Dataset Information

Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation.

ABSTRACT:

Background

The 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).

Methods

An 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.

Results

Growth 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.

Conclusions

The 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 registration

ClinicalTrials.gov NCT03665909 , retrospectively registered on 11 Sept 2018.

SUBMITTER: Gaugler JE

PROVIDER: S-EPMC8684277 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundEstimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers.ObjectiveThe aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design.MethodsA moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation.ResultsQuantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors.ConclusionsCtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.