Care for younger people with dementia during the progression of the disease: Care promoting quality of life?
DOI:
https://doi.org/10.7557/14.5851Keywords:
Early-onset dementia, care, progression of dementia, last stages, validation, identity supportAbstract
Younger people with dementia (YOD) (< 65 years) have other life experiences and needs than elderly people with dementia. Adequate help in early stages may be of little use later. Younger people with dementia living alone will be especially vulnerable when public help is insufficient or not adapted to their needs. This article exposes and discusses experiences and needs in different stages of dementia from a narrative longitudinal study over five years with ten participants with YOD living alone, focusing on the last stages. The narrative of Elsa will elaborate her reactions with YOD during the development of dementia. At home Elsa sensed anxiety, depression and loneliness. After moving into a well-organized nursing home, she experienced vitalization, community and sense of meaning. In later stages of dementia, she experienced increasing distance to the other residents and social isolation. She felt neglected by the personnel – “not seen” and validated. She lacks identity-support. During all stages of dementia, health personnel must validate people with YOD and provide person-centered care and identity support.
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References
Atchley, R. C. (1989). A continuity theory of normal aging. The Gerontologist, 29(2), 183-190. https://doi.org/10.1093/geront/29.2.183
Baptista, M. A. T., Santos, R. L., Kimura, N., Lacerda, I. B., Johannessen, A., et al., & Dourado, M. C. N. (2016). Quality of life in young onset dementia: An updated systematic review. Trends Psychiatry Psychotherapy, 38(1), 6-13. https://doi.org/10.1590/2237-6089-2015-0049
Cabote, C. J., Bramble, M., & McCann, D. (2015). Family caregivers’ experiences of caring for a relative with younger onset dementia: A qualitative systematic review. Journal of Family Nursing, 21(3), 443-468. https://doi.org/10.1177/1074840715573870
Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of American Academic Nurse Practice, 20(8), 423-8. https://doi.org/10.1111/j.1745-7599.2008.00342.x
Engedal, K., & Laks, J. (2017). Forekomst og risikofaktorer til demens i ung alder. I A. Johannessen, L. M. Barca, K. Engedal., & P. K. Haugen. (Red.), Yngre personer med demens-en lærebok, Tønsberg: Forlaget Aldring og helse.
Engedal, K., & Haugen, P. K. (2018). Demens: sykdommer, diagnostikk og behandling. (Red.), Tønsberg: Forlaget Aldring og helse.
Folkehelseinstituttet (2020). Livskvalitet. Hentet fra https://www.fhi.no/fp/psykiskhelse/livskvalitet-og-trivsel/livskvalitet-og-trivsel/
Fossland, T., & Thorsen, K. (2010). Livshistorier i teori og praksis. Oslo: Fagbokforlaget.
Gjøra, L., Kjelvik, G., Heine Strand, B., Kvello-Alme, M., & Selbæk, G. (2020). Forekomst av demens i Norge. Tønsberg: Forlaget Aldring og helse.
Harvey, R. J., Skelton-Robinson, M., & Rossor, M. N. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology and Neurosurgery Psychiatry, 74(9), 1206-1209. https://doi.org/10.1136/jnnp.74.9.1206
Haugen, P. K. (2012). Demens før 65 år. Fakta, utfordringer og anbefalinger. Tønsberg: Forlaget Aldring og helse.
