Exploring and supporting everyday life with a rare dementia - understanding symptoms, developing strategies and sharing stories

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.