We used a morality of care perspective to examine how grandchildren cope with having to deceive or lie to their grandparent with dementia. Data from interviews with 13 young adults were analyzed using interpretative phenomenological analysis. We found that a moral orientation shift toward a person-centered morality of care occurs gradually. Grandchildren struggle with concepts of moral goodness, importance of close others, and questions about self as a moral agent. We uncovered three antecedents of this shift (severity of dementia symptoms, valuing of the grandparent’s welfare, and valuing of the relationship) and three outcomes (transformation of moral self, changed relationship with the grandparent, and changed family relationships). Implications of a morality of care in intergenerational dementia relationships are discussed.
Attar-SchwartzS.TanJ.BuchananA. (1999). Adolescents’ perspectives on relationships with grandparents: The contribution of adolescent, grandparent, and parent–grandparent relationship variables. Children and Youth Services Review, 31, 1057–1066. DOI: 10.1080/15350770.2012.645739.
2.
BatsonC. D.KleinT. R.HighbergerL.ShawL. L. (1995). Immorality from empathy-induced altruism: When compassion and justice conflict. Journal of Personality and Social Psychology, 68, 1042–1054. DOI: 10.1037/0022-3514.68.6.1042.
3.
BelenkyM. F.ClinchyB. V.GoldbergerN. R.TaruleJ. M. (1986). Women’s ways of knowing: The development of self, voice, and mind. New York: Basic Books.
4.
BennerP. (1991). The role of experience, narrative, and community in skilled ethical comportment. Advances in Nursing Science, 14, 1–21.
5.
BennerP. (1994). Discovering challenges to ethical theory in experience-based narratives of nurses’ everyday ethical comportment. In MonagleJ. F.ThomasmaD. C. (Eds.). Health care ethics: Critical issues (pp. 401–411). Gaitherburg, MD: Aspen.
6.
BlumL. (1988). Gilligan and Kohlberg: Implications for moral theory. Ethics, 98, 472–291.
7.
BlumN. S. (1994). Deceptive practices in managing a family member with Alzheimer’s disease. Symbolic Interaction, 17, 21–36.
8.
BohlingH. R. (1991). Communication with Alzheimer’s patients: An analysis of caregiver listening patterns. International Journal of Aging and Human Development, 33, 249–267.
9.
BrussoniM. J.BoonS. (1998). Grandparental impact in young adults’ relationships with their closest grandparents: The role of relationship strength and emotional closeness. International Journal of Aging and Human Development, 46, 267–288. DOI: 10.2190=2B7B-E3LH-74JJ-UJRY.
10.
ByszewskiA. M.MolnerF.AminzadehF.EisnerM.GardeziF.BassettR. (2007). Dementia diagnosis disclosure. A study of patient and caregiver perspectives. Alzheimer’s Disease & Associated Disorders, 21, 107–114.
11.
CeldránM.VillarF.TriadóC. (2012). When grandparents have dementia: Effects on their grandchildren’s family relationships. Journal of Family Issues, 33, 1218–1239. DOI: 10.1177/0192513X12443051.
12.
CeldránM.VillarF.TriadóC. (2014). Thinking about my grandparent: How dementia influences adolescent grandchildren’s perceptions of their grandparents. Journal of Aging Studies, 29, 1–8. DOI: 10.1016/j.jaging.2013.12.004.
13.
ClareL. (2002). We’ll fight it as long as we can: Coping with the onset of Alzheimer’s disease. Aging and Mental Health, 6, 139–148. DOI: 10.1080/13607860220126826.
14.
CunninghamJ. (2005). Care staff views about telling the absolute truth to people with dementia (Doctoral dissertation in Clinical Psychology, Ridley Building, Newcastle upon Tyne, UK).
15.
DalyL.McCarronM.HigginsA.McCallionP. (2012). Sustaining place – A grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds. Journal of Clinical Nursing, 22, 501–512. DOI: 10.1111/jocn.12003.
