Younger people with dementia: diagnostic issues, effects on carers and use of services

OBJECTIVE: To determine difficulties experienced by carers of younger people with dementia. DESIGN: Cross-sectional questionnaire survey. PARTICIPANTS: 102 eligible carers of persons less than 65 years of age with dementia, recruited through support groups and clinicians' referrals. MAIN OUTCOME MEASURES: Problems with diagnostic process; professionals/services consulted; psychological, physical, occupational and financial impact of illness on carers and children; use of and satisfaction with services. MAIN RESULTS: Diagnostic problems were reported by 71% of carers. Mean time until diagnosis was 3.4 years (SD 2.8) after consulting 2.8 (1.4) professionals. Carers reported frustration (81%) and grief (73%). Adverse psychological effects were common, more so in female than male carers (p < 0.01). The younger the carer, the more psychological and physical effects were experienced (p < 0.01). Only 8% of carers considered that their children had encountered no problems because of the dementia. Of 61 working carers, 59% reduced their hours or stopped working after diagnosis, and 89% of all carers had experienced financial problems subsequent to diagnosis. Most carers (89%) had used a support service, but 25% had never used community support, 32% had never used respite. Proportions of carers rating services as good ranged between 43 and 100%. CONCLUSIONS: Younger people with dementia, and their carers, face difficulties in obtaining a diagnosis. Carers also experience psychological problems, financial worries, loss of employment and family conflict, and their children are affected. Most carers had used services, but some dissatisfaction existed.