Supporting people who care for adults with dementiaBMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f6691 (Published 25 November 2013) Cite this as: BMJ 2013;347:f6691
- 1Geriatric Memory Clinic, Department of Social Services and Health Care, Laakso Hospital, Helsinki, FIN-00099, Finland
- 2Unit of Primary Health Care, Department of General Practice and Primary Health Care, Helsinki University Central Hospital and University of Helsinki, Helsinki, Finland
Family members who care for relatives with dementia perform an important service and save the healthcare system a considerable amount of money.1 However, they do so at substantial cost to themselves. Care givers have a higher rate of depression, anxiety, impaired health, and mortality than adults without this caring role.1 2 Our healthcare system focuses on patients, and services are based around the person with dementia. However, the problems and needs in caregiving families are highly intertwined, and more attention should be paid to helping the carers.
Several non-pharmacological interventions have been shown to improve outcomes for both the givers and receivers of care.2 3 4 In a linked paper (doi:10.1136/bmj.f6276), Livingston and colleagues report findings from the START study, which evaluated a new intervention model aimed entirely at carers. The new trial and its associated cost effectiveness analysis advance our understanding of how to alleviate carers’ affective symptoms, such as depression, and improve their quality of life in a cost effective manner.5 6 An intervention that included education, information, and behavioural management techniques provided statistically significant and clinically relevant benefits. Carers who received the package, delivered in eight sessions by trained and supervised psychology graduates, had significantly less clinical depression during follow-up than controls who received usual care. They also reported significantly better quality of life. The intervention had neutral effects on patients with dementia.
This trial has several strengths. It is well designed and thoughtfully planned, from the objectives through to the content of the intervention and the fidelity of its delivery. Livingston and colleagues based their intervention on an existing programme for carers, adapting and developing it for the health system in the United Kingdom, and using a psychoeducational intervention known to be effective for carers.7 The new elements of their approach include individual instead of group based therapy3; active involvement of participants, including homework and reflection2 8; careful training of the people delivering the intervention; and a thorough follow-up of their performance. The intervention was proactive—as well as supporting carers with affective symptoms it was designed to prevent further depression. The fidelity of the intervention was studied in detail and adherence of participants was good. The fact that the intervention was delivered during home visits may have been key in ensuring adherence.9 Training psychology graduates to deliver the intervention probably contributed to overall cost effectiveness.
The START programme is pragmatic, and the intervention is well described in a detailed manual. The trial’s findings are likely to be generalisable—at least in the UK. However, the model may be culture specific and it needs to be tested in other countries. In addition, implementing and disseminating the intervention widely could be laborious, requiring careful training and tutoring of professionals charged with delivery.10 Future trials should explore whether professionals other than psychology graduates can implement the intervention with the same fidelity and effectiveness.
What is the right target group for the START programme? Livingston and colleagues designed a trial with minimal exclusion criteria, so the programme seems to benefit carers with a broad range of characteristics. However, with limited resources we have to make choices. Carers at greatest risk of depression may have the most to gain from this kind of therapy.
Primary care doctors who care for older people in the community are in the best position to identify care givers at risk. Targeting interventions at the care givers rather than solely at adults with dementia would require a substantial shift in clinical practice. Carers would be our clients and patients, not just a resource in dementia care. This has to be recognised and thoroughly discussed.
Patients with dementia are currently the main target group for our services—accounting for nearly 90% of the services used by these families and their associated costs.9 10 However, the service needs of care givers and care recipients are difficult to isolate from each other because of the intertwined needs of these families.1 In a cost effectiveness analysis, Knapp and colleagues reported economic outcomes for care givers only.6 They aim to report the use of services by patients with dementia after longer term follow-up, and the results will be interesting. How carers’ improved coping is translated into the service needs of the whole family remains to be seen.
How does START fit into the dementia care continuum? It will be one new and important element in a comprehensive and complicated palette of care. The programme benefits carers by preventing and alleviating their depressive symptoms, and possibly also their anxiety and experience of abusive behaviour. In that continuum we already have additional care models that alleviate caregivers’ stress and enhance their physical health, as well as others that specifically help the patients themselves.2 4 Choosing the right model for an appropriate target group and tailoring the treatment to individual families are the key determinants of success for any intervention.
Cite this as: BMJ 2013;347:f6691
Competing interests: We have read and understood the BMJ Group policy on declaration of interests and declare the following interests: None.
Provenance and peer review: Commissioned; not externally peer reviewed.