The purpose of this investigation was to understand the dynamics among dementia caregiving, vigilance, and home and community-based service use.
Methods
This paper is derived from a larger, mixed-methods study on caregiving. We used a descriptive qualitative approach to analyze interview data of 30 family caregivers of relatives with dementia.
Results
We found five domains of vigilance in which caregivers felt “on duty”: ensuring attentiveness, ensuring safety, ensuring resources, ensuring healthcare, and ensuring closeness. Formal service use did not necessarily give caregivers relief from vigilance, with the language of risk often employed by caregivers.
Conclusion
Because service use could contribute to feelings of vigilance, rather than give caregivers a break from a sense of watchfulness, these findings support calls for dementia-specific training for service providers. In future caregiving research, the relationship between vigilance, caregiver distress, and role captivity should be explored.
BalbimG. M.MagallanesM.MarquesI. G.CiruelasK.AguiñagaS.GuzmanJ.MarquezD. X. (2020). Sources of caregiving burden in middle-aged and older Latino caregivers. Journal of Geriatric Psychiatry and Neurology, 33(4), 185–194. DOI: https://doi.org/10.1177/0891988719874119
2.
BangerterL. R.LiuY.KimK.ZaritS. H. (2021). Adult day services and dementia caregivers’ daily affect: The role of distress response to behavioral and psychological symptoms of dementia. Aging & Mental Health, 25(1), 46–52. DOI: https://doi.org/10.1080/13607863.2019.1681934
3.
BaylyM.MorganD.Froehlich ChowA.KosteniukJ.ElliotV. (2020). Dementia-related education and support service availability, accessibility, and use in rural areas: Barriers and solutions. Canadian Journal on Aging/La Revue Canadienne Du Vieillissement, 39(4), 545–585. DOI: https://doi.org/10.1017/S0714980819000564
4.
BlackB. S.JohnstonD.LeoutsakosJ.ReulandM.KellyJ.AmjadH.DavisK.WillinkA.SloanD.LyketsosC.SamusQ. M. (2019). Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics. International Psychogeriatrics, 31(11), 1643–1654. DOI: https://doi.org/10.1017/S1041610218002296
5.
CarrJ. M. (1998). Vigilance as a caring expression and Leininger’s theory of cultural care diversity and universality. Nursing science quarterly, 11(2), 74–78. DOI: https://doi.org/10.1177/089431849801100209
6.
CoelhoA.De BritoM.TeixeiraP.FradeP.BarrosL.BarbosaA. (2020). Family caregivers’ anticipatory grief: A conceptual framework for understanding its multiple challenges. Qualitative Health Research, 30(5), 693–703. DOI: https://doi.org/10.1177/1049732319873330
7.
CorcoranM. A. (2011). Caregiving styles: A cognitive and behavioral typology associated with dementia family caregiving. The Gerontologist, 51(4), 463–472. DOI: https://doi.org/10.1093/geront/gnr002
FalzaranoF. B.CimarolliV.BoernerK.SiedleckiK. L.HorowitzA. (2022). Use of home care services reduces care-related strain in long-distance caregivers. The Gerontologist, 62(2), 252–261. DOI: https://doi.org/10.1093/geront/gnab088
10.
FeldmanS. J.SolwayE.KirchM.MalaniP.SingerD.RobertsJ. S. (2021). Correlates of formal support service use among dementia caregivers. Journal of Gerontological Social Work, 64(2), 135–150. DOI: https://doi.org/10.1080/01634372.2020.1816589
11.
FoleyK. T.LuzC. C. (2021). Retooling the health care workforce for an aging America: A current perspective. The Gerontologist, 61(4), 487–496. DOI: https://doi.org/10.1093/geront/gnaa163
12.
Gallagher-ThompsonD.Choryan BilbreyA.Apesoa-VaranoE. C.GhatakR.KimK. K.CothranF. (2020). Conceptual framework to guide intervention research across the trajectory of dementia caregiving. The Gerontologist, 60(Suppl 1), S29–S40. DOI: https://doi.org/10.1093/geront/gnz157
13.
GraceE. L.BurgioL. D.AllenR. S.DeCosterJ.AielloA. E.AlgaseD. L. (2016). Caregiver and care recipient characteristics as predictors of psychotropic medication use in community-dwelling dementia patients. Aging & Mental Health, 20(12), 1297–1304. DOI: https://doi.org/10.1080/13607863.2015.1075960
14.
Henning-SmithC.LahrM.CaseyM. (2019). A national examination of caregiver use of and preferences for support services: Does rurality matter?Journal of Aging and Health, 31(9), 1652–1670. DOI: https://doi.org/10.1177/0898264318786569
15.
KazmerM. M.GlueckaufR. L.SchettiniG.MaJ.SilvaM. (2018). Qualitative analysis of faith community nurse–led cognitive-behavioral and spiritual counseling for dementia caregivers. Qualitative Health Research, 28(4), 633–647. DOI: https://doi.org/10.1177/1049732317743238
16.
KimH.SefcikJ. S.BradwayC. (2017). Characteristics of qualitative descriptive studies: A systematic review. Research in Nursing & Health, 40(1), 23–42. DOI: https://doi.org/10.1002/nur.21768
17.
