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The prevalence and causes of younger onset dementia in Eastern Sydney, Australia

Published online by Cambridge University Press:  13 October 2014

Adrienne Withall*
Affiliation:
School of Public Health and Community Medicine, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Sydney, NSW 2031, Australia
Brian Draper
Affiliation:
Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Sydney, NSW 2031, Australia Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales, Sydney, NSW 2052, Australia
Katrin Seeher
Affiliation:
Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Sydney, NSW 2031, Australia Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales, Sydney, NSW 2052, Australia
Henry Brodaty
Affiliation:
Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Sydney, NSW 2031, Australia Dementia Collaborative Research Centre, School of Psychiatry, University of New South Wales, Sydney, NSW 2052, Australia
*
Correspondence should be addressed to: Dr. Adrienne Withall, School of Public Health and Community Medicine, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia. Phone: +61-2-9385-9428; Fax: +61-2-9385-1036. Email: [email protected].

Abstract

Background:

Service planning for people with younger onset dementia (YOD; an onset of symptoms before the age of 65 years) relies on prevalence estimates, with existing models based upon older people. This pilot study investigated the prevalence and causes of YOD in a defined catchment area of Eastern Sydney, Australia.

Methods:

The study was conducted in three stages: publicity building, case finding, and case validation. A brief structured questionnaire was sent to health professionals in the catchment area asking how many patients with YOD they had seen over the previous 12 months. Memory clinics and hospital records were also searched for YOD patients. Clinicians assigned a Statistical Linkage Key to each patient to prevent double counting, and indicated the cause of dementia. The majority of patients were validated by a review of medical case notes. Prevalence data were calculated for the following age groups: 30–64, 30–44, and 45–64 years.

Results:

Two hundred and four potential patients were identified, of which 141 met inclusion criteria. The primary clinical subtypes were alcohol-related dementia (18.4%), Alzheimer's disease (17.7%), vascular dementia (12.8%), and frontotemporal dementia (11.3%). Eighty-eight patients were aged 30 to 64 years on census date and were therefore included in the prevalence calculations. The overall prevalence was 68.2 per 100,000 population at risk for the 30–64-year age group (95% Confidence Interval (CI): 54.9–83.4); 11.6 per 100,000 for the 30–44-year age group (95% CI: 5.3–21.7); and 132.9 per 100,000 for the 45–64 age group (95% CI: 105.8–164.2).

Conclusions:

Younger onset dementia affects a significant number of people in Eastern Sydney with a diverse range of clinical types. This prevalence rate is higher than previous reports from the United Kingdom and Japan, with a different distribution of etiologies, which have important implications for service planning for this group.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2014 

