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Quality of Life in Alzheimer’s disease: Patient and Caregiver Reports

January 1999
Journal of Mental Health and Aging 5(1):21-32

Authors:

Laura E Gibbons

University of Washington Seattle

Susan M Mccurry

University of Washington Seattle

Linda Teri

University of Washington Seattle

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)

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Effectiveness of an Individualized Exergame-Based Motor-Cognitive Training Concept Targeted to Improve Cognitive Functioning in Older Adults With Mild Neurocognitive Disorder: Study Protocol for a Randomized Controlled Trial

Article

Full-text available

Feb 2023

Background: Simultaneous motor-cognitive training is considered promising for preventing the decline in cognitive functioning in older adults with mild neurocognitive disorder (mNCD) and can be highly motivating when applied in the form of exergaming. The literature points to opportunities for improvement in the application of exergames in individuals with mNCD by developing novel exergames and exergame-based training concepts that are specifically tailored to patients with mNCD and ensuring the implementation of effective training components. Objective: This study systematically explores the effectiveness of a newly developed exergame-based motor-cognitive training concept (called “Brain-IT”) targeted to improve cognitive functioning in older adults with mNCD. Methods: A 2-arm, parallel-group, single-blinded randomized controlled trial with a 1:1 allocation ratio (ie, intervention: control), including 34 to 40 older adults with mNCD will be conducted between May 2022 and December 2023. The control group will proceed with the usual care provided by the (memory) clinics where the patients are recruited. The intervention group will perform a 12-week training intervention according to the “Brain-IT” training concept, in addition to usual care. Global cognitive functioning will be assessed as the primary outcome. As secondary outcomes, domain-specific cognitive functioning, brain structure and function, spatiotemporal parameters of gait, instrumental activities of daily living, psychosocial factors, and resting cardiac vagal modulation will be assessed. Pre- and postintervention measurements will take place within 2 weeks before starting and after completing the intervention. A 2-way analysis of covariance or the Quade nonparametric analysis of covariance will be computed for all primary and secondary outcomes, with the premeasurement value as a covariate for the predicting group factor and the postmeasurement value as the outcome variable. To determine whether the effects are substantive, partial eta-squared (η2p) effect sizes will be calculated for all primary and secondary outcomes. Results: Upon the initial submission of this study protocol, 13 patients were contacted by the study team. Four patients were included in the study, 2 were excluded because they were not eligible, and 7 were being informed about the study in detail. Of the 4 included patients, 2 already completed all premeasurements and were in week 2 of the intervention period. Data collection is expected to be completed by December 2023. A manuscript of the results will be submitted for publication in a peer-reviewed open-access journal in 2024. Conclusions: This study contributes to the evidence base in the highly relevant area of preventing disability because of cognitive impairment, which has been declared a public health priority by the World Health Organization. Trial Registration: ClinicalTrials.gov NCT05387057; https://clinicaltrials.gov/ct2/show/NCT05387057

Measuring hope and resilience in carers of people living with dementia: The positive psychology outcome measure for carers (PPOM-C)

Article

Mar 2023
Dementia

Objectives: Positive psychology outcome measures aim to quantitatively document the character strengths that people use to maintain their wellbeing. Positive aspects of caregiving including the use of character strengths is gaining credence in dementia carer literature but there remain few psychometrically robust tools by which to capture this. The current study evaluated the psychometric properties of a newly developed measure of hope and resilience for family carers of people living with dementia. Methods: An online study where family carers (n = 267) completed the newly adapted Positive Psychology Outcome Measure - Carer version (PPOM-C), the Hospital Anxiety and Depression Scale - Depression subscale (HADS-D), The Short Form Health Survey (SF-12), and The Multidimensional Scale of Perceived Social Support (MSPSS). Results: Psychometric analysis indicated strong properties for the PPOM-C in family carers, with two items dropped to improve the internal consistency. Convergent validity was established, with strong correlations between the hope, resilience, depression symptomology, quality of life and social support. A Confirmatory Factor Analysis indicated acceptable model fit. Discussion: The PPOM-C is a psychometrically robust tool that can be recommended for use in large scale psychosocial research. The use of this measure in research and practice will provide a more nuanced understanding of the caregiving role and how to support wellbeing in this population.

