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

✍ Scribed by Georgina Luscombe; Henry Brodaty; Stephen Freeth

• Publisher: John Wiley and Sons
• Year: 1998
• Tongue: English
• Weight: 131 KB
• Volume: 13
• Category: Article
• ISSN: 0885-6230
• DOI: 10.1002/(sici)1099-1166(199805)13:5<323::aid-gps768>3.0.co;2-o

✦ Synopsis

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.