Strategies for RelaTives (START) – family carers of people with dementia mood is improved by START but does it continue to make a difference years later?

The RCPsych Article of the Month for January is from The British Journal of Psychiatry (BJPsych) and is entitled ‘Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial’ by Gill Livingston, Monica Manela Aidan O’Keeffe et al.

Why we did this study
Caring for family members can facilitate closeness and be rewarding but we saw that family carers for people with dementia often feel exhausted, burdened, and low and this became worse as the person they cared for deteriorated. Often the person with dementia refuses help as they did not realise they need it. They may also be agitated, sleep disturbed and apathetic. Seeing this in clinical work inspired Strategies for RelaTives (START).

Initial we asked how common depression and anxiety was in family carers1, how some carers cope with caring without becoming depressed,2 what decisions carers find particularly difficult3 and which interventions help family carers?4 The answers led to START randomised controlled trial (RCT).

What we did
We designed and tested the eight-session, individually delivered START manuals to help families employ useful coping strategies funded by the NIHR-HTA. I was chief investigator, working with psychology (Penny Rapaport) statistics (led by Julie Barber) health economics (led by Martin Knapp), and clinical academics, Claudia Cooper, Zuzana Walker, Juanita Hoe and Cath Mummery. START is delivered by supervised graduate psychologists, manualised so deliverable consistently; and individualised so carers employ strategies relevant and helpful to them. In the final session, carers make specific plans about coping in the future, incorporating what worked for them. We leave them with their own filled in manuals and relaxation apps to keep using.

What we found
The trial showed that START reduced clinical depression in family carers to a fifth of the level of the treatment as usual (TAU) group at four and eight months after randomisation.5 It was also cost-effective. START’s continued to be effective at two-year follow-up.6 The current British Journal of Psychiatry paper shows START is still clinically effective at 6 years. Those in the intervention group are a fifth as likely to be depressed as the TAU group.7 Importantly, the median costs for patients in year 6, were £5759 for START versus £16 964 for TAU.

What’s next
Currently, the Alzheimer’s Society (AS) funds a research programme to lay the foundations for wider implementation. There are two strands. One has allowed us to tailor the manual for Black and South Asian UK Minority Ethnic groups and the other for delivery in the third sector. This study has not finished yet but the AS plans to roll out START, initially in London and then nationwide. We are producing a template for other third sector implementation. All manuals are available on our website in English and Urdu. https://www.ucl.ac.uk/psychiatry/start

We are also working internationally. Aida Suarez-Gonzalez translated START and is piloting it in Northern Spain, prior to wider implementation. Masami Kashimura translated START into Japanese and showed it was feasible. We are beginning translation, adaptation and piloting START in India led by Aimee Spector in the UK and Sridhar Vaitheswaran in India.

Overall, START helps carers without increasing costs and should therefore be available for family carers nationally and internationally. Family carers are and will remain the main source of support for people with dementia.

Why I chose this article:

Gill Livingston’s team report on the START (STrAtegies for RelaTives) psychological intervention for family carers of those with dementia. Earlier work had shown START effective at reducing symptoms of depression and anxiety at two years, and this follow-up lengthens this to a six-year time-point. Compared with treatment as usual (TAU), the intervention group continued to show significant clinical benefit at this extended time. Importantly in a constrained healthcare system, there were no differences in costs over TAU, demonstrating the programme to also be economically effective.

Kam Bhui, Editor-in-Chief, BJPsych

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