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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)
... Consequently, most QOL assessment tools tend to rely on proxy reports rather than on patients' views. However, since QOL is best measured from a patient's perspective [9], such ratings may predominantly reflect the caregivers' perspective rather than of the patients, thus leading to misinterpretation of the actual QOL [10][11][12][13]. Therefore, especially in today's context where greater emphasis is placed on 'patient-centered care', patients' own perceptions of the QOL are also expected to play an equally important role at least in mild to moderate dementia [14]. ...
... With regards to the caregiver perspective on QOL, the mean score obtained was 70.56 (SD = 12.28), which was a poorer rating than that of patients with dementia (p<0.001). Observing this type of significant difference in scores between the patient and caregiver is in line with some previous studies [10,13]. Higher patient-reported mean QOL scores were reported compared to proxy-reported scores using QOL-AD in a study done in Norway (mean difference = 5.2; p<0.001) [4] and in another done in Switzerland among patients with Alzheimer's disease (mean difference = 4.3; p<0.001) [20]. ...
Dementia has become a public health priority along with population ageing worldwide. Owing to its chronic progressive nature in the absence of a cure, maintaining the best possible quality of life (QOL) has become the desired outcome for people with dementia. The aim of this study was to compare the Quality of Life (QOL) of patients with dementia in Sri Lanka when assessed based on the patient's and caregiver's perspectives. A cross-sectional study was conducted among 272 pairs of patients with dementia and their primary caregivers recruited systematically from the psychiatry outpatient clinics of tertiary care state hospitals in the district of Colombo, Sri Lanka. The QOL was assessed using the 28-item DEMQOL among patients and the 31-item DEMQOL-proxy among primary caregivers. The total QOL ratings and subscale scores obtained by patients and caregivers were compared and assessed for the significance of the mean scores using the independent t-test and of the mean difference in ratings using the Wilcoxon test. Agreement between patients and their caregivers on the ratings for QOL was also assessed using the Bland Altman plot. The mean overall QOL score according to patient ratings (mean = 79.7; SD = 12.0) was significantly higher than the caregiver ratings (mean = 70.6; SD = 12.3) (p< 0.001). Mean scores for the four subscales (positive emotion, negative emotion, memory, and daily life) were also significantly higher according to the patient's ratings (p<0.001). Total scores obtained by patients and their caregivers showed a positive and significant correlation (r = 0.385; p<0.001). Bland Altman plot demonstrated acceptable agreement between their ratings. The study confirms the ability of dementia patients with mild to moderate severity to successfully rate their own QOL. Furthermore, the caregiver's ratings cannot be substituted for the patient's ratings and vice versa.
... anxiety at post intervention compared to baseline as measured by the RAID(Shankar et al., 1999), a validated scale with superior psychometric properties in dementia compared to other anxiety rating scales(Goodarzi et al., 2019); used in past anxiety clinical trials(Tay et al., 2019). Score ranging between 0 Change in quality of life from baseline as measured by the Quality of Life in Alzheimer's Disease (QoL-AD)(Logsdon et al., 1999). Score ranging between 0 to 52 (higher score indicates better outcomes).Components of anxiety 2. Change in anxiety from baseline as measured by the GAI(Pachana et al., 2007). ...
... weeks, participants will also complete an assessment interview via video-conferencing. This includes administration of the RAID(Shankar et al., 1999), and the QoL-AD(Logsdon et al., 1999).Post-assessments: Both the self-report questionnaires and measures administered by a trained assessor during the clinical interview are part of the post-assessments at timepoints 2 (week 8), 3 (week 20) and 4 (week 32).Process evaluation: The process evaluation will use mixed methods to understand the processes and conditions which may in uence program effectiveness as recommended in the Medical Research Council's Process Evaluation guidance(Moore et al., 2015), and to help develop a roadmap for future implementation. ...
• Background
Anxiety is commonly experienced by people living with mild cognitive impairment (MCI) and dementia. Whilst there is strong evidence for late-life anxiety treatment using Cognitive Behavioural Therapy (CBT) and delivery via telehealth, there is little evidence for the remote delivery of psychological treatment for anxiety in people living with MCI and dementia. This paper reports the protocol for the Tech-CBT study which aims to investigate the efficacy, cost-effectiveness, usability and acceptability of a technology-assisted and remotely delivered CBT intervention to enhance delivery of anxiety treatment for people living with MCI and dementia of any aetiology.
