Assessing Alzheimer's disease patients' quality of life: Discrepancies between patient and caregiver perspectives

Andrieu, Sandrine; Coley, Nicola; Rolland, Yves; Cantet, Christelle; Arnaud, Catherine; Guyonnet, Sophie; Nourhashémi, Fati; Grand, Alain; Vellas, Bruno

doi:10.1016/j.jalz.2015.09.003

Cited by 37 publications

(60 citation statements)

References 44 publications

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“…The divergence between QoL rated by patients and caregivers becomes apparent at a very early stage of dementia, a finding confirmed by several past studies [35-39]. Andrieu et al [34] also stated that caregivers consistently underestimate the QoL of patients with dementia compared to the patients themselves. It is clear that the self-rated QoL by a patient with dementia is much more insensitive to disease progression than is caregiver rating [32].…”

Section: Discussionmentioning

confidence: 52%

Psychometric Validation of the Czech Version of the Quality of Life – Alzheimer’s Disease Scale in Patients with Early-Stage Dementia

Kisvetrová

Školoudík

Herzig

et al. 2018

Dement Geriatr Cogn Disord

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Background/Aims: The aim of this study was to perform a psychometric validation of the Czech version of the Quality of Life – Alzheimer’s Disease scale (QoL-AD) for patients with early-stage dementia. Methods: The sample included 212 patient-proxy pairs. For convergent validity, the Czech version of the Bristol Activities of Daily Living Scale (BADLS-CZ), the Short Physical Performance Battery (SPPB), and the Geriatric Depression Scale (GDS) were used. Results: The reliability of the QoL-AD for patients and caregivers was good (Cronbach’s α = 0.85, ICC = 0.25–0.54). A positive correlation existed between the QoL-AD and the SPPB, and negative correlations existed between the QoL-AD and the BADLS-CZ as well as between the QoL-AD and the GDS. Factor analysis resulted in a three-factor solution (physical and mental health, family life, and social security). Conclusion: The Czech version of the QoL-AD has good psychometric properties in compliance with international recommendations.

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Section: Discussionmentioning

confidence: 52%

Psychometric Validation of the Czech Version of the Quality of Life – Alzheimer’s Disease Scale in Patients with Early-Stage Dementia

Kisvetrová

Školoudík

Herzig

et al. 2018

Dement Geriatr Cogn Disord

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“…Consistent with previous studies, informants experiencing higher perceived stress tended to rate the person with dementia as having poorer ability to live well and more functional impairment. 40,45,46,[62][63][64][65] Interestingly, informants had relatively mild levels of perceived stress, suggesting that even mild carer stress may influence informant ratings of functional ability and living well. This raises questions about the reliability and validity of relying solely on informants to provide judgements of functional ability, particularly as most carers report some level of stress due to their caring responsibilities, 66 across the functional ability levels, which fits with the suggestion that satisfaction with life may be relatively stable; for example, there is little quantitative difference between the scores of university students and healthy older people.…”

Section: Discussionmentioning

confidence: 99%

The relationship between perceived functional difficulties and the ability to live well with mild‐to‐moderate dementia: Findings from the IDEAL programme

Martyr

Nelis

Quinn

et al. 2019

Int J Geriat Psychiatry

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Objectives The objectives of the study are to investigate how different levels of functional ability relate to quality of life, well‐being, and satisfaction with life, conceptualised as reflecting capability to “live well” in people with dementia. Methods/design Participants were 1496 people with mild‐to‐moderate dementia and 1188 informants who completed baseline assessments in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Total self‐rated and informant‐rated scores on the Functional Activities Questionnaire were split into six ability levels to monitor how poorer functioning impacts the ability to live well. We also investigated the potential influence of sociodemographic and diagnostic variables, depression, cognition, and carer stress. Results Multivariate multiple regression models found that people with dementia who had the greatest functional impairment according to self‐ratings and informant ratings had poorer living well scores than those with the least functional impairment. Sociodemographic and diagnostic factors and cognition had little impact on effect sizes. For self‐ratings, depression attenuated the relationship between functional ability and living well, whereas carer stress attenuated informant ratings. Conclusions People with dementia with the least functional impairments had greater capability to live well than those with the most functional impairment. Even subtle perceived difficulties in functional ability had a detrimental effect on the ability of people with dementia to live well. Depression in people with dementia and carer stress in informants influenced these associations, and therefore, these factors should be routinely included in future research studies and clinical assessments.

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“…Many studies have also shown that AD‐related NPS leads to increasing burden on their caregivers (Agüera‐Ortiz et al, ; Mohamed et al, ; Vogel et al, ; Khoo et al, ; Turro‐Turró‐Garriga et al, ; Välimäki et al, ) and increases the risk of premature institutionalization (Gauthier et al, ; Gaugler et al, ). Again, caregivers may also reflect their own feelings of burden, when they evaluate NPS severity or the QoL of the patients (Black et al, ; Gómez‐Gallego et al, ; Andrieu et al, ). On the other hand, caregivers may also have difficulties to identify the patients NPS especially in mild AD (Stella et al, ).…”

Section: Discussionmentioning

confidence: 99%

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

Hongisto

Hallikainen

Selander

et al. 2017

Int J Geriat Psychiatry

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Objective: 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. Methods: 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. Results: 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. Conclusions: 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.

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Assessing Alzheimer's disease patients' quality of life: Discrepancies between patient and caregiver perspectives

Abstract: It is important to assess both self and caregiver ratings when assessing patient QOL.

Cited by 37 publications

References 44 publications

Psychometric Validation of the Czech Version of the Quality of Life – Alzheimer’s Disease Scale in Patients with Early-Stage Dementia

Psychometric Validation of the Czech Version of the Quality of Life – Alzheimer’s Disease Scale in Patients with Early-Stage Dementia

The relationship between perceived functional difficulties and the ability to live well with mild‐to‐moderate dementia: Findings from the IDEAL programme

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

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