Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL

Purpose 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. Methods 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. Results 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. Conclusions 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

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

Introduction: 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. Methods: Searches on terms including ‘carers’, ‘dementia’, ‘family’ and ‘quality of life’ in research databases. Findings were synthesised inductively, grouping factors associated with carer QOL into themes. Results: 909 abstracts were identified. Following screening, lateral searches and quality appraisal, 41 studies (n=5,539) were included for synthesis. Ten themes were identified: demographics; carer-patient relationship; dementia characteristics; demands of caring; carer health; carer emotional wellbeing; support received; carer independence; carer self-efficacy; and future. Discussion: 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

Service user/survivor involvement in mental health education and training:overcoming the barriers

This article discusses 10 barriers to the involvement of service users/survivors in learning and teaching about mental health in higher education, suggesting ways of overcoming each. The paper is addressed to mental health trainers and educators, some of whom will be mental health service users/survivors. We have not looked at the involvement of carers/relatives in learning and teaching here. They also clearly have an important role to play and some of what we have written will have relevance to their involvement

The Ten Essential Shared Capabilities: their development and application

In this chapter, we explore how the Ten Essential Shared Capabilities were developed and their initial application in practice as part of the training and education of mental health workers. Early in the 21st Century we find ourselves in the position whereby it is widely acknowledged that education and training for mental health practice has not kept pace with contemporary service models or the changing needs of service users and carers. There continue to be serious concerns about the utility, relevance and effectiveness of much of our current education and training provision. Although it has long been recognised that there are distinct advantages in multidisciplinary and shared training, much of the coordination and delivery of programmes remains fragmented and uni-disciplinary. Differences between the professional roles of mental health practitioners are difficult to define and the role of nurses and social workers covers much of the same ground. In addition a number of new roles have been created and there are increasing numbers of mental health workers who do not belong to the established professions. Their training and education, whilst generally more modern in its approach, has grown in a very piecemeal way and presents as an interesting, lively but somewhat un-coordinated patchwork of vocational and academic qualifications

Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review

Objective: Neurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers’ quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions so using disease-specific instruments has been advocated. This systematic review aimed to identify and examine the psychometric properties of disease-specific outcome measures of QOL of family carers of people with neurodegenerative diseases (Alzheimer’s disease, other dementias; Huntington’s disease; Parkinson’s disease; Multiple Sclerosis; and Motor Neurone Disease). Design: Systematic review. Methods: Instruments were identified using five electronic databases (PubMed, PsycINFO, Web of Science, Scopus and IBSS) and lateral search techniques. Only studies which reported the development and/or validation of a disease-specific measure for adult family carers, and which were written in English, were eligible for inclusion. The methodological quality of the included studies was evaluated using the COSMIN checklist. The psychometric properties of each instrument were examined. Results: Six hundred and seventy six articles were identified. Following screening and lateral searches, a total of eight articles were included; these reported seven disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the seven instruments. Psychometric analyses were mainly focused on internal consistency, reliability and construct validity. None of the measures assessed either criterion validity or responsiveness to change. Conclusions: There are very few measures of carer QOL that are specific to particular neurodegenerative diseases. The findings of this review emphasise the importance of developing and validating psychometrically robust disease-specific measures of carer QOL