• Methods
A hybrid II single-blind, parallel-group randomised trial of a Tech-CBT intervention (n = 35) versus usual care (n = 35), with in-built mixed methods process and economic evaluations to inform future scale-up and implementation into clinical practice. The intervention (i) consists of six weekly sessions delivered by postgraduate psychology trainees via telehealth video-conferencing, (ii) incorporates voice assistant app technology for home-based practice, and (iii) utilises a purpose-built digital platform, My Anxiety Care. The primary outcome is change in anxiety as measured by the Rating Anxiety in Dementia scale. Secondary outcomes include change in quality of life and depression, and outcomes for carers. The process evaluation will be guided by evaluation frameworks. Qualitative interviews will be conducted with a purposive sample of participants (n = 10) and carers (n = 10), to evaluate acceptability and feasibility, as well as factors influencing participation and adherence. Interviews will also be conducted with therapists (n = 18) and wider stakeholders (n = 18), to explore contextual factors and barriers/facilitators to future implementation and scalability. A cost-utility analysis will be undertaken to determine the cost-effectiveness of Tech-CBT compared to usual care.
• Discussion
This is the first trial to evaluate a novel technology-assisted CBT intervention to reduce anxiety in people living with MCI and dementia. Other potential benefits include improved quality of life for people with cognitive impairment and their care partners, improved access to psychological treatment regardless of geographical location, and upskilling of the psychological workforce in anxiety treatment for people living with MCI and dementia.
Trial registration:
This trial has been prospectively registered with ClinicalTrials.gov: NCT05528302 [September 2, 2022].
... Quality of Life-Alzheimer's Disease scale [QoL-AD; (39)]. This consists of 13 items assessing subjective components of quality of life (e.g., perceived quality of life and psychological wellbeing), and objective components (e.g., behavioral competence and environment), rated by caregivers on a 4-point scale from 1 (poor) to 4 (excellent). ...
Introduction
Exposure to nature is known to support psychological wellbeing, and can support People with Dementia (PwD). Here we describe a case study conducted at a care facility for PwD to examine the effect of their exposure to nature after intervention to renovate an existing Therapeutic Garden (TG). Changes in frequency of attendance and behavior in the TG were examined. A single case was also considered to assess individual benefits.
Materials and methods
Twenty-one PwD participated in the study. Their behavior in the TG was observed for 4 weeks before and after the intervention (using behavioral mapping), and measures of individual characteristics (general cognitive functioning, behavioral/neuropsychiatric symptoms, depression, and quality of life) were administered.
Results
Ten of the 21 PwD visited the TG more often after the intervention, their social behaviors (e.g., talking to others) increased, and their active isolated behavior in the garden (e.g., smelling, touching flowers) tended to increase. The increase in social behavior related to less severe baseline depressive symptoms. Passive isolated behaviors related to more impaired baseline cognitive functioning. The case of Mrs. A extended the findings for the whole sample: although her dementia symptoms (apathy, motor disturbances) worsened, she visited the TG more often after the intervention, her social exchanges and active isolated actions increased, and her agitation and wandering decreased.
Discussion
These results support the benefits of exposure to nature for PwD, and underscore the importance of considering users’ profiles to optimize their use of a TG.
... All raw test scores were adjusted for age, educational level, and sex. Activities of daily living (ADL), instrumental activities of daily living (IADL), and quality of life in Alzheimer's disease (QoL-AD) [28] were also assessed. The 24-week change in the MMSE score was the primary outcome, whereas the 24-week change in the remaining assessment scores was the secondary outcome. ...
Non-pharmacological approaches, including exercise programs, have been proposed to improve cognitive function and behavioral symptoms, such as depression, agitation, or aggression, in the management of patients with Alzheimer's disease (AD). Indeed, physical inactivity is one of the main modifiable risk factors in patients with AD, as well as in the development of cardiovascular diseases and related pathologies.Although Nordic Walking (NW), a particular type of aerobic exercise, is known to benefit the health of aging populations, there is little evidence that patients with AD may benefit from this non-pharmacological treatment. In this context, we performed a pilot study in 30 patients with mild/moderate AD to evaluate whether NW influences different cognitive domains, including executive functions, visual-spatial abilities, and verbal episodic memory. To this aim, 15 patients (Control group, CG) underwent reality orientation therapy, music therapy, motor, proprioceptive and postural rehabilitation, and 15 patients (experimental group, EG) in addition to the activities performed by the CG also had the NW with a frequency of twice a week. Neuropsychological assessments and evaluations of daily activities and quality of life were performed at baseline and after 24 weeks. Twenty-two patients, including 13 in the CG and nine in the EG completed the activity program after 24 weeks. The EG showed a significant improvement in the Frontal Assessment Battery, Rey's auditory Verbal Learning Test Delayed Recall, Raven's Colored Progressive Matrices, and completion time for the Stroop Word-Color Interference test, compared to the CG. NW was able to improve cognitive domains like visual-spatial reasoning abilities, verbal episodic memory, selective attention, and processing speed in AD patients. These results, if confirmed by further studies with a larger number of patients and a longer training period, may prospect NW as a safe and likely useful strategy to slow down cognitive impairment in mild/moderate AD.
