My first couple of blog posts were focused on directions in research on Alzheimer’s disease. So this time I’d like to turn to the routine clinical care of patients with Alzheimer’s disease and other dementias.
As the Affordable Care Act takes effect in the next few years, there will be an increased emphasis on outcomes rather than procedures. This makes good sense, but it remains to be seen how this idea is going to be enacted.
For example, in the case of heart attack or stroke, we might measure outcomes like survival, length of hospital stay, disability, or re-admission within the months after hospital discharge. With cancer, we could look at cure rates or length of survival after diagnosis.
But what are the important outcomes for patients with dementia? Preservation of cognitive function? Preservation of “activities of daily living?” Optimizing quality of life? Delay in nursing home placement? Avoidance of emergency room visits with behavior crisis? Minimizing caregiver distress? Something else?
You get different answers depending on whether you ask doctors, nurses, psychologists, social workers, or other health care workers. And the arguments go round and round without resolution.
One of the challenges is that there is little evidence that medical care can impact any of the outcomes listed above. So some experts are hesitant to propose that our dementia care system be evaluated on the basis of outcomes that it can’t control. One of the other challenges is that the measurement of some ideal outcomes is challenging if not impossible. (For example, how do we really know the quality of life being experienced by a person who cannot express himself or herself?)
The point is that this is not an easy thing to do. But with or without the Affordable Care Act, it is important for us to better define the goals of dementia care so that we can evaluate and optimize our practices while we wait for the clinical research enterprise to bear fruit.
One of our efforts in this direction at the OHSU Brain Insitute has been the establishment of an “alumni advisory group” at the OHSU Layton Aging & Alzheimer’s Disease Center. These are widows and widowers of our former patients — veterans of Alzheimer’s disease from start to finish — who meet quarterly to advise us on our clinical practices. We are working with them to better define treatment goals, understanding that we need to focus on those that are measurable and at least plausible for modification by our care. We would welcome input from the public and invite you to comment below.