Abstract
BackgroundThe goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer’s disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p < .05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative’s dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression).MethodsAn embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM’s effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not.ResultsGrowth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory.ConclusionsThe findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits.Trial registrationClinicalTrials.govNCT03665909, retrospectively registered on 11 Sept 2018.
Highlights
Unpaid caregivers, family members, are the core of the long-term care system in the United States for people with Alzheimer’s disease or related dementias (ADRD)
Our prior mixed methods study of the acceptability and feasibility of remote activity monitoring (RAM) for dementia caregivers found that perceived as appropriate for and useful to supplementing at-home caregiving, considerable customization of the system was needed to meet the needs of the person with ADRD as well as their family caregivers [20]
The results indicated that the initial months of calibrating the RAM system was critical to ensure benefit for dementia caregivers
Summary
Family members, are the core of the long-term care system in the United States for people with Alzheimer’s disease or related dementias (ADRD). The multi-year progression of ADRD has placed considerable pressure on the U.S healthcare system, as persons with dementia account for considerably higher healthcare costs than individuals without ADRD [1]. Complicating these issues is the impending shortage of family caregivers in the U.S, with the available caregiver to older person in need ratio anticipated to drop from 7:1 in 2010 to 4:1 in 2030 [3]. Intervention studies that focus on building self-competence/efficacy when managing the functional, cognitive, and behavioral care demands of persons with dementia may hold promise when alleviating stress and negative mental health outcomes among caregivers [1]. Our prior mixed methods study of the acceptability and feasibility of RAM for dementia caregivers found that perceived as appropriate for and useful to supplementing at-home caregiving, considerable customization of the system was needed to meet the needs of the person with ADRD as well as their family caregivers [20]
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