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

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

'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

The impact of a visual arts program on quality of life, communication, and well-being of people living with dementia: a mixed-methods longitudinal investigation

Background: Research reviews highlight methodological limitations and gaps in the evidence base for the arts in dementia care. In response, we developed a 12-week visual art program and evaluated the impact on people living with dementia through a mixed-methods longitudinal investigation. Methods: One hundred and twenty-five people living with mild to severe dementia were recruited across three research settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on quality of life (QoL), communication and perceptions of the program were obtained through interviews and self-reports with participants and their carers. Eight domains of well-being were measured using a standardized observation tool, and data compared to an alternative activity with no art. Results: Across all sites, scores for the well-being domains of interest, attention, pleasure, self-esteem, negative affect, and sadness were significantly better in the art program than the alternative condition. Proxy-reported QoL significantly improved between baseline and 3-month follow-up, but no improvements in QoL were reported by the participants with dementia. This was contrasted by their qualitative accounts, which described a stimulating experience important for social connectedness, well-being, and inner-strength. Communication deteriorated between baseline and follow-up in the hospital setting, but improved in the residential care setting. Conclusions: The findings highlight the potential for creative aging within dementia care, the benefits of art activities and the influence of the environment. We encourage dementia care providers and arts and cultural services to work toward embedding art activities within routine care provision

Carrying out research across the arts and humanities and social sciences: developing the methodology for Dementia and Imagination

This paper analyses how the methodological approach for a major Arts and Humanities Research Council and Economic and Social Research Council-funded project entitled Dementia and Imagination1 was formulated. This multidisciplinary project brings together the arts and humanities with the social sciences with their different epistemological philosophies and subsequent understandings of research methods. The main objective was to determine how visual arts activities may change, sustain and catalyse community cultures, beliefs, attitudes and behaviours to create dementia-friendly communities. This project involves 6 different UK universities, 14 researchers, 10 formal partners, 7 project artists, 3 research artists and a large number of civil society organisations. The analysis presents a series of themes that have been identified as influencing the approach taken to develop methods which aimed to speak to different audiences in the social sciences, arts and humanities, policy/practice and public domains. It is concluded that a research project of this type needs to embrace a wide variety of epistemological positions if it is to successfully achieve its objectives. This paper contributes to knowledge about how the methodology of large-scale multidisciplinary projects may be constructed which will be of value to those building research consortia across different universities and between universities and community partners. © 2016 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group