1,496
Views
13
CrossRef citations to date
0
Altmetric
Original Articles

Holding on while letting go: trauma and growth on the pathway of dementia care in familiesFootnote

, &
Pages 658-667 | Received 09 Nov 2015, Accepted 19 Jan 2016, Published online: 16 Feb 2016

References

  • Alzheimer's Association. (2015). 2015 Alzheimer's disease facts and figures. Alzheimer's and Dementia, 11, 332–384.
  • Australian Bureau of Statistics. (2013). Causes of Death, Australia, 2013 (Cat. No. 3303.0). Canberra: Author.
  • Australian Institute of Health and Welfare. (2012). Dementia in Australia (Cat. no. AGE 70). Canberra: Author. Retrieved from: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=10737422943
  • Australian Institute of Health and Welfare. (2013). Australia's welfare series no.11. Cat. no. AUS 174. Canberra: Author. Retrieved from: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129544075
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.
  • Briere, J. (2004). Psychological assessment of adult posttraumatic states: Phenomenology, diagnosis, and measurement (2nd ed.). Washington, DC: American Psychological Association.
  • Brocki, J., & Wearden, A. (2006). A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychology and Health, 21, 87–108.
  • Callahan, C., Arling, G., Wanzhu, T., Rosenman, M., Counsell, S., Stump, T., & Hendrie, H. (2012). Transitions in care for older adults with and without dementia. Journal of American Geriatrics Society, 60, 980–982.
  • Callahan, C., Boustani, M., Weiner, M., Beck, R., Livin, L., Kellams, J., Willis, D., & Hendrie, H. (2001) Implementing dementia care models in primary care settings: The aging brain care medical home. Aging and Mental Health, 15, 5–12. doi:10.1080/13607861003801052
  • Carradice, A., Shankland, M., & Beail, N. (2002). A qualitative study of theoretical models by UK mental health nurses to guides their assessments with family caregivers of people with dementia. International Journal of Nursing Studies, 39, 17–26.
  • Clare, L. (2003). Managing threats to self: Awareness in early stage Alzheimer's disease. Social science and Medicine, 57, 1017–1029.
  • Coaten, R., & Newman-Bluestein, D. (2013). Embodiment and dementia- dance movement psychotherapists respond. Dementia, 12, 677–681. doi:10.1177/1471301213507033
  • Dekel, R., Solomon, Z., & Bleich, A. (2005). Emotional distress and marital adjustment of caregivers: Contribution of the care recipient's level of impairment and of the caregiver's appraised burden. Anxiety Stress Coping, 18, 71–82.
  • Edwards, R., Voss, S., & Iliffe, S. (2014). Education about dementia in primary care: Is person-centredness the key? Dementia, 13, 111–119. doi:10.1177/1471301212451381.
  • Evans, L., & Emmanuel, L. (2014). Impact of dementia on marriage: A qualitative systematic review. Dementia, 13, 330–349.
  • Fauth, E., & Gibbons, A. (2014). Which behavioural 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, 263–271.
  • Figley, C.R., Bride, B.E., & Mazza, N. (1998). The traumatology of grieving. Philadelphia, PA: Brunner/Mazel.
  • Hanson, C., & Clarke, C. (2013). Is expressed emotion related to estimates of ability made by older people with cognitive impairments and their partners? Aging and Mental Health, 17, 535–543. doi:10.1080/13607863.2013.770447
  • Harkness, L., & Zador, N. (2001). Treatment of PTSD in families and couples. In J.P. Wilson, M.J. Friedman, & J.D. Lindy (Eds.), Treating psychological trauma and PTSD (pp. 335–353). New York: Guilford Press.
  • Hege Forsund, L., Skovdahl, K., Kiik, R., & Ytrehus, S. (2014). The loss of a shared lifetime: A qualitative study exploring spouses' experiences of losing couplehood with their partner with dementia living in institutional care. Journal of Clinical Nursing, 24,121–30. doi:10.1111/jocn.12648
  • Joseph, S. (2004). Client-centred therapy, post-traumatic stress and post traumatic growth: Theoretical perspectives and practical implications. Psychology and Psychotherapy: Theory, Research and Practice, 77, 101–120.
  • Joseph, S. (2011). What doesn't kill us: The new psychology of posttraumatic growth. Philadelphia, PA: Perseus Books.
  • Joseph, S., Beer, C., Clarke, D., Forman, A., Pickersgill, M., Swift, J., Taylor, J., & Tischler, V. (2009). Qualitative research into mental health: Reflections on epistemology. Mental Health Review Journal, 14, 37–42.
  • Joseph, S., & Linley, P. (2005). Positive adjustment to threatening life events: An organismic valuing theory of growth through adversity. Review of General Psychology, 9, 262–280.
  • Joseph, S., & Linley, P. (2006). Growth following adversity: Theoretical perspectives and Implications for clinical practice. Clinical Psychology Review, 26, 1041–1053.
  • Kuipers, E., Onwumere, J., & Bebbington, P. (2010). Cognitive model of caregiving in Psychosis. British Journal Of Psychiatry, 196, 259–265.
  • Large, S., & Slinger, R. (2015). Grief in caregivers of persons with Alzheimer's disease and related dementia: A qualitative synthesis. Dementia, 14, 164–183. doi:10.1177/1471301213494511
  • Larkin, M., Eatough, V., & Osborne, M. (2011). Interpretative phenomenological analysis and embodied, active, situated cognition. Theory Psychology, 21, 318–337.
  • Larkin, M., Watts, S., & Clifton, E. (2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3 , 102–120.
  • Lloyd, J., Patterson, T., & Muers, J. (2014). The positive aspects of caregiving in dementia: A critical review of the qualitative literature. Dementia. doi:10.1177/1471301214564792
