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Original Articles

Determinants of quality of life in young onset dementia – results from a European multicenter assessment

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Pages 24-30 | Received 13 Jun 2016, Accepted 31 Aug 2016, Published online: 27 Sep 2016

References

  • Alexopoulos, G.S., Abrams, R.C., Young, R.C., & Shamoian, C.A. (1988). Cornell scale for depression in dementia. Biological Psychiatry, 23(3), 271–284. doi:10.1016/0006-3223(88)90038-8
  • Alzheimer's Disease International. (2015). World Alzheimer Report 2015. The global impact of dementia. An analysis of prevalence, incidence, cost and trends. London: Author. Retrieved from: https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
  • American Medical Association. (2011). Dementia performance measurement set. Retrieved from https://www.aan.com/uploadedFiles/Website_Library_Assets/Documents/3.Practice_Management/2.Quality_Improvement/1.Quality_Measures/1.All_Measures/dementia.pdf
  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders DSM-IV-TR (text revision). Washington, DC: Author.
  • Andersen, C.K., Wittrup-Jensen, K.U., Lolk, A., Andersen, K., & Kragh-Sorensen, P. (2004). Ability to perform activities of daily living is the main factor affecting quality of life in patients with dementia. Health and Quality of Life Outcomes, 2, 52. doi:10.1186/1477-7525-2-52
  • Bakker, C., de Vugt, M.E., van Vliet, D., Verhey, F.R., Pijnenburg, Y.A., Vernooij-Dassen, M.J., & Koopmans, R.T. (2013). Predictors of the time to institutionalization in young-versus late-onset dementia: Results from the Needs in Young Onset Dementia (NeedYD) study. Journal of the American Medical Directors Association, 14(4), 248–253. doi:10.1016/j.jamda.2012.09.011
  • 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.
  • Banerjee, S., Samsi, K., Petrie, C.D., Alvir, J., Treglia, M., Schwam, E.M., & del Valle, M. (2009). What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. International Journal of Geriatric Psychiatry, 24(1), 15–24. doi:10.1002/gps.2090
  • Baptista, M.A., Santos, R.L., Kimura, N., Lacerda, I.B., Johannenssen, A., Barca, M.L., … Dourado, M.C. (2016). Quality of life in young onset dementia: An updated systematic review. Trends in Psychiatry and Psychotherapy, 38(1), 6–13. doi:10.1590/2237-6089-2015-0049
  • Beer, C., Flicker, L., Horner, B., Bretland, N., Scherer, S., Lautenschlager, N.T., … Almeida, O.P. (2010). Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: A cross sectional study. PLoS One, 5(12), e15621.
  • Black, B.S., Johnston, D., Morrison, A., Rabins, P.V., Lyketsos, C.G., & Samus, Q.M. (2012). Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures. Quality of Life Research, 21(8), 1379–1389.
  • Bosboom, P.R., Alfonso, H., Eaton, J., & Almeida, O.P. (2012). Quality of life in Alzheimer's disease: Different factors associated with complementary ratings by patients and family carers. International Psychogeriatrics, 24(5), 708–721.
  • CBO, Consultatiebureau voor Ouderen. (2005). Guideline diagnosis and pharmacological treatment of dementia. Alphen aan den Rijn: Van Zuiden Communications B.V.
  • Clare, L. (2004). The construction of awareness in early stage Alzheimer's disease: A review of concepts and models. British Journal of Clinical Psychology, 43(2), 155–175.
  • Conde‐Sala, J.L., Garre‐Olmo, J., Turró‐Garriga, O., López‐Pousa, S., & Vilalta‐Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer's disease: The patient's perception compared with that of caregivers. International Journal of Geriatric Psychiatry, 24(6), 585–594.
  • Crespo, M., Hornillos, C., & de Quirós, M.B. (2013). Factors associated with quality of life in dementia patients in long-term care. International Psychogeriatrics, 25(4), 577–585.
  • 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(12), 2308–2314.
  • 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, doi: 1533317513494443.