A Preliminary Psychometric Case Study of the Music in Dementia Assessment Scales: European Portuguese Version (Midas-PT)

Article

Full-text available

Jan 2023

Introduction: Music in Dementia Assessment Scales (MiDAS) is a standardized outcome measure aiming to capture the effects of music-based interventions in patients with dementia. It is a unique instrument regarding its specificity, with the potential to enhance research in the field of music in dementia care. The aim of this study was to report a preliminary psychometric study of the translated and adapted instrument to European Portuguese (MiDAS-PT). Material and methods: Care home residents with dementia attended bi-weekly group music-based interventions, for five weeks. Intervention coordinators and care home staff completed MiDAS ratings at every session and the Quality-of-Life Scale (QoL-AD) at three time-points. Inter-rater reliability, test-retest reliability, internal consistency, concurrent validity (QoL-AD) and construct validity were evaluated. Results: A total of 529 forms were completed (staff = 235, therapist = 294). Low therapist inter-rater and test-retest reliability, good internal consistency, low concurrent validity, and good construct validity were found. There were high factor loadings between the five MiDAS items (Interest, Response, Initiation, Involvement, and Enjoyment). Conclusion: This preliminary investigation indicated acceptable psychometric properties on a range of attributes, but more research is needed in order to definitely establish the psychometric value of the scale.

The difference of the quality of life between formal/professional and informal/nonprofessional caregivers to patients with Alzheimer’s disease

Article

Jun 2022

Introduction: Patients with Alzheimer display a combination of cognitive, behavioral and functional symptoms. These symptoms are individual and depends on the disease from the disease stage. Managing these symptoms imposes significant burden on both patients and caregivers. Aim of the study: The primary aim of this study is to explore the difference of the quality of life between formal/professional and informal/non-professional caregivers to patients with Alzheimer’s disease. Methodology: A review study of literature of research and review studies related to quality of life, depression, burden inventory of formal/professional and informal/nonprofessional caregivers to patients with Alzheimer’s disease. Results: The quality of life of formal/professional caregivers is mainly affected by the physical fatigue that they feel and the decreasing of cognitive and functional status that patients with Alzheimer’s disease display while, informal/non-professional caregivers affected by the sentimental and economic burden that they accept. Conclusions: Identifying all the variables that affect negatively the quality of life, especially for the informal/ non-professional caregivers, can be obtain all the appropriate measures for minimize the burden, in order to improve caregiver’s quality of life and the quality of care that patients with Alzheimer’s disease receive as well

The Effects of Essential Oil Massage on Patients Affected by Alzheimer's Disease: An Observational Study

Article

Full-text available

Jan 2023

Background: Alzheimer's Disease (AD) is the most widespread form of dementia. The present study analyses the effects of aromatherapy using Melissa Officinalis essential oil, applied by massage to the hands and forearms of patients suffering from Alzheimer's disease. and to evaluate the effect on their perceived overall quality of life.Methods:Aprospective observational study was conducted in two nursing homes in Italy in 2018. Data were collected through individual qualitative structured interviews based on the Quality of Life in Alzheimer's Disease (QoL-AD) questionnaire and the Mini Mental State Examination (MMSE). The authors referred to STROBE guidelines for quality reporting of observational studies.Results:Treatment with Melissa thOfficinalis showed positive effects on all patients after the 12week of treatment. The results were most evident in patients in class 3 MMSE. However, class 4 MMSE patients also benefited from the treatment. Conclusion:The aromatherapy treatment delivered in this observational study, using Melissa Officinalis essential oil applied to hands and forearms, showed an improvement in the quality of life of the patients living in two different nursing homes. Due to the small sample size in this study, it is suggested that more research be done on the effects and effectiveness of aromatherapy with Melissa Officinalis essential oil for Alzheimer's disease patients.