  • Lyons, M.A. (2001). Living with posttraumatic stress disorder: The wives'/female partners'/perspective. Issues and Innovations in Nursing Practice, 34, 69–77.
  • McCann, I.L., & Pearlman, L.A. (1992). Constructivist self-development theory: A theoretical framework for assessing and treating traumatized college students. Journal of American College Health, 40, 189–196.
  • McCormack, L., & Adams, E. (2015). Therapists, complex trauma, and the medical model: Making meaning of vicarious distress from complex trauma in the inpatient setting. Traumatology. Advance online publication. doi:10.1037/trm0000024
  • McCormack, L., & Joseph, S. (2012). Post-mission Altruistic Identity Disruption (PostAID/Q): Preliminary development of a measure of responses aid work. Traumatology, 18, 41–48. Retrieved from http://dx.doi.org/10.1177/1534765611430726
  • McCormack, L., & Joseph, S. (2014). Psychological growth in aging Vietnam veterans: Redefining shame and betrayal. Journal of Humanistic Psychology, 54, 336–355.
  • Morris, J. (1993). The Clinical Dementia Rating (CDR): Current version and scoring rules. Neurology, 43, 2412–2414.
  • Nelis, S., Clare, L., & Whitaker, C. (2014). Attachment in people with dementia and their caregivers: A systematic review. Dementia, 13, 747–767. doi:10.1177/1471301213485232
  • Nicholls, D., Chang, E., Johnson, A., & Edenborough, M. (2013). Touch, the essence of caring for people with end stage dementia: A mental health perspective in Namaste care. Aging and Mental Health, 17, 571–578. doi:10.1080/13607863.2012.757581
  • Nowell, Z., Thornton, A., & Simpson, J. (2011). The subjective experience of personhood in dementia care settings. Dementia, 12, 394–409. doi:10.1177/1471301211430648
  • Office for National Statistics. (2014). Deaths registered in England and Wales (Series DR), 2013. London: Author.
  • Parker, D., Mills, S., & Abbey, J. (2008). Effectiveness of interventions that assist caregivers to support people with dementia living in the community: A systematic review. International Journal of evidenced Based Healthcare, 6, 137–172.
  • Peel, E., & Harding, R. (2014). It's a huge maze, the system, it's a terrible maze: Dementia Carer's constructions of navigating health and social care services. Dementia, 13, 642–661. doi:10.1177/14713012134805
  • Phillips, J., Pond, D., & Goode, S. (2011). Timely diagnosis of dementia: can we do better (pp. 1–23). Sydney: Alzheimer's Australia.
  • Pringle, J., Drummond, J., McLafferty, E., & Hendry, C. (2011). Interpretative phenomenological analysis: A discussion and critique. Nurse Researcher, 18, 20–24.
  • Quinn, C., Clare, L., & Woods, B. (2009). The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: A systematic review. Aging and Mental Health, 13, 143–154. doi:10.1080/13607860802459799
  • Quinn, C., Clare, L., & Woods, R. (2013). Balancing needs: The role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia. Dementia, 14, 220–237. doi:10.1177/1471301213495863
  • Reid, K., Flowers, P., & Larkin, M. (2005). Exploring lived experience. The Psychologist, 18, 20–23.
  • Runge, C., Gilham, J., & Peut, A. (2009). Transitions in care of people with dementia: A Systematic review of the literature (Cat. no. 11074). Canberra: AIHW. Retrieved from http://www.aihw.gov.au/publication-detail/?id=6442468216
  • Saakvitne, K., Gamble, S., Pearlman, L.A., & Tabor Lev, B. (2000). Risking connection: A training manual for working with survivors of childhood abuse. Baltimore, MD: The Sidran Press.
  • Shinebourne, P. (2011). The theoretical underpinnings of interpretative phenomenological analysis. Existential Analysis, 22, 16–31.
  • Smith, J. (1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health, 11, 261–271.
  • Smith, J. (2011). Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5, 9–27.
  • Smith, J., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage.
  • Spinelli, E. (2005). The interpreted world: An introduction to phenomenological psychology (2nd ed.). London: Sage.
  • Tedeschi, R., & Calhoun, L. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry: An International Journal for the Advancement of Psychological Theory, 15(1), 1–18.
  • Walmsley, B., & McCormack, L. (2014a). The dance of communication: Retaining family membership despite severe non-speech dementia. Dementia, 13:626–641. doi:10.1177/1471301213480359
  • Walmsley, B., & McCormack, L. (2014b). Synthesis of meaning: Negative and positive change in family members following the adversity of dementia. Journal of Humanistic Psychology. Published online 7 November 2014. doi:10.1177/0022167814557547
  • Walmsley, B., & McCormack, L. (2015a). Shame, hope, intimacy and growth: Dementia distress and growth in families from the perspective of senior aged care professionals. Dementia, 1–19. Retrieved from doi:10.1177/1471301215573676
  • Walmsley, B., & McCormack, L. (2015b). Stigma, the medical model and dementia care: Psychological growth in senior health professionals through moral and professional integrity. Dementia, 1–18. doi:1471301215574112
  • World Health Organisation. (2012). Dementia: A public health priority. Alzheimers Disease International, 1–112. Retrieved from http://apps.who.int/iris/bitstream/10665/75263/1/9789241564458_eng.pdf
  • World Health Organisation. (2015). The epidemiology and impact of dementia. Current state and future trends. Geneva: Author.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.