Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

References

• 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 and Social Care in the Community, 12(4), 359–368.
   PubMed Web of Science ®Google Scholar
• Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L., … Iliffe, S. (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Medicine, 9(10), e1001331. doi:10.1371/journal.pmed.1001331
   PubMed Web of Science ®Google Scholar
• Dementia Action Alliance. (2018). The Dementia Statements. Retrieved from https://www.dementiaaction.org.uk/nationaldementiadeclaration.
   Google Scholar
• Dementia Australia. (2017). Language and communication: Younger Onset Dementia. Retrieved 12th May 2019 from https://www.dementia.org.au/files/helpsheets/Helpsheet-YoungerOnsetDementia04-LanguageAndCommunication_english.pdf.
   Google Scholar
• Draper, B., Cations, M., White, F., Trollor, J., Loy, C., Brodaty, H., … Withall, A. (2016). Time to diagnosis in young-onset dementia and its determinants: The INSPIRED study. International Journal of Geriatric Psychiatry, 31(11), 1217–1224. doi:10.1002/gps.4430
   PubMed Web of Science ®Google Scholar
• Greenhalgh, T., & Peacock, R. (2005). Effectiveness and efficiency of search methods in systematic reviews of complex evidence: Audit of primary sources. BMJ, 331(7524), 1064–1065. doi:10.1136/bmj.38636.593461.68
   PubMed Web of Science ®Google Scholar
• Greenwood, N., & Smith, R. (2016). The experiences of people with young-onset dementia: A meta-ethnographic review of the qualitative literature. Maturitas, 92, 102–109. doi:10.1016/j.maturitas.2016.07.019
   PubMed Web of Science ®Google Scholar
• Griffin, J., Oyebode, J. R., & Allen, J. (2016). Living with a diagnosis of behavioural-variant frontotemporal dementia: The person’s experience. Dementia, 15(6), 1622–1642. doi:10.1177/1471301214568164
   PubMedGoogle Scholar
• Harding, E., Sullivan, M. P., Woodbridge, R., Yong, K. X. X., McIntyre, A., Gilhooly, M. L., … Crutch, S. J. (2018). Because my brain isn”t as active as it should be, my eyes don’t always see’: A qualitative exploration of the stress process for those living with posterior cortical atrophy. BMJ Open, 8(2), e018663–12. doi:10.1136/bmjopen-2017-018663
   PubMedGoogle Scholar
• Harris, P. B. (2004). The perspective of younger people with dementia: Still an overlooked population. Social Work in Mental Health, 2(4), 17–36. doi:10.1300/J200v02n04
   Google Scholar
• 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, Neurosurgery, and Psychiatry, 74(9), 1206–1209. doi:10.1136/jnnp.74.9.1206
   PubMed Web of Science ®Google Scholar
• Hoppe, S. (2019). Shifting uncertainties in the pre-diagnostic trajectory of early-onset dementia. Dementia, 18(2), 613–629. doi:10.1177/1471301216687436
   PubMedGoogle Scholar
• Johannessen, A., & Möller, A. (2013). Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia, 12(4), 410–424. doi:10.1177/1471301211430647
   PubMedGoogle Scholar
• Jonas-Simpson, C. M. (2003). The experience of being listened to: A human becoming study with music. Nursing Science Quarterly, 16(3), 232–238. doi:10.1177/0894318403252452
   PubMed Web of Science ®Google Scholar
• La Fontaine, J., Buckell, A., Knibbs, T., & Palfrey, M. (2014). Clinical psychology in the early stage dementia care pathway. Retrieved from https://www1.bps.org.uk/system/files/user-files/DCP Faculty for the Psychology of Older People %28FPoP%29/public/clinical_psychology_in_early_stage_dementia_care_pathway.pdf
   Google Scholar
• Mayrhofer, A., Mathie, E., McKeown, J., Bunn, F., & Goodman, C. (2018). Age-appropriate services for people diagnosed with young onset dementia (YOD): A systematic review. Aging & Mental Health, 22(8), 927–935. doi:10.1080/13607863.2017.1334038
   PubMed Web of Science ®Google Scholar
• Mercy, L., Hodges, J. R., Dawson, K., Barker, R. A., & Brayne, C. (2008). Incidence of early-onset dementias in Cambridgeshire, United Kingdom. Neurology, 71(19), 1496–1499. doi:10.1212/01.wnl.0000334277.16896.fa
   PubMed Web of Science ®Google Scholar
• Millenaar, J. K., Bakker, C., Koopmans, R. T. C. M., Verhey, F. R. J., 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. doi:10.1002/gps.4502
   PubMed Web of Science ®Google Scholar
• Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2010). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. International Journal of Surgery, 8(5), 336–341. doi:10.1016/j.ijsu.2010.02.007
   PubMed Web of Science ®Google Scholar
• National Collaborating Centre for Mental Health. (2007). Dementia: A NICE-SCIE Guideline on Supporting People With Dementia and Their Carers in Health and Social Care. Leicester, UK: British Psychological Society. (NICE Clinical Guidelines, No. 42.) 4, DEMENTIA. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK55480/
   Google Scholar
• Rabanal, L. I., Chatwin, J., Walker, A., O’Sullivan, M., & Williamson, T. (2018). Understanding the needs and experiences of people with young onset dementia: A qualitative study. BMJ Open, 8(10), e021166–9. doi:10.1136/bmjopen-2017-021166
   PubMed Web of Science ®Google Scholar
• Roach, P., Drummond, N., & Keady, J. (2016). `Nobody would say that it is Alzheimer’s or dementia at this age’: Family adjustment following a diagnosis of early-onset dementia. Journal of Aging Studies, 36, 26–32. doi:10.1016/j.jaging.2015.12.001
   PubMed Web of Science ®Google Scholar
• Roach, P., Keady, J., & Bee, P. (2012). It”s easier just to separate them’: Practice constructions in the mental health care and support of younger people with dementia and their families. Journal of Psychiatric and Mental Health Nursing, 19(6), 555–562. doi:10.1111/j.1365-2850.2011.01836.x
   PubMed Web of Science ®Google Scholar
• Roach, P., Keady, J., Bee, P., & Williams, S. (2014). ‘We can’t keep going on like this’: Identifying family storylines in young onset dementia. Ageing and Society, 34(8), 1397–1426. doi:10.1017/S0144686X13000202
   Web of Science ®Google Scholar
• Rohra, H. (2016). Dementia activist: Fighting for our rights. London: Jessica Kingsley Publishers.
