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Quality of Life in Alzheimer’s disease: Patient and Caregiver Reports
Abstract
Assessed 13-item self- and caregiver-report measures from the Quality of Life in Alzheimer's Disease (QoL-AD) and explored the relationship of QoL to demographic characteristics, cognitive and functional status, depression, and pleasant activity level in 77 patients (mean age 78.3 yrs) with AD. Each AD S and a family caregiver completed the assessment. Internal consistency and test-retest reliability, assessed over a 1-wk interval, were adequate on both patient- and caregiver-report QoL-AD measures. Validity, as indicated by correlational analysis of QoL-AD scores and other measures that assessed cognitive and functional ability, mood, and pleasant events, was also good. High QoL-AD scores were explained by low levels of depressive symptoms, more independent functioning in Activities of Daily Living, and more years of education. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
... At post-intervention, a larger number of older adults reported that they still found completion "difficult" (78%; n = 7). For all other measures (QoL-AD [28], EQ-5D-5L [33], Geriatric Depression Scale (GDS) [30], MMSE [29], PPOM [32], SIS [31], AC-QoL [38], SSCQ [37] and ZBI [36]), the high levels of outcome completion across participant groupings indicated that the measures were feasible and acceptable, fulfilling the established criteria for progress. Missing data were handled as per the manual guidelines for that respective measure. ...
... Missing data were handled as per the manual guidelines for that respective measure. For example, guidance on the QoL-AD [28] notes that if a participant omits more than two missing items, the entire measure should be considered missing (if fewer than two missing items, the QoL-AD score for that participant should be calculated as an average of the remaining items). Where specific guidelines were not stated for missing data, a total score was calculated by summing the remaining items. ...
... Sample size estimates for a future definitive trial were calculated from the improvement (i.e. Post -Baseline) in QoL-AD measure completed by the people with dementia [28]. The sample size was based on a two-sided, two-sample t-test with 80% power at the 0.05 significance level to detect a difference in mean improvement of 3 units between the intervention and control groups, assuming a standard deviation of the improvement score of 7 (Table 5). ...
Background
A dementia diagnosis can lead to a decline in cognitive, social, and physical health, but people with dementia can live meaningful lives and participate actively in society with psychosocial support. This single-arm, non-randomised feasibility study explored the feasibility and acceptability of a Comprehensive REsilience-building psychoSocial intervenTion (CREST) for people with dementia, their caregivers, General Practitioners (GPs), and the public.
Methods
Nine people with dementia and their primary caregivers living in the community (n = 9 dyads) completed the CREST intervention which had three components (cognitive stimulation therapy [CST], physical exercise, and dementia education). Quantitative secondary outcomes were assessed at baseline and following the 15-week intervention; qualitative interviews were conducted during and post-intervention. All study components were assessed against pre-defined criteria, to determine the feasibility of conducting a future definitive trial.
Results
Recruitment of people with dementia and their caregiver was a significant challenge and led to considerable delays to the onset and conduct of the intervention. Only 13% of eligible GP practices agreed to assist in recruitment and achieved a 6% enrolment rate; a community-based recruitment strategy proved more effective, yielding a 29% enrolment rate. However, once recruited, participants maintained high attendance and adherence to the content of each component with average adherence rates of 98% for CST, exercise sessions and caregiver education. Adherence to secondary exercise measures was lower, with home exercise diary completion at 37% and Fitbit wear adherence at 80% during the day and 67% at night. The people with dementia felt their concentration and fitness had improved over the 15-week intervention and particularly enjoyed the social aspects (e.g. group classes, exercising with partners from the community). Caregivers felt they had better knowledge and understanding following their education component and reported that the social aspects (interacting and sharing experiences with each other) were important. Overall, participants reported that the three components of the intervention were feasible and acceptable. In addition, the quantitative measures and health economic tools employed were feasible. However, the secondary elements of the exercise component (recording home exercise diaries and Fitbit use) were not considered feasible. Overall, pre-defined criteria for progression to a definitive intervention were fulfilled in terms of acceptability, retention and fidelity but not recruitment.
Conclusion
While overall, the CREST intervention was feasible and acceptable to participants, significant difficulties with recruitment of people with dementia and their caregiver through GP practices impacted the viability of delivering the intervention. Recruitment through community-based groups proved a more feasible option and further work is needed to overcome barriers to recruiting this cohort before a larger-scale trial can be conducted.
Trial registration
ISRCTN25294519.
