'It was just - everything was normal': outcomes for people living with dementia, their unpaid carers, and paid carers in a Shared Lives day support service.

OBJECTIVES: Short breaks support the wellbeing of people living with dementia (PLWD) and their unpaid carers. However, little is known about the benefits of community-based short breaks. The objective of this study was to conduct interviews with stakeholders of a Shared Lives (SL) day support service to explore mechanisms and outcomes for the service. The aim of the study was to refine a logic model for a SL day support service for PLWD, their unpaid carers, and paid carers. This logic model shall form the basis for a Social Return on Investment evaluation to identify the social value contributed by the service. METHODS: Thirteen interviews were conducted with service stakeholders including PLWD, unpaid carers and paid carers. Framework analysis assisted in the synthesis of the findings into a logic model. RESULTS: The logic model refined through the interviews, detailed service mechanisms (inputs, activities, outputs) and outcomes. An overarching theme from the interviews concerned the importance of triadic caring relationships, which conferred benefits for those involved in the service. CONCLUSION: SL day support fosters triadic caring relationships, and interview data suggests that these relationships are associated with meaningful outcomes for PLWD, their unpaid carers, and paid carers. We highlight the implications for policy, practice, and future research.

Reflections on a personalized cognitive rehabilitation intervention: Experiences of people living with dementia and their carers participating in the GREAT trial.

Cognitive rehabilitation for people living with early-stage dementia improves functional ability in areas targeted in the therapy, but little is known about how participants experience this intervention. This qualitative paper investigates participants' views about a cognitive rehabilitation intervention in a randomized controlled trial (the GREAT trial) and aims to help explain and interpret the findings and to inform further intervention development. Using in-depth thematic analysis, 43 semi-structured interviews (35 individual and 8 dyadic) were conducted with 25 people living with dementia and 26 family carers from three sites. The person-centred, individualized approach was valued. Some participants' views about dementia were questioned as a consequence of taking part in the therapy; they considered the effectiveness of the intervention in the context of the progressive nature of the condition. Certain participants continued to be doubtful, focussing on the inevitability of decline, rather than the possibility of reablement. Such views may have influenced engagement. The therapeutic relationship played a vital role as it was how personalized care was provided and participants' views had changed positively. Therapists engendered greater confidence and reduced anxiety and social isolation. Positive responses support personalized rehabilitative care to address the specific needs of people living with dementia.

The development and theoretical application of an implementation framework for dialectical behaviour therapy: a critical literature review.

BACKGROUND: Dialectical behaviour therapy (DBT) is a third wave behaviour therapy combining behaviour based components with elements of mindfulness. Although DBT effectiveness has been explored, relatively little attention has been given to its implementation. Frameworks are often the basis for gathering information about implementation and can also direct how the implementation of an intervention is conducted. Using existing implementation frameworks, this critical literature review scoped the DBT implementation literature to develop and refine a bespoke DBT implementation framework. METHOD AND RESULTS: The initial framework was developed by consolidating existing implementation frameworks and published guidance on DBT implementation. The critical literature review retrieved papers from Medline, CINAHL, PsycInfo, PubMed, and the reference lists of included papers. Framework elements were used as codes which were applied to the literature and guided the synthesis. Findings from the synthesis refined the framework.The critical literature review retrieved 60 papers but only 14 of these explicitly focused on implementation. The DBT implementation framework captured all the execution barriers and facilitators described in the literature. However, the evidence synthesis led to a more parsimonious framework as some elements (e.g., research and published guidance) were seldom discussed in DBT implementation. CONCLUSION: To our knowledge this is the first published review exploring DBT implementation. The literature synthesis suggests some tentative recommendations which warrant further exploration. For instance, if DBT implementation is not pre-planned, having someone in the organisation who champions DBT can be advantageous. However, as the literature is limited and has methodological limitations, further prospective studies of DBT implementation are needed.

Influence of Positive Aspects of Dementia Caregiving on Caregivers' Well-Being: A Systematic Review.

