| 107 5 Background Some people with dementia and their care partners have negative experiences of receiving a dementia diagnosis (1, 2). In addition, post-diagnostic information and support are often negative or lacking (3) or, if provided, have been criticised as failing to focus on quality of life (4). Being diagnosed with dementia is also associated with experiences of stigma and discrimination (5). Challenges can be even greater for people from culturally diverse backgrounds due to low health literacy (6), language barriers and cultural beliefs and practices and also for older LGBTQI individuals who have often faced a lifetime of discrimination (7). Hearing directly from people living with dementia about their diagnostic experiences could help to enhance evidence-based service delivery. Whilst it is now more common to include people with dementia in research, there remains various challenges to meaningfully engaging people with dementia in qualitative research. These include a reliance on direct questioning and recall within interviewing (8-11) which can pose challenges for people with dementia due to memory impairment and communication difficulties (12). Research approaches must also be careful to avoid the often distressing assessment processes and questioning of capacity which provide limited insight into people’s diagnostic experiences (11). Phillipson and Hammond (13) highlighted the potential benefits of methodologies such as case study (e.g.(14)), photovoice (e.g.(15)), and participatory action research (e.g. (16)) for promoting the involvement of people with dementia. Other researchers have made recommendations to improve the research process, including: support for researcher training; preparation and reflexivity; adaptations to consent processes; careful preparation; choosing comfortable environments; ensuring positive conclusions (17, 18); and the value of co-designing research approaches. Recommendations to improve data collection activities to maximise responses and assist people with dementia to tell their story have emphasised principles such as building rapport, asking open-ended questions, and avoiding direct questioning (18). However, following these principles can be challenging when relying only on verbal or text-based questionnaires and if researchers lack experience and training in alternative techniques (13). The use of case vignettes is one promising alternative to direct questioning, decreasing the reliance on participants recall of their personal experiences of dementia (19). There is also growing interest in qualitative visual data
RkJQdWJsaXNoZXIy MTk4NDMw