In 2018, around 1 million people were living with dementia in the United Kingdom, of whom almost 53,000 were younger than 65 years [1]. When someone is diagnosed before the age of 65 years, this can be defined as young onset dementia (YOD) [2]. People with YOD often face different challenges compared to those faced by older adults with dementia [3,4]. People with YOD are more likely to be in employment at the time of their diagnosis [5,6]. Difficulties at work and a YOD diagnosis can lead to (forced) early retirement, which has financial [7,8] and social [5,9] consequences, as this results in a loss of income as well as a loss of contact with colleagues. The loss of work can be perceived as a personal loss, as work is associated with involvement in meaningful activities and one’s identity [9,10]. Furthermore, people with YOD are more likely to fulfill an active parenting role toward dependent children. Changes in family structures can be experienced as losing one’s identity as a parent and being a burden to the family [7,11]. Additionally, people with YOD often experience a decrease in their social contacts and report losing touch with friends [7], which can be the result of a lack of understanding of YOD in the wider society. Stigmatization can result in the avoidance of social situations, which increases the risk of social isolation and loneliness [5,9,12]. These findings illustrate the unique challenges that people with YOD face when compared to those of older adults with dementia.

The social health framework looks at health within the social domain and includes the following three dimensions: (1) the ability to fulfill potential and obligations, (2) the ability to manage life with some level of independence, and (3) the ability to participate in social activities and work [13]. Dröes et al [14] suggest that when focusing on coping strategies and finding a balance between limitations and the abilities that one still has, people can adapt to living with dementia and still live meaningful and satisfying lives.

Peer support could improve all 3 dimensions of social health; hence, the social health framework will be used as the theoretical foundation for our study. Peers are people who have similar life experiences or health conditions [15,16]. First, peer support can be a way for people with YOD to stay socially connected and reduce the risk of isolation [17]. Besides offering a space for social connection, peer support creates opportunities to be involved in a variety of activities, such as creative and music-related activities, or with advocacy, research, and policy making, thereby allowing people to choose something that is meaningful to them. This relates to the dimension “the ability to participate in social activities and work” [13]. Second, through peer support, people can receive and provide support and share the unique knowledge that they have because of their own personal experiences of living with YOD. This knowledge is also called experiential knowledge and can include tips and tricks on how to manage dementia in daily life as well as information about support services [18,19]. This relates to the dimension “the ability to manage life with some level of independence” [13]. Third, the reciprocal nature of peer support and the opportunity to support others can increase feelings of empowerment [15,19,20]. This relates to the dimension “the ability to fulfill potential and obligations” [13]. Moreover, the work of Rabanal et al [21] and Stamou et al [22] shows that peer support can make the postdiagnostic experience more positive and can help people with YOD identify age-appropriate support services.

People with YOD often experience difficulties in accessing local, age-appropriate support services, including opportunities for peer support [23,24]. Mayrhofer et al [23] show that support services for people with YOD vary widely across the United Kingdom. Additionally, services are often short-term because of project-based funding or because of services being offered as part of pilot studies [23], making it difficult for people with YOD to locate long-term, local, and age-appropriate (peer) support services [21]. As a result, a large group of people with YOD may miss out on the benefits of peer support, which could negatively impact their postdiagnostic experiences and social health.

A potential solution could be online peer support, such as support from social media, discussion forums, blogs, or video meetings, as it overcomes geographical barriers [25]. This benefit could make online peer support particularly useful for people who do not have access to local, age-appropriate peer support services or are unable to travel. Additionally, not everyone with YOD may feel ready to share their diagnoses and experiences with others. Online peer support allows people to engage in peer support from the comfort of their own homes, potentially lowering the barrier to join a peer support group. Finally, some people may experience challenges with speech due to their dementia symptoms. Online peer support can offer a variety of text-based (eg, social media and discussion forums) options, but it can also offer verbal (eg, video meetings) options for people who prefer those. Thus, online peer support could potentially make peer support accessible to a wide range of people and meet different needs and preferences.

Although previous studies showed how people with dementia use web-based platforms to connect with peers and exchange support, it remains unknown how users perceive this type of support, how such support impacts their daily lives, and what elements make online peer support meaningful [26-29]. Additionally, while previous research has been conducted into the experiences of facilitators of a variety of online peer support communities (eg, research by Coulson and Shaw [30] and Saha et al [31]), to our knowledge, this type of research has not been conducted in the field of dementia.

Our study aims to develop (1) a best practice guidance on online peer support for people with YOD, so that people have access to evidence-based and tailored information about online peer support, and (2) best practice guidelines for facilitators of online peer support, so that they have access to tailored and evidence-based information that can be used to improve online peer support for people with YOD.

The study aims to answer the following research questions:

Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions [32]. The study focuses on the development stage of the Medical Research Council framework and develops a plan for the feasibility/piloting, evaluation, and implementation stages. Each phase consists of multiple substudies. Phases 1, 2, and 3 contribute to the development of the best practice guidance, including the guidelines for facilitators. Phase 4 consists of disseminating the best practice guidance and guidelines and developing a plan for a potential future pilot study, evaluation, and further implementation and dissemination. An overview of all 4 phases can be found in Figure 1.

