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

ArticleinInternational Psychogeriatrics 24(11):1805-15 · June 2012with22 Reads
DOI: 10.1017/S1041610212001081 · Source: PubMed
Background: 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. Methods: 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. Results: 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. Conclusions: 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.
    • "It should be noted that when scores on the NPI Depression subscale were used as a measure of depression in the groups of both models, the results were consistent with those obtained with the GDS, although their statistical relevance was reduced. This finding is in line with previous research [39]. Depression is clearly the most important clinical factor associated with poorer self-perceived QoL in both models (Low-QoL group and Decreased- QoL group), although the statistical effect is more notable in the QoL-Baseline model. "
    [Show abstract] [Hide abstract] ABSTRACT: The objective was to analyze the factors that influence self-perceived quality of life (QoL) in patients with Alzheimer’s disease (AD), contrasting two different longitudinal models. A total of 127 patients were followed up over 24 months. The instruments applied were: Quality of Life in Alzheimer’s Disease scale (QoL-AD), Geriatric Depression Scale-15, Anosognosia Questionnaire-Dementia, Disability Assessment in Dementia, Neuropsychiatric Inventory, and the Mini Mental State Examination. Two models for grouping patients were tested: 1) Baseline score on the QoL-AD (QoL-Baseline), and 2) Difference in QoL-AD score between baseline and follow-up (QoL-Change). Generalized estimating equations (GEE) were used to analyze longitudinal data, and multinomial regression analyses were performed. Over the follow-up period the QoL-Baseline model showed greater variability between groups (Wald χ2 = 172.3, p < 0.001) than did the QoL-Change model (Wald χ2 = 1.7, p = 0.427). In the QoL-Baseline model the predictive factors were greater depression (odds ratio [OR] = 1.20; 95% CI: 1.00-1.45) and lower functional ability (OR = 0.92; 95% CI: 0.85-0.99) for the Low QoL group (< 33 QoL-AD), and less depression (OR = 0.68; 95% CI: 0.52-0.88), more anosognosia (OR = 1.07; 95% CI: 1.01-1.13), and fewer neuropsychiatric symptoms (OR = 0.95; 95% CI: 0.91-0.99) for the High-QoL group (>37 QoL-AD). The model based on baseline scores (QoL-Baseline) was better than the QoL-Change model in terms of identifying trajectories and predictors of QoL in AD.
    Full-text · Dataset · May 2016 · PLoS ONE
    • "Arons et al., 2013; Carpenter, Kissel, & Lee, 2007; Conde-Sala, Garre-Olmo, Turro-Garriga, LopezPousa, & Vilalta-Franch, 2009; Edelman, Fulton, Kuhn, & Chang, 2005). To explain differences in reporting, studies have examined cognitive functioning (Arlt et al., 2008), depression (Gomez-Gallego, Gomez-Amor, & Gomez-Garcia, 2013), insight (Yap et al., 2008) and awareness (Vogel, Mortensen, Hasselbalch, Andersen, & Waldemar, 2006) to assess whether these features of dementia result in a person overestimating their quality of life. Others studies have focused on carer 'burden' to examine whether depression (Banerjee et al., 2006), perceived dependency (Hoe et al., 2006) or behavioural disturbance (Banerjee et al., 2006) result in carers underestimating quality of life. "
    [Show abstract] [Hide abstract] ABSTRACT: Objectives: Quality of life is an important focus of research on dementia, with interest in direct reports of people with dementia and proxy reports of their carers. By exploring the subjective perspectives of unpaid family carers and paid care workers, this study aims to understand how carers construct meaning in narratives about quality of life with dementia. Method: A case-centred approach involved biographical narrative interviews with 10 carers to explore what was important for people with dementia to have a good quality of life. Detailed narrative analysis attended to the linguistic and structural features of accounts to consider how dementia is conceptualised by carers in the framing of quality of life. Results: An individual's perception of how dementia impacts on awareness and behaviour was central to their understanding of quality of life. Carers who constructed dementia as a loss of skills and abilities were able to represent quality of life in positive terms despite the challenges of dementia. Carers who constructed dementia as eroding identity represented quality of life less positively and centred on their own means of coping with a challenging care situation. Conclusion: Findings highlight the importance of helping carers develop positive constructions of quality of life that are associated with understanding dementia as a loss of skills and abilities, rather than as a loss of self. Engaging with subjectivity in carers' biographical narrative accounts is important in the development of quality of life assessment to understand the meanings and emotions that underlie proxy perspectives.
    Article · Nov 2015
    • "Our primary findings indicate that the weights of TOPICS-CEP's components based on the health state preferences of healthcare professionals differed significantly from those based on the preferences of older persons and informal caregivers. These findings are in line with other studies exploring the discrepancies between older persons and healthcare professionals concerning health state preferences [15, 16]. Our results indicate that the presence of morbidities and functional limitations in the vignette cases have a greater impact on the GWB scores given by older persons and informal caregivers than on the scores given by healthcare professionals. "
    [Show abstract] [Hide abstract] ABSTRACT: The Older Persons and Informal Caregivers Survey-Minimum Dataset (TOPICS-MDS) collects uniform information from research projects funded under the Dutch National Care for the Elderly Programme. To compare the effectiveness of these projects a preference-weighted outcome measure that combined multidimensional TOPICS-MDS outcomes into a composite endpoint (TOPICS-CEP) was developed based on the health state preferences of older persons and informal caregivers. To derive preference weights for TOPICS-CEP's components based on health state preferences of healthcare professionals and to investigate whether these weights differ between disciplines and differ from those of older persons and informal caregivers. Vignette studies were conducted. Participants assessed the general wellbeing of older persons described in vignettes on a scale (0-10). Mixed linear analyses were used to obtain and compare the preference weights of the eight TOPICS-CEP components: morbidities, functional limitations, emotional wellbeing, pain experience, cognitive problems, social functioning, self-perceived health, and self-perceived quality of life (QOL). Overall, 330 healthcare professionals, 124 older persons and 76 informal caregivers participated. The preference weights were not significantly different between disciplines. However, the professionals' preference weights differed significantly from those of older persons and informal caregivers. Morbidities and functional limitations were given more weight by older persons and informal caregivers than by healthcare professionals [difference between preference weights: 0.12 and 0.07] while the opposite was true for pain experience, social functioning, and self-perceived QOL [difference between preference weights: 0.13, 0.15 and 0.26]. It is important to recognize the discrepancies between the health state preferences of various stakeholders to (1) correctly interpret results when studying the effectiveness of interventions in elderly care and (2) establish appropriate healthcare policies. Furthermore, we should strive to include older persons in our decision making process through a shared decision making approach.
    Full-text · Article · Mar 2015
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