Nearly 7 million adults aged 65 and above in the United States live with Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD), and it is the fifth most common cause of death. Bereaved AD/ADRD informal caregivers report high rates of sleep disturbances that may impair daily functioning. Social support is a potentially modifiable resource fostering sleep quality; however, little is known regarding the contributing role of social support to sleep quality among bereaved AD/ADRD caregivers.
Objective:
This study explored the contributing role of social support to sleep quality among bereaved AD/ADRD caregivers posting to an online forum.
Methods:
A qualitative descriptive design addressed the research objective. We collated 1771 forum threads comprising 2 012 195 words posted by bereaved AD/ADRD caregivers on the ALZConnected forum (2011-2023). Posts related to sleep were extracted using the keywords “bed,” “dream,” “nap,” “sleep,” “slept,” “wake,” and “woke.”
Results:
A total of 178 threads contained information relevant to the contribution of social support to sleep quality in bereaved AD/ADRD caregivers. Using qualitative content analysis, we identified 3 themes: Restorative Function (Safe/Secure), Relational Identity Function (Belonging/Connection), and Comforting Presence Function (Warmth/Comfort).
Conclusion:
Findings further the understanding of the social context in which sleep quality in bereaved AD/ADRD caregivers is experienced. Findings from this study may inform clinical practice and research efforts aimed at enhancing sleep quality through social support in bereaved AD/ADRD caregivers.
RajanKBWeuveJBarnesLLMcAninchEAWilsonRSEvansDA.Population estimate of people with clinical Alzheimer’s disease and mild cognitive impairment in the United States (2020–2060). Alzheimer’s Dement. 2021;17(12):1966-1975. doi:10.1002/alz.12362
3.
GauglerJEJutkowitzEPetersonCMZmoraR.Caregivers dying before care recipients with dementia. Alzheimer’s Dement: Transl Res Clin Interv. 2018;4(1):688-693. doi:10.1016/j.trci.2018.08.010
4.
ToddSBarrSRobertsMPassmoreAP.Survival in dementia and predictors of mortality: a review. Int J Geriat Psychiatry. 2013;28(11):1109-1124. doi:10.1002/gps.3946
5.
O’DonnellMGBakerZG.“I have accepted my father’s death; i was not sad but relieved.” adaptive grief responses for bereaved dementia family caregivers: a scoping review. OMEGA - J Death Dying. 2023;0(0):302228231217334. doi:10.1177/00302228231217334
6.
JensenEJSupianoKPLuptakMAndersonTBeynonC.Resilience in bereaved caregivers of persons with dementia. J Gerontol Nurs. 2020;46(1):30-36. doi:10.3928/00989134-20191022-02
7.
ManevichARubinSSKatzMBen-HayunRAharon-peretzj.The two-track model of dementia grief and spousal response to illness and death. Death Stud. 2023;47(5):592-599. doi:10.1080/07481187.2022.2113479
8.
Van OrdenKAHeffnerKL.Promoting social connection in dementia caregivers: a call for empirical development of targeted interventions. Gerontologist. 2022;62(9):1258-1265. doi:10.1093/geront/gnac032
9.
CoreyKLMcCurryMK.When caregiving ends: the experiences of former family caregivers of people with dementia. Gerontologist. 2018;58(2):e87-e96. doi:10.1093/geront/gnw205
10.
CoreyKLMcCurryMKSetharesKABourbonniereMHirschmanKBMeghaniSH.Predictors of psychological distress and sleep quality in former family caregivers of people with dementia. Aging Ment Health. 2020;24(2):233-241. doi:10.1080/13607863.2018.1531375
11.
GibsonRHelmARossIGanderPBrehenyM.“I think I could have coped if I was sleeping better”: Sleep across the trajectory of caring for a family member with dementia. Dementia. 2023;22(5):1038-1056. doi:10.1177/14713012231166744
12.
von KänelRMausbachBTAncoli-IsraelS, et al. Sleep in spousal Alzheimer caregivers: a longitudinal study with a focus on the effects of major patient transitions on sleep. Sleep. 2012;35(2):247-255. doi:10.5665/sleep.1632
13.
GodzikC.Sleep disturbances in bereaved older people: a review of the literature. Ment Health Pract. 2021;24(2):15-21. doi:10.7748/mhp.2020.e1492
14.
