Caregiver-rated Quality Of Life Research Articles

192 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): 12-MONTH TRAJECTORY OF QUALITY OF LIFE IN PEOPLE WITH DEMENTIA

Abstract Background Research is needed to examine how Quality of Life (QoL) changes as dementia progresses. We explored QoL trajectories over a 12-month period and examined factors that influence QoL in People with Dementia (PwD). Methods Fifty-two PwD and their informal caregivers participated in the “CHESS” Study. Data were collected at five time points over 12 months between April 2017 and November 2019. Mixed-model analyses were used to investigate associations of self-rated QoL and caregiver-rated QoL (measured by the DEMQoL and DEMQoL Proxy, respectively) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety and depression); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, education level, occupation and living situation of the PwD, employment status of the caregiver); 3) Physical Fitness and Health (PFH; including the Quantitative Timed Up and Go (QTUG), baseline grip strength, indices of frailty, sensory acuity); and Managing Everyday life with Dementia (MED; incorporating measures of cognition, behavioural disturbances, functional ability, indices of dependence of PwD). Results Across all domains, caregivers’ ratings of QoL for PwD decreased over time (p=0.012). In PWB, greater levels of depression (p=0.007) and anxiety in the PwD (p<0.001) predicted lower self-rated QoL, and higher caregiver anxiety levels predicted lower caregiver-rated QoL (p=0.012). In PFH, having a caregiver administer medication (p=0.03) was associated with higher self-rated QoL. Interestingly, caregiver-rated QoL was higher for PwD who took longer to return to sitting during the QTUG (p=0.043). In MED, being independently mobile (p=0.012) predicted higher self-rated QoL. No other factors within the SCR domain reached significance in predicting QoL. Conclusion This longitudinal analysis elucidates potential predictors of QoL in PwD. Psychological well-being in PwD and their caregivers was shown to significantly impact on QoL, and so, these factors should be routinely included in future research studies and clinical assessments.

Quality of Life in relation to neuropsychiatric symptoms in Alzheimer's disease: 5-year prospective ALSOVA cohort study.

To examine the association between neuropsychiatric symptoms (NPS) with self- and caregiver-rated Quality of Life (QoL) for patients with Alzheimer's disease (AD) during a 5-year follow-up. The ALSOVA 5-year follow-up study included, at baseline, 236 patients with either very mild (Clinical Dementia Rating Scale (CDR) 0.5), or mild (CDR 1) AD, together with their caregivers from three Finnish hospital districts. QoL was evaluated using patient self-reported, and caregiver-rated, QoL in AD (QoL-AD) scores. NPS were assessed using the Neuropsychiatric Inventory (NPI), and AD severity was evaluated using the CDR, with cognition tested by the mini-mental state examination. The performance of daily activities was assessed using the Alzheimer's Disease Cooperative Study-Activities of Daily Living Inventory. Over the 5-year follow-up period, patient self-reported QoL-AD scores did not change significantly (p = 0.245), despite increases in their NPS. However, caregiver-rated patient QoL-AD scores declined significantly (p ≤ 0.001), as total NPI scores increased during follow-up. No NPS at baseline, and only apathy at follow-up, correlated significantly (p = 0.007) with patient self-rated QoL-AD scores. Caregiver-rated patient QoL-AD scores correlated significantly with most NPS, especially (p ≤ 0.001) apathy, agitation, anxiety, irritability, depression, and delusions at baseline, and delusions, hallucinations, apathy, appetite disturbances, and anxiety during follow-up. Patient rated QoL-AD scores are an unreliable tool with which to evaluate the success of therapy for NPS. Instead, caregiver-rated scores for patients correlated well with NPI scores, and health care professionals in the clinic should preferentially use these. Copyright © 2017 John Wiley & Sons, Ltd.