Helse- og omsorgsdepartementet (2007). Demensplan 2015. "Den gode dagen". Delplan til Omsorgsplan. Hentet fra https://www.regjeringen.no/globalassets/upload/hod/vedlegg/omsorgsplan_2015/demensplan2015.pdf
Helse- og omsorgsdepartementet (2015). Demensplan 2020. Et mer demensvennlig samfunn. Hentet fra https://www.regjeringen.no/no/dokumenter/demensplan-2020/id2465117/
Helse- og omsorgsdepartementet (2020). Demensplan 2025. Hentet fra https://www.regjeringen.no/contentassets/b3ab825ce67f4d73bd24010e1fc05260/demensplan-2025.pdf
Helse- og omsorgsdepartementet (2017-2018). Leve hele livet — En kvalitetsreform for eldre, Meld. St. 15. Hentet fra https://www.regjeringen.no/no/dokumenter/meld.-st.-15-20172018/id2599850/n
Helsedirektoratet (2017): Nasjonal retningslinje for demens. Hentet fra: https://www.helsedirektoratet.no/retningslinjer/demens/personsentrert-omsorg-og-behandling-ved-demens
Herrmann, L. K., Welter, E., Leverenz, J., Lerner, A. J., Udelson, N., Kanetsky, C., & Sajatovic, M. (2018). A systematic review of dementia-related stigma research: can we move the stigma dial? American Journal of Geriatric Psychiatry, 26(3), 316-331. https://doi.org/10.1016/j.jagp.2017.09.006
Hvidsten, L., Engedal, K., Selbæk, G., Wyller, T. B., Benth, J. Š., & Kersten, H. (2019). Quality of life in people with young-onset dementia: a Nordic two-year observational multicenter study. Journal of Alzheimer's Disease, 67(1), 197-210. https://doi.org/10.3233/JAD-180479
Johannessen, A., & Möller, A. (2013). Experiences of persons with early-onset dementia in everyday life: a qualitative study. Dementia, 12(4), 410-424. https://doi.org/10.1177/1471301211430647
Johannessen, A., Hallberg, U., & Möller, A. (2013). Motivating and discouraging factors with being a support contact in the dementia care sector: a grounded theory study. Scandinavian Journal of Disability Research, 15(1), 70–81. https://doi.org/10.1080/15017419.2012.667000
Johannessen, A., Engedal, K., Haugen, P. K., Dourado, M. C. N., & Thorsen, K. (2018). “To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone. International Journal of Qualitative Studies on Health and Well-being, 13(1), 1490620. https://doi.org/10.1080/17482631.2018.1490620
Johannessen, A., & Thorsen, K. (2018). Personsentrert omsorg i praksis: Fire perspektiver på støttekontakttjenesten i demensomsorgen - en case-studiedesign. Nordisk Tidsskrift for Helseforskning, 14(2). https://doi.org/ 10.7557/14.4323
Josselson, R. (2011). Narrative Research: constructing, Deconstructing, and Reconstructing Story. I F. J. Wertz, K. Charmaz, L. M. McMullen, R. Josselson, R. Anderson., & E. McSpadden. (Red.). Five Ways of Doing Qualitative Analysis. New York: The Guilford Press.
Kitwood, T. (1997). Dementia reconsidered. The person comes first. Norfolk: Open University Press.
Kohut, H. (1985). On the Continuity of the Self and Cultural Self Objects. I H. Kohut (Red.), Self Psychology and the Humanities. New York: W. W. Norton & Company.
Krohne, K., & Nicolaisen, M, (2020). Noen som ser meg. De aller eldstes erfaringer med å ha en besøkskontakt fra Røde Kors. Rapport Røde Kors: Oslo. Hentet fra https://www.aldringoghelse.no/wp-content/uploads/2020/12/eldredagen-rapport-om-eldste-eldre-011020.pdf
Kvale, S., & Brinkmann, S. (2009). Det kvalitative forskningsintervju. Oslo: Gyldendal akademisk.
Kvam, S., Dypaune, T., & Saga, S. (2016). Dagaktivitetstilbud til yngre personer med demenssykdom. Evalueringsrapport: Lavollen aktivitetssenter. Rapportserie; 9/2016. Trondheim: NTNU.
Larsen, L. S., Normann, H. K., & Hamran, T. (2019). Continuity of home-based care for persons with dementia from formal and family caregivers' perspective. Dementia. 18(3):846-863. https://doi.org/10.1177/1471301216682626
Leknes, S., Løkken, S. A., Syse, S., & Tønnesen, M. (2018). Befolkningsframskrivningen 2018. Oslo: Statistisk sentralbyrå. Hentet fra http://hdl.handle.net/11250/2558090. https://ssb.brage.unit.no/ssb-xmlui/handle/11250/2558090
Melby, L., Obstfelder, A., & Hellesø, R. (2018). “We Tie Up the Loose Ends”: Homecare Nursing in a Changing Health Care Landscape. Global Qualitative Nursing Research, 5:233339361881678. https://doi.org/ 10.1177/2333393618816780
Norberg, A. (2017). Identitetsverdighet hos personer med demens. Demens & Alderspsykiatri, 21(1), 4-8.
