What's the Best Alzheimer's Care? Disappointing Results from a French Study

Summary:  A recent French clinical trial found that a standardized special care plan at memory clinics did not help people diagnosed with Alzheimer’s maintain functionality.  Other approaches or care plans might be more successful, but have not been tested in a study of this size.

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.

They hypothesized that comprehensive care at a memory clinic, including a standardized plan to manage problems, would help people diagnosed with Alzheimer’s maintain their functionality.  Unfortunately, the results of their trial were negative.

“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 Details

The 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
• nutrition
• balance and walking
• caregiver physical and psychological health
• legal issues and patient safety. 

If problems were found in any of these areas, they were addressed in a standardized way, often in the form of counseling for the caregiver or other non-drug measure.

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.

Professor Van der Linden says an individualized care plan might work better [here he agrees with Dr. Nourhashémi].  He writes that psychologists, who appear not to have been involved in the development of the care plan, are better qualified to propose care that directly addresses the functional difficulties each person is experiencing.  He says that while providing individualized care is more expensive, some of the money that is spent on biomedical research should be shifted to care.

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!

Comments

[Richard Taylor]

If there was a Nobel Prize for excellence in explaining things related to dementia research and/or a a Pulitzer Prize for on-line journalism benefiting people with dementia and their professional dementia/caregiver communities - surely you should/would win it year after year after year. Everyone with dementia, everyone who is a professional who "treats people living with the symptoms of dementia, and every family caregiver should read your blog on a regular and timely basis. You are passionate and objective. You are reasonable, evidence based, and your conclusions are always generous, open ended, and kind to all, yet always true to the facts! Thank you for being you.
Richard

[Danny George]

well said Richard. Mona, great article, and so glad to see Martial and Anne-Claude featured in The Tangled Neuron - they are truly committed to humanizing care for persons with dementia.

[Mhdonohue]

This result comes as no surprise. The overall reason in my view is this:

Attempting to prescribe uniformly for Alzheimer’s Disease (AD) when the last thing it is can be called uniform in its manifestation in the persons having it. There are as many kinds of AD as there are people who have it. Each person having it is in a different stage of it from day to day, different from all others bearing a similar diagnosis.

Uniformity is the giant fault of our modern data dependent culture that needs to classify before it can concern itself with anything. I call this sin “Homogenization!” Like the inverse of Murphy’s law we homogenize all or our programs into their lowest denominator of ineffectiveness.

Treatment of AD, particularly in the Early Stage of it, when a person can be kept there longer by it, needs to be measured by the positive response of the person getting it. Does the patient respond, does it help, does it improve. What works is what should by utilized.

Reducing treatment to a data friendly consistent formula decreases its possibility of being effective.

Perhaps in the classification process while decentralizing treatment modality we ought to centralize diagnostic criteria broadening the class of finding of symptoms so more fits into the ambit of AD, forcing treatment to recognize difference by reason of its generality.