Waddington, C;
Clements, H;
Crutch, S;
Davis, M;
Glenister, J;
Harding, E;
Thompson, EH;
... Stott, J; + view all
(2025)
‘Dementia has got two faces’: grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophy.
Aging and Mental Health
10.1080/13607863.2025.2502793.
(In press).
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Abstract
Background: research on grief in people with primary progressive aphasia (PPA) and posterior cortical atrophy (PCA), is limited, despite the unique challenges these individuals face due to lack of understanding of their condition, younger age at onset and atypical symptom profile. The current study explores the losses people living with PPA or PCA experience and what helps to navigate these losses. Methods: in-depth semi-structured research conversations were conducted with 14 participants (n = 8 PCA, 6 PPA) to explore experiences of grief and loss related to their dementia. Data was analysed using abductive thematic coding techniques. Results: the impact and navigation of loss is reflected across five interconnecting themes: what I have lost, am losing and will lose, shared and unique sense of loss, balance between what is lost and what remains, changes in relationships and what helps in navigating loss. Conclusions: the dynamic interplay between what participants had lost and what they held on to carries significant implications for the design and delivery of support. These findings will be used alongside existing grief theory and interventional frameworks to develop a psychosocial intervention for people living with dementia.
| Type: | Article |
|---|---|
| Title: | ‘Dementia has got two faces’: grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophy |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1080/13607863.2025.2502793 |
| Publisher version: | https://doi.org/10.1080/13607863.2025.2502793 |
| Language: | English |
| Additional information: | © 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. |
| Keywords: | Qualitative, dementia, grief, posterior cortical atrophy, primary progressive aphasia |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10209340 |
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