BACKGROUND AND OBJECTIVES: There is a growing evidence base that informal caregivers can identify positive aspects of providing care and that this may have a beneficial influence on their well-being. The aim of this systematic review was to explore how positive aspects of caregiving (PAC) affects the well-being of caregivers of people with dementia. RESEARCH DESIGN AND METHODS: We searched electronic databases for quantitative studies exploring the association between PAC and caregiver well-being. Studies were included if they involved informal (unpaid) caregivers of people with dementia, at least 75% of whom had to be residing in the community. A narrative synthesis was used to explore patterns within the data. RESULTS: Fifty-three studies were included in the narrative synthesis. Most studies utilized a cross-sectional design. The majority of samples consisted primarily of spouses and female caregivers. Twenty different PAC measures were employed and studies referred to a variety of constructs, such as satisfactions, gains, meaning, and rewards. PAC was associated with lower depressive symptoms and burden. Conversely, PAC was associated with better mental health, quality of life, satisfaction with life, and competence/self-efficacy. PAC was not associated with self-rated health or personal strain/stress. DISCUSSION AND IMPLICATIONS: The findings suggest that identifying PAC is associated with better caregiver well-being, although further longitudinal studies are required to explore how this relationship changes over time. Interventions that enable caregivers to gain a more positive experience of caregiving could be beneficial for their well-being.

Cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in progressive neurodegenerative conditions: A scoping review.

BACKGROUND: Despite its potentially significant impact, cognitive disability may be overlooked in a number of progressive neurodegenerative conditions, as other difficulties dominate the clinical picture. OBJECTIVE: We examined the extent, nature and range of the research evidence relating to cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in Parkinsonian disorders, multiple sclerosis (MS), frontotemporal dementias (FTD), motor neuron disease and Huntington's disease. METHODS: Scoping review based on searches of MEDLINE and CINAHL up to 15 March 2016. RESULTS: We included 140 eligible papers. Over half of the studies, and almost all the randomised controlled trials, related to MS, while a number of single case studies described interventions for people with FTD. CR interventions addressed functional ability, communication and interaction, behaviour or memory. The majority of psychotherapy interventions involved cognitive behavioural therapy for depression or anxiety. Self-management interventions were mainly available for people with MS. There were few reports of interventions specific to caregivers. Numerous methodological challenges were identified. CONCLUSIONS: The limited range of studies for all conditions except MS suggests a need firstly to synthesise systematically the available evidence across conditions and secondly to develop well-designed studies to provide evidence about the effectiveness of CR and other psychological interventions.

A pilot randomized controlled trial of a self-management group intervention for people with early-stage dementia (The SMART study).

BACKGROUND: Self-management equips people to manage the symptoms and lifestyle changes that occur in long-term health conditions; however, there is limited evidence about its effectiveness for people with early-stage dementia. This pilot randomized controlled trial (RCT) explored the feasibility of a self-management intervention for people with early-stage dementia. METHODS: The participants were people with early-stage dementia (n = 24) and for each participant a caregiver also took part. Participants were randomly allocated to either an eight-week self-management group intervention or treatment as usual (TAU). Assessments were conducted at baseline, three months and six months post-randomization by a researcher blind to group allocation. The primary outcome measure was self-efficacy score at three months. RESULTS: Thirteen people with dementia were randomized to the intervention and 11 to TAU. Two groups were run, the first consisting of six people with dementia and the second of seven people with dementia. There was a small positive effect on self-efficacy with the intervention group showing gains in self-efficacy compared to the TAU group at three months (d = 0.35), and this was maintained at six months (d = 0.23). In terms of intervention acceptability, attrition was minimal, adherence was good, and satisfaction ratings were high. Feedback from participants was analyzed with content analysis. The findings suggest the positive aspects of the intervention were that it fostered independence and reciprocity, promoted social support, offered information, and provided clinician support. CONCLUSIONS: This study has provided preliminary evidence that self-management may be beneficial for people with early-stage dementia.

A Review of Self-Management Interventions for People With Dementia and Mild Cognitive Impairment.

Self-management offers a way of helping people with dementia or mild cognitive impairment (MCI) to play an active role in managing their condition. Barlow, Wright, Sheasby, Turner, and Hainsworth have defined self-management as the "individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition." Although commonly used in other chronic health conditions, there has been relatively little exploration of the role of self-management in dementia or MCI. This review aimed to identify group-based psychosocial interventions for people with dementia or MCI that incorporate significant elements of self-management. Fifteen interventions were included in the review: 12 for people with dementia and 3 for participants with MCI. In both the dementia and MCI interventions, the most commonly included self-management components were information, communication, and social support, and skills training. The review findings indicate that components of self-management have been incorporated into group-based interventions for people with dementia and MCI. Further studies are needed to address the methodological limitations of the included studies and to determine the effectiveness of self-management interventions with these populations.