... Both subjective and objective QOL were evaluated using the Japanese version of the Quality of Life in Alzheimer's Disease (QOL-AD) [16,17]. The QOL-AD is a widely used dementia-specific scale developed by Logsdon et al. [18]. It is a highly reliable and valid tool for assessing the QOL of people with mild to moderate dementia (MMSE ≥ 10 points) and can be used to assess both subjective and objective QOL [19]. ...
Background: Quality of life (QOL) for people with dementia is a concept that includes not only functional disability and ability to perform activities of daily living (ADL) but also engagement in activity/participation. Previous studies have not included all variables related to functional disability, ability to perform ADL, and activity/participation in their analyses, and it is unclear the extent to which these factors are associated with QOL. Thus, this study aimed to identify factors associated with the QOL of institutionalized people with dementia by including functional factors and activity/participation reported in previous studies as variables.
Methods: This was a cross-sectional study. Multiple regression analysis with the forward-backward stepwise selection method was performed to analyze factors associated with QOL of institutionalized people with dementia, including the number of items of activity/participation, cognitive function, ADL independence, behavioral and psychological symptoms of dementia (BPSD), pain, and overall muscle strength, all of which have been reported to be associated with QOL.
Results: The number of items of activity/participation and BPSD were significantly associated with subjective QOL, wheras BPSD, the number of items of activity/participation, and ADL independence were significantly associated with objective QOL.
Conclusion: Activity/participation may be one of the significant factors associated with QOL of institutionalized people with dementia. Additionally, BPSD and ADL independence are important factors associated with QOL. A comprehensive combination of approaches that increase activity/participation, reduce BPSD, and improve ADL independence has the potential to improve the QOL of institutionalized people with dementia.
... The QOL-AD is an HRQoL questionnaire, with scores that typically range from 13 (poor health) to 52 (excellent health) [39]. The QOL-AD asks participants 13 questions that are scored from 1 to 4, covering physical health, energy, mood, living situation, memory, family, marriage, friends, self as a whole, ability to do chores around the house, ability to do things for fun, money, and life as a whole. ...
Mild cognitive impairment (MCI) and Alzheimer’s disease (AD) have a profound impact on patients' quality of life (QoL), with progressive declines occurring as the disease advances. This systematic review aims to summarize the published evidence on patient-reported outcomes (PROs) in individuals with MCI due to AD and mild AD dementia. Comprehensive searches were conducted across five major databases to identify studies reporting on utility values, disutilities, and QoL measures in these patient populations. A total of 23 studies were included that utilized various QoL assessment tools, including EQ-5D (n = 14), SF-36/SF-12 (n = 4), and QOL-AD (n = 11). Reported EQ-5D scores ranged from 0.81 to 0.92 for patients with MCI and from 0.67 to 0.85 for those with mild AD, indicating a noticeable decline in QoL as the disease progresses. QOL-AD scores ranged from 33.8 to 42.5 for MCI and from 32.4 to 38.1 for mild AD, equally reflecting the greater impairment in QoL with disease advancement. Interventions were generally associated with smaller declines in PROs compared to placebo, suggesting a positive impact of treatment in mitigating QoL deterioration. The findings underscore the significant QoL differences between MCI and mild AD, emphasizing the potential benefit of early intervention to preserve QoL and delay disease progression. This review highlights the importance of continued research to better understand QoL in patients with MCI and mild AD dementia, particularly in terms of capturing comprehensive patient-reported outcomes and evaluating the effectiveness of interventions over time. These findings can contribute to a more informed approach in clinical practice and support decision-making in the management of early-stage AD.
... Functional abilities were assessed using different tools such as the Activities of Daily Living (ADL) [60], the Activities of Daily Living Questionnaire (ADL-Q) [15], and the Bayer-Activities of Daily Living (B-ADL) [48]. The assessment of quality of life (QoL) was performed using the following tools: Quality of Life in Alzheimer's Disease Scale (QOL-AD) [65], health-related quality of life (HRQoL) [82], and quality-of-life assessment in Dementia (DEM-QOL) [84]. ...
Cognition-oriented treatments (COTs) are a group of non-pharmacological treatments aimed at maintaining or improving cognitive functioning. Specific recommendations on the use of these interventions in people living with dementia (PLwD) are included in the Italian Guideline on the Diagnosis and Treatment of Dementia and Mild Cognitive Impairment, developed by the Italian National Institute of Health. This systematic review and meta-analysis, based on the GRADE methodology, is part of the guideline. Considered outcomes included the cognitive functions, quality of life, and functional abilities of PLwD, taking into account disease severity, modality and system of delivery, and form of the intervention. The effectiveness of these interventions on caregivers’ outcomes was also assessed. Both group and individual cognitive stimulation were reported as effective in supporting cognitive functions in PLwD at any degree of severity. Individual cognitive training and group cognitive training were reported as effective in improving global cognitive functions in people with mild dementia. Cognitive rehabilitation appeared to be effective only in improving the functional abilities of people with mild dementia. Cognitive rehabilitation appeared to be the most effective in improving caregivers’ outcomes, with results suggesting a reduction in care burden. The observed differences in the effectiveness of these interventions in people with different disease severity can be explained by the intrinsic characteristics of each intervention. Despite the large number of available studies, a high clinical, statistical, and methodological heterogeneity was observed. More methodologically rigorous studies are needed to clarify the effectiveness of each protocol and modality of intervention.
