Exploring and supporting everyday life with a rare dementia – understanding symptoms, developing strategies and sharing stories
Award Number
ES/W006014/1Award Type
FellowshipStatus / Stage
ActiveDates
1 October 2021 -1 October 2023
Duration (calculated)
02 years 00 monthsFunder(s)
ESRC (UKRI)Funding Amount
£103,351.00Funder/Grant study page
ESRCContracted Centre
University College LondonPrincipal Investigator
Dr Emma HardingPI Contact
emma.harding@ucl.ac.ukPI ORCID
0000-0001-9675-2335WHO Catergories
Tools and methodologies for interventionsUnderstanding risk factors
Disease Type
Posterior Cortical Atrophy (PCA)CPEC Review Info
| Reference ID | 393 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | ES/W006014/1 |
|---|---|
| Status / Stage | Active |
| Start Date | 20211001 |
| End Date | 20231001 |
| Duration (calculated) | 02 years 00 months |
| Funder/Grant study page | ESRC |
| Contracted Centre | University College London |
| Funding Amount | £103,351.00 |
Abstract
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.
Aims
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.