Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.

Sustaining the capabilities of dementia carers is a global priority. ‘iSupport’ is a self-guided online intervention designed by the World Health Organization (WHO) to reduce mental health problems in dementia carers. iSupport is undergoing global implementation, however there is an absence of effectiveness evidence. This study tested the effectiveness of iSupport to reduce distress and depression in dementia carers. A pragmatic randomised controlled trial was conducted in three centres. Adult carers (18+) living in the community were recruited in England, Wales and Scotland and randomly assigned (1:1) through a web-based system to iSupport or usual care. Outcome assessors were masked to allocation. The primary outcomes assessed the difference in distress and depression between baseline and six-months. The target sample size was 350 to enable 90% power, significance at 2.5% including 25% attrition (262 completers) on either outcome. Analysis followed the intention-to-treat (ITT) principle. The trial was registered with ISRCTN registry (17420703). Between 12th November 2021 and 31st March 2023,177 carers (50.3%) were randomised to usual care and 175 (49.7%) to iSupport. 263 (74.7%) completed the trial. All were included in the ITT analysis. Mean distress scores at six-months were 20.0 (SD = 8.3) for usual care and 20.6 (SD = 8.6) for iSupport. The mean difference was 0.16 (95% CI −1.17 to 1.49, p = 0.29) after adjusting for covariates. Mean depression scores at six-months were 9.5 (SD = 7.0) for usual care and 9.8 (SD = 6.5) for iSupport. The mean difference at six-months was −0.54 (95% CI = −1.70 to 0.62, p = 0.44). No serious adverse events were linked to the trial. To our knowledge this is the largest trial evaluating a self-guided online intervention in UK dementia carers, and the first to successfully evaluate the effectiveness of iSupport. The null findings are significant given the ongoing global implementation of iSupport by the WHO and the adoption of self-guided interventions into mainstream care delivery as part of digital health transformations. NIHR.

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a “whole-family approach” (as a pathway to identification), “not a carer” (self/family identification), a postcode lottery (high variability of support services), tailored support that is “fit for purpose”, and the “power” of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not “fit for purpose”.

Supporting dementia carers is a global priority. As a Randomised Controlled Trial (RCT) (n = 352) of the Word Health Organization recommended, an internationally disseminated ‘iSupport’ e-health intervention was conducted, revealing no measurable benefits to the wellbeing of adult dementia carers. This process evaluation contributes original insights of the trial outcomes. Its aims were to ascertain the usability and acceptability of iSupport, participant engagement and adherence to iSupport, and contextual factors influencing its implementation and potential impact. The process evaluation followed a mixed-method design. The following data were collected from all participants randomised to iSupport (n = 175): (1) post-intervention evaluation questionnaire (n = 93) containing the 10-item System Usability Scale and bespoke items exploring acceptability, engagement, and perceived impact; (2) qualitative interviews (n = 52) with a sub-sample of participants who were purposively sampled according to age, scores on the outcome measures, and gender, as these interviews aimed to generate contextual detail and explanatory accounts; and (3) ‘Access’ data from the iSupport platform (n = 175). Descriptive statistics was used to report on the frequency of survey responses whilst a thematic analysis approach was followed to identify themes from the qualitative interview data. Data sets were analysed independently and then used with respect to one another in order to generate explanatory pathways related to the usability, acceptability, and the impact of iSupport. Despite good trial retention, 8.3% of participants (n = 32) did not spend any time on iSupport, and 54% (n = 94) spent between 30 min and 1.5 h. Factors driving this were the following: time constrains, method of delivery, and content characteristics. Positive impacts of iSupport were also described. Participants, including those with extensive caring experience, reported how iSupport had made them feel reassured, valued, and more able to ask for help. They also reported having an improved outlook on their caring role and on the needs and feelings of the person living with dementia. Research and practice should focus on exploring blended delivery, including self-directed and interactive components, such as regular contact with a health professional. These insights are critical for supporting the global implementation and adaptation of iSupport and offer valuable directions for future research.

