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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.
Luscombe et al. (1998) studied this question.