... Ορισμένα εκ των οποίων είναι: 1) το Quality of Life in Alzheimer Disease scale (QoL-AD). Το QoL-AD περιλαμβάνει 13 διαστάσεις (σωματική υγεία, ενέργεια, διάθεση, κατάσταση ζωής, μνήμη, οικογένεια, γάμος, φίλοι, ικανότητα για δραστηριότητες, διασκέδαση, χρήματα, προσωπική και συνολική αίσθηση ζωής) και αναφέρεται τόσο σε ασθενείς όσο και φροντιστές (Logsdon et al, 1999). To QoL-AD θεωρείται το πιο διαδεδομένο εργαλείο μέτρησης ποιότητας ζωής για φροντιστές ασθενών με ΝΑ, 2) Beck Depression Inventory (BDI) (Logsdon & Teri, 1995) το οποίο πολογίζει τα επίπεδα κατάθλιψης φροντιστών, 3) Caregiver Burden Inventory (CBI) (Marvadi et al, 2005), 4) Zarit Burden Inventory (ZBI) (Schreiner et al, 2006) και 5) World Health Organization-Quality of Life-26 (WHO-QOL26) (Takahashi et al, 2005). ...
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
Introduction
The prevalence of dementia is almost five times higher in people with intellectual disabilities compared with the general population. However, evidence-based treatments for this population are lacking, as most randomised controlled trials for dementia interventions have not included people with intellectual disabilities. Cognitive stimulation therapy (CST) has a robust evidence base in the general dementia population, consistently showing benefits to cognition, quality of life and being cost-effective. We are conducting a mixed-methods feasibility trial of group CST for people with intellectual disabilities and dementia, to determine if a future definitive randomised controlled trial is feasible.
Methods and analysis
Fifty individuals with intellectual disabilities and dementia will be randomised to either the intervention arm (14 sessions of group CST plus treatment as usual) or the control arm (treatment as usual). Randomisation will occur after informed consent has been obtained and baseline assessments completed. Each arm will have 25 participants, with the intervention arm divided into five or more CST groups with three to five participants in each. The outcomes will be feasibility of recruitment, acceptability and adherence of the intervention, suitability of study outcome measures and feasibility of collecting resource use data. Quantitative and qualitative approaches, including semistructured interviews with group participants, carers and group facilitators, will be employed to assess these outcomes.
Ethics and dissemination
This study has been approved by Essex REC (Ref: 21/EE/027) and the HRA ethical approval process through the Integrated Research Application System (IRAS ID: 306 756). We plan to publish the results in peer-reviewed journals and conferences as well as provide feedback to funders, sponsors and study participants.
Trial registration number
ISRCTN88614460 .
Objectives:
Speech, language and communication difficulties are prevalent in all dementia subtypes and are likely to considerably impact the quality-of-life of people with dementia and their families. Communication interventions provided by trained professionals are recommended for this population, but little is known about their quality-of-life outcomes. This review aims to explore the quality-of-life outcomes of communication-related interventions for people with dementia and their families.
Methods:
Seven databases were systematically searched. Reference lists from included studies and relevant systematic reviews were also hand-searched. Primary research with quantitative quality-of-life outcomes were included. Narrative analysis was utilised to identify key intervention features and to describe quality-of-life outcomes.
Results:
1,174 studies were identified. Twelve studies were eligible for inclusion. Studies were heterogeneous in location, participant group, methodologies, interventions and outcome measures. Four studies reported increased quality-of-life for people with dementia following intervention. No studies reported increased quality-of-life for family members.
Conclusion:
Further research is needed in this area. The studies which reported improved quality-of-life involved multi-disciplinary approaches to intervention, involvement of family caregivers, and functional communication intervention. However, data is limited so results should be interpreted with caution. The standardised use of a communication-focused quality-of-life outcome measure would improve sensitivity and comparability of future studies.
Objectives:
Cognitive stimulation therapy (CST) is an evidence-based intervention for dementia. This program evaluation examined the outcomes of a modified CST program in a veteran sample.
Methods:
Twenty-five veterans who participated in a once-weekly, 7-week CST program and completed pre/post-group assessments were selected for inclusion in this chart review study. In this diverse sample (Mage = 74.40; 44% White, 44% Hispanic/Latinx, 8% Black, 4% multiracial), most had a suspected neurodegenerative etiology. Paired-samples t-test examined QoL and cognitive pre/post-intervention scores.
Results:
Statistically significant improvements were observed in RBANS total index scores (Cohen's d = 0.46). Although there was not a statistically significant change in MoCA scores or patient QoL-AD ratings, there were small effects in the predicted direction (Cohen's d = 0.29 and 0.30, respectively). There was no significant change or effect on caregiver QoL-AD ratings (Cohen's d = .09).
Conclusions:
A modified, once-weekly 7-week CST program for veterans was feasible and demonstrated positive outcomes. Improvements were observed in global cognition and there was a small, positive effect on patient-rated QoL. Given that dementia is often progressive, stability of cognition and QoL are suggestive of the protective effects of CST.
Clinical implications:
CST is feasible and beneficial as a once-weekly brief group intervention for veterans with cognitive impairment.
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