Determinants of quality of life in Alzheimer's disease: perspective of patients, informal caregivers, and professional caregivers

Department of Psychology, Catholic University of Murcia, Murcia, Spain.
International Psychogeriatrics (Impact Factor: 1.93). 06/2012; 24(11):1805-15. DOI: 10.1017/S1041610212001081
Source: PubMed


Alzheimer's disease (AD) is a chronic medical condition with symptoms that compromise patients' quality of life (QoL). The identification of the factor predicting QoL in AD is essential to develop more effective interventions. Recent research suggests that these factors could be different for the distinct informants. This study explores the QoL predictors considering three different sources of information: patients, caregivers, and healthcare staff.

In this cross-sectional study, a sample of 102 patients, their primary caregivers, and 15 members of the healthcare staff evaluated patients' QoL (QoL-AD Scale). Patients' and caregivers' demographic and clinical data (cognitive function, neuropsychiatric symptoms, depression, and caregivers' burden) were considered as QoL predictors.

In multivariate-adjusted linear regression analyses, we observed that patients' ratings were mainly affected by their mood whereas caregivers' ratings were also negatively influenced by patients' irritability and burden. According to staff ratings, both psychotic symptoms and neuroleptics were associated with lower QoL.

Our findings suggest that depression is the main variable related to patients' QoL and that more careful management of neuropsychiatric disorders is necessary. Both proxies' ratings are not equivalent to patients' reports in terms of predictors but they are complementary. Thus, a thorough QoL assessment should consider separately the perspective of the different informants.

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    • "This study again reflects different views and priorities about PwD's QoL. Therefore, QoL perspectives should be considered to be complementary (Logsdon et al. 2002, Gomez-Gallego et al. 2012). Our finding that self-reported QoL only correlates with a self-assessed instrument (S-MMSE) and proxy-reported QoL only correlates with proxy-assessed instruments (CSDD and Katz Index of Independence in ADL), was not earlier observed by other studies. "
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    ABSTRACT: AimTo assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities.Background Many people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission.DesignAn observational and longitudinal survey.Methods Data on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010–April 2012. Quality of life was assessed by people with dementia and their proxies using the ‘Quality of Life-Alzheimer's Disease scale’. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed.ResultsBetter cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased.Conclusion Cognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization.
    Full-text · Article · Nov 2014 · Journal of Advanced Nursing
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    • "), decreased presence of neuropsychiatric symptoms (Matsui et al., 2006; Gomez-Gallego et al., 2012), lower dependence in activities of daily living (ADLs; Nakanishi et al., 2011; Conde-Sala et al., 2013), and in some studies, better cognitive function (Matsui et al., 2006; Conde-Sala et al., 2013; Crespo et al., 2013). "
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    ABSTRACT: Quality of life (QoL) is one of the most important outcomes in improving well-being in people with dementia (PwD). The primary aim of the present study was to compare self and carer ratings of QoL in PwD and to identify the most important factors influencing self and carer ratings. We conducted a cross-sectional analytic study of 488 dyads using the Quality of Life in Alzheimer's Disease scale, demographics, data on self-rated health, and clinical characteristics. Higher levels of self-rated health in PwD were associated with higher self-rated QoL after controlling for depression and activities of daily living. When the carer experienced less stress related to caregiving, the PwD reported better QoL. Higher carer-rated QoL was associated with less carer stress, better health for the family carer, and the PwD being of younger age. When carers lived with the PwD, and reported lower levels of depression and better functional ability for their relative, carer-rated QoL was higher. The self-rated health of PwD and carers influences the ratings they make of the QoL of the PwD indicating that it is an important influence on QoL in this population. Copyright © 2014 John Wiley & Sons, Ltd.
    Full-text · Article · May 2014 · International Journal of Geriatric Psychiatry
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    • "In contrast to previous research, elderly persons and informal caregiver (or family members) share the same preferences when it comes to the assessment of a subjective measure such as GWB [25-28]. Perhaps, the discrepancy between our findings and findings in other studies can be explained by the fact that in our study there was no personal relationship between the informal caregiver and elderly patient (cases described in the vignettes) that could influence the assessment made, e.g. "
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    ABSTRACT: The Older Persons and Informal Caregivers Survey Minimal Dataset's (TOPICS-MDS) questionnaire which measures relevant outcomes for elderly people was successfully incorporated into over 60 research projects of the Dutch National Care for the Elderly Programme. A composite endpoint (CEP) for this instrument would be helpful to compare effectiveness of the various intervention projects. Therefore, our aim is to establish a CEP for the TOPICS-MDS questionnaire, based on the preferences of elderly persons and informal caregivers. A vignette study was conducted with 200 persons (124 elderly and 76 informal caregivers) as raters. The vignettes described eight TOPICS-MDS outcomes of older persons (morbidity, functional limitations, emotional well-being, pain experience, cognitive functioning, social functioning, self-perceived health and self-perceived quality of life) and the raters assessed the general well-being (GWB) of these vignette cases on a numeric rating scale (0-10). Mixed linear regression analyses were used to derive the preference weights of the TOPICS-MDS outcomes (dependent variable: GWB scores; fixed factors: the eight outcomes; unstandardized coefficients: preference weights). The mixed regression model that combined the eight outcomes showed that the weights varied from 0.01 for social functioning to 0.16 for self-perceived health. A model that included "informal caregiver" showed that the interactions between this variable and each of the eight outcomes were not significant (p > 0.05). A preference-weighted CEP for TOPICS-MDS questionnaire was established based on the preferences of older persons and informal caregivers. With this CEP optimal comparing the effectiveness of interventions in older persons can be realized.
    Full-text · Article · Apr 2014 · BMC Geriatrics
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