Observations on strategies used by people with dementia to manage being assessed using validated measures: A pilot qualitative video analysis

Article

Full-text available

Feb 2023
HEALTH EXPECT

Background: Analysis of video data was conducted of validated assessments with people with dementia as part of a feasibility control study comparing a lifelong learning service with other dementia services. Objective: The aim was to provide a new perspective on what occurs during the assessment process when using validated measures in research and explore which strategies people with dementia use to manage their participation. Design: Video recordings were made of pre- and postintervention assessments of people with dementia. An initial pilot analysis of 10 videos of the pre-assessments was conducted. Setting: Lifelong learning services and other dementia services situated in six municipalities in Northern Denmark took part in this study, with 55 people with dementia participating. Results: The themes identified were: 'State of mind' and 'Mental resources', showing how these aspects influenced the participants' reactions and the strategies they used. Discussion: The results are discussed in relation to how individual personality traits influence the assessment process and the way a person with dementia will manage the situation. Conclusion: The assessment situation is complex and can be influenced by the strategies adopted by individuals with dementia as they try to manage the assessment process. Patient or public contribution: People with dementia supported the decision-making for the choice of validated measure used within this study.

The impact of different researchers to capture quality of life measures in a dementia randomised controlled trial

Article

Full-text available

Jan 2023
TRIALS

Background Capturing changes in health and wellbeing within randomised controlled trials (RCTs) can be complex. The precision and accuracy of outcome scales to measure change is crucial, and therefore, consideration needs to be given to potential measurement errors when collecting these outcomes. Many RCTs use multiple researchers to collect data, which has the potential to introduce variation in measurements. This study aimed to identify if there was a measurable effect of using different researchers to collect repeated assessments of quality of life (QoL) at different time points. Methods A previously conducted study assessing the impact of reminiscence therapy on participants with dementia and carer (PwD-carer) dyads, ‘REMCARE’ (Reminiscence groups for people with dementia and their family caregivers), provided the platform for this exploratory secondary analysis. Data was categorised into two broad groups: those where the same researcher attended all assessments and those where different researchers undertook the assessments. ANCOVA (analysis of covariance) models used in the original REMCARE analysis with the addition of the ‘researcher-continuity’ variable were run on two QoL measures, the QoL-AD (Quality of Life in Alzheimer’s Disease) and QCPR (Quality of the Caregiving Relationship). Results Three hundred thirty PwD-carer dyads were included in the analysis. For the PwD, a statistically significant effect was found on the researcher continuity variable for the QoL-AD and QCPR outcome measures at follow-up 1 but not at follow-up 2 signifying an impact of researcher attendance at the first follow-up but not follow-up 2. For the carer data, analyses revealed no statistically significant effects at follow-up 1; however, the QoL-AD measure at follow-up 2 was found to be statistically significant. Conclusions These exploratory results indicate the possible impact of researcher continuity on QoL outcomes in dementia studies. Further research is required to explore this further and establish causality. If demonstrated, this would have implications for the planning of future empirical studies in dementia, in order to reduce this potential source of bias.

Personally tailored activities for improving psychosocial outcomes for people with dementia in long‐term care

