Living with young-onset dementia in the family – a mixed method study

References

• Arai, A., Matsumoto, T., Ikeda, M., & Arai, Y. (2007). Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia? International Journal of Geriatric Psychiatry, 22(12), 1255–1261. https://doi.org/10.1002/gps.1935
   PubMed Web of Science ®Google Scholar
• Aslett, H. J., Huws, J. C., Woods, R. T., & Kelly-Rhind, J. (2019). ‘This is killing me inside’: The impact of having a parent with young-onset dementia. Dementia (London, England), 18(3), 1089–1107. https://doi.org/10.1177/147130121770297
   PubMedGoogle Scholar
• Bakker, C., de Vugt, M. E., van Vliet, D., Verhey, F., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Koopmans, R. T. (2014). Unmet needs and health-related quality of life in young-onset dementia. The American Journal of Geriatric Psychiatry, 22(11), 1121–1130. https://doi.org/10.1016/j.jagp.2013.02.006
   PubMed Web of Science ®Google Scholar
• Beattie, A., Daker-White, G., Gilliard, J., & Means, R. (2004). ‘How can they tell?’A qualitative study of the views of younger people about their dementia and dementia care services. Health & Social Care in the Community, 12(4), 359–368. https://doi.org/10.1111/j.1365-2524.2004.00505.x
   PubMed Web of Science ®Google Scholar
• Berg, B., & Lune, H. (2012). Qualitative research methods for the social sciences (8th ed.). Pearson Education, Inc.
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Brenna, E. (2021). Should I care for my mum or for my kid? Sandwich generation and depression burden in Italy. Health Policy (Amsterdam, Netherlands), 125(3), 415–423. https://doi.org/10.1016/j.healthpol.2020.11.014
   PubMed Web of Science ®Google Scholar
• Bressan, V., Visintini, C., & Palese, A. (2020). What do family caregivers of people with dementia need? A mixed-method systematic review. Health & Social Care in the Community, 28(6), 1942–1960. https://doi.org/10.1111/hsc.13048
   PubMed Web of Science ®Google Scholar
• Cations, M., Withall, A., Horsfall, R., Denham, N., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., Gonski, P., Demirkol, A., Cumming, R. G., & Draper, B. (2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED stud. PLoS One, 12(7), e0180935. https://doi.org/10.1371/journal.pone.0180935
   PubMed Web of Science ®Google Scholar
• Chirico, I., Ottoboni, G., Linarello, S., Ferriani, E., Marrocco, E., & Chattat, R. (2022). Family experience of young-onset dementia: The perspectives of spouses and children. Aging & Mental Health, 26(11), 2243–2251. https://doi.org/10.1080/13607863.2021.2008871
   PubMed Web of Science ®Google Scholar
• Chow, T. W., Pio, F. J., & Rockwood, K. (2016). An international needs assessment of caregivers for frontotemporal dementia. The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques, 38(5), 753–757. https://doi.org/10.1017/S0317167100054147
   Google Scholar
• Coyle-Gilchrist, I. T. S., Dick, K. M., Patterson, K., Vázquez Rodríquez, P., Wehmann, E., Wilcox, A., Lansdall, C. J., Dawson, K. E., Wiggins, J., Mead, S., Brayne, C., & Rowe, J. B. (2016). Prevalence, characteristics, and survival of frontotemporal lobar degeneration syndromes. Neurology, 86(18), 1736–1743. https://doi.org/10.1212/WNL.0000000000002638
   PubMed Web of Science ®Google Scholar
• Ducharme, F., Kergoat, M.-J., Antoine, P., Pasquier, F., & Coulombe, R. (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer’s Disease and Other Dementias, 28(6), 634–641. https://doi.org/10.1177/1533317513494443
   PubMed Web of Science ®Google Scholar
• Egilstrod, B., Ravn, M. B., & Petersen, K. S. (2019). Living with a partner with dementia: A systematic review and thematic synthesis of spouses’ lived experiences of changes in their everyday lives. Aging & Mental Health, 23(5), 541–550. https://doi.org/10.1080/13607863.2018.1433634
   PubMed Web of Science ®Google Scholar
• Engedal, K., & Laks, J. (2017). Forekomst av og risikofaktorer for demenssykdommer i ung alder [Prevalence and risk factors for dementia diseaces in young age]. In A. Johannessen, M. L. Barca, K. Engedal, & P. K. Haugen (Eds.), Yngre personer med demens [Young people wit dementia]. Forlaget Aldring og helse [Publisher Ageing and health].
