Abstract
Family members remain the main care providers for the increasing numbers of people with dementia, and often become depressed or anxious. In an implementation research project, we aimed to widen access to Strategies for RelaTives (START), a clinically and cost-effective intervention for the mental health of family carers, by laying the foundations for its implementation in the third sector. We used the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to guide implementation of START, a manual-based, individually-delivered, multicomponent eight-session coping strategy intervention. We interviewed a maximum variation sample of twenty-seven stakeholders from the English Alzheimer’s Society (AS), about possible difficulties in management, training, and delivery of START. We trained and supervised three AS dementia support workers in different locations, to each deliver START to three family carers. Two researchers independently coded pre-intervention interviews for themes. We assessed intervention feasibility through monitoring delivery fidelity, rating audio-recordings from 1–5 (5 being high) and interviewing facilitators, family carers and AS managers about their experiences. We assessed effectiveness on family carers’ mental health using the Hospital Anxiety and Depression Scale (HADS) before and after receiving START (scores 0–42). We changed START’s format by reflecting carer diversity more and increasing carer stories prominence, but core content or delivery processes were unchanged. All carers received START and attended every session. The mean fidelity score was 4.2. Mean HADS-total score reduced from baseline 18.4 (standard deviation 7.4) to follow-up 15.8 (9.7). Six (67%) carers scored as clinically depressed on baseline HADS and 2 (22%) at follow-up. Facilitators and carers rated START positively. Appropriately experienced third sector workers can be trained and supervised to deliver START and it remains effective. This has the potential for widened access at scale.
Highlights
Around 40% of family carers of people living with dementia have clinical depression or anxiety [1, 2]
We found this for depression, anxiety, and quality of life, which improved at a level consistent with outcomes observed in the randomised controlled trial (RCT), where it was clinically and cost-effective
Both carers in this study who felt that the intervention had come too late, were considering a transition for their relative to residential care suggesting that Strategies for RelaTives (START) may work best for family members caring for relatives before carers feel they cannot manage at home
Summary
Around 40% of family carers of people living with dementia have clinical depression or anxiety [1, 2]. Maintaining the mental health of family carers of people with dementia is important for them, and may help them to continue caring at home [3]. We developed START (Strategies for RelaTives) to improve family carers’ mental health and quality of life, by using helpful coping strategies and reducing dysfunctional strategies [4]. The sessions comprise: behavioural management, communication strategies, identifying and changing unhelpful thoughts, accessing emotional support, increasing pleasant events, relaxation, future planning, practice between sessions and developing a maintenance plan [9]. Carers keep their manual, stress reduction audio-recordings and continue to use what works for them [10]
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