Charlotte R. Stoner

A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being

BACKGROUND Behavioral and psychological symptoms in dementia (BPSD) are important predictors of institutionalization as well as caregiver burden and depression. Previous reviews have tended to group BPSD as one category with little focus on the role of the individual symptoms. This review investigates the role of the individual symptoms of BPSD in relation to the impact on different measures of family caregiver well-being. METHODS Systematic review and meta-analysis of papers published in English between 1980 and December 2015 reporting which BPSD affect caregiver well-being. Paper quality was appraised using the Downs and Black Checklist (1998). RESULTS Forty medium and high quality quantitative papers met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviors were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behavior scores and mean distress scores were pooled for four studies. Irritability, aberrant motor behavior and delusions were the most strongly correlated to distress, disinhibition was the least correlated. CONCLUSIONS The evidence is not conclusive as to whether some BPSD impact caregiver well-being more than others. Studies which validly examined BPSD individually were limited, and the included studies used numerous measures of BPSD and numerous measures of caregiver well-being. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact well-being by including caregiver variables so that interventions can be designed to target BPSD more effectively.

Review of Positive Psychology Outcome Measures for Chronic Illness, Traumatic Brain Injury and Older Adults: Adaptability in Dementia?

Background: Despite positive psychology being increasingly recognised as an important agent in well-being, there is a lack of standardised outcome measures for psychosocial dementia research. This review assessed positive psychology outcome measures using standardised criterion in populations that were identified as having shared characteristics. It aimed to identify robust measures that were suitable for potential adaption or use within a dementia population. Summary: The review identified 16 positive psychology outcome measures (and 8 further psychometric assessments of these) within the constructs of resilience, self-efficacy, religiousness/spirituality, life valuation, sense of coherence, autonomy, resourcefulness and a combined measure (CASP-19). Scale development studies were subject to a quality assessment, and most were found to be lacking information on reproducibility and responsiveness. Key Messages: A wide range of measures within the constructs of positive psychology was identified as having potential utility for psychosocial research within a dementia population. Examples included the CD-RISC, GSWB, SWLS, MPAQ, RSOA and CASP-19. It is recommended that such scales are further adapted or validated for people with dementia. Underreporting of appropriate psychometric analyses hampered this review, and it is recommended that future authors endeavour to report such analyses.

Positive psychology outcome measures for family caregivers of people living with dementia : a systematic review

BACKGROUND 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. METHOD 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. RESULTS 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. CONCLUSIONS 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.

Psychosocial interventions for people with dementia: a synthesis of systematic reviews

ABSTRACT Objectives: Over the last 10 years there has been a multitude of studies of psychosocial interventions for people with dementia. However, clinical services face a dilemma about which intervention should be introduced into clinical practice because of the inconsistency in some of the findings between different studies and the differences in the study qualities and trustworthiness of evidence. There was a need to provide a comprehensive summary of the best evidence to illustrate what works. Methods: A review of the systematic reviews of psychosocial interventions in dementia published between January 2010 and February 2016 was conducted. Results: Twenty-two reviews (8 physical, 7 cognitive, 1 physical/cognitive and 6 other psychosocial interventions) with a total of 197 unique studies met the inclusion criteria. Both medium to longer-term multi-component exercise of moderate to high intensity, and, group cognitive stimulation consistently show benefits. There is not sufficient evidence to determine whether psychological or social interventions might improve either mood or behaviour due to the heterogeneity of the studies and interventions included in the reviews. Conclusion: There is good evidence that multi-component exercise with sufficient intensity improves global physical and cognitive functions and activities of daily living skills. There is also good evidence that group-based cognitive stimulation improves cognitive functions, social interaction and quality of life. This synthesis also highlights the potential importance of group activities to improve social integration for people with dementia. Future research should investigate longer-term specific outcomes, consider the severity and types of dementia, and investigate mechanisms of change.

