Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD often experience stigma, putting them at a higher risk of social isolation. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and as a result many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers, and offers a variety of platforms and modes of communication. This study aimed to explore how people with YOD experience online peer support, identify potential barriers to online peer support, and get insights into how online peer support can be optimized. The findings were used to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for facilitators of online peer support groups.

This study was conducted between October 2019 and December 2022. It followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage. The study consisted of multiple sub-studies, which all contributed to the Best Practice Guidance. The sub-studies included literature reviews, focus groups, an online survey, and interviews. All participants were people living with YOD.

Participants described online peer support as their lifeline which gave them hope and a sense of purpose again, after an often very difficult diagnostic and post-diagnostic period. For people in rural areas or who were unable to travel, online was the only way in which they could connect with their peers. However, many were unaware that online peer support exists, what it entails, and how they could get involved. This indicates a need for better advertisement of and signposting to (online) peer support.

Online peer support can be beneficial for people with YOD. The Best Practice Guidance provides people with YOD with evidence-based information on what online peer support entails, facilitators with guidelines on how to optimize online peer support for people with YOD, and healthcare professionals with an opportunity to signpost people with YOD to online peer support.

DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver.

In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle.

All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps.

There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.

INDUCT (Interdisciplinary Network for Dementia Using Current Technology), and DISTINCT (Dementia Inter-sectorial strategy for training and innovation network for current technology) are two Marie Sklodowska-Curie funded International Training Networks that aimed to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia.

In INDUCT (2016-2020) 15 Early Stage Researchers worked on projects in the areas of Technology to support everyday life; technology to promote meaningful activities; and healthcare technology. In DISTINCT (2019-2023) 15 Early Stage Researchers worked on technology to promote Social health in three domains: fulfilling ones potential and obligations in society, managing one’s own life, and participation in social and other meaningful activities.

Both networks adopted three transversal objectives: 1) To determine practical, cognitive and social factors needed to make technology more useable for people with dementia; 2) To evaluate the effectiveness of specific contemporary technology; 3) To trace facilitators and barriers for implementation of technology in dementia care.

The main recommendations resulting from all research projects are integrated in a web-based digital Best Practice Guidance on Human Interaction with Technology in Dementia which was recently updated (Dec 2022 and June 2023) and will be presented at the congress. The recommendations are meant for different target groups, i.e. people in different stages of dementia, their (in)formal carers, policy makers, designers and researchers, who can easily find the recommendations relevant to them in the Best Practice Guidance by means of a digital selection tool.

The INDUCT/DISTINCT Best Practice Guidance informs on how to improve the development, usage, impact and implementation of technology for people with dementia in various technology areas. This Best Practice Guidance is the result of intensive collaborative partnership of INDUCT and DISTINCT with academic and non-academic partners as well as the involvement of representatives of the different target groups throughout the projects.

Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.

Pre–post interventional mixed methods study.

Online videoconference group program for carers across the UK held in 2021.

Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators.

The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions.

We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2.

Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression.

The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.