Although the extant literature identifies resistance to care (RTC) as one of the most frequently reported and impactful caregiver (CG) stressors, typical studies that rely on quantitative measures of RTC do not fully explain how and why RTC negatively influences CGs’ well-being. As such, it is difficult to develop specific intervention strategies to support CGs in dealing with RTC. Informed by existing literature and tenets from Stress Theory, the current study includes semi-structured interviews with 19 family CGs of community-dependent (non-institutionalized) elders, regarding their RTC experiences. Through a directed qualitative content analysis, we explored occurrence patterns, contextual factors of when and how RTC occurs, how CGs respond to RTC, and its potential impact on CGs’ subjective stress. The results revealed distinguishable characteristics of four types of RTC: Frequent-Pervasive, Frequent-Delimited, Transition-Activated, and Shock-to-Unfamiliar/Unexpected. We discuss how recognition of those types of RTC can be integrated into CG support intervention strategies.
AssarroudiA.HeshmatiN. F.ArmatM. R.EbadiA.VaismoradiM. (2018). Directed qualitative content analysis: The description and elaboration of its underpinning methods and data analysis process. Journal of Research in Nursing, 23(1), 42–55. https://doi.org/10.1177/1744987117741667
2.
BangerterL. R.LiuY.ZaritS. H. (2019). Longitudinal trajectories of subjective care stressors: The role of personal, dyadic, and family resources. Aging & Mental Health, 23(2), 255–262. https://doi.org/10.1080/13607863.2017.1402292
3.
BomJ.BakxP.SchutF.van DoorslaerE. (2019). The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. The Gerontologist, 59(5), e629–e642. https://doi.org/10.1093/geront/gny137
4.
CapistrantB. D.MoonJ. R.GlymourM. M. (2012). Spousal caregiving and incident hypertension. American Journal of Hypertension, 25, 437–443. https://doi.org/10.1038/ajh.2011.232
5.
ChiaoC. Y.WuH. S.HsiaoC. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62, 340–350. https://doi.org/10.1111/inr.1219c
6.
CunninghamJ.WilliamsK. N. (2007). A case study of resistiveness to care and elder speak. Research and Theory for Nursing Practice, 21(1), 45–56. https://doi.org/10.1891/rtnpij-v21i1a006
7.
DassellK. B.CarrD. C.VitalianoP. (2017). Does caring for a spouse with dementia accelerate cognitive decline? Findings from the Health and Retirement Study. The Gerontologist, 57, 319–328. https://doi.org/10.1093/geront/gnv148
8.
DavisL. L.GillissC. L.Deshefy-LonghiT.ChestnuttD. H.MolloyM. (2011). The nature and scope of stressful spousal caregiving relationships. Journal of Family Nursing, 17(2), 224–240. https://doi.org//10.1177/1074840711405666
9.
Dilworth-AndersonP.WilliamsI. C.GibsonB. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980–2000). The Gerontologist, 42(2), 237–272. https://doi.org/10.1093/geront/42.2.237
10.
ErlingssonC. L.MagnussonL.HansonE. (2012). Family caregivers’ health in connection with providing care. Qualitative Health Research, 22(5), 640–655. https://doi.org/10.1177/1049732311431247
11.
FauthE. B.FemiaE. E.ZaritS. H. (2016). Resistiveness to care during assistance with activities of daily living in non-institutionalized persons with dementia: Associations with informal caregivers’ stress and well-being. Aging & Mental Health, 20(9), 888–898. https://doi.org/10.1080/13607863.2015.1049114
12.
FauthE. B.GibbonsA. (2014). Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with caregiver depressive symptoms. International Journal of Geriatric Psychiatry, 29(3), 263–271. https://doi.org/10.1002/gps.4002
13.
FauthE. B.ZaritS. H.FemiaE. E.HoferS. M.StephensM. A. P. (2006). Behavioral and psychological symptoms of dementia and caregivers’ stress appraisals: Intra-individual stability and change over short-term observations. Aging & Mental Health, 10(6), 563–573. https://doi.org/10.1080/13607860600638107
14.
GruenR. J.FolkmanS.LazarusR. S. (1988). Centrality and individual differences in the meaning of daily hassles. Journal of Personality, 56(4), 743–762. https://doi.org/10.1111/j.1467-6494.1988.tb00475.x
15.
HookerK.BowmanS. R.CoehloD. P.LimS. R.KayeJ.GuarigliaR.LiF. (2002). Behavioral change in persons with dementia: Relationships with mental and physical health of caregivers. The Journals of Gerontology: Psychological Sciences and Social Sciences: B, 57, P453–P460. https://doi.org/10.1093/geronb/57.5.P453
16.
HookerS. A.GrigsbyM. E.RiegelB.BekelmanD. B. (2015). The impact of relationship quality on health-related outcomes in heart failure patients and informal family caregivers: An integrative review. Journal of Cardiovascular Nursing, 30(4Suppl. 1), S52–S63. https://doi.org/10.1097/JCN.0000000000000270
17.
HsiehH. F.ShannonS. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687
18.
IshiiS.StreimJ. E.SalibaD. (2012). A conceptual framework for rejection of care behaviors: Review of literature and analysis of role of dementia severity. Journal of the American Medical Directors Association, 13, 11–23. https://doi.org/10.1016/j.jamda.2010.11.004
19.
JenkinsB. N.HunterJ. F.RichardsonM. J.ConnerT. S.PressmanS. D. (2020). Affect variability and predictability: Using recurrence quantification analysis to better understand how the dynamics of affect relate to health. Emotion, 20(3), 391–402. https://doi.org/10.1037/emo0000556.supp
20.
