At least once a week for the last 10 years, I have probably said or written that our fragmented and myopic, episodically focused system of care doesn’t meet the needs of older adults with complex, chronic health problems. And if there is one growing aging issue that throws even more sand in the gears of what little systematic care we have, it’s dementia. In this week’s Journal of the American Medical Association, Elizabeth Phelan, a Beeson Scholar alumna, offers powerful evidence about the consequences of this misfit between the capacities of our primary care system and the needs of older adults with dementia, even in one of the best primary care systems in the country, Group Health Cooperative in Seattle, Washington.
Dr. Phelan, along with her colleagues and mentors at the University of Washington/Group Health Cooperative, used an epidemiological study of dementia incidence among senior members of Group Health in Seattle to assess rates of hospitalization for patients with and without dementia. Controlling for age, sex, and rates of co-morbid illness, she found that all-cause hospitalization was 41% higher for patients with dementia. The raw admission rates were 200 admissions per 1,000 patients per year for those without dementia versus 419 admissions per 1,000 patients per year after the onset of dementia.
To make matters worse, when you look at admissions for potentially preventable, ambulatory-care- sensitive conditions--things like urinary tract infections and congestive heart failure that should respond to careful outpatient management--the differential between non-demented and demented was even greater. Raw rates of admissions were 37 per 1,000 patients per year for the non-demented versus 106 per 1,000 patients per year for the demented. Fully adjusted for other, concurrent medical conditions, ambulatory-care-sensitive admissions were 78% higher among the demented than non-demented patients. Now, we don’t know how many of these admissions might actually be preventable, but some surely were. The size of difference is absolutely terrifying.
Right now there are over 5.4 million people in the United States with dementia. Somehow, there is a naive notion that because people have Alzheimer’s or some other dementing illness, they won’t have any of the other illnesses that are common among older adults. Unfortunately, nothing could be further from the truth. People with dementia have high burdens of other chronic conditions and high rates of hospitalization. To maintain quality of life for them and their families while controlling costs, we need to keep older adults with dementing illnesses as healthy as possible and at home with their loved ones for as long as possible. Even in the most optimistic visions of Alzheimer’s researchers, I don’t see any way of avoiding increasing rates of dementia as the population ages. Because of their age and high burden of chronic conditions, patients with dementia (and society) need effective primary care.
Part of what this study suggests to me is another reason for health care professionals to get serious about diagnosing and teaching patients and families about dementia. In the absence of effective treatments, I think many physicians and others have felt that a diagnosis of dementia was more stigmatizing and depressing than helpful. Unfortunately, this view confuses the absence of medical treatment with an absence of care; just because there isn’t a curative treatment doesn’t mean that there is nothing to be done. Care, education, and planning are all something. What these results suggest to me is the urgency of educating primary care providers about the onset of dementia. They need to work with cognitively impaired patients and their families differently than they work with their cognitively intact patients.
I think the most terrifying thing about these results is that Group Health Cooperative prides itself on the quality of its primary care. For most conditions and most of the needs of its members, it does very well. It is the home of the Chronic Care Model, after all. But care of multiply chronically ill older adults is different from even regular chronic care, much less care of people with dementia. And as Dr. Phelan observes, Group Health “has no care pathway for persons with dementia.” I wonder if they’re working on it now?