Cargando…

End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers

BACKGROUND: Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of da...

Descripción completa

Detalles Bibliográficos
Autores principales: Armstrong, Melissa J., Alliance, Slande, Taylor, Angela, Corsentino, Pamela, Galvin, James E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542529/
https://www.ncbi.nlm.nih.gov/pubmed/31145749
http://dx.doi.org/10.1371/journal.pone.0217039
_version_ 1783422952399699968
author Armstrong, Melissa J.
Alliance, Slande
Taylor, Angela
Corsentino, Pamela
Galvin, James E.
author_facet Armstrong, Melissa J.
Alliance, Slande
Taylor, Angela
Corsentino, Pamela
Galvin, James E.
author_sort Armstrong, Melissa J.
collection PubMed
description BACKGROUND: Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB. METHOD: We conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes. RESULTS: Thirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. CONCLUSIONS: Study results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care.
format Online
Article
Text
id pubmed-6542529
institution National Center for Biotechnology Information
language English
publishDate 2019
publisher Public Library of Science
record_format MEDLINE/PubMed
spelling pubmed-65425292019-06-17 End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers Armstrong, Melissa J. Alliance, Slande Taylor, Angela Corsentino, Pamela Galvin, James E. PLoS One Research Article BACKGROUND: Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB. METHOD: We conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes. RESULTS: Thirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. CONCLUSIONS: Study results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care. Public Library of Science 2019-05-30 /pmc/articles/PMC6542529/ /pubmed/31145749 http://dx.doi.org/10.1371/journal.pone.0217039 Text en © 2019 Armstrong et al http://creativecommons.org/licenses/by/4.0/ 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 author and source are credited.
spellingShingle Research Article
Armstrong, Melissa J.
Alliance, Slande
Taylor, Angela
Corsentino, Pamela
Galvin, James E.
End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers
title End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers
title_full End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers
title_fullStr End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers
title_full_unstemmed End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers
title_short End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers
title_sort end-of-life experiences in dementia with lewy bodies: qualitative interviews with former caregivers
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542529/
https://www.ncbi.nlm.nih.gov/pubmed/31145749
http://dx.doi.org/10.1371/journal.pone.0217039
work_keys_str_mv AT armstrongmelissaj endoflifeexperiencesindementiawithlewybodiesqualitativeinterviewswithformercaregivers
AT allianceslande endoflifeexperiencesindementiawithlewybodiesqualitativeinterviewswithformercaregivers
AT taylorangela endoflifeexperiencesindementiawithlewybodiesqualitativeinterviewswithformercaregivers
AT corsentinopamela endoflifeexperiencesindementiawithlewybodiesqualitativeinterviewswithformercaregivers
AT galvinjamese endoflifeexperiencesindementiawithlewybodiesqualitativeinterviewswithformercaregivers