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Hypothetical model describing the process to becoming a dementia advocate.
Source publication
Dominant messages about the capabilities of those with dementia post-diagnosis are often de-humanising and focused on mental declines. Additionally, carers for those with dementia are more likely to be involved in consultations and enquiries about the condition. This study helps to challenge stigmatising cultural messages by reporting upon the expe...
Context in source publication
Context 1
... these caveats in mind, Figure 1 summarises the process involved for group members, following a dementia diagnosis to the point where they feel ready to be involved in opportunities for education or consultation. This process takes time for individuals, reflecting not only the accumulation of experience post-diagnosis but also a gradual recognition of group identity and values, which broadly align with their own perceptions. ...
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Citations
... Another approach for participants to combat stigma included taking on roles as activists. Active advocacy aligns with the broader discourse on the role of people with dementia as agents of change in shaping public perceptions, policies, and interventions [46]. In addition, the participants in this study seemed to have 'blossomed' in their new roles as dementia advocates. ...
Background
Sharing a dementia diagnosis with others is a prerequisite to accessing important support for social, cognitive, and physical activity. However, due to the stigma associated with dementia, individuals may be hesitant to disclose their diagnosis. Despite the importance of this issue, there is limited research on personal experiences with sharing one’s diagnosis. This study explored how people with young-onset dementia disclose their diagnosis to other people, also known as self-disclosure, and how time affects self-disclosure.
Methods
We conducted an exploratory qualitative study, using semi-structured interviews with nine people with young-onset dementia living in the United Kingdom (UK). A narrative approach to analysis was applied, focusing on understanding the core narratives, themes, tone, and imagery of each participant’s narratives as well as providing a cross-case analysis to identify patterns across narratives.
Results
Participants openly disclosed their diagnosis, accepting it as an illness that did not define their identity. Several were met with stigmatizing reactions, which affected their levels of openness, and a lack of understanding, which caused shrinking social networks for some. Peer support groups, advocacy activities, and strategic concealment were used to support self-disclosure.
Conclusion
This study provides a holistic understanding of people with young-onset dementia’s experiences with self-disclosure and how these evolved. Policies should prioritize the creation of dementia-friendly communities, while recommendations for practice include integrating empowerment interventions and peer support into post-diagnostic support. These efforts will support individuals in their self-disclosure journey, promote social engagement and reduce stigma.
... This underlines the need for a culture change to support PPI for people with dementia and carers. The cultural and organizational change should especially move away from the legacy and structure of service-led working cultures towards more user-led organizations that develop routines which allow people with dementia and carers to be themselves, and where the relationship is a genuine partnership (13,18,20,22,(60)(61)(62). Such focus could be enriched by theories from situated learning, (e.g., workplace learning (66) or social theories, such as social health, assets-based community development or social capital (31,63). ...
... It is also an opportunity for a positive approach in developing and sustaining DFIs, for example by giving positive feedback to people and places or by exchanging positive experiences and resources (10,19). Such positive belief (e.g., in an assets-based approach with a focus on the impact on people) reflects the purpose of dementia-friendliness and enables the sustainment of PPI during DFIs by shared learning, responsiveness, and the tailoring of activities (18,19,62). ...
Introduction
People with dementia and their carers experience social stigma and often refrain from social participation. Significant improvement might be achieved by creating Dementia Friendly communities (DFCs) for which dementia friendly initiatives (DFIs) are needed. DFIs are developed by a variation of stakeholders. However, people with dementia and their carers are often unrepresented herein. This study aims to get insight into the perspectives of stakeholders (e.g., health- and social care professionals, volunteers, people with dementia and their carers) about the involvement of people with dementia and their carers during the development and sustainment of DFIs.
Methods
Descriptive qualitative study, using a co-research design with a carer as co-researcher. Nineteen semi-structured interviews with stakeholders, including people with dementia and their carers, were performed. Inductive content analysis took place using Atlas Ti.
Results
Four themes were found: 1) the involvement of people with dementia and their carers is important for both people with dementia and their carers and other stakeholders; 2) personal character traits, life histories, and associated emotions evoke the need for involvement; 3) involvement requires an open, responsive stance and building relationships; and 4) the estimation of one’s own and others’ capacities influences perspectives on involvement. As such, practice what you preach means actively adopting an open, responsive approach and acknowledging the unique abilities and backgrounds of people with dementia and their carers. It emphasizes the importance of actually living by the values you advocate for.
Conclusion
Central to perspectives on involving people with dementia and their carers is the emphasis on working relationally, differing from service-led and pre-structured patient and public involvement (PPI). Working relationally calls for organizational shifts aligned with a rights-based perspective to avoid tokenism, and promotion of user-led organizations with genuine partnerships. Creative methods, problem-solving, and communication skills are essential for the development and sustainment of inclusive, supportive, person-centered DFIs. Future studies should explore the long-term impact of the involvement and working relationally on the well-being of people with dementia and their carers.
