Impact case study database

The number of people living with dementia is rising rapidly owing to increased longevity. Two-thirds of people with dementia (approximately 567,000 in the UK) live at home, with their family providing most of their care ( S1). According to the Alzheimer Society’s estimation, more than 600,000 family members provide GBP13,900,000,000 per year of unpaid dementia care in the UK, however, 40% of the family carers have a clinical depression or anxiety, while others have substantial psychological symptoms ( S1). Family care is pivotal as it exerts a 20-fold protective effect against the risk of care home admission ( S1). Therefore, the wellbeing of family caregivers and providing them with effective support is crucial.

The usefulness of the START psychological intervention for family carers was evaluated in a well-conducted randomised trial, which relied on use of optimal statistical methodologies to ensure accurate and unbiased estimates of the intervention effect. This trial provided robust evidence of clinical and cost-effectiveness of the intervention and has subsequently influenced decisions about guidelines, policy and practice for supporting family caregivers.

Approximately 66% of trial participants continued to use the techniques they had been taught after the programme ended ( S2). The manual and associated resources to deliver the intervention are freely available and can be downloaded (in English, Urdu, Spanish and Japanese) from the UCL website ( S3). The page has been viewed approximately 30,000 times until the end of 2020 ( S4).

Changes to UK guidelines and policy on improving dementia care

The evidence of 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 ( S5). They noted that “Carers of people with dementia undoubtedly provide a vital role and we know that the availability of appropriate care and support and the quality of services has a significant bearing on whether carers feel able to take a break from their caring responsibilities” ( S5). The government recommended carers of people with dementia should be aware of and be offered the opportunity for respite, education, training, emotional and psychological support, to better enable them to cope with their caring responsibilities. To allow carers to have a life alongside caring, the guidelines recommend that more employers should have carer friendly policies and practice enabling more carers to continue working and caring. The Government also mandated that NHS England (2016-2017) should provide measurable improvements in all areas of the policy, including quality of post-diagnosis treatment and support for people with dementia and their carers ( S5).

The Chief Executive of Alzheimer’s Research UK (the country’s leading dementia research charity) acknowledged the programme’s importance: “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” ( S6).

START was evaluated in the National Institute of Clinical Excellence (NICE) guidelines on Dementia (NG97 Assessment, management and support for people living with dementia and their carers; June 2018). The NG97 evidence committee noted, “The evidence from the 2014 Livingston HTA report which demonstrated that successful non-pharmacological interventions for managing non-cognitive symptoms could be cost saving, due to the reductions in subsequent treatment costs for those receiving early interventions. The committee agreed that this recent HTA report represented the best quality economic evidence available and supported the recommendation for the first line use of non-pharmacological management” ( S7). Whilst the document recommended a variety of approaches for carer support, such as START or a similar intervention, the committee agreed that “the topics covered by START are a good representation of the topics that should be covered in this type of intervention” for carers ( S7).

Improving mental health of dementia patients’ carers and support workers

The publication of the START intervention has generated a lot of interest and enthusiasm from NHS trusts for its adoption and it is now being delivered in one third of London memory clinics.

The Alzheimer’s Society (the UK’s leading dementia support charity) provided funding for dissemination of START, allowing training of 134 clinical psychologists and 39 admiral nurses in 9 UK locations from October 2014 to September 2015. Since then, the UCL team has provided training for 30 staff members in another London trust (NELFT) and others are being trained by the members of the dissemination groups. These trained professionals then cascaded training to others in their area, and this resulted in START being delivered locally to 136 carers across 11 service areas in 2016. A survey carried out in July 2018 by the UCL team indicated that START is being used by at least 24 services over 12 NHS trusts, with approximately 192 carers having received the intervention in 2017 ( S8) . Individuals who completed the training reported better understanding of the condition and how it can cause challenging behaviour. This understanding made it easier for them to cope with psychological distress and improved their wellbeing, with a related improvement in their ability to provide care: “Yesterday I had the feeling of happiness I haven’t had in a long time. I suddenly felt positive and ‘able” ( S8). This is echoed by voices from the dementia support workers, START facilitators and managers at the Alzheimer’s Society:“The work I got to do with START was really meaningful. Personally, I feel that START gave me the opportunity to work closely with carers, building a relationship that I normally wouldn’t get to, helping them to deal with the everyday practical sides of caring”;

“I really enjoyed making an actual difference to people’s lives, literally (…) the feedback from the carers is that it does work (…) it’s nice to know that there is a tool that can help carers that are really struggling”;

“That day is hard, seeing the consultant, trying to get ready and it’s a heavy day. Whereas with this, it’s in someone’s comfortable space and it’s at their own time and it’s looking at strategies (…) The things that maybe aren’t discussed with GPs or even a support worker on a home visit. This really opens up quite a lot more, it helps with exploring a lot more detail into what’s happening in the home and I think that’s really good”;

“I felt like it really highlighted and made my job more meaningful, because often I would come away thinking I’ve not done anything other than sat with a family for an hour and a half and talked about what dementia is (…) START actually gave them that one to one, especially for the carer [to] actually help the person with dementia in the long run” ( S8).

Worldwide implementation of the START intervention

The START intervention has also been adopted by the international community. An online video conferencing version of START was developed in Australia to enable delivery of the intervention from Melbourne and Perth to people in remote communities . By November 2018 , 4 therapists had completed extensive training provided by UCL researchers and 28 carers had already completed the 8-week programme ( S9). Work in 2018-20 enabled delivery to the South Asian community (Urdu translation) . Translation of the START manual into Japanese (2019) enabled 14 people to receive the intervention in an ongoing study in Japan, with 27 receiving training by February 2020 ( S9). A START pilot project was conducted in Hong Kong, where 13 family carers have received training since the manual was translated into Chinese in 2017. Translations into Tamil and Hindi have been trialled successfully and START is now being delivered remotely in India (Chennai, Mysore and New Dehli) ( S10) . In Spain it was trialled in 4 people after consultation about the translation. Unfortunately, plans for the regional authorities to begin implementation in Northern Spain have been delayed by the COVID pandemic ( S10).

START has been adapted (in collaboration with UCL) for delivery in several different contexts and populations. The UCL Institute of Neurology adapted and trialled START for patients with Parkinson’s Disease dementia, and it has been adapted to Lewy Body Dementia (with training already delivered to carers through third sector partners). Furthermore, the success of the START intervention built a team and a method that led to funding further research programmes focused on dementia. These include the DREAMS-START intervention involving a similar style of intervention to improve sleep in people with dementia living at home and a project to improve quality of life in people with dementia.