AoyamaMSakaguchiYFujisawaD, et al. Insomnia and changes in alcohol consumption: Relation between possible complicated grief and depression among bereaved family caregivers. J Affect Disord. 2020;275:1-6. doi: 10.1016/j.jad.2020.06.023
15.
LancelMStroebeMEismaMC.Sleep disturbances in bereavement: a systematic review. Sleep Med Rev. 2020;53:101331. doi:10.1016/j.smrv.2020.101331
16.
RubinSSManevichADoronII. The Two-Track Model of Dementia Grief (TTM-DG): the theoretical and clinical significance of the continuing bond in sickness and in death. Death Stud. 2021;45(10):755-771. doi:10.1080/07481187.2019.1688014
17.
PignatielloGAMartinRKrausNGutierrezACusickRHickmanRL.Sleep interventions for informal caregivers of persons with dementia: a systematic review. Western Journal of Nursing Research. 2022;44(9):886-898. doi:10.1177/01939459211019033
18.
LichtenthalWGRobertsKEDonovanLA, et al. Investing in bereavement care as a public health priority. Lancet Public Health. 2024;9(4):e270-e274. doi: 10.1016/S2468-2667(24)00030-6
19.
LaperlePAchilleMUmmelD.The relational landscape of bereavement after anticipated death: an interpretive model. Death Stud. 2022;46(10):2485-2497. doi:10.1080/07481187.2021.1975177
20.
LoganELThorntonJAKaneRTBreenLJ.Social support following bereavement: the role of beliefs, expectations, and support intentions. Death Stud. 2018;42(8):471-482. doi:10.1080/07481187.2017.1382610
21.
SeoSMattosMK.The relationship between social support and sleep quality in older adults: a review of the evidence. Arch Gerontol Geriatr. 2024;117:105179. doi:10.1016/j.archger.2023.105179
22.
KentdeGreyRGUchinoBNTrettevikRCronanSHoganJN.Social support and sleep: a meta-analysis. Health Psychol. 2018;37(8):787-798. doi: 10.1037/hea0000628
23.
Holt-LunstadJ.The major health implications of social connection. Curr Dir Psychol Sci. 2021;30(3):251-259. doi: 10.1177/0963721421999630
24.
AirhihenbuwaCOIwelunmorJIEzepueCJWilliamsNJJean-LouisG.I sleep, because we sleep: a synthesis on the role of culture in sleep behavior research. Sleep Med. 2016;18:67-73. doi: 10.1016/j.sleep.2015.07.020
25.
VilaJ.Social support and longevity: meta-analysis-based evidence and psychobiological mechanisms. Front Psychol. 2021;12:717164. doi:10.3389/fpsyg.2021.717164
26.
HaamiDGibsonRLindsayNTassell-MatamuaN.Kei te moe te tinana, kei te oho te wairua–as the body sleeps, the spirit awakens: exploring the spiritual experiences of contemporary Māori associated with sleep. Kōtuitui: N Zeal J Soc Sci Online. 2024:20(1):116-136. doi: 10.1080/1177083X.2024.2381749
27.
CobbS.Social support as a moderator of life stress. Psychosom Med. 1976;38(5):300-314. doi:10.1097/00006842-197609000-00003
28.
DuYDennisBLiuJ, et al. A conceptual model to improve care for individuals with alzheimer’s disease and related dementias and their caregivers: qualitative findings in an online caregiver forum. J Alzheimer’s Dis. 2021;81(4):1673-1684. doi:10.3233/JAD-210167
29.
DiefenbeckCAKlemmPRHayesER.“Anonymous meltdown”: content themes emerging in a nonfacilitated, peer-only, unstructured, asynchronous online support group for family caregivers. Comput Inform Nurs. 2017;35(12):630-638. doi:10.1097/cin.0000000000000376
30.
DuYPaivaKCebulaA, et al. Diabetes-related topics in an online forum for caregivers of individuals living with alzheimer disease and related dementias: qualitative inquiry. J Med Internet Res. 2020;22(7):e17851. doi:10.2196/17851
31.
SugawaraYNarimatsuHHozawaAShaoLOtaniKFukaoA.Cancer patients on Twitter: a novel patient community on social media. BMC Res Notes. 2012;5(1):699. doi:10.1186/1756-0500-5-699
32.
