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Younger people with dementia: diagnostic issues, effects on carers and use of services
Author(s) -
Luscombe Georgina,
Brodaty Henry,
Freeth Stephen
Publication year - 1998
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/(sici)1099-1166(199805)13:5<323::aid-gps768>3.0.co;2-o
Subject(s) - dementia , gerontology , psychology , psychiatry , medicine , disease , pathology
Objective . To determine difficulties experienced by carers of younger people with dementia. Design . Cross‐sectional self‐report 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. © 1998 John Wiley & Sons, Ltd.