Dataset Information

Effectiveness of Powerful Tools for Caregivers on Caregiver Burden and on Care Recipient Behavioral and Psychological Symptoms of Dementia: A Randomized Controlled Trial.

ABSTRACT:

Objective

The aim of this study was to evaluate the effectiveness of a psychoeducational intervention, Powerful Tools for Caregivers (PTC), for family caregivers of individuals with dementia.

Design

A pragmatic, 2-arm randomized controlled trial compared the PTC intervention, as delivered in practice, to usual care. Participants randomized to usual care functioned as a control group and then received the PTC intervention.

Intervention

PTC is a 6-week manualized program that includes weekly 2-hour classes in a group setting facilitated by 2 trained and certified leaders. The educational program helps caregivers to enhance self-care practices and manage emotional distress.

Setting and participants

Two stakeholder organizations delivered the intervention in community settings. Participants were family caregivers of individuals with dementia recruited from the community in Florida.

Methods

Primary outcomes were caregiver burden and behavioral and psychological symptoms of dementia of the care recipient. Secondary outcomes included caregiver depressive symptoms, self-efficacy, self-rated health, and life satisfaction. Measures were collected at baseline (n = 60 participants), postintervention (n = 55), and at 6-week follow-up (n = 44).

Results

Intent-to-treat analyses found PTC reduced caregiver burden (d = -0.48) and depressive symptoms (d = -0.53), and increased self-confidence (d = 0.68), but found no significant benefit for behavioral and psychological symptoms of dementia in care recipients. PTC was rated highly by participants and program attrition was low, with 94% of caregivers completing at least 4 of the 6 classes.

Conclusions and implications

Although no significant effects were found for behavioral and psychological symptoms of dementia, this trial supports the effectiveness of PTC to improve caregiver outcomes as delivered in the community.

SUBMITTER: Terracciano A

PROVIDER: S-EPMC7302999 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundBehavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial.ObjectiveThe objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs.MethodsBetween July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes.ResultsThe idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers' limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration.ConclusionsCaregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.