... Nonetheless, through the production of the zine, we were able to bring individuals together with a shared commitment to understanding and articulating the experiences of those living with dementia as a collective, or at least as a grouping with potentially similar experiences of a shared condition (Eichhorn, 2001;Schilt, 2004;Zobl, 2004). While the group expressed the value in being amongst others who shared their experiences, the key for them was the purposeful nature of the production of the zines (Hagan and Campbell, 2021), and the final product as a material legacy (Facer and Pahl, 2017). ...
... First-person accounts revealed how well PwD are able to explain their conditions, wishes and needs [17], and we chose to conduct exploratory qualitative interviews for the study presented here. We were especially interested in learning more about situations in participants' daily lives and social engagement that had the potential for the interviewees to retain a sense of usefulness and empowerment and to specify a more nuanced understanding of what they felt could support their feeling of self-worth. ...
This study was designed to advance our understanding of how feelings of empowerment in people living with dementia still residing at home can be promoted. We conducted qualitative interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part of a European study on mindful design for dementia. A qualitative thematic content analysis was performed to elicit the key features of the experience reported by the interviewees. Three overarching categories were identified: the first category ‘experiencing changes in personal life and coping with changes in life’ covered losses and coping strategies; the second category ‘retaining a sense of usefulness‘ included social participation and the need for activities with others; the third category ‘feeling empowered’ covered reflections on lifetime achievements, accomplishments in the present life, being in control and self-worth. Participants placed a strong emphasis on continuity and on the importance of making active decisions and meaningful social contributions. Empowerment within the person living with dementia was achieved through their interactions with their social environment, including the significance of communication about their needs and wishes and enabling shared decision-making and interactions with others in reciprocity.
... As well as missing family and friends, INCLUDE interviewees also missed the peer support and shared experiences provided by their dementia support groups; in particular, those with young-onset dementia missed the shared understanding and peer support offered by others with the same diagnosis. Again this links with the work of Sabat and colleagues regarding the social self as well as resonating with previous work on shared group identity for people with young onset dementia such as the 'collective strength' gained from such group memberships (Clare et al., 2008), and the impetus to challenge public perceptions and stigma about the condition (Hagan and Campbell, 2021). Moreover, the three INCLUDE interviewees with young onset dementia engaged with advocacy work and were comfortable with adopting a public 'dementia identity', in spite of the risk of stigma, therein also suggesting the shift from a 'deficit narrative' towards active citizenship and driving social change (Birt et al., 2017). ...
The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.
... As identity is constructed in relation with others, prevailing narratives and stigma which reduce people with dementia to the persona of 'burdensome, dysfunctional patient' can negatively impact their social identity and become internalised (Sabat, 2002;Birt et al, 2017;Hagan and Campbell, 2021). Given that relationships shape the experience of dementia and direct its impact on identity (Patterson et al, 2018), these negative impacts can be mitigated "if people relating to the diagnosed person refrain from…positioning them as lacking" (Beard, 2004: 418). ...
We investigated perceptions of identity in Alzheimer’s disease and behavioural-variant frontotemporal dementia. We asked family members of people with dementia to describe them before and after onset of the disease, comparing across type (Alzheimer’s disease versus behavioural-variant frontotemporal dementia) and time period. Family members’ perceptions of people with dementia changed over time. Compared with Alzheimer’s disease, behavioural-variant frontotemporal dementia was perceived to cause greater disruption to identity and more often associated with negative moral traits. We found a relationship between assessments of moral character and perceived self-continuity. Our data revealed different ways family members navigate stability and change in the identity of their loved ones with dementia.
... Whilst in health and social care and research practices the term 'co-production' NIHR, 2015), with joint ownership of key decisions, has become increasingly popular, there was little evidence of co-production within DFCs. This raises the question of how DFCs should continue to develop if people living with dementia are not central to their organisation, and creates a tension between what ought to happen and what is achievable (Dean et al., 2015;Hagan & Campbell, 2021;Hare, 2016). Apart from DFCs, there is an increasing body of evidence about what is important to people living with dementia (Reilly et al., 2020). ...
Background
Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement.
Methods
This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters.
Findings
All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and ‘ad hoc’ conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs.
Conclusion
The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.
... and challenging limiting perceptions of people living with dementia (Hagan & Campbell, 2021). In keeping with findings by Clark et al. (2020) andClark et al. (2021), this study highlights how the accessible and flexible nature of group TSW may be conducive to achieving these goals. ...
This study explored how music therapists may use group therapeutic songwriting (TSW) to support the dyadic relationships between people living with dementia and their family caregivers. Three registered music therapists (RMTs) with relevant clinical and/or research experience participated in semi-structured interviews. A thematic analysis of the interview data found five key concepts that may contribute to how music therapists use group TSW to support the dyadic relationship: supporting identity in context; responsiveness to diverse needs and wishes; the importance of the group; the creative process; and human rights. Findings contribute understandings about creative and supportive ways of working with people living with dementia and their family caregivers to promote relationship quality, quality of life and wellbeing. This study highlights the complexity and need for flexibility in facilitating group TSW and contributes insights into how the personal values of music therapists may influence how they work with people living with dementia and family caregivers.
