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Keywords:

  • carer burden;
  • cognitive impairment;
  • elderly;
  • stroke;
  • mild dementia;
  • Parkinson's disease

Abstract

Objective

To characterize the psychosocial burden on spouses living with the elderly suffering from mild dementia, stroke and Parkinson's disease, and to identify patient characteristics associated with it.

Materials and methods

Data on patient—spouse couples came from three studies of patients with stroke (36 couples), mild dementia (92 couples) and Parkinson's disease (58 couples). The psychosocial burden was recorded by the 15—item Relatives' Stress Scale (RSS). A factor analysis of this instrument produced a one-factor solution (CFI = 0.98) consisting of eight items with good face validity and acceptable reliability within each diagnostic group (Cronbach's alpha range 0.66–0.69). Covariates of this factor were identified using structural equation modeling (SEM) by regression on patient's age, gender, cognitive function (MMSE), activities of daily living (ADL) and depressive symptoms (MADRS).

Results

Disorganization of household routines, difficulties with going away for holidays, restrictions on social life, and the disturbances of sleep were the most frequently reported problems in all three groups. According to the mean sumscore on the RSS, the perceived psychosocial burden was similar across the diagnostic groups. In the final SEM model, a lower cognitive function of the patient was associated with a higher psychosocial burden on the spouses of patients with stroke (β = −1.3, p = 0.01) and Parkinson's disease (β = −0.89, p < 0.01), while in the dementia group, only an insignificant trend was demonstrated. In the dementia group, a significantly higher burden was identified on female spouses (β = −0.56, p = 0.04). A heavier burden of care was also associated with depressive symptoms in the patients with Parkinson's disease. In neither group did the final model disclose any effect of ADL function on the spouse's psychosocial burden.

Conclusion

Spouses caring for patients with dementia, stroke and Parkinson's disease perceive a similar type and level of psychosocial burden, independent of the disease. The cognitive functioning of the patient is a particularly important factor in this, especially when caring for patients with stroke or Parkinson's disease. Copyright © 2002 John Wiley & Sons, Ltd.