There are an estimated 55 million people currently living with dementia, globally. Unfortunately, care after a diagnosis is not streamlined and most people do not receive the care they need. There are many barriers to receiving external care and support, which includes where people live, their ethnic and socio-economic background, their levels of awareness of services, their type of dementia diagnosis, and many more (Stephan et al., 2018; Watson et al., 2021). So, having a family carer is often much needed for people with dementia to remain living independently at home for as long as possible.
Not everyone has a family carer though, or a friend or neighbour who takes on that unpaid carer role. And where unpaid carers do, in the UK at least, they provide care worth £13.8 billion, annually, for dementia alone. Let that sink in for those who have not heard that number before – £13.8 billion. Each year. That number is only rising with a growing number of people living with dementia.
So it only seems right that every single unpaid carer receives support themselves as well. Unfortunately, unpaid carers are often also not receiving that support, which can be the awareness of what to expect with dementia, emotional and mental health support, but also sufficient respite care and paid home care to enable the carer to have some time off from caring and avoid burnout. Together In Dementia Everyday (TIDE) is a Charity which supports dementia carers specifically, providing free training and support, which in return also provides benefits to people with dementia. If you have not heard of TIDE before, have a look, and if you are a carer you can join for free.
These difficulties in getting the right support were already in place prior to the pandemic. Now, the pandemic has only exacerbated these issues and has shone a stark spotlight on the lack of adequate and equitable social care access for those with dementia and unpaid carers. Since the very beginning, support services suddenly closed down due to face-to-face restrictions (Giebel, Pulford, Cooper et al., 2021). This left people with dementia and their unpaid carers at a loss, and the sudden withdrawal of vital external support was linked to faster deteriorations of dementia symptoms as early as April (Giebel, Cannon, Hanna et al., 2021).
Slowly but gradually, support services have adapted to provide remote support (phone or Zoom or similar) where possible. However, many people with dementia who are more cognitively impaired and in the more advanced stages struggled setting up and engaging with technology, again relying on a family carer to facilitate remote support (i.e. Giebel, Hanna, Callaghan, et al., 2021). There are also reports, however, of how much more adapted people with dementia have become since the pandemic (Talbot & Briggs, 2021 preprint). Remote support is not the answer, and can only provide a lifeline where face-to-face support is not possible. However, for people leading busy lives sometimes remote support can be beneficial. There are a growing number of studies out there looking at online interventions for family carers for example (Teles et al., 2022). As opposed to having to go somewhere, organising travel etc, and care for their relative, unpaid carers may access interventions from the comfort of their own home. But just how effective are these types of interventions, and how do they help family carers?
In this blog, I am looking at a recent systematic review and meta-analysis on the effects of an online support intervention for family carers of people with dementia (Etxeberria et al., 2021). The authors systematically synthesised the evidence on online intervention for family carers, enabling us to better understand just how effective these are.
Searches for this systematic review and meta-analysis were conducted between January 2014 and July 2018 on five different databases. The authors followed PRISMA guidance, and after duplicates were removed from all search results, at least two team members reviewed citations at Stage 1 (title and abstract) and full papers (Stage 2).
Studies were included if they were in English or Spanish and reported on the effectiveness of an online intervention for family carers of people with dementia. Only randomised controlled trials (RCTs), quasi-experimental designs and pilot studies were included. However, as you will note in the limitations section, the authors decided then to exclude all pilot studies. All included studies were rated for their level of evidence using the Clinical Practice Guidelines. This relates to whether a study was an RCT for example or a cohort study. The authors did not assess the quality of included studies.
The meta-analysis focused on continuous outcome measures, and combined outcomes of burden, anxiety, depression and competence. Random effect models were then used to establish the significance of an effect size.
A total of 10 RCTs and quasi-experimental studies were included in the review, narrowed down from originally 1,192 studies. All interventions included informative and interactive content, with four exploring cognitive behavioural strategies for carers, and three looking at coping with dementia. Interventions involved engaging with a professional online with fellow carers, social media, and patient monitoring. Dropouts across studies varied between 20% and 49%. Interventions lasted between 1 and 12 months with before and after assessments, and only one study conducted a 3-month follow-up.
