Minimal research explores the impact of dementia and a dementia diagnosis on families from the unique vantage of senior health professionals. The participants of this study, eight senior aged care professionals, provided unique interpretative insights into family dynamics and sense-making on the journey with dementia, and their own role in that journey. Both positive and negative perspectives were sought. Data from semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). One superordinate theme, Dementia naiveté; redefined intimacy, overarched Embarrassed shame; Maintaining hope; Redefining a model of intimacy; and Redefined relational intimacy and growth. Within these themes, the participants shed light on hurtful embarrassment and shame experienced by families associated with the diagnostic label given to a loved one. This label was perceived to either trigger separation, hurt and immobility through ignorance, or precipitate a frenzy of naive yet hopeful energy for seeking that elusive cure. The participants saw their role as one of enacting a new way of connecting what was with what could be. Thus, they modelled advocacy, integral care and relational intimacy. Validation came in witnessing a redefining of intimacy in many families who were able to embrace that holistic and empathic approach to the shifting presentation of dementia. Psychological well-being was observed to occur when families embraced growthful domains, e.g. acceptance, hope, relational closeness and altruistic concern for other families. Implications for future care models are discussed.
Allen, K., & Killick, J. (2010). Communicating with people with dementia. In J.C. Hughes, M. Lloyd-Williams, and G.A. Sachs. (Eds), Supportive care support for the person with dementia. Oxford: Oxford University Press.
2.
AskamJ.BriggsK.NormanI.RedfernS. (2007) Care at home for people with dementia: as in a total institution?Ageing & Society27: 3–24.
3.
BauerM.NayR. (2003) Family and staff partnerships in long-term care: a review of the literature. Journal of Gerontological Nursing29: 46–53.
4.
BernsteinR. J. (1983) Beyond objectivism and relativism: science hermeneutics and praxis, Philadelphia, USA: University of Pennsylvania Press.
5.
BirdM.Llewellyn-JonesR.KortenA.SmithersH. (2007) A controlled trial of a predominantly psychosocial approach to BPSD: treating causality. International Psychogeriatrics19: 874–891.
Bridges-WebbC.WolkJ. (2003) Care of patients with dementia in general practice: guidelines, Sydney: New South Wales Department of Health.
8.
BrockiJ. M.WeardonA. J. (2006) A critical evaluation of the use of interpretive phenomenological analysis (IPA) in health psychology. Psychology and Health21: 87–88.
9.
ButlerL. G.BlaseyC. M.GarlanR. W.McCaslinS. E.AzarowJ.ChenX.SpiegelD. (2005) Posttraumatic growth following the terrorist attacks of September 11th 2001: Cognitive coping and trauma symptom predictors in an internet convenience sample. Traumatology11: 247–267.
10.
CheungC. K.ChowE. O. (2006) Spilling over strain between elders and their caregivers in Hong Kong. International Journal of Aging and Human Development63: 73–93.
11.
ClareL. (2010) Awareness in people with severe dementia: review and integration. Aging & Mental Health14: 20–32.
12.
ClareL.RowlandsJ.BruceE.SurrC.DownsM. (2008) The experience of living with dementia in residential care: an interpretive phenomenological analysis. The Gerontologist48: 711–720.
13.
Clare, L., Woods, R.T., Whitaker, R., Wilson, B.A., & Downs, M. (2010). Development of an awareness-based intervention to enhance quality of life in severe dementia: trial platform. Trials, 11, 73.
14.
DavisD. H. (2004) Dementia: Sociological and philosophical constructions. Social Science and Medicine58: 369–378.
15.
DeciE. L.RyanR. M. (1985) Intrinsic motivation and self-determination in human behaviour, New York, NY: Plenum.
16.
EdvardssonD.SandmanP.NayR.KarlssonS. (2009) Predictors of strain in residential dementia care support nursing staff. Journal of Nursing Management17: 59–65.
17.
FiskeA.WetherillJ. L.GatzM. (2009) Depression in older adults. Annual Review of Clinical Psychology5: 363–389.
18.
Gadamer, H. (1983). Hermeneutics as practical philosophy. In F.G. Lawrence (Trans.), Reason in the age of science (pp. 88–138). Cambridge, MA: The MIT Press.
19.
GibsonF. (1999) Can we risk person-centred communication?Dementia Care7: 22–24.
20.
HeideggerM. (1927/1962) Being and time, New York, NY: Harper.
21.
HendersonC. S. (1998) Partial view – an Alzheimer’s journal, Dallas: Southern Methodist University Press.
22.
