Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia.
Caregivers
Dementia
Intervention
Lewy body disease
Peer mentoring
Journal
Parkinsonism & related disorders
ISSN: 1873-5126
Titre abrégé: Parkinsonism Relat Disord
Pays: England
ID NLM: 9513583
Informations de publication
Date de publication:
08 2023
08 2023
Historique:
received:
14
04
2023
revised:
07
06
2023
accepted:
16
06
2023
pmc-release:
01
08
2024
medline:
8
8
2023
pubmed:
30
6
2023
entrez:
29
6
2023
Statut:
ppublish
Résumé
Lewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input. We assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers' knowledge, dementia attitudes, and mastery. Using community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention. Thirty mentor-mentee pairs completed a median of 15 calls (range: 8-19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors' LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively). This LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers. https://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.
Sections du résumé
BACKGROUND
Lewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input.
OBJECTIVE
We assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers' knowledge, dementia attitudes, and mastery.
METHODS
Using community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention.
RESULTS
Thirty mentor-mentee pairs completed a median of 15 calls (range: 8-19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors' LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively).
CONCLUSIONS
This LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers.
TRIAL REGISTRATION
https://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.
Identifiants
pubmed: 37385161
pii: S1353-8020(23)00215-8
doi: 10.1016/j.parkreldis.2023.105492
pmc: PMC10527787
mid: NIHMS1912911
pii:
doi:
Banques de données
ClinicalTrials.gov
['NCT04649164']
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
105492Subventions
Organisme : NINDS NIH HHS
ID : K23 NS097615
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG064200
Pays : United States
Informations de copyright
Copyright © 2023 Elsevier Ltd. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of competing interest The authors declare that they have no competing interests.
Références
Proc Nutr Soc. 2004 Nov;63(4):655-60
pubmed: 15831139
JMIR Res Protoc. 2021 Sep 14;10(9):e31690
pubmed: 34238753
Int J Nurs Stud. 2014 Mar;51(3):359-69
pubmed: 23850390
Acta Psychiatr Scand. 1983 Jun;67(6):361-70
pubmed: 6880820
Health Soc Care Community. 2017 Mar;25(2):548-558
pubmed: 26970311
Prog Community Health Partnersh. 2013 Summer;7(2):171-84
pubmed: 23793248
Neurology. 2017 Jul 4;89(1):88-100
pubmed: 28592453
West J Nurs Res. 2022 Mar;44(3):227-238
pubmed: 34636259
J Biomed Inform. 2009 Apr;42(2):377-81
pubmed: 18929686
Alzheimers Res Ther. 2014 Apr 25;6(2):21
pubmed: 25031635
Am J Hosp Palliat Care. 2020 Sep;37(9):728-737
pubmed: 31902223
Patient Educ Couns. 2016 Feb;99(2):186-97
pubmed: 26463156
Evid Rep Technol Assess (Summ). 2004 Aug;(99):1-8
pubmed: 15460504
Res Aging. 2004;26(6):655-672
pubmed: 18504506
Lancet Neurol. 2019 Jan;18(1):88-106
pubmed: 30497964
Int J Nurs Stud. 2012 Apr;49(4):445-54
pubmed: 22036578
Parkinsonism Relat Disord. 2013 Nov;19(11):949-54
pubmed: 23835430
Int J Geriatr Psychiatry. 2016 Sep;31(9):1075-83
pubmed: 26765199
Alzheimer Dis Assoc Disord. 2023 Jan-Mar 01;37(1):50-58
pubmed: 36821177
Psychol Aging. 1991 Sep;6(3):392-402
pubmed: 1930756
JAMA. 1963 Sep 21;185:914-9
pubmed: 14044222
Parkinsonism Relat Disord. 2016 Mar;24:141-2
pubmed: 26786755
Gerontologist. 1969 Autumn;9(3):179-86
pubmed: 5349366
BMC Med Educ. 2022 Jun 28;22(1):506
pubmed: 35761252
Parkinsonism Relat Disord. 2022 Sep;102:68-76
pubmed: 35963046
Alzheimers Dement. 2019 Jul;15(7):899-906
pubmed: 31175026
Int J Geriatr Psychiatry. 2019 Oct;34(10):1421-1428
pubmed: 31050041
J Health Soc Behav. 1978 Mar;19(1):2-21
pubmed: 649936
Int J Geriatr Psychiatry. 2009 Dec;24(12):1453-62
pubmed: 19548267
BMC Geriatr. 2020 Apr 15;20(1):137
pubmed: 32293325
Alzheimer Dis Assoc Disord. 2023 Jan-Mar 01;37(1):42-49
pubmed: 36346930
Parkinsonism Relat Disord. 2013 Nov;19(11):975-9
pubmed: 23871587
Neurology. 1993 Nov;43(11):2227-9
pubmed: 8232934
Geriatr Nurs. 2015 May-Jun;36(3):197-201
pubmed: 25744557
JMIR Res Protoc. 2022 May 26;11(5):e34750
pubmed: 35481819
Mov Disord. 2010 Oct 15;25(13):2128-35
pubmed: 20824736
Am J Alzheimers Dis Other Demen. 2006 Dec-2007 Jan;21(6):391-7
pubmed: 17267370
Aging Ment Health. 2007 Nov;11(6):637-44
pubmed: 18074251
Semin Dial. 2018 Sep;31(5):455-461
pubmed: 29722062
Neurol Clin Pract. 2020 Aug;10(4):277-286
pubmed: 32983607
Arch Gerontol Geriatr. 2018 May - Jun;76:188-195
pubmed: 29547740
JMIR Form Res. 2022 Jul 29;6(7):e37108
pubmed: 35904843
Parkinsonism Relat Disord. 2023 Jan;106:105222
pubmed: 36446676
J Clin Nurs. 2023 Jun;32(11-12):2410-2418
pubmed: 35396757
NPJ Parkinsons Dis. 2022 Oct 15;8(1):133
pubmed: 36243820
PLoS One. 2017 Jul 6;12(7):e0180425
pubmed: 28683150
J Cancer Educ. 2021 Aug;36(4):710-718
pubmed: 31994006
Dementia (London). 2022 Jan;21(1):77-93
pubmed: 34171967
Mov Disord. 2004 Sep;19(9):1020-8
pubmed: 15372591
J Neurol Neurosurg Psychiatry. 2016 Nov;87(11):1218-1228
pubmed: 27521377
Gerontologist. 1990 Oct;30(5):583-94
pubmed: 2276631
J Mix Methods Res. 2010 Sep 20;4(4):342-360
pubmed: 22167325
Gerontologist. 2001 Oct;41(5):652-7
pubmed: 11574710
PLoS One. 2014 Apr 07;9(4):e93372
pubmed: 24710075