by Dr Hannah Christie, Maastricht University
eHealth, which the World Health Organisation defines as “the use of information and communication technologies for health”, provides a potential solution for supporting people with dementia. eHealth interventions have been shown to increase self-efficacy and dementia caregiving knowledge, as well as reduce symptoms of depression and anxiety in caregivers. Many of the most effective eHealth interventions make use of a ‘blended’ approach, combining online support with face-to-face coaching and interventions.
Two thirds of informal caregivers of people with dementia are under the age of 65. As a result, many have worked with computers in the workplace and studies show that the majority of informal caregivers of people with dementia have interest in and positive attitudes towards internet-based approaches. At the health care system level, benefits of eHealth include its potential to widen service access to more remote areas, improvement of service efficiency, and the reduction of costs.
Covid-19 and dementia
eHealth as a potential solution to facilitate access to dementia caregiving support is even more crucial in the context of the current Covid-19 pandemic. A recent article in The Lancet on the impact of Covid-19 on people with dementia and their caregivers advised care professionals to organise psycho-education, self-management, and consultations for dementia caregivers online. A survey of 1,000 Dutch caregivers of people with dementia by Alzheimer Netherlands showed that the Covid-19 pandemic has resulted in the cancellation of day care services for people with dementia, as well as insufficient professional and social support. 83% of caregivers say that they feel overburdened by this and 55% report needing more support. Caregivers mentioned digital contact, such as video chatting or WhatsApp messaging, as one of the solutions that currently helps them the most. It is fair to say that now, more than ever, there is a need to provide caregivers of people with dementia with good online support options.
The implementation problem
Unfortunately, previous research into psychosocial interventions to support informal caregivers of people with dementia has shown that less than 3% of evidence-based interventions are implemented into practice. In large part, this is due to a lack of information on barriers and facilitators to their implementation and translation into clinical practice.
What happens to promising, evidence-based eHealth for dementia: A study
Our recent study aimed to gain insight into whether and how eHealth interventions for caregivers of people with dementia found their way from research into practice. By following up on 12 eHealth interventions for caregivers of people with dementia that had been included in a previous systematic review exploring their effectiveness in improving caregiver outcomes, we were able to shed light on what has happened to promising, evidence-based eHealth interventions for caregivers of people with dementia, after their effectiveness trials.
A first important finding was that 10 out of 12 included interventions were no longer available to use. The long-term implementation of the two available interventions was achieved through long- term aid from an external funding body. This underscored the fact that, in contrast to other industries (such as the pharmaceutical industry), there is no clear pathway to acquire the funding necessary to market and implement effective eHealth interventions for dementia caregivers into practice. To accomplish this, policymakers and funding bodies should dedicate more funding to the sustainable and long-term implementation of evidence-based eHealth interventions for dementia caregivers. In addition, researchers should consider more flexible and time efficient research designs. These can include small studies with well-defined and significant research questions, quasi-experimental designs, the use of big data, and the continuous enhancement of interventions.
Take home message
Now, in the context of the Covid-19 pandemic, there is a greater need than ever to provide caregivers of people with dementia with online support options. However, there is still much work to be done in optimising research designs, methods, and measures, in order to bring promising, evidence-based eHealth options to the market and into practice.
Future research should focus on monitoring and evaluating the continued implementation of the interventions within implementing organisations, drawing inspiration from industry techniques for evaluation (such as pop-up questions and continuous user data analysis). We should also invest more in implementation research, by evaluating the relative effectiveness of implementation strategies and, of course, implementing these acquired implementation lessons.
This study was a collaboration between the Alzheimer Center Limburg at Maastricht University and MindTech at the University of Nottingham. This research was carried out as part of the H2020 Marie Skłodowska-Curie Actions Innovative Training Network (ITN) action, H2020-MSCA-ITN-2015, under grant agreement number 676265.