LiuJMeyerKGlassnerA, et al. Thematic analysis of Alzheimer’s medication management discussion in a non-moderated online forum. West J Nurs Res. 2024;46(4):307-314. doi:10.1177/01939459241237671
33.
NiCSongQMalinB, et al. Examining online behaviors of adult-child and spousal caregivers for people living with alzheimer disease or related dementias: comparative study in an open online community. J Med Internet Res. 2023;25:e48193. doi:10.2196/48193
34.
ScharettEMadathilKCLopesS, et al. An investigation of the information sought by caregivers of Alzheimer’s patients on online peer support groups. Cyberpsychol Behav Soc Netw. 2017;20(10):640-657. doi:10.1089/cyber.2017.0274
ImEOCheeW.An online forum as a qualitative research method: practical issues. Nurs Res. 2006;55(4):267-273. doi:10.1097/00006199-200607000-00007
41.
LimWM.What is qualitative research? An overview and guidelines. Australas Mark J. 2024:14413582241264619. doi: 10.1177/14413582241264619
42.
MacArthurNDKirbyEMowllJ.Bereavement affinities: a qualitative study of lived experiences of grief and loss. Death Stud. 2023;47(7):836-846. doi:10.1080/07481187.2022.2135044
43.
GibsonKPeacockSBaylyM.Qualitative exploration of emotional and social changes from diagnosis to bereavement for spousal caregivers of persons with dementia. BMJ Open. 2019;9(9):e031423. doi:10.1136/bmjopen-2019-031423
44.
VlachogianniAEfthymiouAPotamianouDSakkaPOrgetaV.Life after care: psychological adjustment to bereavement in family carers of people with dementia. Int Psychogeriatr. 2016;28(5):815-823. doi:10.1017/S104161021500201X
45.
RomeroMM.Meaning reconstruction in bereaved family caregivers of person’s with Alzheimer’s disease: a mixed-methods study. OMEGA-J Death Dying. 2021;82(4):548-569. doi:10.1177/0030222818821024
46.
StemenSE.“They’re in my heart, mind, and cells”: what continuing bonds reveal about social networks. Gerontologist. 2020;60(6):1085-1093. doi:10.1093/geront/gnz188
47.
PeacockSBaylyMGibsonKHoltslanderLThompsonGO’ConnellM.The bereavement experience of spousal caregivers to persons with dementia: reclaiming self. Dementia. 2018;17(1):78-95. doi:10.1177/1471301216633325
48.
WehrmanEC.“I don’t even know who I am”: Identity reconstruction after the loss of a spouse. J Soc Pers Relat. 2023;40(4):1250-1276. doi:10.1177/02654075221127399
49.
WrightSTKerrCWDoroszczukNMKuszczakSMHangPCLuczkiewiczDL.The impact of dreams of the deceased on bereavement: a survey of hospice caregivers. Am J Hosp Palliat Care. 2014;31(2):132-138. doi:10.1177/1049909113479201
50.
KampKSSteffenEMMoskowitzASpindlerH.Prevalence and phenomenology of sensory experiences of a deceased spouse: a survey of bereaved older adults. OMEGA-J Death Dying. 2023;87(1):103-125. doi:10.1177/00302228211016224
51.
SabucedoPHayesJEvansC.Narratives of experiences of presence in bereavement: sources of comfort, ambivalence and distress. Br J Guid Couns. 2021;49(6):814-831. doi: 10.1080/03069885.2021.1983156
52.
DatsonSJMarwitS.Personality constructs and perceived presence of deceased loved ones. Death Stud. 1997;21(2):131-146. doi:10.1080/074811897202047
53.
LewisLBrownJB.Accessing mother within: a study of midlife daughters’ use of maternal belongings in mourning. J Motherhood Initiat Res Commun Involv. 2008;10(2):134-145.
54.
HewsonHGalbraithNJonesCHeathG.The impact of continuing bonds following bereavement: a systematic review. Death Stud. 2024;48(10):1001-1014. doi:10.1080/07481187.2023.2223593
55.
RubinSSMalkinsonRWitztumE.Working with the bereaved: Multiple lenses on loss and mourning. Routledge; 2012.
56.
KlassDSteffenEM.Continuing bond in bereavement: New directions research practice. 1st ed. Routledge; 2018.
