Objective: FTD is a young onset dementia with a behavioral presentation; carers have different needs and experiences to those of older dementia patients. We investigated caregiver burden in FTD and how this relates to clinical presentation, behavior and function in patients.
Design: Baseline results from a prospective cohort study of FTD patients and their carers.
Materials and Methods: 42 patients (15 Female; 27 Male) and carers (13 male; 29 female) were recruited from a specialist cognitive disorders clinic. Patients were divided into behavioral (n=26) and language subgroups (n=16) according to the recent Work Group Criteria. Carers were assessed using the General Health Questionnaire (GHQ) the Hospital Depression and Anxiety Scale (HAD), the Screen for Caregiver Burden (SCB) and the Burden Scale. Carer work status and use of antidepressants were documented. Patients were assessed using the Mini Mental State Examination (MMSE), the Clinical Dementia Rating scale (CDR), the Interview to Determine Deterioration of Daily Function in Dementia (IDDD) and the Manchester and Oxford University Scale for the assessment of Psychopathology in Dementia (MOUSEPAD).
Results: Half of the carers were working, six had dependent children living at home. Female carers had significantly higher levels of GHQ distress than males (p=0.03) and more carers of patients with a behavioral presentation reached GHQ caseness (p=0.03). Only 7% of carers had depression on the HAD, but anxiety was more common affecting 15% of male carers and 20% of female carers. A quarter were taking antidepressants (more carers of patients with behavioral (31%) compared to language (18%)presentation). There was trend for carers of patients with behavioral presentation to have higher anxiety, depression and total HAD scores. Female carers had higher objective and subjective burden scores on the SCB, these were higher in GHQ cases (objective burden p=0.019, subjective burden p=0.006, combined burden p=0.008) a similar pattern was seen with HAD caseness (objective burden p=0.005, subjective burden p=0.052, combined burden p=0.011). On the Burden Scale, 81% of carers were experiencing burden. There was a trend for female carers to have higher Burden Scale scores. GHQ cases had significantly higher Burden Scale scores (p=0.001) as did those who were HAD cases (p=0.002). Burden Scale scores were highest in patients in the moderate dementia CDR category (p=0.04). On regression analysis, severity of patients’ behavioral disturbance was significantly related to all measures of carer distress, depression, anxiety and burden (p<0.001-all measures). Patient function(CDR and IDDD) was related to increased burden (p<0.002- all measures) the MMSE had no relationship to any caregiver measures.
Conclusion: As with older onset dementia, female carers of FTD patients had higher rates of psychological distress and burden. There were high rates of antidepressant use amongst carers. Carer distress was strongly related to patient behavioral disturbance, burden itself was most strongly associated with patient function.
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