HoganD. B.BaileyP.BlackS.CarswellA.ChertkowH.ClarkeB.ThorpeL. (2008) Diagnosis and treatment of dementia: 5. Nonpharmacologic and pharmacologic therapy for mild to moderate dementia. Canadian Medical Association Journal179: 1019–1026.
23.
Janoff-BulmanR. (1992) Shattered assumptions: towards a new psychology of trauma, New York, NY: Free Press.
24.
JosephS. (2011) What doesn’t kill us: the new psychology of posttraumatic growth, New York, NY: Basic Books.
25.
Joseph, S., & Butler, L.D. (2010). Positive changes following trauma. The National Center for Posttraumatic Stress Disorder: PTSD Research Quarterly, Summer 2010. Available free online: www.ptsd.va.gov.
26.
JosephS.LinleyP. A. (2005) Positive adjustment to threatening events: an organismic valuing theory of growth through adversity. Review of General Psychology9: 262–280.
27.
JosephS.LinleyP. A. (2006) Growth following adversity: theoretical perspectives and implications for clinical practice. Clinical Psychology Review26: 1041–1053.
28.
Joseph, S., & Linley, P.A. (Eds). (2008). Trauma, recovery, and growth. Positive psychological perspectives on posttraumatic stress. Hoboken, NJ: John Wiley & Sons.
29.
KatsunoT. (2005) Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing and Society25: 197–214.
30.
KitwoodT. (1997) Dementia reconsidered: the person comes first, Buckingham: Open University Press.
31.
LarkinM.WattsS.CliftonE. (2006) Giving voice and making sense in interpretive phenomenological analysis. Qualitative Research in Psychology3: 102–120.
32.
LeporeS.RevensonT. A. (2006) Resilience and posttraumatic growth: Recovery, resistance, and reconfiguration. In: CalhounL. G.TedeschiR. G. (eds) Handbook of posttraumatic growth: Research and practice, 24–46, Mahwah, NJ: Lawrence Erlbaum.
33.
LevyB. R.AshmanO.DrorI. (1999–2000) To be or not to be: the effects of aging self–stereotypes. Omega: Journal of Death and Dying40: 409–420.
34.
LineweaverT. T.BergerA. K.HertzogC. (2009) Expectations about memory across the life span are impacted by aging stereotypes. Psychology and Aging24: 169–176.
35.
LinleyP. A.JosephS.GoodfellowB. (2008) Positive changes in outlook following trauma and their relationship to subsequent posttraumatic stress, depression, and anxiety. Journal of Social and Clinical Psychology27: 877–891.
36.
MagaiC.CohenC.GombergD.MalatestaC.CulverC. (1996) Emotional expression during mid–to late–stage dementia. International Psychogeriatrics8: 383–395.
37.
McCormackL.HaggerM. S.JosephL. (2011) Vicarious growth in wives of Vietnam veterans: A phenomenological investigation into decades of ‘lived’ experience. Journal of Humanistic Psychology51: 273–229.
38.
McCormackL.JosephS. (2013) Psychological growth in humanitarian aid personnel: reintegrating with family and community following exposure to war and genocide. Community, Work & Family16: 147–163.
39.
McCormackL.JosephS. (2014) Psychological growth in aging Vietnam veterans redefining shame and betrayal. Journal of Humanistic Psychology54: 336–355.
40.
McCormackL.SlyR. (2013) Distress and growth: The subjective “lived” experiences of being the child of a Vietnam veteran. Traumatology19: 303–312.
41.
MeuserT. M.MarwitS. J. (2001) A comprehensive stage–sensitive model of grief in dementia caregiving. Gerontologist41: 658–670.
42.
MoyleW.VenturtoL.GriffithsS.GrimbeekP.McAllisterM.OxladeD.MurfieldJ. (2011) Factors influencing quality of life for people with dementia: a qualitative perspective. Ageing & Mental Health15: 970–977.
43.
NorbergK.HelinY.DahlA.HellzenO.AsplundK. (2006) Nurses’ attitudes towards people with dementia: the semantic differential technique. Nursing Ethics3: 264–274.
44.
NorbergA.MelinE.AsplundK. (1986) Reactions to music, touch and object presentation in the final stage of dementia. An exploratory study. International Journal of Nursing Studies23: 315–323.
45.
Nuffield Council on Bioethics (2009) Dementia: ethical issues, Cambridge, UK: Cambridge Publishers.
46.
O’LearyV. E.IckovicsJ. R. (1995) Resilience and thriving in response to challenge: An opportunity for a paradigm shift in women’s health. Women’s Health: Research on Gender, Behavior and Policy1: 121–142.
47.
OldmanC.QuilgersD. (1999) The last resort? Revisiting ideas about older people’s living arrangements. Ageing & Society19: 363–384.