P-072 Self-rated and caregiver-rated quality of life in Alzheimer's disease: 5-year prospective ALSOVA cohort study

P-072 Self-rated and caregiver-rated quality of life in Alzheimer's disease: 5-year prospective ALSOVA cohort study

Self-Rated and Caregiver-Rated Quality of Life in Alzheimer Disease with a Focus on Evolving Patient Ability to Respond to Questionnaires: 5-Year Prospective ALSOVA Cohort Study

To examine and compare self-rated and caregiver-rated measures of quality of life (QoL) in relation to disease progression in patients with very mild or mild Alzheimer disease (AD) and at what disease stage patient's ability to respond to QoL questionnaires with or without assistance begins to diminish. 236 patients with very mild or mild AD and their family caregivers from three Finnish hospital districts participated in this prospective, longitudinal study with 5 years of follow-up. Three patient-reported instruments were used to assess QoL (the generic 15D, the Quality of Life in Alzheimer Disease [QoL-AD] questionnaire, and a visual analogue scale) as well as one caregiver-rated assessment of patient QoL (QoL-AD). AD severity was evaluated with the Clinical Dementia Rating Scale- Sum of Boxes (CDR-SOB). All self- and caregiver-rated QoL estimates correlated with AD severity. The self- and caregiver-rated QoL scores began to diverge even with very mild cognitive impairment after CDR-SOB reached 4, the value that corresponds with a Mini-Mental State Examination (MMSE) score of 25-30. Patients also began to need assistance in responding to questionnaires at very early stages of AD (CDR-SOB score: 4-6). Furthermore, their ability to respond to QoL questionnaires with or without assistance declined after CDR-SOB reached 11 points, a value that correlates with an early moderate stage of AD and MMSE score of 11-20. AD patients' self-rated QoL ratings are much more insensitive to disease progression than caregiver ratings.

Predictors of self- and caregiver-rated quality of life for people with dementia living in the community and in nursing homes in northern Taiwan.

Factors affecting quality of life (QOL) ratings for people with dementia (PWD) have been well studied, but few studies have examined the effect of residence on PWD- and caregiver-rated QOL for PWDs. We designed this study to determine the factors related to PWD- and caregiver-rated QOL in dementia as well as factors related to the discrepancy in these ratings. For this cross-sectional study, we analyzed data from a convenience sample of 106 PWD-family caregiver dyads (58 community-dwelling dyads and 48 nursing-home dyads). PWDs' data included socio-demographic variables, QOL (assessed by the Quality of Life-Alzheimer's Disease [QOL-AD] scale), cognition, dementia severity, depression, comorbidities, and quality of the dyadic relationship. Caregivers' data included socio-demographic variables, depressive symptoms, and mutuality of the dyadic relationship. QOL-AD scores were lower when rated by caregivers than by PWDs. The key factors positively related to both PWD- and caregiver-rated QOL for PWDs were fewer PWD depressive symptoms and higher quality of the PWD-caregiver relationship. The key factors related to the discrepancy in PWD- and caregiver-rated QOL in dementia were PWD residence in a nursing home and lower dementia severity, as well as higher caregiver depression, being an adult child caregiver, and lower caregiver-PWD mutuality. Caregiver-rated QOL for PWDs and the discrepancy in rated QOL were significantly associated with PWD residence. If caregiver-rated QOL is needed, the effect of residence of PWD should be taken into consideration. Caregivers' depressive status and mutuality with PWD must be also carefully assessed.

Differential perceptions of quality of life (QoL) in community-dwelling persons with mild-to-moderate dementia

