What is intended by the term "participation" and what does it mean to people living with dementia? A conceptual overview and directions for future research.

Policy continues to emphasise the importance of wellbeing in dementia. However, there is a vital need for psychosocial interventions that can promote positive outcomes to enhance "living well with dementia". Our developing understanding of what people living with dementia report as being important to them, has resulted in new interpretations of what constitutes wellbeing including constructs such as "growth", "purpose" and "participation". These exciting and important constructs are not currently captured by outcome measures within dementia research. This limits our understanding of the value of psychosocial interventions. This paper explores the concept of participation and how continued participation in social life can make a difference to the rights of people living with dementia as citizens. We will firstly consider why participation is important for how we might measure outcomes in dementia research and care. Secondly, we will explore how we might measure participation. Finally, we will consider the value of participation as a psychosocial outcome in future research.

"It's just so important that people's voices are heard": The dementia associate panel.

Including the views and experiences of people living with dementia in research and wider decision making is vital. The impact for the subjective wellbeing of its members of an approach known as The Dementia Associate Panel (DAP) is explored. The panel, based on a social citizenship model, aimed to provide a platform to work with and hear the voices of people living with dementia in a region of England. A mixed method approach using semi-structured interviews, self-report questionnaires, and focus groups was adopted. There were 16 participants; six people living with dementia and ten care partners. Participant motivations to join the panel were based on a desire for individuals' voices and experiences to be heard. Following participation in the panel, participants reported experiencing belonging and purpose. Collective and personal contributions to the development of local health and care policies, education provision, research studies, and to raising general public awareness about dementia was beneficial to reported participant wellbeing. The DAP model has the potential to be developed and adapted when working with people living with dementia in different settings; at national or regional levels across the globe.

Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making.

Dementia friendly (DF) is a term that has been increasingly used in the international literature to describe approaches that include and involve people living with dementia within their communities and wider society. How to support the involvement of people living with dementia to achieve dementia friendly care or support outcomes is an area that has begun to receive attention. We begin by introducing the concept of dementia friendly, the policy context and what has already been evidenced via prior reviews and conceptual discussions. We conducted a systematic review following PRISMA guidelines, resulting in the inclusion of nineteen papers that reported on the methods and approaches used to involve people living with dementia in achieving dementia friendly or supportive care outcomes. Five primary themes were identified: the potential of group-based activities to facilitate inclusion and engagement; achieving engagement in decision making; the value of developing tools to help service providers to engage those living with dementia in care decisions; the role of awareness raising and education to support the inclusion of a range of stakeholders in achieving DF support and care outcomes; the need for cultural and contextual sensitivity when seeking to engage stakeholders to achieve positive care outcomes. We conclude by considering how both the underpinning ethos of social citizenship and social inclusion need to be in place alongside a range of approaches that are adapted to fit local contexts and needs to enable the involvement of people living with dementia in achieving dementia friendly care outcomes.

Qualitatively exploring the suitability of tablet computers to encourage participation with activities by people with moderate stage dementia.

INTRODUCTION: Opportunities to participate with enjoyable activities is one of the most frequently reported unmet needs by the person living with dementia. Enabling and intuitive technologies may offer accessible ways to engage with such activities. OBJECTIVES: To explore how tablet computers might encourage participation in enjoyable activities by people with moderate levels of dementia and to consider how such technologies might be incorporated into the repertoire of activities currently provided through day care settings. METHODS: A focused visual ethnographic approach was developed specifically to meet the research objectives. Twelve participants attending a community day care centre and nine supporters (both volunteers and paid staff) consented to take part in the research. Technology facilitated group activity sessions took place twice a week for a period of four weeks and all were video recorded. Findings: Video analysis demonstrated that the majority of people with dementia found the technology an effective means of participating in enjoyable activities. Analysis also revealed the extent to which participation relies on the existence of effective support. It showed how maintaining focus on retained strengths and abilities enabled the group overall to meet and often exceed their own and others perceived capacity to participate. Finally, analysis confirmed the importance of enjoyment of activities 'in the moment' and the need for those supporting people in the moderate stages of dementia to acknowledge and work with this. CONCLUSION: The use of tablet computers to enhance participation in sociable and enjoyable activities in day care settings is realistic and achievable if supported appropriately.

'It's definitely not Alzheimer's': Perceived benefits and drawbacks of a mild cognitive impairment diagnosis.

OBJECTIVES: To understand the perceived benefits and drawbacks of a mild cognitive impairment (MCI) diagnosis from the perspective of those living with the label. METHODS: Participants were included if they had recently (within 6 months) received a MCI diagnosis. We also recruited close family members to gain their perspectives. Each was interviewed separately with a semi-structured topic guide covering three areas: (1) experience of cognitive impairments and changes in the individual; (2) impact of cognitive impairment(s) on daily activities and social relationships; and (3) experience of the diagnosis process and living with the label. Transcribed interviews were stored in Nvivo® . Grounded theory procedures of memo writing, open coding, constant comparison, and focused coding were used to derive conceptual themes. RESULTS: Eighteen dyads were interviewed. The overarching themes surrounding diagnosis benefits and drawbacks were as follows: (1) emotional impact of the diagnosis; (2) practical benefits and limitations of the diagnosis, in terms of (a) understanding one's symptoms and (b) access to clinical support. Although participants were glad to have clinical support in place, they expressed frustration at the lack of clarity, and the lack of available treatments for MCI. Consequently, living with MCI can be characterized as an ambivalent experience. CONCLUSION: As a clinical label, MCI appears to have little explanatory power for people living with cognitive difficulties. Work is needed to clarify how clinicians and patients communicate about MCI, and how people can be helped to live well with the label. Despite an emerging body of prognostic studies, people with MCI are likely to continue living with significant uncertainty. Statement of contribution What is already known on this subject? Mild cognitive impairment is a state of cognitive decline between normal cognitive ageing and dementia. This clinical category has been an important domain of academic debate over recent years. From a clinical perspective, diagnosing MCI is a helpful way to enable communication between health professionals, and a diagnosis can be important for patients in need of support and education. However, diagnosis can be fraught with difficulties, while patients have reported significant uncertainty about the label. This study aimed to examine the perceived benefits and drawbacks of receiving a MCI diagnosis. What does this study add? The emotional impact of a MCI diagnosis is complex and raised conflicting and fluctuating emotions in our participants' accounts - most notably worry and relief. Participants were glad to have clinical support available to call on; however, they were frustrated at the lack of 'treatments' available for MCI and were often anxious to slow any cognitive decline down Health psychologists will have an important role to play in understanding and improving clinical communication about MCI.