KrutterS.Schaffler-SchadenD.Essl-MaurerR.WurmL.SeymerA.KriechmayrC.MannE.OsterbrinkJ.FlammM. (2020). Comparing perspectives of family caregivers and healthcare professionals regarding caregiver burden in dementia care: Results of a mixed methods study in a rural setting. Age and Ageing, 49(2), 199–207. DOI: https://doi.org/10.1093/ageing/afz165
18.
LaparidouD.MiddlemassJ.KarranT.SiriwardenaA. N. (2019). Caregivers' interactions with health care services - mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia - a qualitative study. Dementia, 18(7–8), 2526–2542. DOI: https://doi.org/10.1177/1471301217751226
19.
MacleodA.TatangeloG.McCabeM.YouE. (2017). There isn't an easy way of finding the help that's available." barriers and facilitators of service use among dementia family caregivers: A qualitative study. International Psychogeriatrics, 29(5), 765–776. DOI: https://doi.org/10.1017/S1041610216002532
20.
MaffiolettiV. L. R.BaptistaM. A. T.SantosR. L.RodriguesV. M.DouradoM. C. N. (2019). Effectiveness of day care in supporting family caregivers of people with dementia: A systematic review. Dementia & Neuropsychologia, 13(3), 268–283. DOI: https://doi.org/10.1590/1980-57642018dn13-030003
21.
MahoneyD. F. (2003). Vigilance: Evolution and definition for caregivers of family members with Alzheimer’s disease. Journal of Gerontological Nursing, 29(8), 24–30. DOI: https://doi.org/10.3928/0098-9134-20030801-07
22.
MahoneyD. F.JonesR. N.CoonD. W.MendelsohnA. B.GitlinL. N.OryM. (2003). The caregiver vigilance scale: Application and validation in the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) project. American Journal of Alzheimer’s Disease and Other Dementias, 18(1), 39–48. DOI: https://doi.org/10.1177/153331750301800110
23.
McCormackL.TillockK.WalmsleyB. D. (2017). Holding on while letting go: Trauma and growth on the pathway of dementia care in families. Aging & Mental Health, 21(6), 658–667. DOI: https://doi.org/10.1080/13607863.2016.1146872
24.
MironA. M.ThompsonA. E.EbertA. R.McFaddenS. H. (2019). Weaving social reality around the grandparent/great-grandparent with dementia to maintain relational presence: A verbal and non-verbal dementia interactions model. Dementia, 18(6), 2244–2260. DOI: https://doi.org/10.1177/1471301217743817
25.
MoonH. (2016). Predictors of perceived benefits and drawbacks of using paid service among daughter and daughter-in-law caregivers of people with dementia. Journal of Women & Aging, 28(2), 161–169. DOI: https://doi.org/10.1080/08952841.2014.954505
26.
NormanG. J.WadeA. J.MorrisA. M.SlabodaJ. C. (2018). Home and community-based services coordination for homebound older adults in home-based primary care. BMC geriatrics, 18(1), 241. DOI: https://doi.org/10.1186/s12877-018-0931-z
27.
O’SheaE.TimmonsS.O’SheaE.FoxS.IrvingK. (2019). Respite in dementia: An evolutionary concept analysis. Dementia, 18(4), 1446–1465. DOI: https://doi.org/10.1177/1471301217715325
28.
ParkerL. J.FabiusC. D. (2020). Racial differences in respite use among Black and White caregivers for people living with dementia. Journal of Aging and Health, 32(10), 1667–1675. DOI: https://doi.org/10.1177/0898264320951379
29.
ParsonsK. (1997). The male experience of caregiving for a family member with Alzheimer’s disease. Qualitative Health Research, 7(3), 391–407. DOI: https://doi.org/10.1177/104973239700700305
30.
RobertoK. A.SavlaJ.McCannB. R.BliesznerR.KnightA. L. (2021). Dementia family caregiving in rural Appalachia: A sociocultural model of care decisions and service use. The Journals of Gerontology, Series B: Psychological Sciences & Social Sciences, 77(6), 1094–1104. DOI: https://doi.org/10.1093/geronb/gbab236
31.
SaragosaM.JeffsL.OkrainecK.KuluskiK. (2022). Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers. Dementia, 21(1), 153–180. DOI: https://doi.org/10.1177/14713012211031779
32.
SavlaJ.RobertoK. A.BliesznerR.KnightA. L. (2022). Family caregivers in rural Appalachia caring for older relatives with dementia: Predictors of service use. Innovation in Aging, 6(1), igab055, DOI: https://doi.org/10.1093/geroni/igab055
33.
ScalesK. (2021). It is time to resolve the direct care workforce crisis in long-term care. The Gerontologist, 61(4), 497–504. DOI: https://doi.org/10.1093/geront/gnaa116
WackerbarthS. B.TarasenkoY. N. (2018). Does vigilance in decision-making matter for dementia family caregivers?Aging & Mental Health, 22(5), 692–699. DOI: https://doi.org/10.1080/13607863.2017.1292206
36.
WolffJ. L.SpillmanB. C.FreedmanV. A.KasperJ. D. (2016). A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176(3), 372–379. DOI: https://doi.org/10.1001/jamainternmed.2015.7664
37.
ZaritS. H.KimK.FemiaE. E.AlmeidaD. M.KleinL. C. (2014). The effects of adult day services on family caregivers’ daily stress, affect, and health: Outcomes from the Daily Stress and Health (DaSH) study. The Gerontologist, 54(4), 570–579. DOI: https://doi.org/10.1093/geront/gnt045
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