Discordance between patient- and caregiver-reported quality of life (QoL) is well recognized. This study sought to (i) identify predictors of discrepancy between patient- and caregiver-rated QoL amongst community-dwelling persons with mild-to-moderate dementia, and (ii) differentiate between patients who systematically rate their QoL lower versus those who rate their QoL higher relative to their caregiver ratings. We recruited 165 patient-caregiver dyads with mild-to-moderate dementia. Quality of life in Alzheimer's disease (QoL-AD) scale was administered separately to patients and caregivers. Data on socio-demographics, interpersonal relationship, and disease-related characteristics (cognitive performance, mood, neuropsychiatric symptoms, functional ability, and caregiver burden) were collected. Patient-caregiver dyads were categorized based on whether patient-rated QoL was lower or higher than their respective caregiver ratings. Univariate analyses and multiple regression models were performed to identify predictors of dyadic rating discrepancy. Mean patient-rated QoL was significantly higher than caregiver rating (mean difference: 3.8 ± 7.1, p < 0.001). Majority (111 (67.2%)) of patients had more positive self-perceived QoL (QoL-ADp (QoL-AD self rated by the patient) > QoL-ADc (QoL-AD proxy-rated by a caregiver)), compared with those (44 (26.7%)) with poorer self-perceived QoL (QoL-ADp < QoL-ADc). Patient's education level, depressive symptoms, and severity of neuropsychiatric symptoms predicted magnitude of discrepancy. Depression (OR = 1.17, 95% CI = 1.02-1.35) and being cared for by other relative (non-spouse/adult child; OR = 7.54, 95% CI = 1.07-53.03) predicted poorer self-perceived QoL. Dyadic rating discrepancy in QoL should draw the clinician's attention to patient depression and neuropsychiatric symptoms. Consideration should also be given to nature of patient-caregiver relationship when discordance between patient and caregiver assessments of QoL is observed.

Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures

To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development. Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease-Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD' QOL. Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression. Correlates of QOL in community-residing PWD depend on who rates the PWD's QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.

Quality of life in early dementia: Comparison of rural patient and caregiver ratings at baseline and one year.

This study examined change in patient and caregiver ratings of patient quality of life (QOL) over one year in individuals with dementia living in rural and remote settings. The sample was selected from non-institutionalized patients who were assessed at an interprofessional memory clinic. Measures of QOL, cognitive function, depression, and functional ability were completed by the patient. Caregivers completed measures of patient QOL and behavior, and their own burden and distress. At baseline (clinic day) 119 patients and family caregivers were assessed. Thirty-two families had complete data at clinic day and one-year follow-up. There was no significant change in either patient or caregiver-rated QOL over one year. Significant predictors of patient self-rated QOL were patient symptoms of depressed mood and functional ability at clinic day, and symptoms of depressed mood and clinic day QOL at one year. Significant predictors of caregiver-rated patient QOL were caregiver burden, patient functional ability, and symptom severity at clinic day, and caregiver burden at one year. Patient and caregiver ratings of patient QOL were moderately associated, but neither patients nor their caregivers reported a significant change in patient QOL. Changes in QOL over time remain a unique individual experience that cannot be entirely predicted by analytical models.

Predictors of Family Caregiver Ratings of Patient Quality of Life in Alzheimer Disease: Cross-Sectional Results from the Canadian Alzheimer's Disease Quality of Life Study

To assess whether the core symptoms of Alzheimer disease (AD) and caregiver factors consistently predict family caregiver ratings of patient quality of life (QOL) as assessed by a variety of QOL measures in a large national sample. : Cross-sectional. Fifteen dementia and geriatric clinics across Canada. : Family caregivers (n = 412) of community-living patients with AD of all severities. Caregiver ratings of patient QOL using three utility indexes, the European Quality of Life-5 Dimensions, Quality of Well-Being Scale and Health Utilities Index; a global QOL visual analogue scale; a disease-specific measure, the Quality of Life-Alzheimer's Disease; and a generic health status measure, the Short Form-36. Patient cognition was assessed with the cognitive subscale of the Alzheimer's Disease Assessment Scale and Mini-Mental State Examination, function with the Disability Assessment for Dementia, and behavioral and psychological symptoms with the Neuropsychiatric Inventory and the Geriatric Depression Scale. Caregiver burden was assessed with the Zarit Burden Interview and caregiver depression with the Center for Epidemiologic Studies Depression scale. One-way analysis of variance and fully adjusted multiple linear regression were used to assess the relationship between patient dementia symptom and caregiver variables with QOL ratings. In multivariable analyses, caregiver ratings of patient function and depressive symptoms were the only consistent independent predictors of caregiver-rated QOL across the QOL measures. Caregiver ratings of patient function and depression were consistent independent predictors of caregiver-rated QOL, using a spectrum of QOL measures, while measures of patient cognition and caregiver burden and depression were not. These findings support the continued use of caregiver ratings as an important source of information about patient QOL and endorse the inclusion in AD clinical trials of caregiver-rated measures of patient function, depression, and QOL.