... QoL-AD. The Quality of Life in Alzheimer's Disease (QoL-AD) is a validated tool that can be completed by caregivers of PWD that seeks to determine the quality of life of the individual with dementia (QoL-AD; [27]). The QoL-AD utilizes 13 questions to examine demographic characteristics, cognitive and functional status, depressive symptoms, and participation in pleasant events. ...
Informal caregivers play a critical role in supporting individuals with dementia, yet often face significant challenges that impact their own quality of life (QoL). This exploratory study investigates the multifaceted factors contributing to caregiver QoL, particularly focusing on care recipient factors including dysphagia, dietary restriction, dementia severity, and care recipient QoL. A total of 24 informal caregivers of persons with dementia (PWD) participated in an online survey assessing various factors believed to play a role in caregiver QoL including dysphagia severity, dietary restrictiveness, cognitive impairment, and caregiver QoL. Results revealed that increased degree of dietary restrictiveness, lower dementia symptomatology, and higher care recipient QoL were significant predictors of improved caregiver QoL. These findings highlight the complex interplay of factors influencing caregiver QoL and underscore the need for tailored interventions to enhance well-being in both caregivers and care recipients within community-based care settings.
... The QoL-AD is a commonly used scale to assess the QoL in patients with dementia and has been applied in many countries, such as the United States, the United Kingdom, Japan, and China. This scale has a good reliability and validity [52][53][54]. A total of 13 QoL studies were included in this study. ...
Background
China has the largest number of dementia patients worldwide. The prolonged course of dementia has a serious negative impact on the economy and quality of life of patients and their families.
Objective
The purpose of this study was to conduct a systematic review and meta-analysis of the existing literature about economic burden and quality of life of people with dementia in China.
Methods
Six databases were systematically searched for observational studies of the economic burden or quality of life of dementia that were published before June 30, 2024. This review was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines.
Results
A total of 36,411 papers were identified, and 21 studies met the inclusion criteria. The annual economic burden of dementia was 20,893 RMB (3,104 USD). The total costs associated with mild, moderate, and severe dementia were 16,619 RMB (2,469 USD), 22,283 RMB (3,311 USD), and 34,611 RMB (5,143 USD), respectively, indicating that the cost increased significantly with increasing dementia severity. In terms of the quality of life, the combined total score for the Quality of Life-Alzheimer’s Disease scale was 30.11, with lower scores for the Housekeeping, Recreation, and Memory items.
Conclusions
Dementia imposes a significant economic and quality of life burden on Chinese patients. The government should pay more attention to dementia and develop a comprehensive prevention and treatment system to reduce the heavy burden of dementia.
Trial registration
This systematic review has the registration number CRD42022374470 on PROSPERO.
... Finally, the primary outcome for the assessment of neuropsychiatric symptoms (behavioural functioning) is the Neuropsychiatric Inventory (NPI) [17]. Secondary outcomes of interest include quality of life (QoL) measured by the Quality of Life-Alzheimer's Disease scale (QoL-AD) [18,19], and the EuroQol-5D (EQ-5D) [20], and safety indexes such as severe adverse events (SAE's), amyloid-related imaging abnormalities (ARIA), and death. We are also interested in changes in biomarkers (Cerebrospinal fluid (CSF) indications of beta-amyloid 42, beta-amyloid 40, soluble beta-amyloid precursor protein (sAPPß) total tau, and phospho-tau) therefore, changes in biomarkers will be included in our study as exploratory endpoints. ...
Accumulation of amyloid-beta (Aβ) in the brain has been explored as a primary cause of Alzheimer’s Disease (AD). Better known as the amyloid hypothesis, it has been the main target of researchers vying to bring their therapeutic interventions to market despite several failed attempts by predecessors. In June 2021, Aduhelm (Aducanumab) became the first U.S. Food and Drug Administration (FDA) approved treatment for AD based on the amyloid hypothesis in which sparked controversy. This meta-analysis aims to investigate the efficacy of amyloid-beta targeting interventions at all stages of the disease including the prodromal or mild cognitive impairment (MCI) stage compared to placebo. All completed and terminated Phase III trials are assessed to provide a comprehensive overview of interventions targeting amyloid-beta to inform the legitimacy of the amyloid hypothesis.
