References
- Beattie, A.M., Daker-White, G., Gilliard, J. & Means, R. (2002). Younger people in dementia care: A review of service needs, service provision and models of good practice. Aging and Mental Health, 6, 205–212.
- Boss, P. (2000). Ambiguous Loss: Learning to Live with Unresolved Grief. Boston: Harvard University Press.
- Charles, G., Marshall, S. & Stainton, T. (2010). Demographics profiles and initial results from the British Columbia Young Carers Study. Relational Child and Youth Care Practice, 23, 64–67.
- Chow, T.W., Pio, F.J. & Rockwood, K. (2011). An international needs assessment of caregivers for frontotemporal dementia. Canadian Journal of Neurological Sciences, 38, 753–757.
- Cooke, M., Moyle, W., Shum, D., Harrison, S. & Murfield, J. (2010). A randomized controlled trial exploring the effect of music on quality of life and depression in older people with dementia. Journal of Health Psychology, 15, 765–776.
- Cummings, J.L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D.A. & Gornbein, J. (1994). The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308–2314.
- Dempsey, M. & Baago, S. (1998). Latent grief: The unique and hidden grief of caregivers of loved ones with dementia. American Journal of Alzheimer's Disease and Other Dementias, 13, 84–91.
- Dearden, C. & Becker, S. (2004). Young Carers in the UK: The 2004 Report. London: Carers UK, p. 19. http://www.lboro.ac.uk/departments/ss/centres/YCRG/youngCarersDownload/YCReport2004%5B1%5D.pdf
- Denny, S.S., Morhardt, D., Gaul, J.E., Lester, P., Andersen, G., Higgins, P.J. & Nee, L. (2012). Caring for children of parents with frontotemporal degeneration: A report of the AFTD Task Force on Families with Children. American Journal of Alzheimer's Disease and Other Dementias, 8, 568–578.
- de Vugt, M.E., Riedijk, S.R., Aalten, P., Tibben, A., van Swieten, J.C. & Verhey, F.R. (2006). Impact of behavioural problems on spousal caregivers: A comparison between Alzheimer's disease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 35–41.
- Donath, C., Winkler, A., Graessel, E. & Luttenberger, K. (2011). Day care for dementia patients from a family caregiver’s point of view: A questionnaire study on expected quality and predictors of utilization – Part II. BMC Health Services Research11, 76.
- Freyne, A., Kidd, N., Coen, R. & Lawlor, B.A. (1999). Burden in carers of dementia patients: Higher levels in carers of younger sufferers. International Journal of Geriatric Psychiatry, 14, 784–788.
- Gelman, C.R. & Greer, C. (2011). Young children in early-onset Alzheimer’s disease families: Research gaps and emerging service needs. American Journal of Alzheimer's Disease and Other Dementias, 26, 29–35.
- Grinberg, A. & Phillips, D. (2009). The impact of a community day program on the lives of patients with frontotemporal dementia and their caregivers. Canadian Review of Alzheimer’s Disease and Other Dementias,12, 17–22.
- Grinberg, A., Lagunoff, J., Phillips, D., Stern, B., Goodman, M. & Chow, T.W. (2008). Multidisciplinary design and implementation of a day program specialized for the frontotemporal dementias. American Journal of Alzheimer's Disease and Other Dementias, 22, 499–506.
- Harris, P.B. & Keady, J. (2009). Selfhood in younger onset dementias: Transitions and testimonies. Aging and Mental Health, 13, 437–444.
- Harvey, R.J. (1998). Young onset dementia: Epidemiology, clinical symptoms, family burden, support and outcome. http://dementia.ion.ucl.ac.uk.
- Hasse, T. (2005). Early-onset dementia: The needs of younger people with dementia in Ireland. Dublin: Alzheimer Society of Ireland. http://www.alzheimer.ie/eng/Resources/Research/Early-Onset-Dementia-The-Needs-of-Younger-People-with-Dementia-in-Ireland.
- Kaiser, S. & Panegyres, P.K. (2007). The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer's Disease and Other Dementias, 21, 398–402.
- Kertesz, A., Davidson, W. & Fox, H. (1997). Frontal behavioral inventory: Diagnostic criteria for frontal lobe dementia. Canadian Journal of Neurological Sciences, 24, 29–36.