16.
DayA. M.JamesI. A.MeyerT. D.LeeD. R. (2011). Do people with dementia find lies and deception in dementia care acceptable?Aging & Mental Health, 15, 822–829.
17.
De LangeJ.Van der KooyC. H.DroesR. M. (2000). Perception-oriented care in dementia. In VinkM. T.HoosemansA. E. M. (Eds.), Feelings are timeless. Perception-oriented interventions in the elderly (pp. 119–136). Houten, Diegem: Bohn Stafleu Van Loghum. In Dutch.
18.
ElvishR.JamesI.MilneD. (2010). Lying in dementia care: An example of a culture that deceives in people’s best interests. Aging & Mental Health, 14, 255–262.
19.
FinnemaE. J.DroesR. M.RibbeM. W.VanTilburg, (2000). A review of psychosocial models in psychogeriatrics; implications for care and research. Alzheimer Disease and Associated Disorders, 14, 68–80.
20.
FruhaufC. A.OrelN. A. (2008). Developmental issues of grandchildren who provide care to grandparents. International Journal of Aging & Human Development, 67, 209–230. DOI: 10.2190/AG.67.3.b.
21.
FørsundL. H.KiikR.SkovdahlK.YtrehusS. (2016). Constructing togetherness throughout the phases of dementia: A qualitative study exploring how spouses maintain relationships with partners with dementia who live in institutional care. Journal of Clinical Nursing, 25, 3010–3025. DOI: 10.1111/jocn.13320.
22.
GilliganC. (1982). In a different voice. Psychological theory and women’s development. Cambridge, MA: Harvard University Press.
23.
GilliganC. (1995). Moral orientation and moral development [1987]. In HeldV. (Ed.). Justice and care. Essential readings in feminist ethics (pp. 31–46). Boulder, CO: Westview Press.
24.
GilliganC.AttanucciJ. (1988). Two moral orientations: Gender differences and similarities. Merrill-Palmer Quarterly, 34, 223–237.
25.
GreenfieldB. H.JensenG. M. (2010). Understanding the lived experiences of patients: Applications of a phenomenological approach to ethics. Physical Therapy, 90, 1185–1197.
26.
HasselkusB. R. (1997). Everyday ethics in dementia care: Narrative of crossing the line. Gerontologist, 37, 640–649.
27.
HayesJ.ZimmermanM. K.BoylsteinC. (2010). Responding to symptoms of Alzheimer’s disease: Husbands, wives, and the gendered dynamics of recognition and disclosure. Qualitative Health Research, 20, 1101–1115.
28.
HeldV. (1993). Feminist morality: Transforming culture, society, and politics. Chicago, IL: University of Chicago Press.
29.
HeldV. (1995). Justice and care. Essential readings in feminist ethics. Boulder, CO: Westview Press.
30.
HellströmI.NolanM.LundhU. (2005). We do things together’: A case study of ‘couplehood’ in dementia. Dementia, 4, 7–22. DOI: 10.1177/1471301205049188.
31.
HertoghC. M.TheB. A.MiesenB. M.EefstingJ. A. (2004). Truth telling and truthfulness in the care for patients with advanced dementia: An ethnographic study in Dutch nursing homes. Social Science & Medicine, 59, 1685–1693.
32.
HughesJ. C.HopeT.ReaderS.RiceD. (2002). Dementia and ethics: The view of informal carers. Journal of the Royal Society of Medicine, 95, 242–262.
33.
JaggarA. M. (1995). Caring as a feminist practice of moral reason [1995]. In HeldV. (Ed.). Justice and care. Essential readings in feminist ethics (pp. 179–202). Boulder, CO: Westview Press.
34.
JamesI. A.Wood-MitchellA. J.WaterworthA. M.MackenzieL. E.CunninghamJ. (2006). Lying to people with dementia: Developing ethical guidelines for care settings. International Journal of Geriatric Psychiatry, 21, 800–801.