Background
Major knowledge and practice gaps exist in aged care home services to support independence of older people with dementia. This research evaluates an adaptation of a community‐based rehabilitation model for care homes, namely Interdisciplinary Care Home‐bAsed Reablement Program (I‐CHARP), by examining whether (and, if so, how) I‐CHARP produces its intended effects and how this programme can be practicably implemented, sustained and scaled up across care homes in Australia.
Methods
I‐CHARP is a 4‐month bio‐behavioural‐environmental rehabilitation model of care, integrated in care home services, supported through the deployment of an implementation strategy, the Research Enabled Aged Care Homes (REACH) network. It consists of (1) 8–12 full individual sessions and additional eight brief follow‐ups per resident, tailored to the resident's needs, delivered primarily by a team of an occupational therapist, registered nurse and other allied health staff; (2) environmental modifications/assistive devices up to the value of $400 per resident; and (3) engagement of intervention care home staff, managers and regular visitors. An overarching evaluation approach is participatory action research using a cluster quasi‐experimental design and mixed methods. It involves testing of the implementation strategy (REACH network and other approaches) while observing/gathering information on the intervention (I‐CHARP) and related outcomes in three cycles. Participants include residents (aged ≥ 60 years with early stages of dementia) and care staff from 16 care homes. Care quality indicators, health care costs, field notes and semi‐structured interviews/focus groups with intervention site staff, regular visitors and managers will provide further insights into I‐CHARP processes and implementation issues.
Discussion
In the final phase of the project, an Agile Implementation Playbook will be developed for the delivery of reablement care that can be used in routine practice across care homes in Australia. The study findings will also inform future policy development and strategic directions for dementia care in care homes.
Trial Registration: Australian New Zealand Clinical Trial Registry, ACTRN12623000885695 Registered 16 August 2023, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=386088.
Protocol version: 1.0 dated 20 July 2023
Objective
The effectiveness of the Cognitive Stimulation Therapy (CST) is well-documented. Nevertheless, the question of whether specific subgroups of individuals with dementia are more or less likely to benefit from this cognitive stimulation intervention remains unaddressed. Here, we directly compared the effectiveness of the Italian CST (CST-IT), delivered in a previous multicenter controlled clinical trial, across two distinct cohorts of individuals clinically diagnosed with Alzheimer's Disease (AD, N = 30) and vascular dementia (VaD, N = 27) in the mild-to-moderate stage.
Method
The impact of dementia subtype (AD vs VaD) on immediate (at intervention completion) benefits of CST-IT in general cognitive functioning, communicative abilities, mood, behavior and perceived quality of life was evaluated through linear mixed effects models. The frequency and severity of neuropsychiatric symptoms at baseline was inserted as a covariate due to the different behavioral profile in the two groups. Exploratory analyses also investigated the potential differential effect of dementia subtype on long-term benefits (three months after intervention).
Results
The CST-IT determined comparable immediate, clinically significant improvements in general cognition and communicative abilities. Dementia subtype influenced short-term benefits in depressive symptoms (with a greater decrease in AD patients) and quality of life (no significant impact in AD, and a small improvement in VaD). Such effects depended on diagnosis-related differences in neuropsychiatric symptoms. At long-term, benefits persisted in general cognition (though depending on the outcome considered). Improvements in narratives were seen in VaD, whereas communicative abilities in AD returned to baseline. Post-intervention gains in depressive symptoms persisted in AD, but not in VaD, although benefits in quality of life remained stable in the latter.
Conclusions
Different mechanisms of neuropsychological change after CST-IT were hypothesized for the different forms of dementia, particularly with respect to crucial outcomes such as language, mood and quality of life, with implications toward the delivery of such psychosocial intervention in clinical contexts.
Background:
Dementia and mild cognitive impairment are significant contributors to disability and dependency in older adults. Current treatments for managing these conditions are limited. Exergaming, a novel technology-driven intervention combining physical exercise with cognitive tasks, is a potential therapeutic approach.
Objectives:
To assess the effects of exergaming interventions on physical and cognitive outcomes, and activities of daily living, in people with dementia and mild cognitive impairment.
Search methods:
On 22 December 2023, we searched the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE (Ovid SP), Embase (Ovid SP), PsycINFO (Ovid SP), CINAHL (EBSCOhost), Web of Science Core Collection (Clarivate), LILACS (BIREME), ClinicalTrials.gov, and the WHO (World Health Organization) meta-register the International Clinical Trials Registry Portal.
