Introduction: Asset based approaches to dementia research and measurement emphasise the need to also assess the strengths and capabilities that people with dementia retain, rather than assessing only ...losses or deficits. The CASP-19 proposes wellbeing as the satisfaction of four 'needs' (control, autonomy, self-realisation and pleasure). The CASP-19 may reflect the asses-based approach and has been validated in over 20 countries. The aim of this study was to evaluate the CASP-19's psychometric properties in older adults with dementia.
Methods: An observational study was conducted at five NHS trusts across England. Participants were asked to either complete the CASP-19 by interview or self-report, alongside four other measures to assess psychometric properties.
Results: Internal consistency overall was good (α = .856) but the autonomy subscale fell below the acceptable. The CASP-19 was significantly correlated in the expected direction with measures of quality of life (r = .707), depression (r = −.707) and additional measures. It also remained moderately stable over a one-week period but factor analyses indicated a 12-item measure may be more robust.
Conclusions: Despite some variations, the CASP-19 appears to have adequate psychometric properties for older adults with dementia and can be used in future research and practice.
Despite wide uptake in high-income countries (HICs), less is known about the effectiveness and implementation of psychological, social and cognitive interventions in low- and middle-income countries ...(LMICs). Despite this, such interventions are increasingly used. The aim of this review was to appraise the effectiveness and implementation readiness of psychosocial interventions for people with dementia in LMICs.
A systematic search of databases from 1998-2019. Studies were rated on two scales assessing quality and implementation readiness.
Seventeen articles describing 11 interventions in six countries were evaluated. Interventions included Cognitive Stimulation Therapy (CST), a Multidisciplinary Cognitive Rehabilitation Programme (MCRP), singing interventions, occupational therapy and reminiscence therapy. The quality of included studies was variable, and many had low sample sizes. Evidence for improving both cognition and quality of life was found in two interventions: Cognitive Stimulation Therapy (CST) and a Multidisciplinary Cognitive Rehabilitation Programme (MCRP). Implementation issues were more likely to be explored in studies of Cognitive Stimulation Therapy (CST) than in any other intervention.
Of the included studies here, CST appears to be the most implementation ready, improving both cognition and quality of life with implementation readiness effectively explored in two LMIC countries: India and Tanzania.
•The PPOM measures hope and resilience for people with dementia.•The first measure of its kind developed for people with dementia.•Excellent psychometric properties and acceptable factor ...structure.•Significantly correlated with both quality of life and depression.•Responsiveness/sensitivity of the PPOM is yet to be established.
To conduct an in-depth psychometric assessment of the PPOM; a measure of hope and resilience.
An observational study at five NHS trusts across England. Participants either completed the study using self-complete or interview led procedures, depending on their preference. Assessments were internal consistency, floor and ceiling effects, test-retest reliability, convergent validity and factor structure.
225 participants were recruited and completed the study, with a subsample of 48 comprising the test-retest sample. Internal consistency was excellent α = 0.94, and significant correlations were observed between quality of life (r = 0.627, p < .001), depression (r = −0.699, p < .001) and the Control, Autonomy, Self-realisation and Pleasure Scale (CASP-19; r = 0.73, p < .001). The PPOM remained moderately stable over a one week period (ICC: 880) and factor analyses indicated a two-factor structure solution with acceptable fit indices.
The PPOM has robust psychometric properties and is now suitable for use research and practice. People who met the clinical criteria for depression were more likely to have lower scores on the PPOM, indicating criterion validity. Future work is needed to establish the PPOM as sensitive to change and to investigate the relationship between hope, resilience and depression further.