48.
ParkC. L.CohenL. H.MurchR. (1996) Assessment and prediction of stress-related growth. Journal of Personality64: 71–105.
49.
PetersonR. C. (2004) Mild cognitive impairment as a diagnostic entity. Journal of International Medicine256: 183–194.
50.
PlanalpS. (1999) Communicating emotion: social, moral and cultural processes, Cambridge, MA: Cambridge University Press.
51.
SabatS. R. (2010) Maintaining the self in dementia. In: HughesJ. C.Lloyd-WilliamsM.SachsG. A. (eds) Supportive care support for the person with dementia, Oxford: Oxford University Press.
52.
SabatS. R.CollinsM. (1999) Intact social, cognitive ability, and selfhood: a case study of Alzheimer’s disease. Ageing and Society12: 443–461.
53.
SappS. (2010) Spiritual care of people with dementia and their carers. In: HughesJ. C.Lloyd-WilliamsM.SachsG. A. (eds) Supportive care for the person with dementia, Oxford: Oxford University Press.
54.
SartoriusN. (2007) Stigma and mental health. The Lancet370: 810–811.
55.
ScottA.LewisD.LoughlinN.ChambersM. (2005) Dementia and challenging behaviour: the needs of family caregivers. Nursing Older People17: 26–31.
56.
SmithB. W.DalenJ.WigginsK.TooleyE.ChristopherP.BernardJ. (2008) The brief resilience scale: Assessing the ability to bounce back. International Journal of Behavioural Medicine15: 194–200.
57.
SmithJ. (1996) Beyond the divide between cognitive and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health11: 261–271.
SmithJ. A. (2004) Reflecting on the development of interpretive phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology1: 39–54.
60.
SmithJ. A.FlowersP.OsbornM. (1997) Interpretative phenomenological analysis and the psychology of health and illness. In: YardleyL. (eds) Material discourses of health and illness, London: Routledge, pp. 68–91.
61.
SmithJ. A.JarmenM.OsbornM. (1999) Doing interpretative phenomenological analysis. In: MurrayM.ChamberlainK. (eds) Qualitative health psychology: theories and methods, London: Sage.
62.
SmithJ. A.MichieS.StephensonM.QuarrellO. (2002) Risk perception and decision making in candidates for genetic testing in Huntingdon’s disease: an interpretative phenomenological analysis. Journal of Health Psychology7: 131–144.
63.
SmithJ. A.OsbornM. (2008) Interpretive phenomenological analysis. In: SmithJ. A. (ed.) Qualitative psychology: a practical guide to research methods, 2nd ed. London: Sage Publications, pp. 53–80.
64.
SpencerL.RitchieJ. (2012) In pursuit of quality. In: HarperD.ThompsonA. R. (eds) Qualitative research methods in mental health and psychotherapy: a guide for students and practitioners, Chichester, UK: Wiley-Blackwell, pp. 209–223.
65.
StussD. T.PictonT. W.AlexanderM. P. (2001) Consciousness, self-awareness and the frontal lobes. In: SallowayS.MalloyP.DuffyJ. (eds) The frontal lobes and neuropsychiatric illness, Washington, DC: American Psychiatric Press, pp. 101–109.
66.
TaylorR. (2007) Alzheimer’s from the inside out, Baltimore, MD: Health Professions Press.
67.
TedeschiR. G.CalhounL. G. (1996) Posttraumatic growth inventory: measuring the positive legacy of trauma. Journal of Traumatic Stress9: 455–471.
68.
TedeschiR. G.CalhounL. G. (2004) Posttraumatic growth: conceptual foundations and empirical evidence. Psychological Inquiry: An International Journal for the Advancement of Psychological Theory15: 1–18.
69.
WalmsleyB. D.McCormackL. (2014a) The dance of communication: Retaining family membership despite severe non-speech dementia. Dementia13: 626–641.
70.
Walmsley, B.D., & McCormack, L. (2014b). Synthesis of meaning: negative and positive change in family members following the adversity of dementia. Journal of Humanistic Psychology, 1–22. doi: 10.1177/0022167814557547.
71.
WardR.VassA.AggarwalN.GarfieldC.CybykB. (2005) What is dementia care? Dementia is communication. Journal of Dementia Care13: 16–17.
72.
World Health Organisation (2002) Towards a common language for functioning, disability, and health. The international classification of functioning, disability, and health, Geneva, Switzerland: World Health Organisation.
73.
YardleyL. (2008) Demonstrating validity in qualitative psychology. In: SmithJ. A. (ed.) Qualitative psychology: a practical guide to research methods, 2nd ed. London: Sage Publications, pp. 53–80.