KoernerS. S.KenyonD. B. (2007). Understanding “good days” and “bad days”: Emotional and physical reactivity among caregivers for elder relatives. Family Relations: An Interdisciplinary Journal of Applied Family Studies, 56(1), 1–11. https://doi.org/10.1111/j.1741-3729.2007.00435.x
21.
KoernerS. S.ShiraiY.KenyonD. B. (2010). Sociocontextual circumstances in daily stress reactivity among caregivers for elder relatives. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, B, 65(5), 561–572. https://doi.org/10.1093/geronb/gbq045
22.
KonnoR.KangH. S.MakimotoK. (2014). A best-evidence review of intervention studies for minimizing resistance-to-care behaviours for older adults with dementia in nursing homes. Journal of Advanced Nursing, 70(10), 2167–2180. https://doi.org/10.1111/jan.12432
23.
LazarusR. S. (1984). Puzzles in the study of daily hassles. Journal of Behavioral Medicine, 7(4), 375–389. https://doi.org/10.1007/BF00845271
LeggettA.PolenickC. A.MaustD. T.KalesH. C. (2018). “What hath night to do with sleep?”: The caregiving context and dementia caregivers’ nighttime awakenings. Clinical Gerontologist, 41, 158–166. https://doi.org/10.1080/07317115.2017.1352057
27.
MahoneyE. K.HurleyA. C.VolicerL.BellM.GianotisP.HartshornM.LaneP.LesperanceR.MacDonaldS.NovakoffL.RheaumeY.TimmsR.WardenV. (1999). Development and testing of the Resistiveness to Care Scale. Research in Nursing & Health, 22(1), 27–38. https://doi.org/10.1002/(SICI)1098-240X(199902)22:1<27::AID-NUR4>3.0.CO;2-T
OrnsteinK.GauglerJ. E. (2012). The problem with “problem behaviors”: A systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient–caregiver dyad. International Psychogeriatrics, 24(10), 1536–1552. https://doi.org/10.1017/S1041610212000737
30.
PinquartM.SörensenS. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250–267. https://doi.org/10.1037/0882-7974.18.2.250
RismaK. M.Weber-GasparoniK.SwensonS. E.EttingerR. L.QianF. (2015). Group home caregivers’ comfort levels regarding physical resistance during oral hygiene care. Special Care in Dentistry, 35(3), 123–131. https://doi.org/10.1111/scd.12103
33.
RobertoK. A.McCannB. R.BliesznerR.SavlaJ. (2019). A long and winding road: Dementia caregiving with grit and grace. Innovation in Aging, 3(3), Article igz021. https://doi.org./10.1093/geroni/igz021
34.
RobinsonC. A.BottorffJ. L.PesutB.ZerrJ. (2020). Development and implementation of the family caregiver decision guide. Qualitative Health Research, 30(2), 303–313. https://doi.org/10.1177/1049732319887166
35.
RöckeC.LiS.-C.SmithJ. (2009). Intraindividual variability in positive and negative affect over 45 days: Do older adults fluctuate less than young adults?Psychology and Aging, 24(4), 863–878. https://doi.org/10.1037/a0016276
36.
RothD. L.SheehanO. C.HaleyW. E.JennyN. S.CushmanM.WalstonJ. D. (2019). Is family caregiving associated with inflammation or compromised immunity? A meta-analysis. The Gerontologist, 59(5), e521–e534. https://doi.org/10.1093/geront/gnz015
37.
SchillingO. K.DiehlM. (2014). Reactivity to stressor pile-up in adulthood: Effects on daily negative and positive affect. Psychology and Aging, 29(1), 72–83. https://doi.org/10.1037/a0035500
38.
ShiraiY.KoernerS. S. (2018). Examining the influence of care-recipient resistance on family caregiver emotional and physical well-being: Average frequency versus daily fluctuation. Journal of Applied Gerontology, 37(2), 203–227. https://doi.org/10.1177/0733464816631594
39.
SörensenS.PinquartM. (2005). Racial and ethnic differences in the relationship of caregiving stressors, resources, and sociodemographic variables to caregiver depression and perceived physical health. Aging & Mental Health, 9(5), 482–495. https://doi.org/10.1080/13607860500142796
40.
SpigelmyerP. C.SchreiberJ. B. (2019). A pilot study: Resistive behavior in the context of informal caregiver-assisted activities of daily living. Geriatric Nursing, 40(4), 399–404. https://doi.org/10.1016/j.gerinurse.2019.01.005
41.
van der LeeJ.BakkerT. J.DuivenvoordenH. J.DröesR. M. (2014). Multivariate models of subjective caregiver burden in dementia: A systematic review. Ageing Research Reviews, 15, 76–93. https://doi.org/10.1016/j.arr.2014.03.003
42.
VolicerL.BassE. A.LutherS. L. (2007). Agitation and resistiveness to care are two separate behavioral syndromes of dementia. Journal of the American Medical Directors Association, 8(8), 527–532. https://doi.org/10.1016/j.jamda.2007.05.005
43.
WatsonB.TatangeloG.McCabeM. (2019). Depression and anxiety among partner and offspring carers of people with dementia: A systematic review. The Gerontologist, 59(5), e597–e610. https://doi.org/10.1093/geront/gny049
44.
WilkinsV. M.SireyJ. A.BruceM. L. (2020). Caregiver reward and burden: Differing constructs in family members providing care for medically ill homebound older adults. Journal of Aging and Health, 32(5-6), 361–370. https://doi.org/10.1177/0898264319825760
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