Objectives: Cognitive stimulation therapy (CST) is a brief, non-pharmacological intervention for people with dementia, with an established evidence base for improving cognition and quality of life. ...It is widely implemented in National Health Service (NHS) settings, but little is known about its naturalistic use. The aim of this survey was to identify and explore inclusion criteria, dose and quality of CST across services in Great Britain (England, Scotland and Wales).Methods: All NHS memory clinics and services for people with dementia were contacted and asked to complete a mixed methods online survey on CST delivery in their service. Questions were centred on who provided CST, who received CST, the dose of CST and any outcomes that were routinely measured.Results: A total of 57/186 services responded, giving a response rate of 30.7%. While the majority reported offering CST (87.7%), there was variability in how this was delivered. Differing inclusion criteria included the use of varying cognitive and behavioural outcome measures, and CST was reported as being offered once and twice weekly. Services also differed in how they evaluated the quality of CST and how this evidence was incorporated for future sessions.Conclusion: While there was a low response rate, this survey indicates that there is significant variability in how CST is used in clinical practice, with many trusts not adhering to the evidence base. To ensure that people with dementia are consistently offered evidence-based, high-quality CST across NHS settings, further standardisation of inclusion criteria, dose and outcomes is needed.
Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of ...caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.
A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.
Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.
There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.
The Multidimensional Scale of Perceived Social Support (MSPSS) is a measure of perceived adequacy of social support. Whilst this is an important area of research for family caregivers of people with ...dementia, it is not clear whether the MSPSS retains its psychometric properties when used with this population. The aim was to conduct an in-depth psychometric analysis of the MSPSS to ensure that it remains a psychometrically robust measure for this population.
Participants completed measures online using a self-complete procedure. A subsample completed the MSPSS twice, within a 4-week period. Properties assessed were internal consistency, floor and ceiling effects, test-retest reliability, convergent validity and factor structure.
270 participants completed the study and 58 comprised the test-retest sample. Internal consistency was excellent for the total score (α = 0.92) and three subscales (α = 0.92-0.94). Significant correlations were observed in the expected directions with depression (r = −.48, p < .001) and mental (r = 0.32, p<.001) and physical (r = 0.17, p=.003) health-related quality of life. Test re-test reliability was excellent for the total score (ICC = 0.90 95%CI = 0.84, 0.94) and subscale scores (ICC = 0.84-0.89). Confirmatory factor analysis indicated acceptable fit indices for the three-factor solution.
The MSPSS has robust psychometric properties when used with caregivers of people with dementia and may be recommended for use with this population. Further research is required to establish responsiveness and determine cross-cultural validity.
A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of ...robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change.
A 4-step sequential design of identifying, selecting, adapting and testing psychometric measures as follows: 1) identification of stigma outcome measures through reviewing anti-stigma intervention literature, 2) selection of candidate measures through quality assessment (Terwee criteria) and expert consultation, 3) adaptation for UK dementia population (Stewart and colleagues Modification Framework) 4) testing of adapted measures in people living with dementia (N=40) to establish acceptability and preliminary reproducibility (test retest), criterion (concurrent with SIS) and construct (negative convergence with Rosenberg self-esteem scale) validity.
Seven measures were identified from the review, but most were poor quality (Terwee range: 0-4). Three measures were selected for modification: Stigma Stress Scale; Secrecy subscale of the Stigma Coping Orientation Scale; Disclosure Related Distress Scale. Internal consistency and test-retest reliability were acceptable (.866≤α≤ .938; ICC .721-.774), except for the Stigma Stress Scale (α= .643) for which the component subscales (perceived harm, ability to cope) had stronger psychometric properties. Concurrent validity with the SIS was not established (r<.7) although there were significant correlations between total SIS and perceived harm (r=.587) and between internalized shame and secrecy (r=.488). Relationships with self-esteem were in the hypothesized direction for all scales and subscales indicating convergent validity.
Stigma scales from mental health are not readily adapted for use with people with dementia. However there is preliminary evidence for the acceptability, reliability and validity of measures of perceived harm, secrecy and stigma impact. Further conceptual and psychometric development is required.
Objective: The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of ...decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia.
Methods: A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvement
Results: Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate (n = 10) to high (n = 5) quality ratings. Participants were predominantly people living with dementia (n = 13), Parkinson's disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources).
Conclusion: Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers.
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