Background: Dementia, which affects an estimated 35 million individuals worldwide, is now recognised as a growing health and economic problem. With insufficient levels of health and welfare services in many nations, there exists a reliance on family caregivers to provide care for individuals with dementia (IWDs). However, the potential negative psychological and physical consequences of the caregiving role cannot be ignored. A growing literature base has improved the theoretical understanding of mental health difficulties (e.g. depression, burden) in caregivers. However, significant gaps in the research remain. These include understanding outcomes such as caregiver anxiety and examining the role of potentially crucial variables, such as levels of suffering and empathy. Objectives: An empirical study was conducted in order to add to the literature regarding depression and anxiety in spousal caregivers of IWDs. This research conducted exploratory analyses of the relationships between the suffering of IWDs, IWDs' depression and anxiety, caregivers' levels of empathy, caregiver satisfaction and caregiver anxiety and depression. Caregivers' anxiety and depression is considered in the context of research on co-morbidity. In addition, the levels of discrepancy between ratings of suffering, whereby caregivers frequently report IWDs to be suffering more than IWDs self-report, were also examined. A systematic review was conducted in order to evaluate the effectiveness of psychosocial interventions for anxiety in informal caregivers of IWDs. Method: For the empirical study, a cross-sectional survey methodology was employed where dyads of caregivers and IWDs completed questionnaires during face-to-face interviews. Primary variables examined were the suffering of IWDs, IWDs' levels of depression and anxiety, and caregivers' levels of empathy, satisfaction, depression and anxiety. The suffering of IWDs was rated both by the IWDs (self-reported suffering) and the caregivers (perceived suffering). Descriptive statistics and exploratory correlational analyses were used to address a number of exploratory research questions regarding the relationships between the investigated variables. For the systematic review, five scientific databases were searched for relevant randomised controlled trials (RCT). Study quality was assessed according to standardised, recommended criteria and a qualitative synthesis of the evidence, including effect sizes, is described. Results Results from the empirical study suggest high levels of clinical anxiety in the caregiver population. In the current sample, there was a high prevalence rate of anxiety (52.5%) and a lower rate of depression (15.0%). However, there were no statistically significant correlates for caregiver anxiety and depression found. Findings are discussed in the context of previous research, the demographics of the current sample and difficulties with recruitment. For the systematic review, twenty studies with substantially different methodological quality were included. Anxiety was rarely identified as the primary outcome measure. However, the evidence suggests that Cognitive Behavioural skills training and psycho-educational interventions can be effective in treating caregiver anxiety. Some preliminary evidence for interventions underpinned by Mindfulness-based strategies was also found. Conclusions: The empirical study found that a large proportion of Scottish spousal caregivers experience clinical levels of anxiety. This suggests that caregiver anxiety must be a key priority for both clinicians and researchers alike. In addition, further research examining these understudied variables and using dyadic methods remains crucial to increasing understanding into caregivers' outcomes. The systematic review demonstrated that research regarding interventions for anxiety in caregivers is growing and there is now a greater emphasis on the underlying theoretical models of delivered interventions. There is also growing evidence that interventions with clear theoretical basis may be more likely to be effective. However, both the empirical study and the systematic review highlight further questions that remain to be addressed in the literature. Further research continues to be necessary in this area to ensure that services are appropriately meeting the needs of both caregivers and IWDs.

Dementia care is an immediate and growing issue that affects everyone. People are living longer increasing the likelihood that they may be diagnosed with dementia. Friends and family are become caregivers but are often unprepared for the role. The purpose of this project was to develop a 15-minute dementia care module to assist caregivers with the home care of dementia patients. A pamphlet was created to reinforce the module information and to provide a quick reference for dementia support. The self-efficacy theory, along with the review of best practice guidelines and evidence from literature, informed the development of the module. The Simple Measure of Gobbledygook (SMOG) and the Flesch Reading Ease scales were used to ensure that the written materials were at an appropriate reading level for the targeted group. A single group evaluation was used to determine whether caregivers would be able to understand and use the information. A total of 5 lay dementia caregivers volunteered to evaluate the dementia module and related pamphlet. They volunteered to provide feedback using Appraisal of Guidelines for Research and Evaluation (AGREE) tool. Four out of the 5 caregivers strongly agreed or agreed that the module met the designated criteria. All participants stated that the information presented in the module/pamphlet was applicable to their circumstance as dementia caregivers, that the information would assist to provide better care for their loved one, and that they would recommend the dementia module to other caregivers. This project will have a positive impact on social change by providing dementia caregivers with strategies and information to deliver quality dementia care for their loved ones.