  • Ettema, T.P., Dröes, R.-M., de Lange, J., Mellenbergh, G., & Ribbe, M.W. (2005). A review of quality of life instruments used in dementia. Quality of Life Research, 14, 675–686.
  • Folstein, M.F., Folstein, S.E., & McHugh, P.R. (1975). “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3), 189–198. doi:10.1016/0022-3956(75)90026-6
  • Gómez-Gallego, M., Gómez-Amor, J., & Gómez-García, J. (2012). Determinants of quality of life in Alzheimer's disease: Perspective of patients, informal caregivers, and professional caregivers. International Psychogeriatrics, 24(11), 1805–1815.
  • Gomez-Gallego, M., Gomez-Garcia, J., & Ato-Lozano, E. (2015). Addressing the bias problem in the assessment of the quality of life of patients with dementia: Determinants of the accuracy and precision of the proxy ratings. The Journal of Nutrition, Health & Aging, 19(3), 365–372.
  • Gove, D., Downs, M., Vernooij-Dassen, M., & Small, N. (2016). Stigma and GPs' perceptions of dementia. Aging & Mental Health, 20(4), 391–400. doi:10.1080/13607863.2015.1015962
  • Harris, P.B., & Keady, J. (2004). Living with early onset dementia: Exploring the experience and developing evidence-based guidelines for practice. Alzheimer's Care Today, 5, 111–122.
  • Harris, P.B., & Keady, J. (2009). Selfhood in younger onset dementia: Transitions and testimonies. Aging & Mental Health, 13(3), 437–444. doi:10.1080/13607860802534609
  • 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 & Psychiatry, 74(9), 1206–1209.
  • Hoe, J., Katona, C., Roch, B., & Livingston, G. (2005). Use of the QOL-AD for measuring quality of life in people with severe dementia—the LASER-AD study. Age and Ageing, 34(2), 130–135.
  • Huber, M., Knottnerus, J.A., Green, L., van der Horst, H., Jadad, A.R., Kromhout, D., … Smid, H. (2011). How should we define health? BMJ, 343, d4163. doi:10.1136/bmj.d4163
  • Hughes, C.P., Berg, L., Danziger, W.L., Coben, L.A., & Martin, R.L. (1982). A new clinical scale for the staging of dementia. The British Journal of Psychiatry, 140, 566–572.
  • Hvidsten, L., Engedal, K., Selbaek, G., Wyller, T.B., Høgh, P., Snaedal, J., … Kersten, H. (2015). Young onset dementia study – A prospective cohort study of quality of life and specific needs in persons with young onset dementia and their families. Journal of Clinical Trials, 5, 204. doi:10.4172/2167-0870.1000204
  • Koedam, E.L., Lauffer, V., van der Vlies, A.E., van der Flier, W.M., Scheltens, P., & Pijnenburg, Y.A. (2010). Early-versus late-onset Alzheimer's disease: More than age alone. Journal of Alzheimer's Disease, 19(4), 1401–1408.
  • Logsdon, R.G., Gibbons, L.E., McCurry, S.M., & Teri, L. (1999). Quality of life in Alzheimer's disease: Patient and caregiver reports. Journal of Mental Health and Aging, 5(1), 21–32.
  • Logsdon, R.G., Gibbons, L.E., McCurry, S.M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64(3), 510–519. doi:0033-3174/02/6403-0510
  • Menne, H.L., Judge, K.S., & Whitlatch, C.J. (2009). Predictors of quality of life for individuals with dementia: Implications for intervention. Dementia, 8(4), 543–560. doi:10.1177/1471301209350288
  • Millenaar, J.K., Bakker, C., Koopmans, R.T., Verhey, F.R., Kurz, A., & 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. doi:10.1002/gps.4502
  • Mesulam, M.M. (2003). Primary progressive aphasia–A language-based dementia. The New England Journal of Medicine, 349(16), 1535–1542. doi:10.1056/NEJMra022435
  • Neary, D., Snowden, J.S., Gustafson, L., Passant, U., Stuss, D., Black, S., … Benson, D.F. (1998). Frontotemporal lobar degeneration: A consensus on clinical diagnostic criteria. Neurology, 51(6), 1546–1554.
