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HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY

Frontotemporal dementia (FTD) is a common cause of young-onset neurodegenerative disease that causes progressive changes in behavior and personality. FTD is often diagnosed around age 60, creating complex care needs that result in caregivers of persons with FTD experiencing high rates of depression,...

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Autores principales: Fisher, Lauren, Massimo, Lauren, Hirschman, Karen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9766270/
http://dx.doi.org/10.1093/geroni/igac059.2050
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author Fisher, Lauren
Massimo, Lauren
Hirschman, Karen
author_facet Fisher, Lauren
Massimo, Lauren
Hirschman, Karen
author_sort Fisher, Lauren
collection PubMed
description Frontotemporal dementia (FTD) is a common cause of young-onset neurodegenerative disease that causes progressive changes in behavior and personality. FTD is often diagnosed around age 60, creating complex care needs that result in caregivers of persons with FTD experiencing high rates of depression, burden, and poor self-care. The iCare4Me for FTD study (NCT04686266) randomized 15 caregivers to receive a virtual health coaching intervention over 6 months (10 sessions) and 15 caregivers to the control group. To better understand the caregivers’ experience with the health coach intervention, two focus groups with intervention group caregivers (n=5) were held. Focus groups were recorded, transcribed and coded using content analysis. Caregivers reported the most valuable aspect was the relationship that was developed with their health coach. Caregivers particularly valued having someone to talk to who was outside their immediate social and support networks. It was noted the structured self-care curriculum served as a good backbone for discussions, but more specific coping conversations related to loss of patient empathy, prognostic uncertainty, and anticipatory grief are needed. One caregiver described being, “… awash in grief and it's affected my memory” while another described “grief is a big issue and I don't really find too many people understand it, because my husband is alive, but so many parts of him are gone”. These findings will be used to inform future studies utilizing health coaches for caregivers of persons with FTD. Implications for evidence-based virtual health coaching interventions with caregivers of persons living with FTD will be described.
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spelling pubmed-97662702022-12-20 HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY Fisher, Lauren Massimo, Lauren Hirschman, Karen Innov Aging Abstracts Frontotemporal dementia (FTD) is a common cause of young-onset neurodegenerative disease that causes progressive changes in behavior and personality. FTD is often diagnosed around age 60, creating complex care needs that result in caregivers of persons with FTD experiencing high rates of depression, burden, and poor self-care. The iCare4Me for FTD study (NCT04686266) randomized 15 caregivers to receive a virtual health coaching intervention over 6 months (10 sessions) and 15 caregivers to the control group. To better understand the caregivers’ experience with the health coach intervention, two focus groups with intervention group caregivers (n=5) were held. Focus groups were recorded, transcribed and coded using content analysis. Caregivers reported the most valuable aspect was the relationship that was developed with their health coach. Caregivers particularly valued having someone to talk to who was outside their immediate social and support networks. It was noted the structured self-care curriculum served as a good backbone for discussions, but more specific coping conversations related to loss of patient empathy, prognostic uncertainty, and anticipatory grief are needed. One caregiver described being, “… awash in grief and it's affected my memory” while another described “grief is a big issue and I don't really find too many people understand it, because my husband is alive, but so many parts of him are gone”. These findings will be used to inform future studies utilizing health coaches for caregivers of persons with FTD. Implications for evidence-based virtual health coaching interventions with caregivers of persons living with FTD will be described. Oxford University Press 2022-12-20 /pmc/articles/PMC9766270/ http://dx.doi.org/10.1093/geroni/igac059.2050 Text en © The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Abstracts
Fisher, Lauren
Massimo, Lauren
Hirschman, Karen
HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY
title HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY
title_full HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY
title_fullStr HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY
title_full_unstemmed HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY
title_short HEALTH COACHING FOR DEMENTIA CAREGIVERS: LESSONS LEARNED FROM THE ICARE4ME STUDY
title_sort health coaching for dementia caregivers: lessons learned from the icare4me study
topic Abstracts
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9766270/
http://dx.doi.org/10.1093/geroni/igac059.2050
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