• Factors associated with the quality of life of family carers of people with dementia: A systematic review

      Farina, Nicolas; Page, Thomas E.; Daley, Stephanie; Brown, Anna; Bowling, Ann; Basset, Thurstine; Livingston, Gill; Knapp, Martin; Murray, Joanna; Banerjee, Sube; et al. (Wiley, 2017-02-03)
      Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Searches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well‐being; support received; carer independence; carer self‐efficacy; and future. The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.
    • Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL

      Brown, Anna; Page, Thomas E.; Daley, Stephanie; Farina, Nicolas; Basset, Thurstine; Livingston, Gill; Budgett, Jessica; Gallaher, Laura; Feeney, Yvonne; Murray, Joanna; et al. (Springer Science and Business Media LLC, 2019-04-27)
      We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.
    • The social functioning in dementia scale (SF‐DEM): Exploratory factor analysis and psychometric properties in mild, moderate, and severe dementia

      Budgett, Jessica; Brown, Anna; Daley, Stephanie; Page, Thomas E.; Banerjee, Sube; Livingston, Gill; Sommerlad, Andrew; University College London; University of Kent; University of Sussex (Wiley, 2018-12-14)
      The psychometric properties of the social functioning in dementia scale over different dementia severities are unknown. We interviewed 299 family carers of people with mild, moderate, or severe dementia from two UK research sites; examined acceptability (completion rates); conducted exploratory factor analysis; and tested each factor's internal consistency and construct validity. Of 299, 285 (95.3%) carers completed questionnaires. Factor analysis indicated three distinct factors with acceptable internal consistency: spending time with other people, correlating with overall social function (r = 0.56, P < .001) and activities of daily living (r = −0.48, P < .001); communicating with other people correlating with activities of daily living (r = −0.66, P < .001); and sensitivity to other people correlating with quality of life (r = 0.35, P < .001) and inversely with neuropsychiatric symptoms (r = −0.45, P < .001). The three factors' correlations with other domains were similar across all dementia severities. The social functioning in dementia scale carer version measures three social functioning domains and has satisfactory psychometric properties in all severities of dementia.
    • Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework

      Daley, Stephanie; Murray, Joanna; Farina, Nicolas; Page, Thomas E.; Brown, Anna; Basset, Thurstine; Livingston, Gill; Bowling, Ann; Knapp, Martin; Banerjee, Sube; et al. (Wiley, 2018-09-25)
      Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia. We studied family carers of people with dementia and staff working in dementia services iteratively using in‐depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study‐specific advisory group of family carers. We completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment. For carers of people with dementia, the QOL construct was found to include condition‐specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.