The impact of young onset dementia : a study of the epidemiology, clinical features, caregiving and health economics of dementia in younger people
Dementia affecting the under 65 years age group is increasingly recognised as an important medical and social problem. This thesis is based upon research carried out over a 2½ year period in two London boroughs. A comprehensive methodology was used to attempt to identify every case of dementia which began before the affected person was age 65 years and to establish a specific cause. The study identified 185 cases of young onset dementia, giving a prevalence of 67.2 cases per 100,000 at risk in the 30-64 years age group. Extrapolating these figures suggests that there may be 16,737 (95% CI: 13,975-19,879) people affected in the wider UK population. The prevalence rates for specific dementias included Alzheimer's disease (21.7/100,000 (15.6-29.3)), Vascular Dementia (10.9/100,000 (6.7-16.5)) and Frontotemporal dementia (9.3/100,000 (5.5-14.7)). Non-cognitive and behavioural symptoms were common in the patients, 53% experiencing delusions, and 44% hallucinations. There were no statistically significant differences between the different dementias. The caregivers experienced high levels of burden with 53% rating as 'cases' on the General Health Questionnaire (GHQ). Female gender, looking after someone with non-cognitive symptoms and poor marital quality prior to onset of the dementia all predicted higher levels of distress and burden. A 'bottom-up' direct cost-of-illness analysis was carried out on the patient sample. The total cost for the two areas was estimated to be £1.4 million annually, which extrapolates to £132 (£110-£156) million for all young onset dementia in the UK. There were no significant associations with patient or caregiver factors and cost-of-illness. Compared to older people with dementia this group of younger patients appear to use less community resources and more costly institutional care. Over the period of this study, concern about and services for younger people with dementia in both areas increased dramatically.