Help yourself: perspectives on self-management from people with dementia and their caregivers.

Self-management interventions are increasingly offered to people with chronic health conditions. However, there has been limited exploration of how applicable such an approach is in early stage dementia. In this study we explored the views of people with dementia and family caregivers on the use of self-management in dementia. We conducted semistructured interviews with 13 people with early stage dementia and 11 caregivers. We analyzed transcripts using thematic analysis. We found eight themes in the analysis, and they indicated that self-management occurs in the context of peoples' family and social relationships as well as relationships with professional services. Six of the themes involved barriers to and facilitators of self-management. It is evident from these findings that people with dementia and caregivers use self-management techniques. Their use of such techniques could be enhanced by the development of interventions designed to help people with dementia to develop their self-management skills.

Self-management in early-stage dementia: a pilot randomised controlled trial of the efficacy and cost-effectiveness of a self-management group intervention (the SMART study).

BACKGROUND: The possibility of living well with a long-term condition has been identified as centrally relevant to the needs of people living with dementia. Growing numbers of people with early-stage dementia are contributing accounts that emphasise the benefits of actively engaging in managing the condition. Self-management interventions share the common objectives of educating about the condition, optimising well-being, enhancing control over the situation and enabling people to take more responsibility for managing the condition. Benefits of such an approach can include improved knowledge, self-efficacy, health status, and better performance of self-management behaviours. However, there is only preliminary evidence that people with early-stage dementia can benefit from such interventions. METHODS: This feasibility study involves the development of a self-management group intervention for people with early-stage Alzheimer's disease, vascular dementia or mixed Alzheimer's and vascular dementia. This study is a single-site pilot randomised-controlled trial. Forty-two people with early stage dementia, each with a caregiver (family member/friend), will be randomised to either the self-management group intervention or to treatment as usual.The self-management group intervention will involve eight weekly sessions, each lasting 90 minutes, held at a memory clinic in North Wales. All participants will be re-assessed three and six months post-randomisation. This study is intended to supply an early evaluation of the self-management intervention so that a full scale trial may be powered from the best available evidence. It will assess the feasibility of the intervention, the study design and the recruitment strategies. It will estimate the parameters and confidence intervals for the research questions of interest. The primary outcome of interest is the self-efficacy score of the person with dementia at three months post-randomisation. Secondary outcomes for the person with dementia are self-efficacy at six months post-randomisation and cognitive ability, mood and well-being at three and six months post-randomisation. Secondary outcomes for caregivers are their distress and stress at three and six months post-randomisation. The cost-effectiveness of the intervention will also be examined. DISCUSSION: This study will provide preliminary information about the feasibility, efficacy and cost-effectiveness of a self-management group intervention for people in the early stages of dementia. TRIAL REGISTRATION: Current Controlled Trials, ISRCTN02023181.

Qualitative meta-synthesis of user experience of computerised therapy for depression and anxiety.

OBJECTIVE: Computerised therapies play an integral role in efforts to improve access to psychological treatment for patients with depression and anxiety. However, despite recognised problems with uptake, there has been a lack of investigation into the barriers and facilitators of engagement. We aimed to systematically review and synthesise findings from qualitative studies of computerised therapies, in order to identify factors impacting on engagement. METHOD: Systematic review and meta-synthesis of qualitative studies of user experiences of computer delivered therapy for depression and/or anxiety. RESULTS: 8 studies were included in the review. All except one were of desktop based cognitive behavioural treatments. Black and minority ethnic and older participants were underrepresented, and only one study addressed users with a co-morbid physical health problem. Through synthesis, we identified two key overarching concepts, regarding the need for treatments to be sensitive to the individual, and the dialectal nature of user experience, with different degrees of support and anonymity experienced as both positive and negative. We propose that these factors can be conceptually understood as the 'non-specific' or 'common' factors of computerised therapy, analogous to but distinct from the common factors of traditional face-to-face therapies. CONCLUSION: Experience of computerised therapy could be improved through personalisation and sensitisation of content to individual users, recognising the need for users to experience a sense of 'self' in the treatment which is currently absent. Exploiting the common factors of computerised therapy, through enhancing perceived connection and collaboration, could offer a way of reconciling tensions due to the dialectal nature of user experience. Future research should explore whether the findings are generalisable to other patient groups, to other delivery formats (such as mobile technology) and other treatment modalities beyond cognitive behaviour therapy. The proposed model could aid the development of enhancements to current packages to improve uptake and support engagement.