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

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.

Validation of the multidimensional scale of perceived social support (MSPSS) for family caregivers of people with dementia.

BACKGROUND AND OBJECTIVES: 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. RESEARCH DESIGN AND METHODS: 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. RESULTS: 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. DISCUSSION AND IMPLICATIONS: 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.

The experiences of those affected by parental young onset dementia: A qualitative systematic literature review.

AIM: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. METHOD: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed. RESULTS: 15 articles were included in the review. Four analytical themes and 11 subthemes were found. The analytical themes were 'making sense of dementia', 'impact of dementia', 'coping' and 'support'. CONCLUSIONS: The experiences of those affected by parental young onset dementia vary widely. There is a lack of knowledge and understanding of young onset dementia by professionals and the public, and a scarcity of appropriate support. This has clinical implications for professionals working with families affected by young onset dementia, in particular with regards to service design and delivery.

A psychometric appraisal of positive psychology outcome measures in use with carers of people living with dementia: a systematic review.

OBJECTIVES: This review aimed (i) to identify all positive psychology measures in use with family carers and (ii) to determine their psychometric properties. DESIGN: Literature searches were made in Ovid MEDLINE, PsychINFO, and Web of Science. The identified measures were then subjected to analysis via an established quality appraisal tool. RESULTS: Twenty-five instruments representing the positive psychology constructs of resilience, self-efficacy, and positive aspects to caregiving were found. Two reviewers independently evaluated the measures using the quality appraisal tool. The Gain in Alzheimer Care Instrument, the Resilience Scale, and the Caregiver Efficacy Scale were found to be the highest scoring measures within their respective constructs. CONCLUSIONS: Although some robust instruments were identified, there were numerous examples of important psychometric properties not being evidenced in development papers. Future researchers and clinicians should administer evidence-based outcome measures with adequate psychometric properties representing positive and negative constructs to obtain a comprehensive picture of a person's well-being.