TY - JOUR
T1 - Exploring access to community care and emergency department use among people with dementia
T2 - A qualitative interview study with people with dementia, and current and bereaved caregivers
AU - Williamson, Lesley E.
AU - Sleeman, Katherine E.
AU - Evans, Catherine J.
N1 - Funding Information:
We would like to thank all public representatives who generously gave their time and valuable insight to inform this study, including (with permission): Allison Butcher, Denise Davies, Dr H Adeel, Mair Graham, Martin Robertson, Mohammad Jasimuddin, Rashmi Kumar, Teresa/Dory Davies, and members of the Cicely Saunders Institute Patient and Public Involvement forum. This paper represents independent research funded by the Alzheimer's Society (AS‐CP‐18‐002), Cicely Saunders International, The Atlantic Philanthropies, and the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London (BRC‐1215‐20018). Professor Katherine Sleeman is funded by an NIHR Clinician Scientist Fellowship (CS‐2015‐15‐005) and is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. Professor Catherine Evans is supported by Health Education England and the National Institute of Health Research (HEE/NIHR Senior Clinical Lectureship, ICA‐SCL‐2015‐01‐001). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Funding sources were not involved in the conduct of the research, preparation of the article or decision to submit it for publication.
Publisher Copyright:
© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.
PY - 2023/7/24
Y1 - 2023/7/24
N2 - Objectives: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia. Methods: Informed by critical realism, semi-structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation. Results: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70–89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a ‘push system’, (2) ED as the ‘last resort’, and (3) Taking dementia ‘seriously’. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma. Conclusion: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life-limiting condition may help to reduce reliance on the ED through essential development of post-diagnostic care, from diagnosis to the end of life.
AB - Objectives: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia. Methods: Informed by critical realism, semi-structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation. Results: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70–89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a ‘push system’, (2) ED as the ‘last resort’, and (3) Taking dementia ‘seriously’. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma. Conclusion: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life-limiting condition may help to reduce reliance on the ED through essential development of post-diagnostic care, from diagnosis to the end of life.
KW - dementia
KW - emergency department
KW - healthcare access
KW - qualitative interviews
KW - reflexive thematic analysis
KW - United Kingdom
UR - http://www.scopus.com/inward/record.url?scp=85165550734&partnerID=8YFLogxK
U2 - 10.1002/gps.5966
DO - 10.1002/gps.5966
M3 - Article
C2 - 37485729
AN - SCOPUS:85165550734
SN - 0885-6230
VL - 38
JO - International Journal of Geriatric Psychiatry
JF - International Journal of Geriatric Psychiatry
IS - 7
M1 - e5966
ER -
