197
Views
9
CrossRef citations to date
0
Altmetric
Original Research

Coping with transitions in life: a four-year longitudinal narrative study of single younger people with dementia

, , , &
Pages 479-492 | Published online: 28 Jun 2019

References

  • Engedal K, Laks J. Forekomst av og risikofaktorer for demenssykdom i ung alder [Occurrence of and risk factors for dementia at a young age] In: Johannessen A, Barca ML, Engedal K, Haugen P, editors. Yngre Personer Med Demens [Younger People with Dementia]. Tønsberg: Forlaget Aldring og helse [Publisher Ageing and Health]; 2017:31–39.
  • Zhu XC, Tan L, Wang HF, et al. Rate of early onset Alzheimer’s disease: A systematic review and meta-analysis. Ann Transl Med. 2015;3(3):38.25815299
  • Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: A systematic review and metaanalysis. Alzheimers Dement. 2013;9(1):63–75.e62. doi:10.1016/j.jalz.2012.11.00723305823
  • Johannessen A, Engedal K, Haugen PK, Dourado MCN, Thorsen K. “To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone. Int J Qual Stud Health Well-Being. 2018;13(1):1490620. doi:10.1080/17482631.2018.149062029975182
  • Thorsen K, Dourado MCN, Johannessen A. Developing dementia: the existential experience of the quality of life with young-onset dementia - A longitudinal case study. Dementia. Epub 2018 Jul 30 .
  • Borley G, Sixsmith J, Church S. How does a woman with alzheimer’s disease make sense of becoming cared for? Dementia. 2016;15(6):1405–1421. doi:10.1177/147130121456164725476006
  • Koedam EL, Pijnenburg YA, Deeg DJ, et al. Early-onset dementia is associated with higher mortality. Dement Geriatr Cogn Disord. 2008;26(2):147–152. doi:10.1159/00014958518679029
  • Spreadbury JH, Kipps C. Measuring younger onset dementia: what the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia. 2017;18(1):135–156. https://doi.org/10.1177/1471301216684401
  • Johannessen A, Moller A. Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia. 2013;12(4):410–424. doi:10.1177/147130121143064724336952
  • Haugen PK. Demens Før 65 År. Fakta, Utfordringer Og Anbefalinger [Dementia Befor the Age of 65 Years. Facts, Demands and Suggestions]. Tønsberg: Forlaget Aldring og helse [Publisher Ageing and Health]; 2012.
  • Caddell LS, Clare L. The impact of dementia on self and identity: A systematic review. Clin Psychol Rev. 2010;30(1):113–126. doi:10.1016/j.cpr.2009.10.00319896760
  • Manthorpe J, Samsi K, Campbell S, et al. From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. Br J Gen Pract. 2013;63(606):e69–75. doi:10.3399/bjgp13X66080523336476
  • Norberg A. Identitetsverdighet hos personer med demens [Identity worthiness of people with dementia]. Demens & Alderspsykiatri. 2016;20(4):26–29.
  • Tranvåg O. I verdighetens navn” - om verdighetsbevarende omsorg for personer med demens [In the name of dignity” - about the preservation of dignity for persons with dementia]. Demens & Alderspsykiatri. 2017;21(1):35–39.
  • Patterson KM, Clarke C, Wolverson EL, et al. Through the eyes of others - the social experiences of people with dementia: a systematic literature review and synthesis. Int Psychogeriatr. 2018;30(6):791–805. doi:10.1017/S104161021600237429970210
  • Roach P, Drummond N. ‘It’s nice to have something to do’: early-onset dementia and maintaining purposeful activity. J Psychiatr Ment Health Nurs. 2014;21(10):889–895. doi:10.1111/jpm.1215424841949
  • Robinson L, Gemski A, Abley C, et al. The transition to dementia-individual and family experiences of receiving a diagnosis: A review. Int Psychogeriatr. 2011;23(7):1026–1043. doi:10.1017/S104161021000243721281553
  • Helse- og omsorgsdepartementet [Ministry of Health and Care Services]. Dementia Plan 2015. Oslo: Norwegian Ministry of Health and Care Services; 2015.
  • Health Do. Living Well with Dementia: A National Dementia Strategy. Department of Health and Social Care: London; 2009.
  • International AsD. Dementia: A Public Health Priority. World Health Organization (WHO); 2012.
