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Alzheimer’s disease (AD) and other neurodegenerative diseases such as Parkinson’s disease (PD) and Huntington’s disease (HD) are associated with progressive cognitive, motor, affective and consequently functional decline considerably affecting Activities of Daily Living (ADL) and quality of life. Standard assessments, such as questionnaires and interviews, cognitive testing, and mobility assessments, lack sensitivity, especially in early stages of neurodegenerative diseases and in the disease progression, and have therefore a limited utility as outcome measurements in clinical trials. Major advances in the last decade in digital technologies have opened a window of opportunity to introduce digital endpoints into clinical trials that can reform the assessment and tracking of neurodegenerative symptoms. The Innovative Health Initiative (IMI)-funded projects RADAR-AD (Remote assessment of disease and relapse—Alzheimer’s disease), IDEA-FAST (Identifying digital endpoints to assess fatigue, sleep and ADL in neurodegenerative disorders and immune-mediated inflammatory diseases) and Mobilise-D (Connecting digital mobility assessment to clinical outcomes for regulatory and clinical endorsement) aim to identify digital endpoints relevant for neurodegenerative diseases that provide reliable, objective, and sensitive evaluation of disability and health-related quality of life. In this article, we will draw from the findings and experiences of the different IMI projects in discussing (1) the value of remote technologies to assess neurodegenerative diseases; (2) feasibility, acceptability and usability of digital assessments; (3) challenges related to the use of digital tools; (4) public involvement and the implementation of patient advisory boards; (5) regulatory learnings; and (6) the significance of inter-project exchange and data- and algorithm-sharing.

Additional file 1. GRIPP 2 short form.

Additional file 4 . Domain-Based Measures of Wellbeing and Their Use in Dementia (n = 35). Data: Tabulated and synthesised findings.

Additional file 1. Summary Example of Search Strategy (at Step 2; Application of Well-Being Concepts to Dementia). Data: Summarised search results.

Additional file 2. Review of Reviews - Lived Experiences of Well-Being and Quality of Life in Dementia: Key Findings and Themes. Data: Tabulated and synthesised findings.

Background: With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge.Objective: The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research.Methods: Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databasesResults: According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies.Conclusions: Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them.

Background. Involving people with dementia as researchers is a relatively new element to Patient and Public Involvement (PPI) and there is little research in this area. This study aims to identify the benefits, the risks and the practical challenges of peer-research and to develop a model of good-practice in peer-research with people with dementia. Methods. We ran a systematic search on PsycInfo, PubMed and Google Scholar. We included articles focusing on health and social care research and which are empirical investigations or discussion papers on peer-research. Given the limited literature in the field of dementia, we included studies on peer-research with populations of service users who share similar demographics (older people), experience of stigma (mental health service users) and exclusion from research (people with learning disabilities). We applied no restrictions on language and publication date. Analysis. We synthesised data into three themes: the potential benefits, the potential risks and the practical challenges of peer-research. We developed a model of good practice. The European Working Group of People With Dementia (EWGPWD) reviewed our paper to comment on and add to the findings. Results. We included 7 papers. Potential benefits of peer-research included obtaining enriched data and empowering people with dementia. Potential risks included the power differential between researchers and issues of representativeness. The practical issues for good practice included the training of peer-researchers, defining involvement and roles, working effectively with cognitive impairment and considering resource implications. The EWGPWD emphasised the need for training and the importance of equality issues. Conclusion. Involving people with dementia in peer-research can generate several benefits, including empowerment and opportunities for inclusion for the peer-researchers and the research participants living with dementia, challenging academics’ traditional views on Di Lorito 2016 Pre print version 3 research processes and gathering enhanced research data. However, there remains a need for further research on the impact of peer-research in dementia studies.