While patient and public involvement (PPI) in health and social care research has progressed successfully in the last decade, a range of difficulties with the evidence base exist, including poor understanding of the concept of impact, limited theorization and an absence of quantitative impact measurement. In this paper, we argue that a paradigm change towards robust measurement of the impact of involvement in research is needed to complement qualitative explorations. We argue that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact. We consider the key advantages measurement would bring in strengthening the PPI evidence base through a greater understanding of what works, for whom, in what circumstances and why.

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AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

This case study illustrates the research career trajectory of two lay researchers after they joined a Big Lottery funded study to explore loneliness and isolation among older people living in a town in the north of England, UK. The two lay researchers were of pensionable age themselves and engaged in all aspects of the research process as full members of the research team. Following research methods training and their substantive input into study design, they engaged fully in an approach of peer-interviewing of other older adults as the main study method. Following this initial exposure to undertaking research, these exemplars of public involvement in research went on to be involved in other research as co-researchers at a local and national level. Initially the paper sets out the lay researchers' personal backgrounds and expectations from involvement in research. The impact of their involvement in research on their quality of life and that of their community is presented. Latterly, the societal impact of the lay researcher's involvement is examined. The difference they made to the initial study design and conduct is described first followed by their development as substantial research resources for other studies and community initiatives. Overall the impact of these lay researchers has been significant and the paper provides an example of how involvement in research can impact on individuals and communities to great effect.

To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. Method: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers. Results: We use the conceptual models to show how the capacity to mentalize ("holding mind in mind") offers a greater sense of control over internal and external conflicts, with the result that they can be deescalated in pursuit of mutual goals. Conclusions: The integrative conceptual framework presented here highlights specific psychological and relational mechanisms that can be targeted through carer training to enhance communication with a person living with dementia.