   Google Scholar
• Rosness, T. A., Engedal, K., & Chemali, Z. (2016). Frontotemporal dementia: An updated clinicians guide. Journal of Geriatric Psychiatry and Neurology, 29(5), 271–280. doi:10.1177/0891988716654986
   PubMed Web of Science ®Google Scholar
• Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M., & Warren, J. D. (2010). The diagnosis of young-onset dementia. The Lancet Neurology, 9(8), 793–806. doi:10.1016/S1474-4422(10)70159-9
   PubMed Web of Science ®Google Scholar
• Sansoni, J., Duncan, C., Grootemaat, P., Capell, J., Samsa, P., & Westera, A. (2016). Younger onset dementia: A review of the literature to inform service development. American Journal of Alzheimer's Disease & Other Dementiasr, 31(8), 693–705. doi:10.1177/1533317515619481
   PubMed Web of Science ®Google Scholar
• Shinagawa, S., Nakajima, S., Plitman, E., Graff-Guerrero, A., Mimura, M., Nakayama, K., & Miller, B. L. (2014). Psychosis in frontotemporal dementia. Journal of Alzheimer's Disease, 42(2), 485–499.
   PubMed Web of Science ®Google Scholar
• Stamou, V., La Fontaine, J., Oyebode, J., Jones, B., Gage, H., O’Malley, M., … Carter, J. (2018). The ANGELA Project: Improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters. FPOP (142), 26-31. doi:10.1093/bjsw/bcs140.
   Google Scholar
• Svanberg, E., Spector, A., & Stott, J. (2011). The impact of young onset dementia on the family: A literature review. International Psychogeriatrics, 23(3), 356–371. doi:10.1017/S1041610210001353
   PubMed Web of Science ®Google Scholar
• Swaffer, K. (2016). What the hell happened to by brain? London, UK: Jessica Kingsley Publishers.
   Google Scholar
• Van Vliet, D., De Vugt, M. E., Bakker, C., Koopmans, R. T. C. M., Pijnenburg, Y. A. L., Vernooij-Dassen, M. J. F. J., & Verhey, F. R. J. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: A long and winding road. International Psychogeriatrics, 23(9), 1393–1404. doi:10.1017/S1041610211001013
   PubMed Web of Science ®Google Scholar
• Van Vliet, D., De Vugt, M. E., Bakker, C., Pijnenburg, Y. A L., Vernooij-Dassen, M. J. F. J., Koopmans, R. T. C. M., & Verhey, F. R. J. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43(2), 423–432. doi:10.1017/S0033291712001122
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M., Derksen, E., Scheltens, P., & Moniz-Cook, E. (2006). Receiving a diagnosis of dementia: The experience over time. Dementia, 5(3), 397–410. doi:10.1177/1471301206067114
   Google Scholar
• Vieira, R. T., Caixeta, L., Machado, S., Cardoso, S., Adriana Nardi, A. E., Arias-Carrión, O., & Giovanni Carta, M. (2013). Epidemiology of early-onset dementia: A review of the literature. Clinical Practice & Epidemiology in Mental Health, 9(1), 88–95. doi:10.2174/1745017901309010088
   PubMedGoogle Scholar
• Walsh, D., & Downe, S. (2006). Appraising the quality of qualitative research. Midwifery, 22(2), 108–119. doi:10.1016/j.midw.2005.05.004
   PubMed Web of Science ®Google Scholar
• Watts, S., McCabe, R., & Guss, R. (2018). Communicating a diagnosis of dementia. British Psychological Society: Faculty for the Psychology of Older People (FPOP), 1-34. doi:10.1027/1015-5759/a000054
   Google Scholar
• Wawrziczny, E., Pasquier, F., Ducharme, F., Kergoat, M.-J., & Antoine, P. (2016). From `needing to know’ to `needing not to know more’: an interpretative phenomenological analysis of couples’ experiences with early-onset Alzheimer’s disease. Scandinavian Journal of Caring Sciences, 30(4), 695–703. doi:10.1111/scs.12290
   PubMed Web of Science ®Google Scholar
• Williams, T., Dearden, A. M., & Cameron, I. H. (2001). From pillar to post – a study of younger people with dementia. Psychiatric Bulletin, 25(10), 384–387. doi:10.1192/pb.25.10.384
   Google Scholar
• Woolley, J. D., Khan, B. K., Murthy, N. K., Miller, B. L., & Rankin, K. P. (2011). The diagnostic challenge of psychiatric symptoms in neurodegenerative disease; rates of and risk factors for prior psychiatric disgnosis in patients with early neurodegenerative disease. The Journal of Clinical Psychiatry, 72(02), 126–133. doi:10.4088/JCP.10m06382oli.The
   PubMedGoogle Scholar