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.


METHODS
Cross-sectional questionnaire survey.


METHODS
102 eligible carers of persons less than 65 years of age with dementia, recruited through support groups and clinicians' referrals.


METHODS
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.


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
G
G
Academic Department of Psychogeriatrics, Prince Henry Hospital, Sydney, Australia.
Brodaty
H
H
Freeth
S
S
D000328:Adult; D000544:Alzheimer Disease / Q000523:psychology; D000704:Analysis of Variance; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D016009:Chi-Square Distribution; D016241:Child of Impaired Parents / Q000523:psychology; D003153:Community Health Services / Q000706:statistics & numerical data; D003258:Consumer Behavior; D017281:Cost of Illness; D003704:Dementia / Q000175:diagnosis / Q000523:psychology*; D003951:Diagnostic Errors / Q000706:statistics & numerical data; D005192:Family Health; D005260:Female; D006296:Health Services / Q000592:standards / Q000706:statistics & numerical data; D006306:Health Surveys; D006801:Humans; D006816:Huntington Disease / Q000523:psychology; D008297:Male; D008605:Mental Health Services / Q000706:statistics & numerical data; D008875:Middle Aged