There is a great need for the kind of research carried out by this French team. The worst thing that could happen is that the negative results of this trial give governments, healthcare professionals and laypeople the impression that care doesn’t matter.
What should be the gold standard for the care of people diagnosed with Alzheimer’s? And who should provide that care? A team of researchers led by Dr. Fati Nourhashémi at the University Hospital in Toulouse, France set out to answer those questions.
“We were disappointed,” said Dr. Nourhashémi in an email. “I personally believe we have reached a point where much progress has been made over the last 15 years but we are at a plateau. [Going forward,] we must be innovative and imaginative.”
Trial DetailsThe trial involved 50 memory clinics and more than 1100 people diagnosed with mild to moderate Alzheimer’s. Half of the participants received “usual care,” typically an annual visit to a memory clinic. The other half was treated according to a special care plan developed by a team of neurologists, geriatricians, psychiatrists and general practitioners as part of the French government’s plan for addressing Alzheimer’s. Through the French Alzheimer’s Association, patients and caregivers gave input to the plan.
Under this special care plan, patients were seen twice per year, and various aspects of their well-being, along with that of their caregivers, were evaluated. Besides cognitive testing, memory clinic personnel assessed:
- functional dependency
- medicines taken
- behavioral problems
- patient and caregiver knowledge of Alzheimer’s
- balance and walking
- caregiver physical and psychological health
- legal issues and patient safety.
Dr. Nourhashémi and his colleagues produced written material and a CD-ROM for the doctors involved in the study, and conducted in-person training sessions. For caregivers and patients, they developed written material on Alzheimer’s and on management of typical problems. That material provided links to support groups and services.
Despite all this, the special care plan group did not maintain functionality any better than the usual care group, at least according to their caregivers. Nor did they differ from the usual care group in institutionalization or death rates during the two year study.
Why Didn't the Special Care Plan Help?So why didn’t the special care plan group do better? Maybe these patients and their caregivers simply needed more visits and more help from memory clinic teams. Or maybe a case management approach with an individualized care plan would work better, says Dr. Nourhashémi. And maybe primary care doctors should act as case managers, he thinks. “We would like to initiate a project directly with general practitioners,” he wrote. “To me, these primary care doctors seem very important to target. I think that maybe monitoring by specialists should be reserved for some patients (those who are declining rapidly, or who have behavioral problems, etc.). This has to be confirmed.”
There’s another possibility. When I think back to my parents’ visits to a university-based memory clinic before my father died, they came out of those visits feeling quite pessimistic about my father’s health and what the future might hold. Could the emphasis on identifying and managing problems have had a similar negative effect for those in the special care plan?
No, says Dr. Nourhashémi, because the results of those in the special care plan were basically the same as those in the usual care plan. But it’s interesting to note the one difference between the usual care group and the special care plan group. The patients were institutionalized at about the same rate, but for those in the special care plan group, the reason was much more likely to be related to the caregivers. In the control group it was more likely to be related to a medical condition. This might suggest that education about Alzheimer’s and counseling about problems makes caregivers more negative about the functionality of the patients or their own ability to provide care.
The downside of emphasizing problems is part of the logic of Martial and Anne-Claude Van der Linden, who blog about brain aging at Mythe-Alzheimer. Last week, they posted a broad critique of the French trial of the specialized care plan.
A bit of background is helpful to put this critique in context. Martial Van der Linden is a psychologist and professor of psychopathology and cognitive neuropsychology at the Universities of Geneva (Switzerland) and Liege (Belgium); Anne-Claude Juillerat Van der Linden is a clinical neuropsychologist and a lecturer at the University of Geneva. The Van der Lindens founded Association VIVA, an organization addressing brain aging through prevention and through non-drug care emphasizing independence, dignity and “intergenerational unity.” They recently translated The Myth of Alzheimer’s into French.
According to Professor Van der Linden, who wrote the post, the special care plan could not be effective because:
- By diagnosing a person with Alzheimer’s and providing education about Alzheimer’s as a disease, doctors stigmatize and isolate the patient. The focus is on the patient’s problems, rather than on the capabilities he still has, and how to enjoy life.
- The plan for managing problems is mostly based on counseling family caregivers, who by themselves may not be able to absorb a large amount of information and take action to reduce problems.
- The plan contains no specific advice for optimizing memory and thinking, or for improving social and emotional well-being.
When I think about my family’s experience, I do wish I had emphasized the things my father could still do, rather than constantly trying to figure out what was wrong with him. Until the day he died, he enjoyed playing the piano, gardening, helping out at an animal shelter and, being on the water. I don’t know whether a more positive focus would have helped him maintain functionality, but it certainly would have increased his quality of life.
No matter why the special care plan used in Dr. Nourhashémi’s trial didn’t seem to benefit people with dementia, research on improving care seems more and more important. Given the failure of multiple Alzheimer’s drugs in clinical trials and the lack of firm evidence on how to prevent dementia, it looks like an increasing number of people will need care. The worst thing that could happen is that the negative results of this trial give healthcare professionals and laypeople the impression that care doesn’t matter.
Note: Dr. Nourhashémi’s comments and Professor Van der Linden’s post are in French. Any errors in translation are mine!