- Lee, Y. & Kim, S. (2008). Effects of indoor gardening on sleep, agitation and cognition in dementia patients – A pilot study. International Journal of Geriatric Psychiatry, 23, 485–489.
- 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, 323–330.
- Merrilees, J. & Ketelle, R. (2010). Meeting the caregiving challenges for families of persons with frontotemporal dementia. Clinical Nurse Specialist, 24, 245–251.
- Mioshi, E., Bristow, M., Cook, R. & Hodges, J.R. (2009). Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 27, 76–81.
- Mourik, J.C., Rosso, S.M., Niermeijer, M.F., Duivenvoorden, H.J., Van Swieten, J.C. & Tibeen, A. (2004). Frontotemporal dementia: Behavioral symptoms and caregiver distress. Dementia and Geriatric Cognitive Disorders, 18, 299–306.
- Marziali, E. (2006). Developing evidence for an Internet-based psychotherapeutic group intervention. Journal of Evidence-Based Social Work, 3, 149–165.
- Marziali, E. & Climans, R. (2009). New technology to connect frontotemporal dementia spousal caregivers online. Canadian Review of Alzheimer's Disease and other Dementias, 12, 23–26.1.
- Nichols, K.R., Fam, D., Cook, C., Pearce, M., Elliot, G., Baago, S., …Chow, T.W. (2013). When dementia is in the house: Needs assessment survey for young caregivers. Canadian Journal of Neurological Sciences, 40, 21–28.
- Nunnemann, S., Kurz, A., Leucht, S. & Diehl-Schmid, J. (2012). Caregivers of patients with frontotemporal lobar degeneration: A review of burden, problems, needs, and interventions. International Psychogeriatrics, 24, 1368–1386.
- Roach, P. & Keady, J. (2008). Younger people with dementia: Time for fair play. British Journal of Nursing, 17, 690.
- Roach, P., Keady, J., Bee, P. & Hope, K. (2008). Subjective experiences of younger people with dementia and their families: Implications for UK research, policy and practice. Reviews in Clinical Gerontology, 18, 165–174.
- Shnall, A. (2009). Supporting family caregivers of people with frontotemporal dementia. Canadian Review of Alzheimer's Disease and other Dementias, 12, 14–16.
- Stein, J.A., Rotheram-Borus, M.J. & Lester, P. (2007). Impact of parentification on long-term outcomes among children of parents with HIV/AIDS. Family Process, 46, 317–333.
- Svanberg, E., Spector, A. & Stott, J. (2011). The impact of young onset dementia on the family: A literature review. International Psychogeriatrics, 23, 356–371.
- Van Vliet, D., Bakker, C., Koopmans, R., Vernooij-Dassen, M., Verhey, F. & De Vugt, M. (2010). Research protocol of the NeedYD-study (needs in young onset dementia): A prospective cohort study on the needs and course of early onset dementia. BMC Geriatrics, 10, 13.
- Venturelli, M., Scarsini, R. & Shena, F. (2011). Six month walking program changes cognitive and ADL performance in patients with Alzheimer. American Journal of Alzheimer's Disease and Other Dementias, 26, 381–388.
- Wedderburn, C., Wear, H., Brown, J., Mason, S.J., Barker, R.A., Hodges, J. & Williams-Gray, C. (2008). The utility of the Cambridge Behavioural Inventory in neurodegenerative disease. Journal of Neurology, Neurosurgery and Psychiatry, 79, 500–503.
- Werner, P., Stein-Shvachman, I. & Korczyn, A.D. (2009). Early onset dementia: Clinical and social aspects. International Psychogeriatrics, 21, 631–636.
- Williams, T., Dearden, A.M. & Cameron, I.H. (2001). From pillar to post – A study of younger people with dementia. Psychiatric Bulletin, 25, 384–387.
- Wong, C., Merrilees, J., Ketelle, R., Barton, C., Wallhagen, M. & Miller, B. (2012). The experience of caregiving: Differences between behavioral variant of frontotemporal dementia and Alzheimer disease. American Journal of Geriatric Psychiatry, 20, 724–728.
- Zarit, S.H., Kim, K., Femia, E.E., Almeida, D.M., Savla, J. & Molenaar, P.C. (2011). Effects of adult day care on daily stress of caregivers: A within-person approach. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 66, 538–546.