Adherence to Online Interventions for Family Caregivers of People With Dementia: A Meta-Analysis and Systematic Review.

OBJECTIVE: Online interventions hold promise in supporting the well-being of family caregivers and enhancing the quality of care they provide for individuals with long-term or chronic conditions. However, dropout rates from support programs among specific groups of caregivers, such as caregivers of people with dementia, pose a challenge. Focused reviews are needed to provide more accurate insights and estimates in this specific research area. METHODS: A meta-analysis of dropout rates from available online interventions for family caregivers of people with dementia was conducted to assess treatment acceptability. A systematic search yielded 18 studies involving 1,215 caregivers. RESULTS: The overall pooled dropout rate was 18.4%, with notable heterogeneity indicating varied intervention adherence. Interventions incorporating human contact, interactive features, and personalization strategies for specific types and stages of dementia predicted significantly lower dropout rates. Methodological assessment revealed variability in study quality. CONCLUSION: Findings support the effectiveness of social support, personalization strategies, and co-design in enhancing intervention adherence among dementia family caregivers. Further research is needed to explore factors influencing dropout rates and conduct robust trials to refine the implementation of future interventions.

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia.

OBJECTIVES: People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure. METHODS: Community-dwelling adults living with dementia in the Netherlands (n = 40) and England (n = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses. RESULTS: Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends. CONCLUSIONS: The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation.

Peer support through video meetings: Experiences of people with young onset dementia.

BACKGROUND: People with young onset dementia can experience stigmatization and social isolation. Peer support provides an opportunity for social connection and support. However, access to in-person peer support groups varies across the UK, and during the COVID-19 pandemic in-person peer support groups moved online. OBJECTIVES: We explored the experiences of people with young onset dementia attending peer support meetings through online videoconferencing platforms, and identified barriers and facilitators. METHODS: A focus group study with existing peer support groups for people with young onset dementia that had their meetings online was conducted. Participants were people living with young onset dementia. Participants were recruited through convenience and purposeful sampling. Initial contact was made with the group facilitator to discuss the study purposes and assess eligibility of the group members. The data was analysed thematically by two independent researchers, using an inductive approach. FINDINGS: Four focus groups with UK-based peer support groups were conducted through the group's usual platform, including 20 participants. Through online peer support people stayed connected during the pandemic. It provided opportunities to meet people from different places and be involved in research projects. People found it a convenient way of connecting with others without having to travel. However, some missed in-person interaction and digital exclusion and challenges to navigate different platforms were identified as barriers. Organisational skills of the facilitator and support with getting into meetings can help overcome these challenges. CONCLUSION: Online platforms can make peer support more accessible for people with young onset dementia as it overcomes geographical barriers as well as barriers for those who feel uncomfortable attending an in-person group. Researchers and policy makers should explore how to implement and overcome barriers to online peer support, so that peer support is more widely accessible and clearly signposted to people with young onset dementia.

Randomized controlled feasibility study of FindMyApps: first evaluation of a tablet-based intervention to promote self-management and meaningful activities in people with mild dementia.

OBJECTIVES: We tested the feasibility, implementation strategy and mechanism of impact of FindMyApps. FindMyApps is a tablet intervention consisting of a selection tool to help people with dementia find usable apps for self-management and meaningful activities, including training to support informal carers in employing errorless learning principles to help people with dementia learn tablet and tool usage. METHODS: We conducted an exploratory, pilot randomized controlled trial with a mixed-methods design. Twenty persons with mild dementia and carer dyads were randomly assigned to the FindMyApps group (n = 10), receiving either the FindMyApps training and selection tool, or a control condition (n = 10), receiving only a short tablet training. Pre- and post-test measurements at a three month follow-up, consisted of questionnaires and post-test semi-structured interviews. RESULTS: The FindMyApps tool was mostly perceived as useful and easy to use. Persons with dementia were generally able to learn how to use the tool, though they regularly needed support from informal carers. Persons with dementia found apps through the tool, which they used regularly. Persons with dementia and informal carers were positive about the training and support they received. No significant differences were found on outcome measures of persons with dementia, but based on effect sizes FindMyApps is a promising intervention. CONCLUSIONS: Qualitative results indicate that the FindMyApps intervention has the potential to positively influence the self-management abilities and engagement in meaningful activities of people with dementia. Remarks are made to improve the intervention and recommendations are given for future effectiveness studies.Implications for rehabilitationThe person-centred tablet intervention FindMyApps has the potential to positively influence the self-management and engagement in meaningful activities in people with dementia.Based on the input of persons with dementia and informal carers, the FindMyApps intervention and study procedure will be further improved and evaluated in terms of effectiveness in an RCT.