Podcast: Remotely delivered information, training and support for informal caregivers of people with dementia

Alongside many Cochrane reviews of treatments for people with dementia, there are some that look at the effects of interventions that might help the people who care for them. These were added to in January 2021 with a new review of interventions designed to be delivered remotely. Here’s one of the authors, Jenny McCleery from the Oxford Health NHS Trust in England, to tell us about the findings.

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Monaz: Hello, I'm Monaz Mehta, editor in the Cochrane Editorial and Methods department. Alongside many Cochrane reviews of treatments for people with dementia, there are some that look at the effects of interventions that might help the people who care for them. These were added to in January 2021 with a new review of interventions designed to be delivered remotely. Here's one of the authors, Jenny McCleery from the Oxford Health NHS Trust in England, to tell us about the findings.

Jenny: Most people with dementia are cared for at home by a member of their family and, although there can be positive aspects to caregiving, it can also pose many challenges and may have negative consequences for the caregiver. The difficulties of caring for someone with dementia have been magnified by the COVID-19 pandemic and its associated measures, because many people with dementia and their caregivers have lost access to their usual support networks. This makes it especially important to know if interventions for family caregivers which are delivered remotely, by telephone or over the internet, are effective. 
For the review, we identified three types of component for the intervention and used these to categorise the evidence. These components were, firstly, information - this aims to increase caregivers' knowledge about dementia; secondly, training - that is helping caregivers to practice important skills for successful caring; and thirdly, support - that is providing an opportunity to share experiences and feelings with other people.
We found 26 trials with nearly 2400 participants to include in our review. In all of the trials, some of the caregivers were randomised to receive a remotely delivered intervention that involved information with training or support or both. 12 of the studies compared this group with another group of caregivers randomised to usual care, or some non-specific contact with researchers. In the other 14 studies, the comparison group were given information about dementia, but no training or support. About half the studies used the telephone and about half used the internet to deliver the interventions.
When we looked at the comparison of information, training and support interventions with usual care or usual services, we found that there was probably little or no effect on caregivers' overall burden, depressive symptoms or quality of life. But, in our second comparison, when we compared interventions involving training, support or both with provision of information alone, we found that the combined interventions may slightly reduce caregiver burden, probably reduce depressive symptoms but may have little or no effect on quality of life. We also found that caregivers receiving interventions involving training or support were more likely to drop out of the studies. We cannot be sure why this was, but it is possible that taking part in the interventions was itself a burden to some caregivers.
These results suggest that, in settings where social and health resources are well developed and available to caregivers of people with dementia, these remote interventions may not add significantly to usual care. However, these also raise several further questions, which will need to be answered by new research: How does the effect of remotely delivered interventions compare to similar interventions delivered face-to-face? What was caregivers' experience of the interventions? Are there particular components of interventions, or ways of delivering them, that might make them more effective? And, finally, how would these types of intervention perform in low or middle income countries with different health and social care services, or in situations - such as during the COVID-19 pandemic - where caregivers have reduced access to usual care?

Monaz: If these, and other questions are answered by new research this will be incorporated into updates of the review but, in the meantime, if you'd like to find out more the review is available online. Just go to Cochrane Library dot com and search 'remote interventions for dementia carers' to find it.

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