The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the Dependence in AD in England 2 longitudinal study

Objective: The relationship between conventional indicators of Alzheimer’s disease (AD) progression and quality of life (QoL) outcomes is unclear. Dependence on others has been recommended as a unifying construct in defining AD severity. This study examined the relationship between indicators of disease severity (including dependence) and changes in QoL and utility over 18-months. Methods: A multi-centre, cohort study was conducted across 18 UK sites. One hundred and forty five patients with possible/probable AD and their caregivers completed assessments of disease severity (Dependence Scale, Mini-Mental State Examination, Neuropsychiatric Inventory, Disability Assessment for Dementia), dementia-specific QoL (DEMQOL, DEMQOL-Proxy) and generic health-related utility (EQ-5D) at both time points. Results: There was evidence of individual change in QoL over 18 months, with over 50% of patients reporting either maintenance or improvement of life quality. The EQ-5D proxy suggested a mean decline in QoL whilst the DEMQOL-Proxy indicated overall improvement. In the subsample of people who self-reported QoL and utility, no mean change was evident. Changes in dependence did not explain changes on any QoL or utility outcome. There was a weak association between the EQ-5D proxy and changes in cognition, whereas changes on the DEMQOL-Proxy were partly explained by changes in behavioural disturbance. Conclusions: The natural progression of AD over 18-months does not lead to inevitable decline in QoL or utility. There are no clear or consistent direct relationships between changes in disease severity and QoL outcomes. The impact of increasing dependence and worsening disease severity is likely buffered by a combination of psychological, social and environmental factors

Generic quality of life assessment in dementia patients: a prospective cohort study

<p>Abstract</p> <p>Background</p> <p>Quality of life (QoL) is increasingly used to characterize the impact of disease and the efficacy of interventions.</p> <p>Methods</p> <p>Prospective cohort study in patients' and proxies' homes with137 patients with dementia (age 52 to 88; Mini-Mental Status Examination (MMSE) 3 to 28) and their proxies (age 43 to 90). MMSE, Behave-AD, Geriatric Depression Scale (GDS), and Bayer-ADL scale (B-ADL), and the Euroqol (EQ-5D; patient self-rating, proxy self-rating, and proxy-rating of patient).</p> <p>Results</p> <p>B-ADL impairment and Behave-AD total score increased with dementia severity (Kruskal-Wallis p < 0.001 and p = 0.023, respectively). Patients' self-rated QoL and proxies' self-rated QoL were unrelated to dementia severity (p = 0.148 and p = 0.414, respectively). The difference between patients' self- and proxies'-rating of the patient's QoL correlated with the patient's MMSE (Spearman's rho = -0.434; p < 0.001), even if analysis was constrained to patients with mild AD (rho = -0.328; p = 0.019). The proxies' rating of the patients QoL was not only correlated with cognitive and behavioral symptoms of the patient but also with mood (GDS-score; rho = 0.317; p < 0.001) and cognitive abilities (verbal fluency; rho = 0.209; p < 0.018) of the proxy.</p> <p>Conclusion</p> <p>Proxies' assessment of the patients' QoL is related to the proxies' health, and the difference of patient's and proxie's QoL-rating is correlated with dementia severity even in mild dementia stages. QOL measures use ratings of the individual to assess the impact of symptoms and disorders on everyday life. In dementia patients, however, this impact is not captured since patients' and proxies' self-assessment of their own QoL do not reflect severity of disease whatsoever. Patients' and proxies' influencing variables render the score obtained with generic quality of life assessment meaningless in capturing the impact of dementia. Decisions on initiation or discontinuation of treatment or allocation of other resources for patients with dementia therefore need not depend on generic assessment of quality of life.</p

Increased masticatory activity and quality of life in elderly persons with dementia-a longitudinal matched cluster randomized single-blind multicenter intervention study.