Article

Mar 2023
COCHRANE DB SYST REV

Background People with dementia who are being cared for in long‐term care settings are often not engaged in meaningful activities. We wanted to know whether offering them activities which are tailored to their individual interests and preferences could improve their quality of life and reduce agitation. This review updates our earlier review published in 2018. Objectives ∙ To assess the effects of personally tailored activities on psychosocial outcomes for people with dementia living in long‐term care facilities. ∙ To describe the components of the interventions. ∙ To describe conditions which enhance the effectiveness of personally tailored activities in this setting. Search methods We searched the Cochrane Dementia and Cognitive Improvement Group’s Specialized Register, on 15 June 2022. We also performed additional searches in MEDLINE, Embase, PsycINFO, CINAHL, Web of Science, ClinicalTrials.gov, and the World Health Organization (WHO) ICTRP, to ensure that the search for the review was as up‐to‐date and as comprehensive as possible. Selection criteria We included randomised controlled trials (RCTs) and controlled clinical trials offering personally tailored activities. All interventions included an assessment of the participants' present or past preferences for, or interest in, particular activities as a basis for an individual activity plan. Control groups received either usual care or an active control intervention. Data collection and analysis Two authors independently selected studies for inclusion, extracted data and assessed the risk of bias of included studies. Our primary efficacy outcomes were agitation and participant quality of life. Where possible, we pooled data across studies using a random effects model. Main results We identified three new studies, and therefore included 11 studies with 1071 participants in this review update. The mean age of participants was 78 to 88 years and most had moderate or severe dementia. Ten studies were RCTs (three studies randomised clusters to the study groups, six studies randomised individual participants, and one study randomised matched pairs of participants) and one study was a non‐randomised clinical trial. Five studies included a control group receiving usual care, five studies an active control group (activities which were not personally tailored) and one study included both types of control group. The duration of follow‐up ranged from 10 days to nine months. In nine studies personally tailored activities were delivered directly to the participants. In one study nursing staff, and in another study family members, were trained to deliver the activities. The selection of activities was based on different theoretical models, but the activities delivered did not vary substantially. We judged the risk of selection bias to be high in five studies, the risk of performance bias to be high in five studies and the risk of detection bias to be high in four studies. We found low‐certainty evidence that personally tailored activities may slightly reduce agitation (standardised mean difference −0.26, 95% CI −0.53 to 0.01; I² = 50%; 7 studies, 485 participants). We also found low‐certainty evidence from one study that was not included in the meta‐analysis, indicating that personally tailored activities may make little or no difference to general restlessness, aggression, uncooperative behaviour, very negative and negative verbal behaviour (180 participants). Two studies investigated quality of life by proxy‐rating. We found low‐certainty evidence that personally tailored activities may result in little to no difference in quality of life in comparison with usual care or an active control group (MD ‐0.83, 95% CI ‐3.97 to 2.30; I² = 51%; 2 studies, 177 participants). Self‐rated quality of life was only available for a small number of participants from one study, and there was little or no difference between personally tailored activities and usual care on this outcome (MD 0.26, 95% CI −3.04 to 3.56; 42 participants; low‐certainty evidence). Two studies assessed adverse effects, but no adverse effects were observed. We are very uncertain about the effects of personally tailored activities on mood and positive affect. For negative affect we found moderate‐certainty evidence that there is probably little to no effect of personally tailored activities compared to usual care or activities which are not personalised (standardised mean difference ‐0.02, 95% CI −0.19 to 0.14; 6 studies, 632 participants). We were not able to undertake meta‐analyses for engagement and sleep‐related outcomes, and we are very uncertain whether personally tailored activities have any effect on these outcomes. Two studies that investigated the duration of the effects of personally tailored activities indicated that the intervention effects they found persisted only during the period of delivery of the activities. Authors' conclusions Offering personally tailored activities to people with dementia in long‐term care may slightly reduce agitation. Personally tailored activities may result in little to no difference in quality of life rated by proxies, but we acknowledge concerns about the validity of proxy ratings of quality of life in severe dementia. Personally tailored activities probably have little or no effect on negative affect, and we are uncertain whether they have any effect on positive affect or mood. There was no evidence that interventions were more likely to be effective if based on one theoretical model rather than another. We included three new studies in this updated review, but two studies were pilot trials and included only a small number of participants. Certainty of evidence was predominately very low or low due to several methodological limitations of and inconsistencies between the included studies. Evidence is still limited, and we remain unable to describe optimal activity programmes. Further research should focus on methods for selecting appropriate and meaningful activities for people in different stages of dementia.

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