Monthly phone check-in may mean less depression for families of patients with dementia

Numerous studies have pointed to the high incidence of depression in caregivers of patients with dementia, which may result in more visits to the Emergency Room for those patients and trigger the move from home to an assisted-living accommodation or nursing facility. This study found that a simple, relatively inexpensive intervention, with a "care team navigator" operating on the frontline with support from clinicians, may improve the wellbeing of caregivers whose role may be crucial to the patient's survival and quality of life.

The study publishes in JAMA Internal Medicine on Sept. 30, 2019.

Researchers tracked quality of life and depression for 12 months in 780 patient-plus-caregiver pairs, of whom 86 percent were the spouse or daughter. These pairs included 512 caregivers in the intervention group and 268 caregivers in the "usual care" control group, in which support was limited to a standard list of resources and services and a quarterly newsletter. The researchers found a drop from 13.4 percent to 7.9 percent in the number of caregivers with moderate-to-severe depression in the intervention group over the course of the year, versus an upswing from 8 percent to 11.1 percent in the number of caregivers with moderate-to-severe depression in the usual care cohort.

When the researchers looked at quality of life among the patients with dementia, they found that it had declined in both the intervention group and the usual care group. However, the intervention patients' quality of life ranked half-a-point higher on a four-point scale in areas such as living situation, energy level, relationships and mood.

Intervention May Mitigate 'Emotional Toll of Dementia'

"This difference is meaningful, given that a one-point increase changes quality of life from poor to fair, or from good to excellent," said first author Katherine Possin, PhD, of the UCSF Memory and Aging Center. "The intervention mitigated the emotional toll of dementia as it progressed over a 12-month period."

The navigators, who had undergone 40 hours of training, called each pair -- typically the caregiver -- to check in on the health and wellbeing of both parties. Approximately half the patients had mild dementia, 30 percent had moderate dementia and 20 percent had advanced disease.

Calls averaged 40 minutes once a month, but duration and frequency varied according to families' needs and preferences. During these calls, navigators worked through care plans, including medication review, advance care planning and caregiver wellbeing. They worked from hubs, each of which was served by a nurse and social worker working regular office hours, and a part-time pharmacist. In addition to these check-ins, the navigators responded to calls from caregivers.

Wandering, Agitation May Prompt Calls to Navigator

"The navigators made most of the calls, but caregivers sometimes reached out when they were dealing with challenging behavior, like wandering or agitation, or if there was a family conflict," said co-author Sarah Dulaney, RN, MS, from the UCSF Memory and Aging Center, the study's nurse coordinator. "The navigators also provided scripted guidance on when to call the primary care provider and when to call for emergency assistance."

When researchers compared the number of ER visits made by the intervention patients with those in the usual care group, they found that a projected 120 ER visits had been averted due to advice from clinicians that had been funneled by the navigator. These visits represent a significant cost saving, the researchers noted.

"This study suggests that a simple, low-cost intervention to diminish the burden of caregiving can have dramatic effects on dementia care and dementia burden," said senior author Bruce Miller, MD, director of the UCSF Memory and Aging Center. "Good care is cost-effective!"

"The challenges of providing day-to-day care for patients with dementia usually falls on informal caregivers, whose needs are unmet by patient-centric health care models," said Possin, who is also affiliated with the UCSF Global Brain Health Initiative and the Weill Institute for Neurosciences. "We developed a program that we hope changes the experience of living with dementia, so that families can live as well as possible despite the disease."

Funding: The study is supported by funding from the Department of Health and Human Services, Centers for Medicare and Medicaid Services, Global Brain Health Initiative, National Institute on Aging and National Institute on Neurological Disorders and Stroke.