  • Miranda-Castillo C, Woods B, Orrell M. People with dementia living alone: what are their needs and what kind of support are they receiving? Int Psychogeriatr. 2010;22(4):607–617. doi:10.1017/S104161021000013X20214844
  • Luppa M, Luck T, Weyerer S, Konig HH, Brahler E, Riedel-Heller SG. Prediction of institutionalization in the elderly: A systematic review. Age Ageing. 2010;39(1):31–38. doi:10.1093/ageing/afp20219934075
  • Frank C, Forbes RF. A patient’s experience in dementia care: using the “lived experience” to improve care. Can Fam Physician. 2017;63(1):22–26.28115436
  • Chemali Z, Schamber S, Tarbi E, Acar D, Avila-Urizar M. Diagnosing early onset dementia and then what? A frustrating system of aftercare resources. Int J Gen Med. 2012;5:81–86. doi:10.2147/IJGM.S2652322287850
  • Svanstrom R, Sundler AJ. Gradually losing one’s foothold-a fragmented existence when living alone with dementia. Dementia. 2015;14(2):145–163. doi:10.1177/147130121349451024339094
  • Rostad D, Hellzén O, Enmarker I. The meaning of being young with dementia and living at home. Nurs Rep. 2013;3:1. doi:10.4081/nursrep.2013.e3
  • Mayrhofer A, Mathie E, McKeown J, Bunn F, Goodman C. Age-appropriate services for people diagnosed with young onset dementia: A systematic review. Aging Ment Health. 2018;22(8):927–935. doi:10.1080/13607863.2017.133403828621549
  • Giele JZ, Elder GH. Methods of Life Course Research. London: Sage Publications; 1998.
  • Robertson G. Transitions in later life: a review of the challenges and opportunities for policy development. Working Older People. 2014;18(4):186–196. doi:10.1108/WWOP-08-2014-0022
  • Schlossberg NK, Waters EB, Goodman J. Counseling Adults in Transition: Linking Practice with Theory. New York: Springer Publishing Company; 1995.
  • Hansen T, Slagsvold B. Alder og livskvalitet [Age and quality of life] In: Næss S, Moum T, Eriksen J, editors. Research on the Good Life. Bergen: Fagbokforlaget [Publisher Fagbok]; 2011
  • Baltes M, Carstensen L. The process of successful aging: selection, optimization and compensation In: Baltes M, Carstensen L, editors. Understanding Human Development. Heidelberg: Springer; 2003:81–104.
  • Baltes P, Baltes M. Psychological perspectives on successful aging: the model of selective optimization with compensation In: Baltes P, Baltes M, editors. Successful Aging: Perspectives from the Behavioral Sciences. New York: Cambridge University Press; 1990:1–31.
  • Bonanno G. Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? Am Psychologist. 2004;59(1):20–28. doi:10.1037/0003-066X.59.1.20
  • Atchley RC. A continuity theory of normal aging. Gerontologist. 1989;29(2):183–190. doi:10.1093/geront/29.2.1832519525
  • Brandstädter J. Goal pursuit and goal adjustment: self-regulation and intentional self-development in changing developmental contexts. Adv Life Course Res. 2009;14(1–2):52–62. doi:10.1016/j.alcr.2009.03.002
  • Smith G, Hayslip B. Resilience in adulthood and later life: what does it mean and where are we heading? Annu Rev Gerontol Geriatr. 2012;32(1). doi:10.1891/0198-8794.32.3
  • Wiles JL, Wild K, Kerse N, Allen RES. Resilience from the point of view of older people: ‘There’s still life beyond a funny knee’. Soc Sci Med. 2012;74(3):416–424. doi:10.1016/j.socscimed.2011.11.00522204841
  • Gallacher J, Mitchell C, Heslop L, Christopher G. Resilience to health related adversity in older people. Qual Ageing Older Adults. 2012;13(3):197–204. doi:10.1108/14717791211264188
  • Brandstädter J. The Resiliency of the Aging Self: Strategies and Mechanisms of Adaptation. Amsterdam: European Congress of Gerontology; 1995.
  • Uri H. Hvem Sa Hva? Kvinner, Menn Og Språk. Oslo: Gyldendal; 2018.
  • Denzin N, Lincoln Y. The SAGE Handbook of Qualitative Research. London: Sage Publications Ltd; 2011.
  • Solomon P, Nixon S, Bond V, Cameron C, Gervais N. Two approaches to longitudinal qualitative analyses in rehabilitation and disability research. Disabil Rehabil. 2019;1–7. doi:10.1080/09638288.2019.1602850
  • Chase SE. Still the field in the making In: Denzin N, Lincoln YS, editors. The Sage Handbook of Qualitative Research. London: Sage; 2011:421–434.
  • Corbin J, Strauss A. A Basics of Qualitative Research. Los Angeles CA: Sage Publications Ltd; 2008.
