Regular Research Article
What Explains Differences Between Dementia Patients' and Their Caregivers' Ratings of Patients' Quality of Life?

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Objective

The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver.

Methods

A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life.

Results

Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life.

Conclusions

Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.

Section snippets

Subjects

We studied patients with dementia and their caregivers from the San Francisco Bay area who were recruited for a study that evaluated the psychometric properties of a patient-administered quality-of-life instrument. Participants were community-living dementia patients who were recruited from previous dementia studies, from the local chapter of the Alzheimer's Association, and through requests for volunteers from local newsletters. Inclusion criteria were 1) a physician diagnosis of dementia

RESULTS

Nearly all of the patients in the sample were over the age of 70 (Table 1). Just over half were married, and 84% were white. There was a broad range of educational levels among the patients. Although the patients' MMSE scores, on average, were high (mean: 19.7), caregivers reported that nearly half needed some help with bathing and dressing. Caregivers also reported that 44% of patients had hostile or aggressive behaviors Sometimes, Often, or Very Often. More than half of the patients'

DISCUSSION

We demonstrated that there is a low level of agreement between dementia patients and their caregivers in their ratings of patients' subjective quality of life. The lack of agreement between patients' and their caregivers' ratings was evident across the five domains of subjective quality of life that we measured. Similar findings are reported in previous studies that used different quality-of-life instruments.8, 12, 19 Our study goes beyond earlier findings by providing evidence that, among

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    This work was presented at the 2003 Annual Meeting of the American Geriatrics Society, Baltimore MD.

    Funding for the collection of data was provided by a grant from the Alzheimer's Association (TRG-93-013).

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