There is a paucity of research studies exploring the changes to social connectedness of people diagnosed with bvFTD and their families, from the premorbid to late stages of the condition. The purpose of this exploratory study was to establish how and why social connectedness changed for the study families over the progression of bvFTD. Social citizenship was selected as the conceptual framework and case study research as the methodology. Five families living with the effects of bvFTD volunteered for the research, and each person with the diagnosis was in the middle/late stages of the condition. Data was collected from the case study families and contacts, using a range of data collection tools (semi structured interviews; document review; diaries and participant observations). Thematic analysis was selected to examine the data collected from each family (within case analysis) and then the findings were compared and contrasted with the other families studied (cross case analysis). Six themes were identified from the collected data: i).“Why are they behaving like this?:Finding a reason; ii).“What is happening to our family? Changing family relationships.; iii).“Other people are noticing”; iv).“Getting a diagnosis”; v).“Now we know what it is.” and vi). “Grief and loss”. Findings indicated that relationships and social connectedness deteriorated in the pre diagnosis stage, and families stated it was largely due to the behavior, personality and social functioning changes of their family member, and the belief that these changes were intentional. By the time a diagnosis was given, the relationships and social connectedness had broken down to such a degree that they could not be rebuilt. The families described how they were no longer invited to social events in the same way as before and their social network reduced significantly. The families also stated that they tended to withdraw from social networks and events due to the embarrassment caused by their family member’s changed behavior. In conclusion, if bvFTD was recognized, diagnosed and specialist advice and support, given earlier by practitioners it could enable families to understand the effects of bvFTD on their family member’s behaviour. This could enable the family to retain relationships and connectedness, develop coping strategies, build resilience and prevent crises. Recommendations for clinical practice: i) increased training for medical practitioners, health and social care staff regarding early recognition and diagnosis of bvFTD; ii) specialist post diagnostic support offered immediately after diagnosis, and iii) awareness raising through campaigns which could include workplace awareness training.

The aim of the study was to develop a participatory research model drawing from qualitative research about the lifeworld perspectives of people with early-stage dementia. Twelve participants with early-stage dementia were recruited from a compensatory adult school VUK (Voksenskolen for Undervisning og Kommunikation) in Denmark. They were trained in research skills to enable them to conduct a participatory research project in collaboration with the researcher. During the study, the participants informed the research project and the participatory research model. A combination of participant observations, interviews and focus groups were used with observations and interviews being conducted before the research skills' training to enable the researcher to plan the training and the participatory research project in accordance with the participants´ competencies and challenges. Data were analysed from a hermeneutic phenomenological perspective inspired from the work of Max Van Manen. The focus groups were used both during the training and the participatory research project and video data from these were analysed by a thematic analysis inspired by Braun and Clarke. The participatory research model illustrates the importance of recruiting and gaining consent from people with early-stage dementia in a way which takes into consideration the needs of the participants. It can be necessary to both adjust the recruitment strategy and the consent form. In order to allow them to be involved as active research participants, it is essential to plan and establish a research project which reflects the participants´ individual cognitive challenges. To simplify the project and establish small project groups can be supportive. Also role agreements are vital. It is essential to train and support them in different ways throughout the research process and, among other strategies; it is useful to have an errorless inspired learning environment with a structure that is repeated. Furthermore, it is important to evaluate continually to ensure the most constructive process throughout and focus groups can prompt more in-depth answers by the participants. The participants also need support and structure provided by the researcher in any dissemination phase. Furthermore, the researcher needs to invest in the interaction with the participants to establish trusting committed constructive research collaboration from the beginning. It is also important that the researcher balances the roles of being a researcher and a supporter together with being a teacher and a learner when collaborating with people with early-stage dementia. It is about balancing the power in the relationship. Furthermore, the researcher has to support the participants own peer-learning and -support together with creating a relaxed atmosphere. The participatory research model “Balanced Participation” takes these considerations into account, with the result that more people with early-stage dementia will be able to be involved in future qualitative participatory research.