Ruth Bartlett

Broadening the dementia debate : towards social citizenship

Part one: Citizenship in theory: Introduction Setting the context for broadening the debate The meaning and value of social citizenship Part two: Social citizenship in action: Thinking and talking differently Implications for health and social care practices Extending research practices Part three: Conclusion.

Modifying the Diary Interview Method to Research the Lives of People With Dementia

Debates about involving people with dementia in qualitative research are extensive, yet the range of methods used is limited. Researchers tend to rely on interview and/or observation methods to collect data, even though these tools might preclude participation. I modified the conventional diary interview method to include photo and audio diaries in an effort to investigate the lives of people with dementia in a participatory way. Sixteen people with dementia kept a diary—written, photo, or audio, whichever suited them best—for 1 month. The purposes of this article are to share the methodological insights gained from this process in the context of emerging literature on sensory ethnography, and to argue for the broader application of the diary interview method in dementia-related research, on the grounds that it mediates an equal relationship and makes visible the “whole person,” including the environment in which that person lives.

Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

This article examines the experiences of citizens with dementia who campaign for social change, with a particular focus on the effects of campaigning on citizenry identity and psycho-emotional well-being. In diary-interviews, 16 people with dementia recorded and described their experiences of campaigning. Findings revealed that although campaigning can be energising and reaffirming of citizen identity, because it (re)located a person within the realm of work, individuals may experience dementia-related fatigue and oppression linked to normative expectations about what someone with dementia ‘should’ be like. The discussion is linked to critical debates within disability studies about the psycho-emotional aspects of impairment and disability, and concludes that the struggle for citizenship has only just begun for people with dementia.

The emergent modes of dementia activism

ABSTRACT After decades of silencing and discrimination, people with dementia are beginning to join forces, take action and campaign for social change. Drawing on data obtained from ‘activists’ with dementia using diary interview method and participant observation, this paper considers the emergent modes of dementia activism in the context of the social movement literature, and in particular, work emphasising the role of networks in health social movements. The study identified three emergent modes of dementia activism; these were the ‘protecting-self against decline’ mode, ‘(re) gaining respect’ mode, and ‘creating connections with other people with dementia’ mode. Taken together, these modes show how a sense of elapsing time pervades this form of activism. The investigation reinforces the contention that time is a dominated force that structures human motivation and goals. Furthermore, it raises the possibility that activism can protect against decline amongst people with dementia given the appropriate temporal space.

Moving towards culturally competent dementia care: have we been barking up the wrong tree?

In the UK it is established that health and social care services for people with dementia from black and minority ethnic communities need to move towards providing evidence-based culturally appropriate care. At present, however, the evidence base available to guide professionals working with people with dementia from diverse ethnic and cultural groups is limited, and beliefs about dementia and the type of treatment and support needed have received little attention. Consequently this creates problems for service providers faced with appropriately supporting people with dementia and their families from black and minority ethnic communities.

Peer advocacy in a personalized landscape The role of peer support in a context of individualized support and austerity

Whilst personalization offers the promise of more choice and control and wider participation in the community, the reality in the United Kingdom has been hampered by local council cuts and a decline in formal services. This has left many people with intellectual disabilities feeling dislocated from collective forms of support (Needham, 2015). What fills this gap and does peer advocacy have a role to play? Drawing on a co-researched study undertaken with and by persons with intellectual disabilities, we examined what role peer advocacy can play in a context of reduced day services, austerity and individualized support. The findings reveal that peer advocacy can help people reconnect in the face of declining services, problem-solve issues and informally learn knowledge and skills needed to participate in the community. We argue that peer advocacy thus offers a vital role in enabling people to take up many of the opportunities afforded by personalization.

Scanning the conceptual horizons of citizenship

This article scans recent developments within citizenship studies and relates them to the field of dementia, specifically the ‘dementia friendly communities’ agenda. The dementia friendly communities agenda is selected for several reasons, most notably because, it is an area of practice in the field of dementia where citizenship is perhaps most clearly enacted. The aim of the article is to help with the advancement of social citizenship as a key concept for dementia studies, by using two of the latest ideas within citizenship studies; namely, understandings of citizenship as (a) occurring in ordinary places and (b) potentially enacted within the domestic sphere to explore dementia friendly communities. It is argued that the interplay between these two developments pave the way for deeper consideration and realisation of social citizenship in the context of people with dementia.

Playing with meaning: using cartoons to disseminate research findings

Cartoons are a ubiquitous form of visual communication. Yet they are often overlooked in methodological debates about dissemination. In this article, the potential of cartoons as a vehicle for processing and transmitting qualitative research findings is explored and some methodological advantages and concerns of using cartoons in this way are outlined. Discussion stems from a small-scale, experimental ‘knowledge transfer’ project located within a larger qualitative study about higher functioning men and women with dementia who campaign for social change. It concludes that cartooning can bring to life in a playful way serious issues, but as form of visual communication, cartoons are not for everyone, and must therefore be used judiciously to disseminate research findings.

Self-building safe havens in a post-service landscape: how adults with learning disabilities are reclaiming the welcoming communities agenda

Personalisation in adult social care, allied with more ‘austere’ funding of social services, is leading to a sharp decline in day care services. Support is becoming less placement-driven and instead woven into everyday spaces within the community. Consequently, support is being re-framed from ‘care’ in formal settings towards a broader effort at enabling meaningful lives nested in local neighbourhoods and ordinary spaces. This article explores what it means to live in a ‘welcoming community’ within the context of declining social care services from the perspective of adults with learning disabilities. It draws on empirical data collected from focus groups and photo diaries with adults with learning disabilities on their experiences of negotiating a life in the community. We identify a process of ‘self-building’ safe havens in ordinary British spaces, including allotments, marinas and ‘fish and chip shops’, and argue that adults with learning disabilities are reclaiming the welcoming communities agenda.

You can get in alright but you can't get out: Social exclusion and men with dementia in nursing homes: Insights from a single case study

The social exclusion of people with dementia is a problem. Older men with dementia in nursing homes are at considerable risk of social exclusion due to factors associated with age, gender, mental health status and this setting. It is not known whether older men in this situation experience it as social exclusion or not. Drawing on a detailed case study from a male participant involved in a larger study on social exclusion, this paper highlights and explores masculine experiences of, and responses to, nursing home life. In this single case study it was found that social exclusion was experienced in an economic, spatial and emotional sense, and the participant aligned himself with other men in the home and masculine behaviours, perhaps to deal with that. Implications for care home practice and research are discussed. The paper concludes that more attention needs to be paid to the influence of gender and, in particular, to the different needs and experiences of older men with dementia in receipt of care generally.