Background: Worldwide, millions of people are suffering from dementia and this number is rising. An index of quality of life (QoL) can describe the impact a disease or treatment has on a person's wellbeing. QoL comprises many variables, including physical health and function, and mental health and function. QoL is related to masticatory ability and physical activity. Animal studies show that disruption of mastication due to loss of teeth or a soft diet leads to memory loss and learning problems. Since these are common complaints in dementia, it is hypothesized that improvement of masticatory function and normalization of diet consistency can increase QoL in elderly persons suffering from dementia. Therefore, the goal of the present study is to examine whether an increase in masticatory activity, achieved by increased food consistency and enhancement of masticatory function through improved oral health care has a positive effect on QoL, including cognition, mood, activities of daily living (ADL), and circadian rhythm in elderly persons with dementia.Methods and design: The described study is a prospective longitudinal matched cluster randomized single-blind multicenter study. Participants are elderly persons living in the Netherlands, suffering from dementia and receiving psychogeriatric care. An intervention group will receive improved oral health care and a diet of increased consistency. A control group receives care as usual. Participants will be assessed four times; outcome variables besides QoL are cognition, mood, independence, rest-activity rhythm, blood pressure, and masticatory function.Discussion: This research protocol investigates the effect of an intervention executed by daily caregivers. The intervention will increase masticatory activity, which is achieved by three different actions, (providing oral health care, increasing food consistency, or a combination of both). There is a certain amount of variety in the nature of the interventions due to local differences in nursing homes. This might be a scientific weakness in the study design; however, a practical implementation of any findings will be subject to the same factors, making this study design clinically relevant.Trial registration: NTR1561. © 2013 Weijenberg et al.; licensee BioMed Central Ltd

Family dynamics in face of Alzheimer's in one of its members

Abstract OBJECTIVE To understand the family dynamics when there is a member in the residence with Alzheimer's disease. METHOD A study of qualitative approach, using the creative sensitive method (CSM), and with participation of two families who had a member with Alzheimer's disease at home. RESULTS Three categories emerged: Effects of Alzheimer's disease and the family dynamics; Development process of Alzheimer's disease and Coping strategies in face of the disease. CONCLUSION It was possible to know the manifestations and consequences of Alzheimer's disease in the family, such as mutual help, the mobilization of resources to activate memories of the past, spirituality and faith. There was also understanding of the structure of family dynamics

Discrepancies Between Alzheimer's Disease Patients' and Caregivers' Ratings About Patients' Quality of Life: A 1-year Observation Study in Brazil

Objectives: We investigated the factors associated with discrepancies between patients' and caregivers' ratings about patients' general QoL and about the domains of Quality of Life in Alzheimer's disease Scale (QoL-AD) at baseline and 12 months. Methods: Longitudinal study composed by 114 outpatients with Alzheimer's disease and their caregivers. Patients were assessed with the QoL-AD, Mini Mental State Examination, Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, Cornell Scale for Depression, Functional Activities Questionnaire, Neuropsychiatric Inventory and Clinical Dementia Rating Scale. Caregivers answered the QoL-AD, Zarit Burden Interview and Sociodemographic Questionnaire. Results: Linear regression analyses indicated that the factors associated with discrepancies of patients' and caregivers' ratings of patients' QoL-AD were impaired awareness and caregiver burden at baseline and impaired awareness at 12 months. Also, the factor associated with discrepancies in domain memory was impaired awareness and in domain ability to do chores, impaired awareness and functional deficit. Conclusions: The discrepancies between patients and caregivers were related to awareness and caregiver burden at baseline and to awareness at 12 months. These results raise questions regarding the subjective nature of QoL and the validity of patients' evaluation about their own QoL

Developing a proxy version of the Adult Social Care Outcome Toolkit (ASCOT)

Background: Social care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments. A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes. Methods: To evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to ‘think aloud’ while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent’s comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response. Results: A total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report. Conclusions: A new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties

Developing a proxy version of the Adult Social Care Outcome Toolkit (ASCOT)

Background: Social care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments. A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes. Methods: To evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to ‘think aloud’ while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent’s comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response. Results: A total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report. Conclusions: A new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT)

Background: Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. Methods: Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. Results: Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. Conclusions: This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research