The study received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248).

All participants will provide informed consent before participating in any part of the study. Participants of a web-based survey will be asked to confirm that they have read and understand the study information and that they are happy to proceed before they can continue to the questions. Participants who fill in a paper copy or go through it verbally will be asked to do the same. The completion and submission of the survey will be taken as consent. For participants taking part in an individual interview or a focus group, consent will be taken remotely. This is due to the potentially wide range of geographic locations of participants and COVID-19 restrictions. There are 3 ways through which participants can provide consent, as follows: (1) signing a paper consent form and sending it back to the researcher, (2) signing a digital consent form and sending it back to the researcher, or (3) going through a verbal consent process with the researcher over a phone or video call. The members of the research team who are responsible for conducting the consent procedures have all undergone training on the Mental Capacity Act [33].

The individual interviews and focus groups will be conducted remotely through Microsoft Teams, the group's usual meeting platform, or a phone call. The interviews and focus groups will be audio recorded with a University of Nottingham–approved recording device, and focus groups will be screen recorded via the videoconferencing platform. The recordings will be transcribed verbatim by a professional transcribing company that has an agreement with the University of Nottingham. Once the transcripts are completed, the recordings will be permanently deleted. The transcripts will leave out any information that could be used to identify a person. The recordings and transcripts will be stored on a password-secured, web-based storage space of the University of Nottingham.

During the design process of the study, people with YOD, carers, and health and social care professionals working with people with YOD were consulted. Senior members of the research team have extensive clinical experience in working with people with YOD and experience with patient and public involvement, cocreating research projects, and collaborating with people with dementia and their carers. Throughout the study, regular patient and public involvement consultations with people with YOD and health and social care professionals working with people with YOD will be conducted to discuss the progress of the study and study documents. All participants can receive the initial findings of the parts of the study in which they participated and provide further input on the analysis and findings before they get published.

The aim of this phase is to review the existing academic and grey literature on online peer support. The findings will set the foundation for the next phases and inform the first draft of the best practice guidance. This phase consists of the following two substudies: (1) a narrative synthesis systematic review on online peer support for adults with chronic neurodegenerative conditions and (2) a grey literature review on online peer support for people with dementia. Through the systematic literature review, successful elements of online peer support will be identified. Through Google searches and searches of websites of dementia organizations, the grey literature review will provide insights into the information that is available regarding online peer support for people living with dementia and how much of this information is tailored toward YOD.

Peer support can be a valuable source of support and make a positive impact on the postdiagnostic experiences of people with YOD [21,22]. This suggests that everyone living with YOD should have access to such support. Yet, research shows that many people with YOD experience difficulties with accessing age-appropriate (peer) support services [23,24]. Online peer support could be a solution. Although the nature of dementia symptoms can pose challenges to the use of technology, with the right guidance and support, many people can overcome such challenges and successfully use technology as a support tool in their daily lives. During the COVID-19 pandemic, many health and social care services have been disrupted and have moved to the internet, highlighting how important it is for people with dementia to be able to use technology [36]. However, for people with dementia to have better access to online peer support, the necessary guidance and support tools should be in place and be easy to access.

A best practice guidance on online peer support could raise awareness on the availability of this form of support, how to access it, and what it could provide to people. It could also help people to decide whether online peer support is something that could be helpful and, if so, which form of online peer support would be most suitable for them. Furthermore, best practice guidelines for facilitators will be developed to support them in improving online peer support and ensuring that such support meets the needs and wishes of people with YOD.

The main strength of our study is that it addresses the inconsistent availability of health and social care services for people with YOD in the United Kingdom. Furthermore, the study includes people with YOD and health and social care professionals working with people with YOD throughout all phases. However, while online peer support overcomes geographical barriers and offers opportunities for international communication, the advertisement of and recruitment for the study will be conducted within the United Kingdom. Therefore, the findings will be specific to the UK context, and one should be cautious when generalizing the findings to other countries. Furthermore, some people may be unable to access online peer support for a variety of reasons, such as experiencing dementia symptoms that limit one’s ability to use technology or not having the (financial) resources for such support.

People with YOD often experience different challenges compared to those of older adults with dementia and therefore need age-appropriate support. Peer support can contribute to a more positive postdiagnostic experience and every dimension of the social health framework. However, many people with YOD experience a lack of age-appropriate (peer) support services in their local area, indicating that online peer support could be a solution. Although research into online support for people with dementia is increasing, it remains unknown how users perceive this type of support, how such support impacts their daily lives, and what elements make it meaningful. Our study aims to explore how people with YOD use and experience online peer support and how online peer support can be improved. The findings will lead toward the development of a best practice guidance on online peer support that provides people with YOD with tailored and evidence-based information about online peer support. The guidance will also include guidelines for peer support facilitators who are aiming to improve existing online peer support opportunities and develop new online peer support opportunities.