   Google Scholar
• Eriksen, S., Helvik, A.-S., Juvet, L. K., Skovdahl, K., Førsund, L. H., & Grov, E. K. (2016). The experience of relations in persons with dementia: A systematic meta-synthesis. Dementia and Geriatric Cognitive Disorders, 42(5–6), 342–368. https://doi.org/10.1159/000452404
   PubMed Web of Science ®Google Scholar
• Gelman, C., & Rhames, K. (2020). “I have to be both mother and father”: The impact of young-onset dementia on the partner’s parenting and the children’s experience. Dementia, 19(3), 676–690. https://doi.org/10.1177/1471301218783542
   PubMedGoogle Scholar
• Holdsworth, K., & McCabe, M. (2018). The impact of dementia on relationships, intimacy, and sexuality in later life couples: An integrative qualitative analysis of existing literature. Clinical Gerontologist, 41(1), 3–19. https://doi.org/10.1080/07317115.2017.1380102
   PubMed Web of Science ®Google Scholar
• Hvidsten, L., Engedal, K., Selbæk, G., Wyller, T. B., Bruvik, F., & Kersten, H. (2018). Quality of life in people with young-onset Alzheimer’s dementia and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 45(1–2), 91–104. https://doi.org/10.1159/000487263
   PubMed Web of Science ®Google Scholar
• Ikejima, C., Yasuno, F., Mizukami, K., Sasaki, M., Tanimukai, S., & Asada, T. (2009). Prevalence and causes of early-onset dementia in Japan: A population-based study. Stroke, 40(8), 2709–2714. https://doi.org/10.1161/STROKEAHA.108.542308
   PubMed Web of Science ®Google Scholar
• Johannessen, A., Engedal, K., & Thorsen, K. (2016a). Coping efforts and resilience among adult children who grew up with a parent with young-onset dementia: A qualitative follow-up study. International Journal of Qualitative Studies on Health and Well-Being, 11(1), 30535. https://doi.org/10.3390/geriatrics1040028
   PubMedGoogle Scholar
• Johannessen, A., Engedal, K., & Thorsen, K. (2016b). Family carers of people with young-onset dementia: Their experiences with the supporter service. Geriatrics, 1(4), 28. https://doi.org/10.3390/geriatrics1040028
   PubMedGoogle Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Johannessen, A., Helvik, A. S., Engedal, K., & Thorsen, K. (2017). Experiences and needs of spouses of persons with young-onset frontotemporal lobe dementia during the progression of the disease. Scandinavian Journal of Caring Sciences, 31(4), 779–788. https://doi.org/10.1111/scs.12397
   PubMed Web of Science ®Google Scholar
• Karnatz, T., Monsees, J., Wucherer, D., Michalowsky, B., Zwingmann, I., Halek, M., Hoffmann, W., & Thyrian, J. R. (2021). Burden of caregivers of patients with frontotemporal lobar degeneration–a scoping review. International Psychogeriatrics, 33(9), 891–911. https://doi.org/10.1017/S1041610219000176
   PubMed Web of Science ®Google Scholar
• Kimura, N. R., Maffioletti, V. L., Santos, R. L., Baptista, M. A. T., & Dourado, M. C. (2015). Psychosocial impact of early onset dementia among caregivers. Trends in Psychiatry and Psychotherapy, 37(4), 213–219. https://doi.org/10.1590/2237-6089-2015-0038
   PubMedGoogle Scholar
• Kvale, S., & Brinkmann, S. (2009). Det kvalitative forskningsintervju [The qualitative research interviews]. In 2th. Gyldendal Akademiske [Gyldendal Academic].
   Google Scholar
• Kvello-Alme, M., Bråthen, G., White, L. R., & Sando, S. B. (2019). The prevalence and subtypes of young onset dementia in central Norway: A population-based study. Journal of Alzheimer’s Disease : JAD, 69(2), 479–487. https://doi.org/10.3233/JAD-181223
   PubMed Web of Science ®Google Scholar
• Larochette, C., Wawrziczny, E., Papo, D., Pasquier, F., & Antoine, P. (2020). An acceptance, role transition, and couple dynamics-based program for caregivers: A qualitative study of the experience of spouses of persons with young-onset dementia. Dementia (London, England), 19(8), 2714–2731. https://doi.org/10.1177/1471301219854643
   PubMedGoogle Scholar
• Luscombe, G., Brodaty, H., & Freeth, S. (1998). Younger people with dementia: Diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13(5), 323–330. https://doi.org/10.1002/(SICI)1099-1166
   PubMed Web of Science ®Google Scholar
• Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26(13), 1753–1760. https://doi.org/10.1177/1049732315617
   PubMed Web of Science ®Google Scholar
• Mann Whitney, U. (2007). SPSS for windows (Release 9.0. SPSS Inc, Chicago, Illinois, USA) using chi square and The Neuroradiology Journal, 20, 175–178.
   PubMedGoogle Scholar
• Millenaar, J. K., Bakker, C., Koopmans, R. T., Verhey, F. R., Kurz, A., & de Vugt, M. E. (2016). The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: A systematic review. International Journal of Geriatric Psychiatry, 31(12), 1261–1276. https://doi.org/10.1002/gps.4502
   PubMed Web of Science ®Google Scholar
• Polit, D., & Beck, C. (2017). Nursing research: Generating and assessing evidence for nursing practice (10th ed.). Wolters Kluwer Health/Lippincott Williams & Wilkins, Philadelphia.
