Title: Exploring and supporting everyday life with a rare dementia - understanding symptoms, developing strategies and sharing stories
Funder: Economic and Social Research Council

Abstract: This fellowship will help me to establish my academic track record and develop my research profile, initially by publishing three key papers. My PhD focussed on understanding the lived experience of Posterior Cortical Atrophy (PCA) - a rare dementia mostly affecting vision - using in-depth interviews and home-based observations. As well as writing up my findings, this fellowship will allow me to establish links for future collaborations and to create educational resources for the patient and professional groups my PhD research involved. Publications will include: 'Finding What Works': patient-reported compensatory strategies in PCA A paper describing the 'tried and tested' patient-reported strategies people with PCA and their families use to manage the debilitating and atypical symptoms. Being a rare dementia, there is currently a limited evidence-base for effective compensatory strategies in PCA, but there is a wealth of 'expert-by-experience' knowledge within the PCA community that my PhD research offered unprecedented insight into. 'Into the Ordinary': lessons learned observing people with dementia at home A second paper describing lessons learned during the novel focused ethnographic observations I conducted in people's homes, outlining recommendations for other researchers looking to integrate a rich volume of ecologically valid data from a range of sources. This will build on an invited chapter in APA's Qualitative Methods in Psychology: Expanding Perspectives in Methodology and Design (due for publication June 2021). Enabling embodied action: diversifying the discourse for different types of dementia A third paper will add to current theoretical discussions which promote taking an embodied approach to enabling the relational citizenship of people living with dementia (the right to act with agency and in connection with others). In highlighting the specific challenges people with dementia-related visual impairment have with embodied actions, this paper will diversify the discourse about what it means to live with dementia. Enriching perceptions in this way will continue the awareness-raising legacy of two multidisciplinary projects my PhD research was embedded within (ESRC-NIHR funded 'Seeing What They See'; Wellcome funded 'Created Out of Mind'). Engagement and Impact: I will offer talks and Q&A sessions at some of Rare Dementia Support's (RDS) >25 regional support groups, which bring together those affected by PCA to discuss challenges and strategies and to hear the latest research updates. I will present my PhD findings at conferences and training events for the different practitioner audiences involved in supporting people at all stages of the PCA journey (e.g. optometrists, GPs and care home staff). I will engage occupational therapist, psychologist and other professional networks through the new RDS online professional member forum. This will inform practice and offer opportunities to build cross-disciplinary links for future collaborations. I will update the PCA module of the Future Learn 'Many Faces of Dementia' online course, supplementing the biomedical perspective by highlighting the socioemotional impacts of PCA. This course has been accessed by >75,000 learners to date from a range of professional, academic and lay perspectives. Developing content for this platform will offer a more rounded perspective on the impact of rarer dementias and will also offer me exposure as a researcher at the important but underpopulated intersection of rare neurodegenerative disease and lived experience. Research capacity and teaching: I will develop a series of projects for the 2021/22 MSc student cohort drawing on the physiological, neuropsychological, video and other qualitative data banked during my PhD observations. This will maximise participant's contributions, further build on the exploratory mixed methods data integration processes I outlined in my thesis, and develop my supervisory skills.

Lay abstract: What this fellowship will achieve: This fellowship will reveal and communicate what people living with posterior cortical atrophy (PCA) experience living with this debilitating condition day-to-day. PCA is a rare dementia mostly affecting vision which usually has a young age of onset. It leads to significant problems with seeing what and where things are and causes profound difficulties with all sorts of daily activities including reading, driving and dressing. My PhD research has shown that people living with PCA face a convoluted and stressful diagnostic journey, as the symptoms are unusual and many health professionals are unfamiliar with the condition. With this fellowship I will communicate these experiences to the relevant health professional audiences to ensure they are better equipped to notice and support those living with any kind of dementia-related visual impairment. My PhD also highlighted that post-diagnosis, there is a lack of guidance about how to manage PCA symptoms and as a result, individuals and families are really creative and responsive, embarking on a process of ongoing problem-solving, continually adapting to the progressive symptoms in order to help the person with PCA to stay as independent as possible and engaged in the activities that matter to them. This fellowship will allow me to consolidate and share this wealth of knowledge with other individuals and families navigating a diagnosis of PCA, as well as the health and social care professionals supporting them. This will not only help people with PCA to live more independently and improve wellbeing, but will also instil a sense of confidence and connection in reminding them they are among a community of peers, all keeping going through similar challenges. My PhD research involved in-depth interviews and all-day observations in the homes of people living with PCA and more typical, memory-led Alzheimer's disease (AD), during which I collected video and audio recordings, measures of wellbeing and functioning, and physiological data including heartrate and activity levels. This combination and volume of data hasn't before been collected in the homes of people with different dementias and there are numerous possibilities for further data analysis in collaboration with researchers from a range disciplines (e.g. speech and language therapy, physiology), which this fellowship will give me the opportunity to pursue. Why it is important: Visiting people at home made this study very accessible and inclusive for people with dementia as they were observed in an environment in which they were most comfortable, familiar and able. Another important next step will be to share not only what I found in my PhD research but also what I learned while doing it, to encourage others to do research at home with people living with dementia, to make sure that future findings are representative of and relevant to the real lives of people living with different dementias and their families. Looking at the bigger picture, the sharing of my findings and further data analysis this fellowship will allow me to do is important because Alzheimer's disease (AD) is often misperceived as a disease that solely affects memory. Dementia-related visual impairment is poorly understood and often neglected, perhaps because in more typical memory-led AD, visual symptoms often occur at the later stages of the condition, at a time when people are less able to clearly explain and recall their symptoms and any perceptual challenges. This has real implications for how care is delivered on the ground, e.g. a person with later stage AD may be thought to have "forgotten" their cup of tea when they may actually be unable to perceive it. Sharing more about the impacts of dementia-related visual impairment and how people adapt and adjust, has significant implications for service development, and in the longer term, potential to maximise the independence, coping and wellbeing of those affected.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL