'I have never bounced back': resilience and living with dementia.

OBJECTIVE: This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. METHODS: An iterative process of theory building across four phases of activity (scoping review n = 9 studies), stakeholder engagement (n = 7), interviews (n = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. RESULTS: The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. CONCLUSIONS: Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course.

A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers.

Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure.

Effects of an e-health intervention 'iSupport' for reducing distress of dementia carers: protocol for a randomised controlled trial and feasibility study.

INTRODUCTION: In the UK, National Health Service (NHS) guidelines recommend that informal carers of people living with dementia should be offered training to help them develop care skills and manage their own physical and mental health. The WHO recommends access to affordable, proven, well-designed, online technologies for education, skills training and support for dementia carers. In response to these recommendations, this multisite randomised controlled trial (RCT) is the first study in the UK to evaluate the clinical and cost-effectiveness of an online support programme developed by the WHO called 'iSupport for dementia carers'. METHODS AND ANALYSIS: 350 informal carers (age 18+ years) living in Britain who self-identify as experiencing stress and depression will be recruited. They will be randomised to receive 'iSupport', or standardised information about caring for someone with dementia (control-comparison). Data will be collected via videoconferencing (eg, Zoom) or telephone interview at baseline, 3 months and 6 months. Intention-to-treat analysis will ascertain effectiveness in the primary outcomes (distress and depression) and combined cost, and quality-adjusted life-year data will be used to assess cost-effectiveness compared with usual care from a public sector and wider societal perspective. A mixed-methods process evaluation with a subgroup of carers in the intervention (~N=50) will explore the barriers and facilitators to implementing 'iSupport'. A non-randomised feasibility study will adapt 'iSupport' for young carers (n=38 participants, age 11-17 years). ETHICS AND DISSEMINATION: The research plan was scrutinised by National Institute for Health Research reviewers ahead of funding being awarded. Ethical approval was granted by Bangor University's School of Health and Medical Sciences Academic Ethics Committee, reference number 2021-16915. Dissemination plans include delivering events for stakeholders, social media, a project website, developing policy briefings, presenting at conferences and producing articles for open access publications. TRIAL REGISTRATION NUMBER: ISRCTN17420703.

Enhancing communication between dementia care staff and their residents: an arts-inspired intervention.

Objectives: The arts are increasingly recognised as important and beneficial activities for people living with dementia. However, there is little peer-reviewed published research exploring arts-based learning for dementia care staff. In response, this paper explores (a) how dementia care staff describe forms of communication in care settings, and (b) the impact on communication following four sessions of 'Creative Conversations', an arts-based intervention for skills development.Method: Fourteen care homes received the intervention, delivered as 4 × 2 hour sessions. The intervention uses a range of activities (e.g. poetry, film, music, art making). Twenty-eight care staff were opportunistically sampled (mean age = 42.29), and provided pre-post qualitative data, obtained through interviews. Transcripts were analysed thematically.Results: At baseline, the dominant 'task-focussed' nature of care work was described as a barrier to communication, challenging opportunities for developing meaningful relationships with residents. Post-intervention, three primary themes were identified regarding improving communication: (1) learning through the arts (secondary themes: simplicity and subtlety, innovation in communication, and strengthening the role of non-verbal communication), (2) Enhancing creative approaches to care (secondary themes: element of surprise, confidence to experiment and catalyst for communication) and (3) professional introspection (secondary themes: development of empathy, sharing knowledge and experiences and a new appreciation).Conclusions: The intervention validated staff skills and confidence, enabling meaningful interactions that could be creative, 'in the moment', spontaneous and improvised. This arts-based intervention, which departs from formal education and fact-based learning may be particularly useful for the development of the dementia care workforce.

Understanding quality of life and well-being for people living with advanced dementia.

AIM: To investigate the quality of life (QoL) and well-being of people living with advanced dementia in care homes. METHOD: A mixed-methods approach was taken combining participant observations, interviews with the participants' families and carers, and quantitative measurements. The quantitative measures included AwareCare assessments, QoL in Late-Stage Dementia scale ratings and semi-structured interviews with relatives and staff members. Ryff's psychological well-being framework, the Fairness, Respect, Equality, Identity, Dignity, Autonomy principles, and Kitwood's indicators of well-being, were examined to attempt to identify contributors to QoL for people living with advanced dementia. RESULTS: Participants had limited verbal abilities, but used non-vocal behaviours to communicate. These behaviours influenced their QoL and well-being. CONCLUSION: The indicators of well-being in Kitwood's personhood model were helpful in describing how relatives and staff perceived the QoL of the person with dementia.

A Collaborative Approach: Care Staff and Families Working Together to Safeguard the Quality of Life of Residents Living With Advanced Dementia.

OBJECTIVES: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld. METHODS: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff. RESULTS: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff. DISCUSSION: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.