  • Ratnavalli, E., Brayne, C., Dawson, K., & Hodges, J.R. (2002). The prevalence of frontotemporal dementia. Neurology, 58(11), 1615–1621.
  • Reed, B.R., Jagust, W.J., & Coulter, L. (1993). Anosognosia in Alzheimer's disease: Relationships to depression, cognitive function, and cerebral perfusion. Journal of Clinical and Experimental Neuropsychology, 15(2), 231–244. doi:10.1080/01688639308402560
  • Reisberg, B., Ferris, S.H., de Leon, M.J., & Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. The American Journal of Psychiatry 139(9), 1136–1139.
  • 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.
  • Riedijk, S., Duivenvoorden, H., Van Swieten, J., Niermeijer, M., & Tibben, A. (2009). Sense of competence in a Dutch sample of informal caregivers of frontotemporal dementia patients. Dementia and Geriatric Cognitive Disorders, 27(4), 337–343.
  • Roach, P., & Drummond, N. 2014. ‘It's nice to have something to do’: Early-onset dementia and maintaining purposeful activity. Journal of Psychiatric Mental Health Nursing, 21, 889–895.
  • 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(2), 165–174.
  • Rosness, T.A., Mjørud, M., & Engedal, K. (2011). Quality of life and depression in carers of patients with early onset dementia. Aging & Mental Health, 15(3), 299–306.
  • Rossor, M.N., Fox, N.C., Mummery, C.J., Schott, J.M., & Warren, J.D. (2010). The diagnosis of young-onset dementia. Lancet Neurology, 9(8), 793–806. doi:10.1016/s1474-4422(10)70159-9
  • Sampson, E.L., Warren, J.D., & Rossor, M.N. (2004). Young onset dementia. Postgraduate Medical Journal, 80(941), 125–139.
  • Teng, E., Tassniyom, K., & Lu, P.H. (2012). Reduced quality-of-life ratings in mild cognitive impairment: Analyses of subject and informant responses. The American Journal of Geriatric Psychiatry, 20(12), 1016–1025. doi:10.1097/JGP.0b013e31826ce640
  • Thorgrimsen, L., Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M., Woods, R.T., & Orrell, M. (2003). Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) scale. Alzheimer Disease & Associated Disorders, 17(4), 201–208.
  • van Vliet, D., Bakker, C., Koopmans, R.T., Vernooij-Dassen, M.J., Verhey, F.R., & de Vugt, M.E. (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. doi:10.1186/1471-2318-10-13
  • 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. doi:10.1002/gps.2439
  • Verhey, F.R.J., Rozendaal, N., Ponds, R.W.H.M., & Jolles, J. (1993). Dementia, awareness and depression. International Journal of Geriatric Psychiatry, 8(10), 851–856. doi:10.1002/gps.930081008
  • Vernooij-Dassen, M., & Jeon, Y.H. (2016). Social health and dementia: The power of human capabilities. International Psychogeriatrics, 28(5), 701–703. doi:10.1017/s1041610216000260
  • Vieira, R.T., Caixeta, L., Machado, S., Silva, A.C., Nardi, A.E., Arias-Carrión, O., & Carta, M.G. (2013). Epidemiology of early-onset dementia: A review of the literature. Clinical Practice & Epidemiology in Mental Health, 9, 88–95.
  • Vogel, A., Mortensen, E.L., Hasselbalch, S.G., Andersen, B.B., & Waldemar, G. (2006). Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease. International Journal of Geriatric Psychiatry, 21(12), 1132–1138. doi:10.1002/gps.1619
  • Wimo, A., Jonsson, L., & Zbrozek, A. (2010). The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. The Journal of Nutrition, Health & Aging, 14(8), 685–690.
  • World Health Organisation. (2012). Dementia: A public health priority. Retrieved from http://www.who.int/mental_health/publications/dementia_report_2012/en/
  • World Health Organisation Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409.