Generic and Disease-Specific Measures of Quality of Life in Patients with Mild Alzheimer’s Disease

Background/Aim: The aim of the study was to investigate the pattern of association of generic and disease-specific quality of life (QoL) scales with standard clinical outcome variables in Alzheimer’s disease (AD). Methods: The participants were 321 home-living patients with mild AD and their primary caregivers from the Danish Alzheimer Intervention Study. QoL was assessed using the generic EuroQol-5D with visual analogue scale (VAS) and the disease-specific Quality of Life in Alzheimer’s Disease (QOL-AD) scales (both caregiver and patient rated). Depression, activities of daily living, cognitive performance and neuropsychiatric symptom severity were also assessed. Results: All 3 caregiver-rated QoL scales correlated significantly with each other (p < 0.001) and with clinical measures. Patient-rated QoL versions correlated inversely with depression (p < 0.001) but not significantly with any other clinical variables. Conclusion: The caregiver-rated QoL scales showed stronger interscale correlation as well as a similar correlation pattern with standard clinical outcome variables compared to the patient-rated versions. There is some indication that the EQ-5D + VAS could be a suitable alternative to the QOL-AD scale in specific research designs.

Determinants of the discrepancy in patient‐ and caregiver‐rated quality of life for persons with dementia

To determine factors related to the discrepancy in patient- and proxy-rated quality of life for patients with dementia; whether this discrepancy is associated with characteristics of patients, caregivers or the caregiver-patient relationship; and which characteristics best predict this discrepancy. To increase the reliability of quality of life measurements for persons with dementia, many researchers have incorporated proxy reports. However, their investigations have indicated that caregiver-rated quality of life is not the same as the patient's own rating. The factors related to this discrepancy have previously been explored, but studies rarely focussed on the quality of the caregiver-patient relationship as a determinant of the discrepancy. A cross-sectional design was used. Data were gathered from community-based interviews with 120 dyads of patients with Alzheimer's disease or related dementia and their caregivers in Taipei. A structured questionnaire was used to collect data, and the main variable (quality of life-Alzheimer's disease) was rated separately by patients and caregivers. The data were analysed using intraclass correlation coefficients and multivariate regression methods. The agreement between patients' and caregivers' quality of life-Alzheimer's disease ratings was low. This discrepancy was significantly associated with disturbing dementia behaviour, caregivers' perceived distress for problem behaviours, caregivers' overall quality of life and quality of the caregiver-patient relationship. The observed discrepancy between caregiver- and patient-rated quality of life for persons with dementia was largely predicted by the quality of the caregiver-patient relationship. Medical professionals should cautiously deliberate when using caregiver-reported quality of life to substitute for patient-reported quality of life. When using a proxy report or a combined caregiver-patient rating, medical professionals should assess the quality of the relationship between patient and proxy.

Correlates of Caregiver-Rated Quality of Life in Assisted Living: The Maryland Assisted Living Study

We used a cross-sectional study to examine the correlates of caregiver-rated quality of life (QOL) in 198 randomly selected residents from a stratified random sample of 22 assisted living facilities in central Maryland. We measured QOL by using the Alzheimer's Disease-Related Quality of Life Questionnaire. In general, despite cognitive impairment, residents in assisted living were rated as having a high QOL. In a multivariate regression, we found that nonmood neuropsychiatric symptoms were the strongest correlate of QOL, explaining 37% of the variance. Depressive symptoms, functional dependence, marital status, and cognition also contributed to the model, but only minimally. Because of the strong association of neuropsychiatric symptoms with QOL, special attention should be given to their recognition and amelioration.