Objective. To examine the effectiveness of a hub site–based care delivery system in delivering a dementia care management program to persons with dementia and their caregivers.
Design. Randomized pragmatic clinical trial enrolling dyads of persons with dementia and their caregiver. Study participants were randomly assigned to the dementia care management program and usual care in a 2:1 ratio.
Setting and participants. The study was conducted from 2 hub sites: the University of California, San Francisco, and the University of Nebraska Medical Center in Omaha. Each hub-site team served persons with dementia and their caregivers in California, Nebraska, and Iowa in both urban and rural areas. Participants were recruited through referral by treating providers or self-referral in response to advertising presented through a community outreach event, in the news, or on the internet. Eligibility requirements included: having a dementia diagnosis made by a treating provider; age older than 45 years; Medicare or Medicaid enrollment or eligibility; presence of a caregiver willing to enroll in the study; fluency in English, Spanish, or Cantonese; and residence in California, Nebraska, or Iowa. Exclusion criteria included residence in a nursing home. Out of 2585 referred dyads of persons with dementia and caregivers, 780 met inclusion criteria and were enrolled. A 2:1 randomization yielded 512 dyads in the intervention group and 268 dyads in the control group.
Intervention. The dementia care management program was implemented through the Care Ecosystem, a telephone- and internet-based supportive care intervention delivered by care team navigators. The navigators were unlicensed but trained dementia care guides working under the supervision of an advanced practice nurse, social worker, and pharmacist. The intervention consisted of telephone calls, monthly or at a frequency determined by needs and preferences, placed by navigators over a 12-month period; the content of the calls included response to immediate needs of persons with dementia and their caregiver, screening for common problems, and provision of support and education using care plan protocols. Caregivers and persons with dementia were encouraged to initiate contact through email, mail, or telephone for dementia-related questions. Additional support was provided by an advanced practice nurse, social worker, or pharmacist, as needed, and these health care professionals conducted further communication with the persons with dementia, caregiver, or outside professionals, such as physicians, for the persons with dementia, as needed. The average number of telephone calls over the 12-month period was 15.3 (standard deviation, 11.3). Participants assigned to usual care were offered contact information on dementia and aging-related organizations, including the Alzheimer’s Association and the Area Agencies on Aging, and also were sent a quarterly newsletter with general information about dementia.
Main outcome measures. The primary outcome measure was the Quality of Life in Alzheimer’s Disease score obtained by caregiver interview. This quality of life measure includes the following aspects, each rated on an ordinal scale of 1 to 4: physical health, energy level, mood, living situation, memory, family, closest relationship, friends, self, ability to do things for fun, finances, and life as a whole. The scores range from 13 to 52, with a higher score indicating better quality of life for persons with dementia. Other outcomes included frequency of emergency room visits, hospital use, and ambulance use; caregiver depression score from the Patient Health Questionnaire scale; caregiver burden score using the 12-item Zarit Burden Interview; caregiver self-efficacy; and caregiver satisfaction.
Main results. The study found that the quality of life for persons with dementia declined more in the usual care group than in the intervention group during the 12-month study period (difference of 0.53; 95% confidence interval, 0.25-1.3; P = 0.04). Persons with dementia also had fewer emergency room visits, with a number needed to treat to prevent 1 emergency room visit of 5. The intervention did not reduce ambulance use or hospital use. Caregivers in the intervention group had a greater decline in depression when compared to usual care; the frequency of moderate to severe depression decreased from 13.4% at baseline to 7.9% at 12 months (P = 0.004). Caregiver burden declined more in the intervention group than in the control group at 12 months (P = 0.046). In terms of caregiver satisfaction, 97% of caregivers surveyed in the intervention group said they would recommend the intervention to another caregiver; 45% indicated they were very satisfied, and 33% that they were satisfied.
Conclusion. Delivering dementia care via telephone and internet through a collaborative program with care navigators can improve caregiver burden and well-being and improve quality of life, emergency room utilization, and depression for persons with dementia. In addition, the program was well received.