There was also no information about the toll on the person providing home care, such as the physical and emotional burden or the potential lost wages of the care provider.
Maximizing life expectancy was presented as the presumed benefit of treatment. The extent to which lifespan was extended with longer maintenance in a home setting was not quantified in absolute terms. However whether living longer with dementia is a benefit is subjective. The benefits of either home care or institutional care for someone with Alzheimer’s disease in terms of other measures of quality of life were not presented.
Reduction in lifespan was presented as a harm of transfer to a nursing home, though quantitative information was not provided. While shortening of lifespan for the individual with Alzheimer’s disease was the focus, the harms in terms of emotional toll and financial ramifications for the care givers were not factored in. The article mentioned that caring for an Alzheimer’s disease patient at home can “kill” the care provider, though this was not addressed in the research study on which the article was based.
The article does not point out that it was based on a report that was an observational cohort study, a type of investigation that yields weaker conclusions than a randomized, controlled study. While the idea of randomization to a nursing home seems far-fetched, it would nevertheless be appropriate to view the conclusions of the report with some skepticism. While the report showed association, it did not demonstrate causation. It is impossible for this type of study to eliminate the explanation that placement in a nursing home is a proxy for poor prognosis, even with the effect’s diminishing over time. There were no details provided in terms of the magnitude of difference in lifespan or quality of life that might be anticipated.
There were no obvious elements of disease mongering
The story used several sources – a researcher in a study published in the Journal of Gerontology and interviews with a daughter of an Alzheimer’s disease patient, with a nursing home director, with a psychologist in geriatric neuropsychiatry, and with a spokesperson from the Alzheimer’s Association.
The article did briefly mention some of the options available to delay placement in a nursing home such as care-giver training, day-care programs, and other support services. There was also mention of the role of medications in the care of Alzheimer’s disease. In addition, the article listed some of the detrimental aspects of home based care such as the physical and mental toll on family members providing the care.
One of the points made in the article is that appropriate care for someone with Alzheimer’s disease is not available at all nursing homes. Determining that a facility is equipped and staffed for dementia care is an important consideration.
The data that were novel were the results of a study that found that Alzheimer’s patients who were cared for longer at home appeared better able to adjust once they were placed in an institution as measured by longevity, than those who were institutionalized earlier. Living in a nursing home was associated with shortened lifespan but the longer the person was at home, the smaller the reduction in longevity.
Does not appear to rely on a press release.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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