Studies measured the impact of the interventions on depression, anxiety, stress, and/or burden, with all but stress found to be significantly improved in some studies, but not all. In the meta-analysis, only depression was found to be significantly reduced.
Despite the heterogenous nature of included studies, online interventions supporting carers of people with dementia can be effective and can address the psychological well-being of carers. It appeared that multi-component interventions, so those comprising for example different components of psychoeducation, engaging with professionals, and coping strategies, were most effective in addressing carers’ mental well-being. Interventions involving carers were reported to be linked to increases in self-confidence, as it also enabled carers to connect with peers and share their experiences.
Strengths and limitations
In terms of strengths, the systematic review followed PRISMA guidelines and was rigorous. This involved having at least two team members reviewing each paper at stage 1 and stage 2, as well as rating the quality of each included study.
There are a few limitations, however, too. I was missing details about when the searches were conducted. Evidence is only included up to July 2018, which may suggest that the searches were conducted then. However, this also raises the question of why searches were conducted four years ago (three years at the time of publication)? What about more recent evidence, especially given that the pandemic has resulted in an increase in remote delivered support. Interestingly, the authors refer to the fact that only 10 papers were found to be included in the end, and were surprised that no more studies were conducted in the past few years. Does this suggest they have not conducted recent searches up until the time of submission?
Looking at all papers included, the authors refer to ‘length restrictions’ as a reason for not evaluating 12 pilot studies and only 10 RCTs and quasi-experimental studies instead. Do the authors mean the word count of the journal?
Lastly, the first paragraph of the results merely refers to what Table 2 shows for example, as in the different types of characteristics of studies. It is a mere summary of the types of characteristics shown, as opposed to a summary of the characteristics of the studies.
Clearly, we would be able to rely more on the results of this review if there were more included studies, with more participants, longer follow-up, and more consistently measured outcomes. Combining such a heterogenous group of studies in a review is always a warning sign.
Implications for practice
Online support interventions for carers of people with dementia can be a useful resource to further support carers. We know from the pandemic that remote support is not the same as face-to-face support, but for those who do have internet access, it can offer easy logistical access to support, as opposed to having to travel somewhere and finding care for their relative with dementia. However, what about those without internet access or limited digital skills? That’s why support for carers cannot solely depend on online formats, but it can provide a great add-on to other forms of caregiver support. Considering the high levels of burden in many unpaid carers, and the sheer hours of unpaid care provided by family and friend carers, any way to improve support and care for carers in practice should be considered and implemented.
Statement of interests
Etxeberria I, Salaberria K, Gorostiaga A. (2021). Online support for family caregivers of people with dementia: a systematic review and meta-analysis of RCTs and quasi-experimental studies. Aging & Mental Health 2021;25:1165-1180.
Giebel C, Cannon J, Hanna K, et al. Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. Aging & Mental Health 2021;25(7):1281-1288.
Giebel C, Hanna K, Callaghan S, et al. Navigating the new normal: accessing community and institutionalised care for dementia during COVID-19. Aging & Mental Health 2021; doi: 10.1080/13607863.2021.1914545
Giebel C, Pulford D, Cooper C, et al. COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey. BMJ Open 2021;11:e045889.
Stephan A, Bieber A, Hopper L, et al. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatrics 2018; 18:131.
Talbot CV, Briggs P. The use of digital technologies by people with mild to moderate dementia during the COVID-19 pandemic: A positive technology perspective. PREPRINT: https://psyarxiv.com/d4qv8/
Teles S, Ferreira A, Paul C. Feasibility of an online training and support program for dementia carers: results from a mixed-methods pilot randomized controlled trial. BMC Geriatrics 2022;22:173.
Watson J, Giebel C, Green M, et al. Use of routine and cohort data globally in exploring dementia care pathways and inequalities: A systematic review. International Journal of Geriatric Psychiatry 2021;36(2):252-27.