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References

Alzheimer's Disease International. (2009). World Alzheimer Report. M. Prince and J. Jackson (eds.). Available at: http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf; last accessed 12 October 2013.Google Scholar
American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: APA.Google Scholar
Antinori, A. et al. (2007). Updated research nosology for HIV-associated neurocognitive disorders. Neurology, 69, 17891799.CrossRefGoogle ScholarPubMed
Australian Bureau of Statistics. (2006). Census Data. Available at: http://abs.gov.au/websitedbs/censushome.nsf/home/communityprofiles?opendocument&navpos=230; last accessed 22 August 2013.Google Scholar
Colliver, J. D., Comptom, W. M., Gfroerer, J. C. and Condon, T. (2006). Projecting drug use among aging baby boomers in 2020. Annals of Epidemiology, 16, 257265.Google Scholar
Coppus, A. et al. (2006). Dementia and mortality in persons with Down's syndrome. Journal of Intellectual Disability Research, 50, 768777.Google Scholar
Draper, B., Karmel, R., Gibson, D., Peut, A. and Anderson, P. (2011). The Hospital Dementia Services project: age differences in hospital stays of older people with and without dementia. International Psychogeriatrics, 23, 16491658.Google Scholar
EMRE, M. et al. (2007). Clinical diagnostic criteria for dementia associated with Parkinson's disease. Movement Disorders, 22, 16891707.Google Scholar
Ferran, J., Wilson, K. and Doran, M. (1996). The early onset dementias: a study of clinical characteristics and service use. International Journal of Geriatric Psychiatry, 11, 863869.Google Scholar
Freyne, A., Kidd, N., Coen, R. and Lawlor, B. A. (1999). Burden in carers of dementia patients: higher levels in carers of younger sufferers. International Journal of Geriatric Psychiatry, 14, 784788.Google Scholar
Gardner, A., Iverson, G. L. and McCrory, P. (2014). Chronic traumatic encephalopathy in sport: a systematic review. British Journal of Sports Medicine, 48, 8490.Google Scholar
Gupta, S. and Warner, J. (2008). Alcohol-related dementia: a 21st-century silent epidemic? The British Journal of Psychiatry, 193, 351353.Google Scholar
Härkönen, J. T. and Mäkelä, P. (2010). Changes in the norms guiding alcohol use in the finnish general population over the past 40 years. Addiction Research and Theory, 18, 392408.Google Scholar
Harvey, R. J., Skelton-Robinson, M. and 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, 12061209.Google Scholar
Ikejima, C. et al. (2009). Prevalence and causes of early-onset dementia in Japan: a population-based study. Stroke, 40, 27092714.Google Scholar
Karmel, R. (2005). Data Linkage Protocols Using a Statistical Linkage Key. (Data Linkage Series No. 1). ACNC (ed.). Canberra: AIHW.Google Scholar
Kelley, B. J., Boeve, B. F. and Josephs, K. A. (2008). Young-onset dementia: demographic and etiologicl characteristics of 235 patients. Archives of Neurology, 65, 15021508.Google Scholar
Longley, W. A. (2007). Multiple sclerosis-related dementia: relatively rare and often misunderstood. Brain Impairment, 8, 154167.Google Scholar
Lott, I. T. and Dierssen, M. (2010). Cognitive deficits and associated neurological complications in individuals with down's syndrome. Lancet Neurolology, 9, 623633.CrossRefGoogle ScholarPubMed
Luscombe, G., Brodaty, H. and Freeth, S. (1998). Younger people with dementia: diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13, 323330.Google Scholar
McKeith, I. G. et al. (1996). Consensus guidelines for the clinical and pathologic diagnosis of dementia with Lewy's bodies (DLB): report of the consortium on DLB International Workshop. Neurology, 47, 11131124.Google Scholar
McKhann, G. et al. (1984). Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA work group under the auspices of department of health and human services task force on Alzheimer's disease. Neurology, 34, 939944.Google Scholar
McMurtray, A., Clark, D. G., Christine, D. and Mendez, M. F. (2006). Early-onset dementia: frequency and causes compared to late-onset dementia. Dementia & Geriatric Cognitive Disorders, 21, 5964.Google Scholar
Newens, A. J. et al. (1993). Clinically diagnosed presenile dementia of the Alzheimer's type in the northern health region: ascertainment, prevalence, incidence and survival. Psychological Medicine 23, 631644.Google Scholar
Oslin, D. W., Atkinson, R. M., Smith, D. M. and Hendrie, H. (1998). Alcohol-related dementia: proposed clinical criteria. International Journal of Geriatric Psychiatry, 13, 203212.3.0.CO;2-B>CrossRefGoogle ScholarPubMed
Peavy, G. M. et al. (2010). Cognitive and functional decline in Huntington's disease: dementia criteria revisited. Movement Disorders, 25, 11631169.CrossRefGoogle ScholarPubMed
Ratnavalli, E., Brayne, C., Dawson, K. and Hodges, J. R. (2002). The prevalence of frontotemporal dementia. Neurology, 58, 16151621.Google Scholar
Ridley, N. J., Draper, B. and Withall, A. (2013). Alcohol-related dementia: an update of the evidence. Alzheimer's Research & Therapy, 5, 18. doi: 10.1186/alzrt157 Google Scholar
Roach, P., Keady, J., Bee, P. and 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, 165174.Google Scholar
Roman, G. C. et al. (1993). Vascular dementia: diagnostic criteria for research studies. Report of the NINDS-AIREN international workshop. Neurology, 43, 250260.CrossRefGoogle ScholarPubMed
Rosso, S. M. et al. (2003). Frontotemporal dementia in the Netherlands: patient characteristics and prevalence estimates from a population-based study. Brain, 126, 20162022.Google Scholar
Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M. and Warren, J. D. (2010). The diagnosis of young-onset dementia. The Lancet Neurology, 9, 793806.Google Scholar
Salem, L. C. et al. (2012). Overdiagnosis of dementia in young patients – a nationwide register-based study. Dementia and Geriatric Cognitive Disorders, 34, 292299.Google Scholar
Sampson, E. L., Warren, J. D. and Rossor, M. N. (2004). Young onset dementia. Postgraduate Medical Journal, 80, 125139.Google Scholar
Sperlinger, D. and Furst, M. (1994). The service experiences of people with presenile dementia: a study of carers in one London borough. International Journal of Geriatric Psychiatry, 9, 4750.Google Scholar
Stein, T. D., Alvarez, V. E. and McKee, A. C. (2014). Chronic traumatic encephalopathy: a spectrum of neuropathological changes following repetitive brain trauma in athletes and military personnel. Alzheimers Research & Therapy, 6, 4. doi:10.1186/alzrt234 Google Scholar
Svanberg, E., Spector, A. and Stott, J. (2011). The impact of young onset dementia on the family: a literature review. International Psychogeriatrics, 23, 356371.Google Scholar
The Lund and Manchester Groups. (1994). Clinical and neuropathological criteria for frontotemporal dementia. Journal of Neurology, Neurosurgery and Psychiatry, 57, 416418.Google Scholar
Van Vliet, D., De Vugt, M. E., Bakker, C., Koopmans, R. T. C. M. and Verhey, F. R. J. (2010). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25, 10911100.Google Scholar
Van Vliet, D. et al. (2013). Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine, 43, 423432.Google Scholar
Williams, T., Cameron, I. and Deardon, T. (2001). From pillar to post – a study of younger people with dementia. Psychiatric Bulletin, 25, 384387.Google Scholar
Withall, A. (2013). The challenges of service provision in younger-onset dementia. Journal of American Medical Directors Association, 14, 230232.Google Scholar