Background: Informal carers are critical in looking after people with dementia. The value of all informal care as a total in the United Kingdom is now estimated to be £184 billion (US $249 billion). However, many carer groups are inadequately supported and face poor mental and physical health with limited opportunities for physical activity. There is a public health priority to address such challenges and a lack of innovation regarding approaches to promote physical activity. Objective: This study aimed to co-design, adapt, and explore the feasibility of a novel cross-platform approach to support physical activity among carers of people with dementia. Methods: Project stages included a co-design phase followed by a feasibility study guided by both the reach, effectiveness, adoption, implementation, and maintenance and Medical Research Council complex intervention frameworks. Co-design involved 3 development “sprints,” gaining feedback from a range of stakeholders (eg, carers, support professionals, charities, researchers, and developers) and identifying priority areas. Our feasibility study involved the evaluation of our recruitment, intervention, and outcome approaches over 8 weeks (target population: N=50) with participants. Participants were recruited from local community networks in Scotland as well as research study registries. Results: We successfully co-designed, developed, and user tested the CareFit app. Final app design included a simplified navigation system and increased delivery of video content as well as a more personalized delivery approach. In total, 41 carers of people with dementia were recruited, with 21 (51%) completing the 8-week study. Study retention was considerably lower for carers with higher levels of physical activity at baseline as opposed to those with lower levels (5/14, 36% vs 16/27, 59%, respectively). CareFit was rated as “acceptable” on the System Usability Scale, and we observed common user patterns of behavior (eg, an initial focus on the Learn section). The feasibility study results demonstrated that the intervention appeared safe for use (no adverse events reported) and the video content for carers was well received. A greater depth of social elements appears critical for future development. Although professional stakeholders did not reach consensus on the outcome of greatest utility, the outcome measures tested were largely suitable for future use in this group, including novel sedentary behavior and muscle and balance measures. Conclusions: Many carers of people with dementia do not have the same access to physical activity as noncarers. Our findings show key challenges regarding recruitment and retention. Although we cannot currently recommend progression to a randomized controlled trial, we conclude that further work is needed to better understand the “active ingredients” of the intervention outlined. This includes exploring the delivery of a preventative intervention earlier in the carer trajectory—something critical for adoption and long-term use. International Registered Report Identifier (IRRID): RR2-10.2196/53727

Background: Physical activity is a critical component of both well-being and preventative health, reducing the risk of both chronic mental and physical conditions and early death. Yet, there are numerous groups in society who are not able to undertake as much physical activity as they would like to. This includes informal (unpaid) carers, with the United Kingdom national survey data suggesting that 81% would like to do more physical activity on a regular basis. There is a clear need to develop innovations, including digital interventions that hold implementation potential to support regular physical activity in groups such as carers. Objective: This study aims to expand and personalize a cross-platform digital health app designed to support regular physical activity in carers of people with dementia for a period of 8 weeks and evaluate the potential for implementation. Methods: The CareFit for dementia carers study was a mixed methods co-design, development, and evaluation of a novel motivational smartphone app to support home-based regular physical activity for unpaid dementia carers. The study was planned to take place across 16 months in total (September 1, 2022, to December 31, 2023). The first phase included iterative design sprints to redesign an initial prototype for widespread use, supported through a bespoke content management system. The second phase included the release of the “CareFit” app across Scotland through invitations on the Apple and Google stores where we aimed to recruit 50 carers and up to 20 professionals to support the delivery in total. Partnerships for the work included a range of stakeholders across charities, health and social care partnerships, physical activity groups, and carers’ organizations. We explored the implementation of CareFit, guided by both Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) and the Complex Intervention Frameworks. Results: Project processes and outcomes were evaluated using mixed methods. The barriers and enablers for professional staff to signpost and use CareFit with clients were assessed through interviews or focus groups and round stakeholder meetings. The usability of CareFit was explored through qualitative interviews with carers and a system usability scale. We examined how CareFit could add value to carers by examining “in-app” data, pre-post questionnaire responses, and qualitative work, including interviews and focus groups. We also explored how CareFit could add value to the landscape of other online resources for dementia carers. Conclusions: Results from this study will contribute new knowledge including identifying (1) suitable pathways to identify and support carers through digital innovations; (2) future design of definitive studies in carer populations; and (3) an improved understanding of the Reach, Effectiveness, Adoption, Implementation, and Maintenance across a range of key stakeholders. International Registered Report Identifier (IRRID): DERR1-10.2196/53727