This NIHR-funded trial found that a programme to support carers of people with dementia was moderately effective in reducing carers’ depression and anxiety scores for up to two years. It was also cost-effective. The programme consisted of eight sessions delivered by psychology graduates, covering topics such as managing difficult behaviour, accessing support and planning for the future. One in three people over 65 develop dementia and family are often the primary caregivers. The findings of this trial support NICE recommendations that the psychological burden upon carers is assessed and that they are given support.
Why was this study needed?
A third of people aged over 65 will develop dementia. Families provide the majority of care, with around 670,000 family members acting as primary carer. Caring for a family member with dementia is emotionally and physically demanding, with 40% of carers experiencing depression or anxiety. Respite care may be available through local social services and private care agencies to enable carers to have time away from their caring responsibilities. However, provision for respite care is limited, so it is necessary to find other ways to support individuals with the day-to-day stresses of caring responsibilities. The NIHR funded this trial to find out if a psychological intervention carefully specified in a manual and delivered to family carers by trained psychologists would reduce their depression and anxiety, and would be cost-effective to roll-out across the NHS.
What did this study do?
This trial randomised 260 carers to receive either the START coping strategy programme or treatment as usual. Treatment as usual was expected to follow relevant NICE guideline recommendations. START comprised eight sessions delivered by psychology graduates according to a manual, which might have been an expensive way to deliver the intervention: the first involved learning about dementia and carer stress, sessions 2-5 covered managing difficult behaviour and accessing support, session 6 looked at future planning, session 7 identified pleasant activities, and the final session covered how to maintain the skills learned (see the Definitions tab for more information). There were more drop-outs in the treatment as usual group (21 people, 24%) than in the START group (12 people, 7%). Reasons, when given, for withdrawing included: not being allocated to the intervention, not liking the intervention, carer was ill or died, or the person being cared for had died.
What did it find?
- The START intervention reduced carers’ anxiety and depression in both the short (8 months) and long term (12 and 24 months).
- By eight months, START had reduced scores on the 42-point Hospital Anxiety and Depression Scale (HADS-T) from 13.5 at baseline to 12.9. Those receiving usual treatment had a small increase in score from 14.8 to 14.9. By 12 months, scores in the START group were further reduced to 12.5, but had risen to 13.6 at 24 months, slightly above the baseline score. In the usual treatment group scores were 14.6 at 12 months but had risen to 15.5 by 24 months.
- Overall this meant that in the long term, START reduced scores by an average of 2.58 points (95% Confidence Interval -4.26 to -0.90), which was considered clinically significant, compared to the usual treatment group. Scores were adjusted to account for differences in the carers’ age, gender and psychological health at baseline.
- START was cost-effective in the short and long term. Costs were slightly higher in the START group compared with treatment as usual but the difference was not significant. At 24 months calculations indicated that the cost of the intervention for each additional year that a person lived a good quality of life (QALY) was £11,200. There would be a 75% likelihood of the intervention being cost effective using the standard willingness to pay threshold of £30,000 per QALY.
What does current guidance say on this issue?
The 2006 NICE guideline on dementia recommends that carers should be assessed for psychological stress and offered support such as psychological therapy or peer support, alongside practical support such as telephone information lines and access to respite care.
2013 NICE commissioning guidance for dementia reiterates these responsibilities and states that the average cost of 6 sessions of cognitive behavioural therapy is £188.
What are the implications?
The trial reinforces NICE recommendations by providing evidence of the clinical and cost effectiveness of the START coping programme. START is likely to be cheaper overall than carer CBT. Although the cost per session (£36) was slightly higher than the cost for a session of cognitive behavioural therapy (£31 in the NICE costing report), this comparison does not take into account the number of sessions in the treatment programme or training or supervision costs that might be different between the programmes. The START intervention was delivered by psychology graduates, to help control costs. The training requirements of those who would deliver this intervention, if implemented widely, will need consideration..
The authors believe that those included in the study were representative, and analyses were adjusted for important factors such as age, gender and baseline psychological health. However, the potential influence of some other factors remains unclear. For example, the effect of the intervention may vary depending on how long the person has been a carer for, or the severity of dementia or other physical illnesses in the family member being cared for.
Livingston G, Barber J, Rapaport P, et al. START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 2014;18(61).
This project was funded by the National Institute for Health Research HTA programme (project number 08/14/06).
Alzheimer’s Society. Carers: looking after yourself. London: Alzheimer’s Society; 2015.
NHS Choices. Dementia guide: Looking after someone with dementia. London: NHS Choices; 2015.
NICE. Dementia costing report: Implementing NICE SCIE guidance in England. London: National Institute for Health and Care Excellence; 2006.
NICE. Support for commissioning dementia care. London: National Institute for Health and Care Excellence; 2013.
NICE. Dementia: supporting people with dementia and their carers in health and social care. London: National Institute for Health and Care Excellence; 2006.
RCN. Dementia – supporting carers. London: Royal College of Nursing; 2015.
Stanford Medicine. Intervention manuals. Stanford (MA): Stanford Medicine; 2015.
Produced by the University of Southampton and Bazian on behalf of NIHR through the NIHR Dissemination Centre