A systematic review of internet-based interventions aimed at supporting family carers of people with dementia
Providing care for someone with dementia is one of the most difficult forms of caring. Informal carers of people with dementia experience high levels of depression, emotional distress and physical strain. However, the support and attention that they receive remains inadequate. Only around 10% of informal caregivers access face-to-face support, with the difficulty of leaving the person with dementia an important barrier. Use of the internet to meet the needs of family carers is an option to close the ‘support gap’. The objective of this systematic review was to identify and understand the core components of existing digital interventions designed to support family caregivers of people with dementia.
We conducted a systematic review of studies of a digital intervention that provided support or education for informal caregivers of people with dementia. All study designs were included where outcomes covered the effectiveness or usability of an intervention. A systematic search was conducted in CINAHL, the Cochrane Library, EMBASE, MEDLINE, PSYCHINFO and Web of Science. Citation tracking was conducted using Google Scholar and reference lists were hand searched. Similar literature reviews on the topic were identified and included papers were checked to ensure all relevant articles were identified.
34 articles were included, which reported on 28 interventions. Study types included eight RCTs, ten quasi-experimental studies, four qualitative studies and twelve studies with mixed methodology. The articles were of variable quality, with many being pilot studies with small sample sizes. Many suffered high attrition rates and problems with high risk of bias including selection, reporting and detection bias. Five main themes were identified as core components of the interventions: peer support, which was delivered mostly via forums or private e-mail; contact with a health or social care professional, usually via private e-mail; provision of information about dementia, caring and local services via text, videos or audio; decision support for difficult decisions faced by carers; and psychological support using either relaxation techniques or more formal psychological therapies. A variety of tools were used to deliver these interventions, including educational modules, coaches, diaries, homework, quizzes and online interaction with others.
The review provided an understanding of the core components included in internet-based interventions for informal caregivers, and demonstrated particular value in multi-component interventions. This understanding will assist in the content, design and delivery of future such interventions. However, the limited quality of the studies and description of the interventions made it difficult to conclude which specific components were most effective in providing support. The evidence base for internet-based interventions for caregivers of people with dementia remains limited and further high quality studies are needed.