Regular Research ArticleWhat Explains Differences Between Dementia Patients' and Their Caregivers' Ratings of Patients' 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
References (30)
- et al.
Mini-Mental State: a practical method for grading the cognitive state of patients for the clinician
J Psychiatr Res
(1975) - et al.
Development and validation of a geriatric depression screening scale: a preliminary report
J Psychiatr Res
(1983) - et al.
Diagnosis and treatment of Alzheimer disease and related disorders
JAMA
(1997) - et al.
Quality-of-life assessment in dementia drug development: position paper from the International Working Group on Harmonization of Dementia Drug Guidelines
Alzheimer Dis Assoc Disord
(1997) - et al.
Pharmacotherapy of Alzheimer's disease: is there a need to redefine treatment success?
Int J Geriatr Psychiatry
(2001) - et al.
Quality of life in dementia: state of the art: report of the International Working Group for the Harmonization of Dementia Drug Guidelines and the Alzheimer's Society Satellite Meeting
Alzheimer Dis Assoc Disord
(2001) - et al.
Quality of life in Alzheimer's disease: patient and caregiver reports
- et al.
Quality of life in patients with Alzheimer's disease as reported by patient proxies
J Am Geriatr Soc
(1996) - et al.
Proxy-reported quality of life in Alzheimer's patients: comparisons of clinical and population-based samples
- et al.
EQ-5D in patients with dementia
Med Care
(2001)
Conceptualization and measurement of quality of life in dementia: the Dementia Quality of Life Instrument (DQoL)
Gerontologist
Conceptualization of quality of life in dementia
J Ment Health Aging
The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience
J Am Geriatr Soc
Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease
Quality of Life Research
Studies of illness in the aged: the index of ADL: a standardized measure of biological and psychosocial function
JAMA
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2019, Handbook of Clinical NeurologyCitation Excerpt :Informant-report is typically obtained from a family member or caregiver who is familiar with the day-to-day experiences of the person being assessed, and can be useful particularly in later stages of disease when a reliable self-report cannot be obtained (Rabins and Kasper, 1997). Even then, it is important to bear in mind that caregivers consistently rate QOL lower than the self-reported rating from the individual themselves, and informant ratings are influenced by the affected individual's mood, activity level, and functional ability as well as by their own levels of depression and burden (Sands et al., 2004; Vogel et al., 2006; Dewitte et al., 2018; Romhild et al., 2018). As a less common alternative, observational measures focus on behavioral indications of affective state and comfort levels, and have been used primarily in residential care settings where individuals with more advanced dementia may struggle to express themselves verbally (Brooker, 2005; Curyto et al., 2008).
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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).