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Yes / Background A community-based occupational therapy intervention for people with mild to moderate dementia and their family carers (Community Occupational Therapy in Dementia (COTiD)) was found clinically and cost effective in the Netherlands but not in Germany. This highlights the need to adapt and implement complex interventions to specific national contexts. The current trial aims to evaluate the United Kingdom-adapted occupational therapy intervention for people with mild to moderate dementia and their family carers living in the community (COTiD-UK) compared with treatment as usual. Methods/Design This study is a multi-centre, parallel-group, pragmatic randomised trial with internal pilot. We aim to allocate 480 pairs, with each pair comprising a person with mild to moderate dementia and a family carer, who provides at least 4 hours of practical support per week, at random between COTiD-UK and treatment as usual. We shall assess participants at baseline, 12 and 26 weeks, and by telephone at 52 and 78 weeks (first 40 % of recruits only) after randomisation. The primary outcome measure is the Bristol Activities of Daily Living Scale (BADLS) at 26 weeks. Secondary outcome measures will include quality of life, mood, and resource use. To assess intervention delivery, and client experience, we shall collect qualitative data via audio recordings of COTiD-UK sessions and conduct semi-structured interviews with pairs and occupational therapists. Discussion COTiD-UK is an evidence-based person-centred intervention that reflects the current priority to enable people with dementia to remain in their own homes by improving their capabilities whilst reducing carer burden. If COTiD-UK is clinically and cost effective, this has major implications for the future delivery of dementia services across the UK. / This is independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research scheme (RP-PG-0610-10108). The VALID research team acknowledges the support of the National Institute of Health Research Clinical Research Network. This research is sponsored by North East London NHS Foundation Trust (NELFT).

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The purpose of this study is to explore what knowledge dementia caregivers have about advance care planning (ACP), how they learn to execute formal advance directives (ADs) or have engaged in an informal ACP process, and how they understand their roles as decision makers for the patients. Factors that contribute to the completion of an ACP process such as demographic, psychosocial, and situational factors are identified. From the grounded theory data analysis, a theory emerged about how ACP is accomplished and used by caregivers. Findings reveal that caregivers understand ACP as having the power to shape the dying process for dementia patients. It is not just about executing formal written ADs but how caregivers exercise that power. Caregivers’ knowledge and beliefs are reflected in their behavior regarding ACP in both how they do the ACP process and how they use ACP. For the caregivers in this study, the process of ACP occurs along a trajectory from: years before dementia to dementia diagnosis to end stage and death. At each of these stages, actions taken by the caregivers and their motivation are identified. Three key features of the ACP process in all three stages are examined: conversations within the family and with trusted others, gaining knowledge of ACP, and keeping ACP documents. How caregivers use ACP is based on how they define their roles as decision makers for their patients by: accepting responsibility for making difficult decisions regarding treatment for the patients, using ACP as an effective tool to shape the dying process for their patients, and doing battle with health care professionals to honor patients’ wishes. This definition is shaped by the meaning caregivers give to ACP, how caregivers understand life sustaining measures, and caregivers’ knowledge of patients’ end-of-life wishes. This new theory, the Dementia Caregiver Advance Care Planning Theory, adds new knowledge as the first model specific to dementia caregivers and adds dimension and depth to the current existing ACP models by detailing an ACP process, demonstrating the impact of conversations on the process, and identifying both the most important influences and the primary relationship in the decision making process.

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