A comparison of four dementia palliative care services using the RE-AIM framework.
Community Care
Community Services
Dementia
Palliative Care
Journal
BMC geriatrics
ISSN: 1471-2318
Titre abrégé: BMC Geriatr
Pays: England
ID NLM: 100968548
Informations de publication
Date de publication:
19 10 2023
19 10 2023
Historique:
received:
22
06
2023
accepted:
22
09
2023
medline:
23
10
2023
pubmed:
20
10
2023
entrez:
19
10
2023
Statut:
epublish
Résumé
Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned. A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services. The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place. An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.
Sections du résumé
BACKGROUND
Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned.
METHODS
A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services.
RESULTS
The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place.
CONCLUSIONS
An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.
Identifiants
pubmed: 37858076
doi: 10.1186/s12877-023-04343-w
pii: 10.1186/s12877-023-04343-w
pmc: PMC10585827
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
677Informations de copyright
© 2023. BioMed Central Ltd., part of Springer Nature.
Références
Int J Geriatr Psychiatry. 2011 Jan;26(1):12-20
pubmed: 21157846
Front Neurol. 2021 Sep 06;12:612416
pubmed: 34552545
Dementia (London). 2020 Oct;19(7):2484-2493
pubmed: 30348011
Dementia (London). 2018 Feb;17(2):252-257
pubmed: 28905647
J Pain Symptom Manage. 2008 May;35(5):499-507
pubmed: 18261878
J Am Geriatr Soc. 2009 Oct;57(10):1925-31
pubmed: 19702614
Ann Palliat Med. 2017 Oct;6(4):365-379
pubmed: 28754048
BMJ Support Palliat Care. 2020 Dec;10(4):e40
pubmed: 31239257
Front Public Health. 2019 Mar 29;7:64
pubmed: 30984733
Palliat Med. 2018 Mar;32(3):668-681
pubmed: 28922625
Arch Gerontol Geriatr Suppl. 2004;(9):155-62
pubmed: 15207409
BMC Health Serv Res. 2018 Mar 13;18(1):177
pubmed: 29534729
N Engl J Med. 2009 Oct 15;361(16):1529-38
pubmed: 19828530
Australas J Ageing. 2013 Jun;32(2):91-6
pubmed: 23773247
BMC Med. 2017 May 18;15(1):102
pubmed: 28514961
Health Soc Care Community. 2020 Nov;28(6):1915-1927
pubmed: 32671922
BMC Palliat Care. 2017 Dec 08;16(1):68
pubmed: 29216873
Palliat Med. 2017 Apr;31(4):356-368
pubmed: 28094677
J Pain Symptom Manage. 2020 May;59(5):1019-1032.e1
pubmed: 31837451
J Pain Symptom Manage. 2014 Oct;48(4):660-77
pubmed: 24801658
Palliat Med. 2015 Sep;29(8):727-36
pubmed: 25783598
Soc Work Health Care. 2015;54(6):547-58
pubmed: 26186425
Age Ageing. 2022 Mar 1;51(3):
pubmed: 35333919
Arch Gerontol Geriatr Suppl. 2004;(9):431-6
pubmed: 15207444
Front Public Health. 2019 Nov 22;7:345
pubmed: 31824911
Implement Res Pract. 2022 Feb 10;3:26334895221077880
pubmed: 37091082
J Am Geriatr Soc. 2012 Feb;60(2):351-60
pubmed: 22332675
PLoS One. 2021 Dec 20;16(12):e0260506
pubmed: 34928972
Palliat Med. 2014 Mar;28(3):197-209
pubmed: 23828874
J Am Geriatr Soc. 2019 Mar;67(3):443-448
pubmed: 30675898
J Am Geriatr Soc. 2016 Nov;64(11):2288-2295
pubmed: 27590922
Isr J Health Policy Res. 2019 May 6;8(1):42
pubmed: 31060626
Int Psychogeriatr. 2015 Oct;27(10):1593-600
pubmed: 25672570
Am J Public Health. 1999 Sep;89(9):1322-7
pubmed: 10474547
J Am Med Dir Assoc. 2022 Dec;23(12):2015-2022.e5
pubmed: 35820492
BMC Palliat Care. 2022 Mar 9;21(1):32
pubmed: 35264118