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Dementia-friendly communities (DFCs) are a policy-endorsed approach to community engagement in England that promotes social inclusion to enable people affected by dementia to live well. Research suggests that physical activity is beneficial in encouraging social connection and improving health. A mixed method sequential study design in England involving a national survey (n = 31) and semistructured interviews (n = 65) in three DFCs was carried out. The aim was to understand how DFCs enable people affected by dementia to participate in physical activities. An evaluation framework for DFCs was used to organize and interpret the data, and analysis was informed by the inclusive (social) citizen lens. Findings showed that DFCs offered a range of adapted dementia-inclusive and dementia-specific activities; however, people were not routinely offered information at time of diagnosis. Local authorities (councils) were key to enable access to information and infrastructure change to support sustainable inclusion within their local community. [ABSTRACT FROM AUTHOR]

Objectives: In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England. Methods: Fieldwork took place in six diverse case study sites across England. A mixed methods design was adopted that entailed documentary analysis, focus groups, interviews, observations, and a survey. Participants were people affected by dementia and practice-based stakeholders. A national stakeholder workshop was held to obtain input beyond the research sites. A workshop at the end of the study served to check the resonance of the findings and emerging outputs with stakeholders from the case study DFCs. Results: The study had three key outputs for the evaluation of DFCs: First, an evaluation framework that highlights thematic areas to be considered in evaluating DFCs. Second, a Theory of Change that presents inputs into a DFC and short, medium and longer term outcomes. Third, a matrix for assessing a DFC's degree of maturity, which enables a sense of the kinds of outcomes a DFC might realistically aspire to. These three outputs form a suite of interlinking and complementary evaluation resources for DFCs. Conclusions: The study has contributed evidence-based resources for monitoring and evaluation that complement existing frameworks. They can be applied to arrive at a detailed assessment of how well a DFC works for people affected by dementia, and at insights into the underlying factors that can guide future policy and practice. [ABSTRACT FROM AUTHOR]

Background: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods: An explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results: Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion: This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research. [ABSTRACT FROM AUTHOR]

The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time. [ABSTRACT FROM AUTHOR]

The article discusses a research exploring the views and expectations about living and dying among care home residents and how their views are affected by their experience in the care home. Study reveals that people living in care homes are not different from the rest of the population and the deaths of other residents do not shape their views and priorities for end-of-life care. The findings can help introduce, discuss and tailor existing frameworks and programmes of end-of-life care.