   Google Scholar
• Ratnavalli, E., Brayne, C., Dawson, K., & Hodges, J. (2002). The prevalence of frontotemporal dementia. Neurology, 58(11), 1615–1621. https://doi.org/10.1212/WNL.58.11.1615
   PubMed Web of Science ®Google Scholar
• Reynolds, T., Thornicroft, G., Abas, M., Woods, B., Hoe, J., Leese, M., & Orrell, M. (2000). Camberwell assessment of need for the elderly (CANE): Development, validity and reliability. The British Journal of Psychiatry, 176(5), 444–452. https://doi.org/10.1192/bjp.176.5.444
   PubMed Web of Science ®Google Scholar
• Robinson, A. L., Emden, C. G., Croft, T. D., Vosper, G. C., Elder, J. A., Stirling, C., & Vickers, J. C. (2011). Mixed methods data collection in dementia research: A “progressive engagement” approach. Journal of Mixed Methods Research, 5(4), 330–344. https://doi.org/10.1177/1558689811416940
   Web of Science ®Google Scholar
• Rosness, T. A., Engedal, K., & Chemali, Z. (2016). Frontotemporal dementia: An updated clinician’s guide. Journal of Geriatric Psychiatry and Neurology, 29(5), 271–280. https://doi.org/10.1177/0891988716654986
   PubMed Web of Science ®Google Scholar
• Rosness, T. A., Haugen, P. K., Passant, U., & Engedal, K. (2008). Frontotemporal dementia—A clinically complex diagnosis. International Journal of Geriatric Psychiatry, 23(8), 837–842. https://doi.org/10.1002/gps.1992
   PubMed Web of Science ®Google Scholar
• Thorsen, K., & Johannessen, A. (2023). How gender matters in demanding caring for a spouse with young-onset dementia. A narrative study. Journal of Women & Aging, 35(1), 81–97. https://doi.org/10.1080/08952841.2022.2087455
   PubMed Web of Science ®Google Scholar
• Thorsen, K., Dourado, M. C. N., & Johannessen, A. (2020). Developing dementia: The existential experience of the quality of life with young-onset dementia - A longitudinal case study. Dementia (London, England), 19(3), 878–893. https://doi.org/10.1177/1471301218789990
   PubMedGoogle Scholar
• Tookey, S. A., Greaves, C. V., Rohrer, J. D., & Stott, J. (2021). Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review. Dementia (London, England), 20(8), 3032–3054. https://doi.org/10.1177/14713012211022982
   PubMedGoogle Scholar
• Trindade, P. G. E., Johannessen, A., Baptista, M. A. T., Maffiolletti, V., & Dourado, M. C. N. (2023). ‘I do not enjoy too much being with people, it takes me a long time to interact’: A qualitative analysis of awareness of relationships in people with dementia. Aging & Mental Health, 27(6), 1120–1126. https://doi.org/10.1080/13607863.2022.2084503
   PubMed Web of Science ®Google Scholar
• Trindade, P. G. E., Santos, R. L., Johannessen, A., Neto, J. P. S., & Dourado, M. C. N. (2020). Awareness of functional status: People with Alzheimer’s disease abilities to self-report impairment in activities of daily living. Journal of Alzheimer’s Disease Reports, 4(1), 405–415. https://doi.org/10.3233/ADR-200227
   PubMedGoogle Scholar
• van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T., & Verhey, F. R. (2010). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25(11), 1091–1100. https://doi.org/10.1002/gps.2439
   PubMed Web of Science ®Google Scholar
• van Vliet, D., de Vugt, M., Bakker, C., Pijnenburg, Y., Vernooij-Dassen, M., Koopmans, R., & Verhey, F. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43(2), 423–432. https://doi.org/10.1017/S0033291712001122
   PubMed Web of Science ®Google Scholar
• Wammes, J. D., Labrie, N. H., Agogo, G. O., Monin, J. K., de Bekker-Grob, E. W., & MacNeil Vroomen, J. L. (2021). Persons with dementia and informal caregivers prioritizing care: A mixed-methods study. Alzheimer’s & Dementia (New York, N. Y.), 7(1), e12193. https://doi.org/10.1002/trc2.12193
   PubMedGoogle Scholar
• Wawrziczny, E., Antoine, P., Ducharme, F., Kergoat, M.-J., & Pasquier, F. (2016). Couples’ experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics. Dementia (London, England), 15(5), 1082–1099. https://doi.org/10.1177/1471301214554720
   PubMedGoogle Scholar
• Wong, J. F. W., Kirk, A., Perlett, L., Karunanayake, C., Morgan, D., & O’Connell, M. E. (2020). Characteristics of young-onset and late-onset dementia patients at a remote memory clinic. The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques, 47(3), 320–327. https://doi.org/10.1017/cjn.2020.8
   PubMed Web of Science ®Google Scholar
• World Medical Association. (2013). Declaration of Helsinki. http://www.wma.net/en/30publications/10policies/b3/index.html
   Google Scholar
• Zhu, X. C., Tan, L., Wang, H. F., Jiang, T., Cao, L., Wang, C., Wang, J., Tan, C. C., Meng, X. F., & Yu, J. T. (2015). Rate of early onset Alzheimer’s disease: A systematic review and meta-analysis. Annals of Translational Medicine, 3(3), 38. https://doi.org/10.3978/j.issn.2305-5839.2015.01.19
   PubMed Web of Science ®Google Scholar