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 randomised 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. Conclusion: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.

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.

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.

Background: Receiving a diagnosis of dementia can affect all aspects of an individual's life, including their sense of identity. As a consequence, some people with dementia may socially withdraw due to stigma, embarrassment or fear of what might happen if other people were to find out about the diagnosis. The "Who to tell, how and when" intervention, a group-based face-to-face intervention, has been developed for people affected by dementia who are fearful of disclosing the diagnosis to others. This study aims to adapt the existing intervention for online delivery, in light of the ongoing COVID-19 pandemic.Methods: A co-created, user-centred design in three phases is applied. In phase 1, focus groups conducted with people with dementia and informal caregivers will inform the platform, features and adaptation of pre-existing material. Phase 2 consists of the development of the digital prototype. In phase 3, the feasibility and usability are tested with end users to inform prototype v. 2.0.

Background Dementia, to a certain degree in the early stages, can be a concealable condition. People with dementia often feel stigmatized and choose not to disclose their diagnosis to others. While concealing the diagnosis can prevent further stigmatization, it can also contribute to psychological consequences and limited social support, and prevent access to services and resources. The decision to disclose a concealable diagnosis is personal and complex, and a nuanced understanding of this decision is of great relevance to practitioners and researchers. This review examines factors influencing the decision to disclose or conceal a diagnosis of dementia to or from others, including individuals’ attitudes and experiences regarding disclosure or concealment. Method The protocol of this review has been registered on PROSPERO (CRD42020192495). A systematic literature search was conducted in the MEDLINE, PsycINFO, Embase, Emcare, CINAHL and Scopus databases. Search terms related to ‘disclosure’ or ‘concealment’, and ‘dementia’. Any research design was included and no date or language restrictions were applied. The methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool (MMAT). Data was analyzed by means of thematic synthesis. Result A total of sixteen studies published between 2000 and 2020 were included in the systematic review. Factors associated with disclosure and concealment were regrouped into codes and themes related to stigma, interpersonal relationships, personal identity, sense of control, privacy, symptom visibility, and advocacy and awareness. People with dementia may anticipate negative responses from others when they disclose their diagnosis to them, but reactions are often positive. Conclusion Results of this review suggest that the decision to disclose or conceal a diagnosis of dementia to or from one’s social network is highly individual and complex. People with dementia may often want to disclose, but do not know how. Raising awareness in the general public may support individuals in making optimal decisions about disclosure. Findings of this review will inform an empowerment intervention supporting disclosure decision‐making in people with dementia.