Selection criteria:
We included randomised controlled trials (RCTs) that recruited individuals diagnosed with dementia or mild cognitive impairment (MCI). Exergaming interventions involved participants being engaged in physical activity of at least moderate intensity, and used immersive and non-immersive virtual reality (VR) technology and real-time interaction. We planned to classify comparators as inactive control group (e.g. no treatment, waiting list), active control group (e.g. standard treatment, non-specific active control), or alternative treatment (e.g. physical activity, computerised cognitive training). Outcomes were to be measured using validated instruments.
Data collection and analysis:
Two review authors independently selected studies for inclusion, extracted data, assessed the risk of bias using the Cochrane risk of bias tool RoB 2, and assessed the certainty of the evidence using GRADE. We consulted a third author if required. Where possible, we pooled outcome data using a fixed-effect or random-effects model. We expressed treatment effects as standardised mean differences (SMDs) for continuous outcomes and as risk ratios (RRs) for dichotomous outcomes, along with 95% confidence intervals (CIs). When data could not be pooled, we presented a narrative synthesis.
Main results:
We included 11 studies published between 2014 and 2023. Six of these studies were pre-registered. Seven studies involved 308 participants with mild cognitive impairment, and five studies included 228 individuals with dementia. One of the studies presented data for both MCI and dementia separately. Most comparisons exhibited a high risk or some concerns of bias. We have only low or very low certainty about all the results presented below. Effects of exergaming interventions for people with dementia Compared to a control group Exergaming may improve global cognitive functioning at the end of treatment, but the evidence is very uncertain (SMD 1.47, 95% 1.04 to 1.90; 2 studies, 113 participants). The evidence is very uncertain about the effects of exergaming at the end of treatment on global physical functioning (SMD -0.20, 95% -0.57 to 0.17; 2 studies, 113 participants) or activities of daily living (ADL) (SMD -0.28, 95% -0.65 to 0.09; 2 studies, 113 participants). The evidence is very uncertain about adverse effects due to the small sample size and no events. Findings are based on two studies (113 participants), but data could not be pooled; both studies reported no adverse reactions linked to the intervention or control group. Compared to an alternative treatment group At the end of treatment, the evidence is very uncertain about the effects of exergaming on global physical functioning (SMD 0.14, 95% -0.30 to 0.58; 2 studies, 85 participants) or global cognitive functioning (SMD 0.11, 95% -0.33 to 0.55; 2 studies, 85 participants). For ADL, only one study was available (n = 67), which provided low-certainty evidence of little to no difference between exergaming and exercise. The evidence is very uncertain about adverse effects of exergaming compared with alternative treatment (RR 7.50, 95% CI 0.41 to 136.52; 2 studies, 2/85 participants). Effects of exergaming interventions for people with mild cognitive impairment (MCI) Compared to a control group Exergaming may improve global cognitive functioning at the end of treatment for people with MCI, but the evidence is very uncertain, (SMD 0.79, 95% 0.05 to 1.53; 2 studies, 34 participants). The evidence is very uncertain about the effects of exergaming at the end of treatment on global physical functioning (SMD 0.27, 95% -0.41 to 0.94; 2 studies, 34 participants) and ADL (SMD 0.51, 95% -0.01 to 1.03; 2 studies, 60 participants). The evidence is very uncertain about the effects of exergaming on adverse effects due to a small sample size and no events (0/14 participants). Findings are based on one study. Compared to an alternative treatment group The evidence is very uncertain about global physical functioning at the end of treatment. Only one study was included (n = 45). For global cognitive functioning, we included four studies (n = 235 participants), but due to considerable heterogeneity (I² = 96%), we could not pool results. The evidence is very uncertain about the effects of exergaming on global cognitive functioning. No study evaluated ADL outcomes. The evidence is very uncertain about adverse effects of exergaming due to the small sample size and no events (n = 123 participants). Findings are based on one study.
Authors' conclusions:
Overall, the evidence is very uncertain about the effects of exergaming on global physical and cognitive functioning, and ADL. There may be an improvement in global cognitive functioning at the end of treatment for both people with dementia and people with MCI, but the evidence is very uncertain. The potential benefit is observed only when exergaming is compared with a control intervention (e.g. usual care, listening to music, health education), and not when compared with an alternative treatment with a specific effect, such as physical activity (e.g. standing and sitting exercises or cycling). The evidence is very uncertain about the effects of exergaming on adverse effects. All sessions took place in a controlled and supervised environment. Therefore, we do not know if exergaming can be safely used in a home environment, unsupervised.
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