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

Sands, Laura P.; Ferreira, Patrícia; Stewart, Anita L.; Brod, Meryl; Yaffe, Kristine

doi:10.1097/00019442-200405000-00006

Cited by 171 publications

(98 citation statements)

References 23 publications

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“…The two groups who disagreed on mental health status (caregivers who over- vs. under-estimated care recipients’ mental health problems) were fairly equal, contrary to previous research, which found that caregivers rate psychological problems worse than does the care recipient 51 . As 43% of caregivers were HIV seropositive themselves, it is possible that similarities in the caregiver and care recipient populations explain this discrepant finding.…”

Section: Discussioncontrasting

confidence: 93%

Perceived Mental Health Status of Drug Users with HIV: Concordance Between Caregivers and Care Recipient Reports and Associations with Caregiving Burden and Reciprocity

et al. 2014

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Section: Discussioncontrasting

confidence: 93%

Perceived Mental Health Status of Drug Users with HIV: Concordance Between Caregivers and Care Recipient Reports and Associations with Caregiving Burden and Reciprocity

et al. 2014

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“…13,18 A little over one-third of patients and caregivers had similar QoL ratings; ratings by two-thirds of the dyads were discordant. Although patient anosognosia may explain discordance in part, previous research suggests otherwise.…”

Section: Discussionmentioning

confidence: 97%

“…13 Studies consistently suggest that patient characteristics (higher cognitive status, functional capacity, pain management, and fewer behavioral problems) are associated with informal and formal caregivers’ perceptions of higher patient QoL. 14,15 A common finding is that caregivers rate patients’ QoL lower than they believe patients would rate themselves 16 ; similarly, patients report higher QoL than staff or family.…”

mentioning

confidence: 99%

“…17,18 Disparate proxy patient ratings have been attributed to elevated caregiver burden and perceptions of patient suffering. 13,19 Of the few studies examining correlates of patient-rated QoL, most have been conducted outside of the United States. 2023 Findings are inconsistent with some indicating lower QoL ratings with increased age and cognitive and functional declines and others not finding relationships.…”

mentioning

confidence: 99%

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Correlates of Quality of Life for Individuals with Dementia Living at Home: The Role of Home Environment, Caregiver, and Patient-related Characteristics

Gitlin¹,

Hodgson²,

Piersol³

et al. 2014

The American Journal of Geriatric Psychiatry

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Objectives To examine prevalence of modifiable risk factors and their contribution to patient quality of life (QoL) as rated by dementia patients and family caregivers. Design Cross-sectional. Setting Home environment. Participants 88 patients and their caregivers. Measurements Modifiable characteristics of home environments, patients, and caregivers were observed or obtained through interview. Demographics and ratings of patients’ QoL were obtained from patients and caregivers. Results Patients had mean Mini-mental Status Examination (MMSE) score = 17.7 ± 4.6, (range: 10 28) on an average 7.7 ± 2.4 neuropsychiatric behaviors, 6.0 ± 3.1 health conditions and moderate functional challenges; 70.7% (N = 58) had fall risk; 60.5% (N = 52) had sleep problems at least once weekly; and 42.5% (N = 37) had pain. An average of 8.1 ± 5.2 home hazards and 5.4 ± 4.1 adaptations were observed; 51.7% had unmet device/navigation needs. Patients’ and caregivers’ QoL ratings were unrelated to MMSE; and patients’ self-rated QoL was higher than rated by caregivers. Number of health conditions and unmet device/navigation needs were inversely associated with patient self-rated QoL, and number of health conditions, frequency of behaviors, and level of negative communications were inversely associated with caregiver’s assessment of patient QoL. Positive endorsement of caregiving was positively associated with caregiver’s appraisal of patient QoL. Other factors were unrelated. Conclusions Most patients lived at home with high fall risk, unmanaged behavioral symptoms, pain, sleep disturbances, environmental challenges, and multiple hazards. Except for health, factors associated with lower QoL differed for patients and caregivers. Results suggest need to improve QoL by addressing modifiable risk factors and tailoring interventions to patient and caregiver perspectives.

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“…Likewise, differences in spouse versus non-spouse informant reports of cognition, behavior, function, and disease progression have also been reported (8, 12-14). However, other studies have failed to find evidence for effects of the relationship between the informant and participant on the discrepancy between patient and caregiver reported QOL (15) or rates of disease progression (16). …”

Section: Introductionmentioning

confidence: 99%

Participant–Informant Relationships Affect Quality of Life Ratings in Incipient and Clinical Alzheimer Disease

Lin

Brook

Grill

et al. 2017

The American Journal of Geriatric Psychiatry

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Objective Clinical trials in incipient and clinical Alzheimer's disease (AD) often include informant-reported outcomes. While informant reports in AD dementia may be modulated by the nature of participant-informant relationships, whether informant type affects reporting at earlier disease stages is less certain. We sought to determine the effects of participant-informant relationships on informant assessments of quality of life (QOL), functional abilities, and behavioral symptoms in individuals with normal cognition (NC), mild cognitive impairment (MCI), and mild-to-moderate AD dementia. Design Cross-sectional. Setting Easton Center for Alzheimer's Disease Research at the University of California, Los Angeles. Participants A total of 399 individuals who met criteria for NC (n=100), MCI [amnestic (n=125) and nonamnestic (n=61)], and AD (n=113). Participants were subdivided into groups based on informant/participant relationships (spouse versus other). Measurements We examined informant effects on the Quality of Life-Alzheimer's Disease (QOL-AD) scale, Functional Activities Questionnaire (FAQ), and Neuropsychiatric Inventory (NPI). Results After adjustments for demographic and cognitive factors, spouse informants reported higher participant QOL in the amnestic MCI and AD groups than did other informants. No informant effects were seen on QOL-AD ratings in the nonamnestic MCI or NC groups or on the FAQ or NPI in the MCI and AD groups. Conclusions Participant-informant relationships may modulate informant responses on subjective measures such as the QOL-AD in both incipient and clinical AD. Clinical trials that use informant measures may need to address these effects.

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

Cited by 171 publications

References 23 publications

Perceived Mental Health Status of Drug Users with HIV: Concordance Between Caregivers and Care Recipient Reports and Associations with Caregiving Burden and Reciprocity

Perceived Mental Health Status of Drug Users with HIV: Concordance Between Caregivers and Care Recipient Reports and Associations with Caregiving Burden and Reciprocity

Correlates of Quality of Life for Individuals with Dementia Living at Home: The Role of Home Environment, Caregiver, and Patient-related Characteristics

Participant–Informant Relationships Affect Quality of Life Ratings in Incipient and Clinical Alzheimer Disease

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