The development and preliminary psychometric properties of two positive psychology outcome measures for people with dementia: the PPOM and the EID-Q

BackgroundPositive psychology research in dementia care has largely been confined to the qualitative literature because of the lack of robust outcome measures. The aim of this study was to develop positive psychology outcome measures for people with dementia.MethodsTwo measures were each developed in four stages. Firstly, literature reviews were conducted to identify and operationalise salient positive psychology themes in the qualitative literature and to examine existing measures of positive psychology. Secondly, themes were discussed within a qualitative study to add content validity for identified concepts (n = 17). Thirdly, draft measures were submitted to a panel of experts for feedback (n = 6). Finally, measures were used in a small-scale pilot study (n = 33) to establish psychometric properties.ResultsSalient positive psychology themes were identified as hope, resilience, a sense of independence and social engagement. Existing measures of hope and resilience were adapted to form the Positive Psychology Outcome Measure (PPOM). Due to the inter-relatedness of independence and engagement for people with dementia, 28 items were developed for a new scale of Engagement and Independence in Dementia Questionnaire (EID-Q) following extensive qualitative work. Both measures demonstrated acceptable internal consistency (α = .849 and α = .907 respectively) and convergent validity.ConclusionsTwo new positive psychology outcome measures were developed using a robust four-stage procedure. Preliminary psychometric data was adequate and the measures were easy to use, and acceptable for people with dementia.

Psychometric Properties and Factor Analysis of the Engagement and Independence in Dementia Questionnaire (EID-Q)

Background/Aims: Independence and social engagement are important outcomes for people with dementia. The aim of this study was to conduct an in-depth psychometric assessment of the Engagement and Independence in Dementia Questionnaire (EID-Q), a measure of social independence. Methods: This was an observational study at five NHS sites across England. Participants completed the EID-Q alongside additional measures. Psychometric analysis included internal consistency, test-retest reliability, convergent validity, and factor analyses. Results: A total of 225 people living with dementia completed the study. Internal consistency was excellent (α = 0.921) and the measure remained moderately stable over a 1-week period (ICC = 0.768). Significant correlations were observed between quality of life (r = 0.682) and depression (r = –0.741; both p < 0.001), indicating the importance of these concepts for wellbeing in dementia. Factor analysis indicated the presence of five factors which loaded onto a second order two-factor solution. These latent factors were named “sense of independence” and “social engagement.” Conclusions: The EID-Q demonstrated acceptable psychometric properties and the factor solution had an adequate model fit. The strong correlations suggest that social independence is strongly related to depression and quality of life. Future work will entail an analysis of responsiveness to intervention and further large-scale work.

The Positive Psychology Outcome Measure (PPOM) for people with dementia: Psychometric properties and factor structure

OBJECTIVES To conduct an in-depth psychometric assessment of the PPOM; a measure of hope and resilience. METHOD 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. RESULTS 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. DISCUSSION 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.

The psychometric properties of the control, autonomy, self-realisation and pleasure scale (CASP-19) for older adults with dementia

ABSTRACT 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-19s 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.

The development of positive psychology outcome measures and their uses in dementia research: A systematic review

Positive psychology is gaining credence within dementia research but currently there is a lack of outcome measures within this area developed specifically for people with dementia. Authors have begun adopting positive psychology measures developed with other populations but there is no consensus around which are more appropriate or psychometrically robust. A systematic search identified measures used between 1998 and 2017 and an appraisal of the development procedure was undertaken using standardised criteria enabling the awarding of scores based on reporting of psychometric information. Twelve measures within the constructs of identity, hope, religiosity/spirituality, life valuation, self-efficacy, community and wellbeing were identified as being used within 17 dementia studies. Development procedures were variable and scores on development criterion reflected this variability. Of the measures included, the Herth Hope Index, Systems of Belief Inventory and Psychological Wellbeing Scale appeared to be the most robustly developed and appropriate for people with dementia.