Georgina Charlesworth

International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review

This review begins by highlighting the fact that dementia is truly a global problem at this time, with incidence and prevalence rates rising rapidly in most parts of the world and only expected to increase. Along with this comes the growing demand for programs and services targeted to support both the person with dementia and his or her family caregivers. Around the globe such programs are being developed, evaluated, and put into practice, with government funding and needed infrastructures to support them. However, the many pressing needs of family caregivers for services to reduce their burden and improve quality of life for themselves and their relative far outstrip available programs—even in highly developed countries such as the United States, United Kingdom, and Australia. This is even more so the case in less developed countries and regions such as China, India, Africa, and South and Central America. We conducted an extensive search of existing databases and publications related to this topic, and in this article we both review and critique existing programs and service models. There are descriptive sections on evidence-based programs and practices, as well as discussion of promising areas for future research. In addition, we discuss some of the formidable barriers that prevent or delay access to care in even the more developed countries. Finally, we conclude with a set of recommendations that we believe will enhance growth and productivity in this field.

Befriending carers of people with dementia: randomised controlled trial

Objective To evaluate the effectiveness of a voluntary sector based befriending scheme in improving psychological wellbeing and quality of life for family carers of people with dementia. Design Single blind randomised controlled trial. Setting Community settings in East Anglia and London. Participants 236 family carers of people with primary progressive dementia. Intervention Contact with a befriender facilitator and offer of match with a trained lay volunteer befriender compared with no befriender facilitator contact; all participants continued to receive “usual care.” Main outcome measures Carers’ mood (hospital anxiety and depression scale—depression) and health related quality of life (EuroQoL) at 15 months post-randomisation. Results The intention to treat analysis showed no benefit for the intervention “access to a befriender facilitator” on the primary outcome measure or on any of the secondary outcome measures. Conclusions In common with many carers’ services, befriending schemes are not taken up by all carers, and providing access to a befriending scheme is not effective in improving wellbeing. Trial registration Current Controlled Trials ISRCTN08130075.

Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review

Objectives: This review aims to explore the role of self-efficacy (SE) in the health-related quality of life (QoL) of family carers of people with dementia. Methods: A systematic review of literature identified a range of qualitative and quantitative studies. Search terms related to caring, SE, and dementia. Narrative synthesis was adopted to synthesise the findings. Results: Twenty-two studies met the full inclusion criteria, these included 17 quantitative, four qualitative, and one mixed-method study. A model describing the role of task/domain-specific SE beliefs in family carer health-related QoL was constructed. This model was informed by review findings and discussed in the context of existing conceptual models of carer adaptation and empirical research. Review findings offer support for the application of the SE theory to caring and for the two-factor view of carer appraisals and well-being. Findings do not support the independence of the negative and positive pathways. The review was valuable in highlighting methodological challenges confronting this area of research, particularly the conceptualisation and measurement issues surrounding both SE and health-related QoL. Conclusions: The model might have theoretical implications in guiding future research and advancing theoretical models of caring. It might also have clinical implications in facilitating the development of carer support services aimed at improving SE. The review highlights the need for future research, particularly longitudinal research, and further exploration of domain/task-specific SE beliefs, the influence of carer characteristics, and other mediating/moderating variables.

Mental health of carers

This issue of Aging & Mental Health includes six papers relating to the emotional well-being of family carers (Croog et al., 2006; Droes et al., 2006; Gilliam & Steffen, 2006; Martin et al., 2006; ...

Acceptance checklist for clinical effectiveness pilot trials: a systematic approach

Conducting a pilot trial is important in preparing for, and justifying investment in, the ensuing larger trial. Pilot trials using the same design and methods as the subsequent main trial are ethically and financially advantageous especially when pilot and main trial data can be pooled. For explanatory trials in which internal validity is paramount, there is little room for variation of methods between the pilot and main trial. For pragmatic trials, where generalisability or external validity is key, greater flexibility is written into trial protocols to allow for ‘real life’ variation in procedures. We describe the development of a checklist for use in decision-making on whether pilot data can be carried forward to the main trial dataset without compromising trial integrity. We illustrate the use of the checklist using a pragmatic trial of psychosocial interventions for family carers of people with dementia as a case study.