35.
JonesD. (2015). A family living with Alzheimer’s disease: The communicative challenges. Dementia, 14, 555–573.
36.
JuujarviS. (2005). Care and justice in real-life moral reasoning. Journal of Adult Development, 12, 199–210.
37.
KempC. L. (2005). Dimensions of grandparent–adult grandchild relationships: From family ties to intergenerational friendships. Canadian Journal of Aging, 24, 161–178. DOI: 10.1353/cja.2005.0066.
38.
KleibeukerS. W.De DreuC. K. W.CroneE. A. (2013). The development of creative cognition across adolescence: Distinct trajectories for insight and divergent thinking. Developmental Science, 16, 2–12. DOI: 10.1111/j.1467-7687.2012.01176.x.
39.
KohlbergL. (1973). The claim to moral adequacy of a highest stage of moral judgment. The Journal of Philosophy, 70, 630–646. DOI: 10.2307/2025030.
40.
McCornackS. A.LevineT. R. (1990). When lies are uncovered: Emotional and relational outcomes of discovered deception. Communication Monographs, 57, 119–139.
41.
MironA. M.ThompsonA. E.EbertA.McFaddenS. H. (2017). Weaving social reality around the grandparent/great-grandparent with dementia: A model of verbal and non-verbal dementia interactions. Dementia. DOI: 10.1177/1471301217743817.
42.
MironA. M.ThompsonA. E.McFaddenS. H.EbertA. (2017). Young adults’ concerns and coping strategies related to their interactions with their grandparents and great-grandparents with dementia. Dementia. DOI: 10.1177/1471301217700965.
43.
MoodyH. R. (1988). From informed consent to negotiated consent. The Gerontologist, 28 (Suppl.), 64–70.
44.
MoodyH. R. (1992). Ethics in an aging society. Baltimore: Johns Hopkins University Press.
45.
OrelN.DupuyP. (2002). Grandchildren as auxiliary caregivers for grandparents with cognitive and/or physical limitations: Coping strategies and ramifications. Child Study Journal, 32, 193–213. DOI: 10.1177/1471301207075648.
46.
PerryW. G.Jr. (1981). Cognitive and ethical growth: The making of meaning. In ChickeringA.et al. (Eds.) The modern American college: Responding to the new realities of diverse students and a changing society. San Francisco: Jossey-Bass.
47.
SagarinB. J.RhoadsK. V L.CiladiniR. B. (1998). Deceiver’s distrust: Denigration as a consequence of undiscovered deception. Personality and Social Psychology Bulletin, 24, 1167–1176.
48.
SchermerM. (2007). Nothing but the truth? On truth and deception in dementia care. Bioethics, 21, 13–22.
49.
SeamanA. T.StoneA. M. (2017). Little white lies: Interrogating the (un)acceptability of deception in the context of dementia. Qualitative Health Research, 27, 60–73.
50.
SmithJ. A.OsbornM.JarmanM. (1999). Doing interpretative phenomenological analysis. In MurrayM.. ChamberlainK (Eds.), Qualitative health psychology: Theories and methods. London: Sage.
51.
TuckettA. G. (2007). Stepping across the line: Information sharing, truth telling, and the role of personal carer in the Australian nursing home. Quantitative Health Resources, 17, 489–500.
52.
TuckettA. G. (2012). The experience of lying in dementia care: A qualitative study. Nursing Ethics, 19, 7–20.
53.
WaldropD. P.WeberJ. A.HeraldS. L.PruettJ.CooperK.JuozapaviciusK. (1999). Wisdom and life experience: How grandfathers mentor their grandchildren. Journal of Aging and Identity, 4, 33–46. DOI: 10.1023/A:1022834825849.
54.
Wood-MitchellA.WaterworthA.StephensonM.JamesI. (2006). Lying to people with dementia: Sparking the debate. Journal of Dementia Care, 14, 30–31.
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