Developing effective intervention for family carers of people with dementia

UCL’s START (STrAtegies for RelaTives) intervention seeks to reduce anxiety and depression in family carers of people with dementia. The intervention is available through charities and 12 NHS Trusts.

12 April 2022

Many people with dementia rely on care provided by family members, but the increasing dependence and challenging behaviour that comes with dementia can take its toll on the mental health of those who care for them. Four in ten carers have clinical depression or anxiety, while others have significant psychological symptoms.

As the number of people with dementia in the UK is projected to almost double by 2040, it is critical to develop strategies to support carers.

Dr Julie Barber (UCL Statistical Science), together with a multi-disciplinary group of researchers led by Professor Gill Livingston (UCL Division of Psychiatry), carried out an evaluation of the STrAtegies for RelaTives (START) intervention: a programme of therapy and coping strategies for dementia carers developed at UCL.

UCL trial of START

In 2009, the team conducted a randomised trial of START recruiting 260 carers, who either received eight sessions of manual-based therapy (the START intervention) delivered by psychology graduates, or ‘treatment as usual’ (TAU).

The UCL trial required use of methods of statistical analysis which had not previously been widely used in applied research, but which were essential to address specific complexities of the START trial design, ensuring unbiased and precise estimates of the intervention effect which were measured at four, eight, 12 and 24 months and finally at six years after the original intervention.

The results of the trial

The trial showed that carers receiving the START therapy benefited significantly in the short and long term compared to carers in the control group for symptoms of depression and anxiety.

After six years, control group carers were five times more likely to have clinically significant depression than those receiving the START therapy. Care costs were also nearly three times lower among families in the START group.

Two-thirds of trial participants continued to use the START techniques after the programme ended. The training manual and associated resources are freely available and can be downloaded (in English, Urdu, Spanish, and Japanese) from the UCL website. The page has been accessed approximately 30,000 times.

START’s national and international impact

START’s effectiveness has led policy makers to cite it in national guidance and policy documents. The UK Government included START in The Prime Minister’s Challenge on Dementia 2020 (published in 2015), which set actions to improve dementia care, support, and research in England.

The intervention is now being delivered in a third of London’s memory clinics and over 200 healthcare professionals, including clinical psychologists, have been trained to deliver the intervention with the training cascaded locally.

By July 2018, START was being delivered by at least 24 services across 12 NHS trusts, with approximately 192 carers receiving the intervention in 2017 alone. Five other countries are using the intervention: Australia, Spain, Japan, India and Hong Kong and it has been translated and delivered online to remote communities.

Update: Since the time of writing, START has been adopted for all of Wales, and has now been translated into Macedonian.

“Around 23,000,000 people in the UK – roughly a third of the population – have a close friend or family member with dementia, and it’s these unsung heroes who take on much of the strain of the condition. It’s important to find ways to support carers and protect their health, and these results suggest that the START programme can help reduce anxiety and depression for carers”
- Rebecca Wood, Chief Executive, Alzheimer’s Research UK

Research synopsis

START (STrAtegies for RelaTives) programme: reducing depression and anxiety in family carers of people with dementia at reduced costs

SUMMARY: The START (STrAtegies for RelaTives) intervention is a psychological therapy to reduce anxiety and depression in family carers of people with dementia. The intervention, developed and validated by a multidisciplinary team at UCL, is available to carers via 24 services across 12 NHS Trusts and by charities such as the UK Alzheimer’s Society.

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