Reviewing psychosocial interventions for family carers of people with dementia

The aim of systematic reviews is to provide rigorous and unbiased by identifying all available relevant literature (Oxman et al., 1994). Two papers in this issue report systematic reviews of psychosocial interventions for family carers of people with dementia (Cooke et al.; Pusey & Richards). They are welcome additions to an evidence-base in which has been largely unsystematic (e.g. Adkins, 1999; Collins et al., 1994; Man thorpe, 1999). In addition, they have identified a greater number of controlled studies than were included in the restricted and inconclusive Cochrane review (Thompson & Briggs, 2000). All systematic reviews should address a focused clinical question and have explicit criteria for inclusion/exclusion of studies in terms of participants, interventions and research study design (Oxman et al., 1994). We may therefore expect two systematic reviews asking the same clinical question to identify the same body of literature and draw similar conclusions. In this issue, however, we have two surprisingly different pieces of work. Why should this be, and what are the implications for review validity and utility? The two reviews are essentially identical in terms of review question and study inclusion criteria, with the exception of Cooke et al. including single group studies (11) in addition to controlled trials. From the combined total of 41 controlled trials, 44% appeared in both reviews, with 11 studies (27%) in Cooke et al. only, and 12 (29%) in Pusey & Richards only. In other words, neither search strategy identified more than 73% of the total number of studies. Furthermore, additional systematic reviews have different results again (Brodaty et al., 2000; Charlesworth et al., 2000). Brodaty et al., based in Australia, identified 32 relevant published controlled studies (more than either Cooke et al. or Pusey and Richards individually, but less than the combined total), and a search specifically for cognitive behavioural interventions (Charlesworth et al., 2000) identified a small number of controlled studies mentioned in neither Cooke et al. nor Pusey and Richards. That search strategies for systematic reviews on the same topic should produce different results is damaging to the credibility of the review process. To increase the validity of reviews, search strategies must be as rigorous as possible.

Befriending carers of people with dementia: a cost utility analysis

There is very little evidence on the cost‐effectiveness of social care interventions for people with dementia or their carers. The BEfriending and Costs of CAring trial (BECCA, ISRCTN08130075) aimed to establish whether a structured befriending service improved the quality of life of carers of people with dementia, and at what cost.

Barriers to Social Participation among Lonely Older Adults: The Influence of Social Fears and Identity

Introduction Loneliness among older adults is a major public health problem that may be associated with processes of social participation and identity. This study therefore sought to examine the relationship between social participation and identity in a sample of lonely older adults living independently in London, England. Method An inductive qualitative approach, based on semi-structured interviews and thematic analysis, was employed. Results Participants commonly spoke of barriers to social participation that have been reported elsewhere, including illness/disability, loss of contact with friends/relatives, lack of a supportive community, and lack of acceptable social opportunities. However, novel findings were also derived. In particular, participants commonly minimised the difficulties they faced alone, and described attempts to avoid social opportunities. These behaviours were linked to fears about engaging in social participation opportunities, including fears of social rejection and/or exploitation, and fears of losing valued aspects of identity. Discussion It is concluded that social participation amongst lonely older people will not improve through the removal of previously reported barriers alone; instead, older peoples’ beliefs, fears and identities must be addressed. Suggestions for implementing these findings within community organisations are provided.

Cognitive-behavioural therapy for anxiety in dementia: pilot randomised controlled trial.

BACKGROUND Anxiety is common and problematic in dementia, yet there is a lack of effective treatments. AIMS To develop a cognitive-behavioural therapy (CBT) manual for anxiety in dementia and determine its feasibility through a randomised controlled trial. METHOD A ten-session CBT manual was developed. Participants with dementia and anxiety (and their carers) were randomly allocated to CBT plus treatment as usual (TAU) (n = 25) or TAU (n = 25). Outcome and cost measures were administered at baseline, 15 weeks and 6 months. RESULTS At 15 weeks, there was an adjusted difference in anxiety (using the Rating Anxiety in Dementia scale) of (-3.10, 95% CI -6.55 to 0.34) for CBT compared with TAU, which just fell short of statistical significance. There were significant improvements in depression at 15 weeks after adjustment (-5.37, 95% CI -9.50 to -1.25). Improvements remained significant at 6 months. CBT was cost neutral. CONCLUSIONS CBT was feasible (in terms of recruitment, acceptability and attrition) and effective. A fully powered RCT is now required.

The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia.

The objective of the study is to examine caregiver factors as predictors of BPSD‐related distress and their potential mechanisms.