Power, G. A. (2016). Dementia Beyond Disease: Enhancing Wellbeing. Baltimore: Health Professional Press. ISBN-13 9781938870699.
Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global prevalence of dementia: a systematic review and meta-analysis. Alzheimer's & Dementia, 9(1), 63–75.e62. https://doi.org/10.1016/j.jalz.2012.11.007
Riessman, C. K. (2008). Narrative methods for the human sciences. 11th edition. Thousand Oaks, CA: Sage. Merriam Webster’s Collegiate Dictionary.
Rosness, T. A., Haugen, P. K., Passant, U., & Engedal, K. (2008). Frontotemporal dementia: a clinically complex diagnosis. Int J Geriatr Psychiatry, 23(8), 837-842. https://doi.org/10.1002/gps.1992
Sousa, M. F. B., Santos, R. L., Simoes, P., Conde-Sala, J. L., & Dourado, M. C. N. (2018). Discrepancies between Alzheimer’s disease patients’ and caregivers’ ratings about patients’ quality of life: a 1-year observation study in Brazil. Alzheimer Disease and Associated Disorders, 32(3), 240–246. https://doi.org/10.1097/wad.0000000000000232
Strandenæs, M. G., Lund, A., & Rokstad, A. M. M. (2017). Experiences of attending day care services designed for people with dementia – a qualitative study with individual interviews. Aging and Mental Health. 22(6), 764-772. https://doi.org/10.1080/13607863.2017.1304892
Sørvoll, J., & Hansen, T. (2019). Aktivitetsvenn. En studie av et frivillig tilbud rettet mot personer med demens med vekt på de frivilliges erfaringer. Rapport 4/19 Oslo: NOVA (fagarkivet.oslomet.no).
The WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World health Organization. Soc. Sci.med. 41(10), 1403-1409. https://doi.org/10.1016/0277-9536(95)00112-K
Thorsen, K., & Johannessen, A. (2020). Lydhør identitetsstøtte i samtaler med personer med demens. Nordisk tidsskrift for helseforskning, 16(2), 1-24. https://doi.org/10.7557/14.5345.
Thorsen, K., Dourado, M. C. N., & Johannessen, A. (2020). Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study. International Journal of Qualitative Studies on Health and Well-being, 15(1), 1798711. https://doi.org/10.1080/17482631.2020.1798711
Tranvåg, O., Petersen, K. A., & Nåden, D. J. D. (2016). Crucial dimensions constituting dignity experience in persons living with dementia. Dementia, 15(4), 578-595. https://doi.org/10.1177/1471301214529783
Tretteteig, S., Thorsen, K., & Rokstad, A. M. M. (2019). Pårørendes erfaringer av kvalitet i helse-og omsorgstjenester til personer med demens og pårørende. En longitudinell narrativ studie. Tidsskriftet aldring og helse, 23(4), 56-64.
Vossius, C., Selbæk, G., Ydstebø, A. E., Benth, J. S., Godager, G., Lurås, H., & Berg, S. (2015). Ressursbruk og sykdomsforløp ved demens (REDIC). Kortversjon. Ottestad: Alderspsykiatrisk forskningssenter Sykehuset Innlandet, Regionalt kompetansesenter for eldremedisin og samhandling i Helse Vest (SESAM).
Wogn-Henriksen, K. (2012). "Du må skape deg et liv." En kvalitativ studie om å oppleve og leve med demens basert på intervjuer med en gruppe personer med tidlig debuterende Alzheimers sykdom. (Doktoravhandling, NTNU, Trondheim) Hentet fra http://hdl.handle.net/11250/2416258
World Health Organization (WHO), (2020). Dementia. Hentet fra: https://www.who.int/news-room/fact-sheets/detail/dementia
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