  • World Medical Association. Declaration of helsinki; 2013 http://www.wma.net/en/30publications/10policies/b3/index.html. Accessed May 15, 2019.
  • Taylor R. Alzheimer’s from the inside Out. Baltimore: Health Professions Press; 2007.
  • de Baggio T. Losing My Mind: An Intimate Look at Life with Alzheimer’s Disease. New Yoek: Free Press; 2002.
  • de Baggio T. When It Gets Darker: An Enlightened Reflection on Life with Alzheimer’s. New York: Free Press; 2003.
  • Voris E, Shabahangi N, Fox P. Conversation with Ed: Waiting for Forgetfulness. Why are We so Afraid of Alzheimer’s Disease? San Fransisco: Elders Academy Press; 2009.
  • Rose L. Larry’s Way: Another Look at Alzheimer’s from the Inside. New York: iUniverse Inc; 2003.
  • Folkman S, Lazarus RS. An analysis of coping in a middle-aged community. J Health Soc Behav. 1980;21(3):219–239.7410799
  • Heckhausen J, Schulz R. A life-span theory of control. Psychol Rev. 1995;102(2):284–304.7740091
  • Behuniak S. The living dead? The construction of people with alzheimer’s disease as zombies. Ageing Soc. 2011;31:1. doi:10.1017/S0144686X10000693
  • Aquilina C, Hughes J. The return of living dead. Agency lost and found? In: Hughes J, Louw S, Sabat S, editors. Dementia: Mind, Meaning, and the Person. Oxford: Oxford University Press; 2006:143–161.
  • Pearlin LI, Schooler C. The structure of coping. J Health Soc Behav. 1978;19(1):2–21.649936
  • Bode C, de Ridder DT, Kuijer RG, Bensing JM. Effects of an intervention promoting proactive coping competencies in middle and late adulthood. Gerontologist. 2007;47(1):42–51. doi:10.1093/geront/47.1.4217327539
  • Kim E, Park N, Peterson C. Dispositional optimism protects older adults from stroke: the health and retirement study. Stroke. 2011;42(10):2855–2859. doi:10.1161/STROKEAHA.111.61344821778446
  • Giltay EJ, Zitman FG, Kromhout D. Dispositional optimism and the risk of depressive symptoms during 15 years of follow-up: the zutphen elderly study. J Affect Disord. 2006;91(1):45–52. doi:10.1016/j.jad.2005.12.02716443281
  • Diener E, Chan M. Happy people live longer: subjective well‐being contributes to health and longevity. Applied Psychol. 2011;3(1):1–43.
  • Seligman M. Learned Optimism: How to Change Your Mind and Your Life. Vintage. The New York Times  Book Review Vintage Books: Vintage; 2006.
  • Robertson G. How to Age Positively: A Handbook for Personal Development in Later Life. Bristol: Positive Ageing Associates; 2013.
  • Hagestad G. Interdependent lives and relationships in changing times. A life course view of families and aging In: Setters R, editor. Invitation to the Life Course: Toward New Understandings in Later Life. New York: Baywood Publishing Company Inc.; 2003:297–307.
  • Brandtstädter J, Rothermund K, Kranz D, Kühn W. Final decentrations: personal goals, rationality perspectives, and the awareness of life’s finitude. Eur Psychol. 2010;15(2):152–163. doi:10.1027/1016-9040/a000019
  • Böckerman P, Johansson E, Saarni S. Institutionalisation and subjective wellbeing for old-age individuals: is life really miserable in care homes? Ageing Soc. 2012;32(7):1176–1192. doi:10.1017/S0144686X1100081X
  • Lee DT, Woo J, Mackenzie AE. A review of older people’s experiences with residential care placement. J Adv Nurs. 2002;37(1):19–27.11784394
  • Heliker D, Scholler-Jaquish A. Transition of new residents to long-term care: basing practice on residents’ perspective. J Gerontol Nurs. 2006;32(9):34–42.
  • Cronfalk BS, Norberg A, Ternestedt BM. They are still the same - family members’ stories about their relatives with dementia disorders as residents in a nursing home. Scand J Caring Sci. 2018;32(1):168–176. doi:10.1111/scs.1244228464382
  • Rustad EC, Furnes B, Cronfalk BS, Dysvik E. Older patients’ experiences during care transition. Patient Prefer Adherence. 2016;10:769–779. doi:10.2147/PPA.S9757027274204
  • Kvale S, Brinkmann S. Det Kvalitative Forskningsintervju [The Qualitative Research Interview]. Oslo: Gyldendal akademisk [Gyldendal academic]; 2009.