START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention

Abstract

ObjectivesTo analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms.DesignA qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically.SettingThree mental health and one neurology dementia clinic in South East England.ParticipantsParticipants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2 years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded.Primary and secondary outcome measures(1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery.ResultsCarers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage.ConclusionsParticipants’ varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2 years after receiving the intervention could be a mechanism for the intervention remaining effective.

Improving services for people with learning disabilities and dementia: Findings from a service evaluation exploring the perspectives of health and social care professionals

“…This evaluation suggests that training for carers, regular reviews and the "Top Tips" information sheets work well in terms of awareness- In addition to improving carer knowledge and skills, it is important to identify ways to address staff and family stress. In the general population, the StaRT (Strategies for RelaTives) support and education programme has been found to be clinically and cost-effective for family carers Livingston et al, 2013) and positively received by carers (Middleton & Mason, 2017;Sommerlad, Manela, Cooper, Rapaport, & Livingston, 2014). This programme is being piloted locally with family carers and a staff team to see how appropriate it is for carers of people with learning disabilities.…”

Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews

“…The intervention group showed positive effects on carer mood and anxiety levels for 2 years. An accompanying qualitative investigation (Sommerlad et al, 2014) highlighted different components of the intervention that carers identified as important.…”

I becomes we, but where is me? The unity–division paradox when caring for a relative with dementia: A qualitative study

“…Previous research has suggested that carers of someone with dementia welcome approaches to support that focus on their role in managing the condition (Sommerlad, Manela, Cooper, Rapaport, & Livingston, ). ANs are available to help people in this respect.…”