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

Involving older adults and unpaid carers in the research cycle: reflections on implementing the UK National Standards for Public Involvement into practice

PurposeThis paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.Design/methodology/approachThis study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.FindingsThis study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.Research limitations/implicationsKey implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.Originality/valueThis paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work

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

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. An iterative process of theory building across four phases of activity (scoping review  = 9 studies), stakeholder engagement (  = 7), interviews (  = 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. 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. 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

'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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12874-022-01747-x