Alzheimer's Disease: Does Disease Management Help COPE?

The Disease Management Care Blog always thought that Alzheimer’s disease is one of those chronic conditions that warrant a full-course press of care management. That's because for community dwelling Alzheimer's patients, every day at home is one less day in a skilled nursing facility. Optimizing the home environment, providing support services for early recognition and management of problems and, most of all, family-caregiver support seem to be the ingredients necessary to keep these patients away from nursing homes. It may cost a lot, but carpet bombing these patients with home and telephonic support services should work, right?

Which is why the DMCB looked at the Care of Persons with Dementia (COPE) trial results reported in the Sept. 1 issue of JAMA. Using its on-line access option, it read that 209 persons with dementia (average age 82 years with a mean Mini Mental State Examination score of 13 out of 30 points – indicating the dementia was quite advanced) and their caregiver family members were recruited using ads and notifying nurse agencies about referring patients to the study. The patients were randomly assigned to COPE (N=102) or to a control group (N=107). The COPE intervention consisted of up to 10 family sessions with an occupational therapist to develop problem-solving skills and tailor the home environment to assist with activities of daily living, as well as a face-to-face and a phone call session with an advance-practice nurse for caregiver education and patient health screening. The authors estimated that the average cost of the intervention was $537. In contrast, the control group received three cheap scripted phone calls of 20 minutes’ duration that offered counseling and arranged for the mailing of educational brochures.

Four months later, individual patient scores in both groups drifted up and down, but statistically significantly more patients in the COPE group had gains in functional independence. Unfortunately, depending on scale that was used, the average gain was quite small or moderate. What's more, direct measures of agitation or quality of life did not change.

There were a lot of drop-outs also. 12% of patients were out of the study at 4 months (including 3 deaths and 2 nursing home placements in the COPE group, vs. 6 deaths and no nursing home placements in the control group).

When the measures were repeated at nine months, any differences in functional independence vanished. An additional 17% of patients dropped out of the study (including 5 deaths and an additional 3 nursing home placements in the COPE group, vs. 7 deaths and 5 nursing home placements in the control group).

The only good news was that, when family members were surveyed about the benefit of the program, the COPE caregivers were more likely to agree that they had a personal benefit, that there was better understanding of dementia and that care giving was easier. They were also more likely to agree that it helped them keep the patient at home.

The DMCB is disappointed but unsurprised. It’s notoriously difficult to alter the “trajectory” of Alzheimer’s disease. While the authors argue that their results are similar to the improvements seen in Alzheimer's drug trials, that’s not saying much: they also typically result in small to modest temporary improvements. While caregivers seemed to higher levels of confidence and satisfaction, both the COPE and control group patients had more than their fair share of admissions to nursing homes.

Four DMCB closing thoughts:

1) the study population had a high burden of disease (low Mini Mental scores) with relatively advanced dementia. It wonders if the intervention would have worked for patients with less dementia?

2) There seemed to be little in the intervention that included the patients' principal physicians. Without their active engagement, was this study destined to have disappointing results? This is a lesson that was learned by the disease management industry years ago. If COPE were part of a Patient Centered Medical Home, would it have fared better?

3) Relatively speaking, $537 per patient is not a lot of money. From the point of view of an insurer, the spend doesn’t appear to result in any meaningful patient improvement. Given the family-caregiver satisfaction, however, perhaps families would be willing to pay for this service out of pocket.

4) The clock is ticking on the U.S. Alzheimers’ time bomb. If medications and high touch approaches like this don’t work, what are millions of families with aging baby boomer parents going to do in the coming decades?