December 08, 2015

new journal -Dementia – The international journal of social research and practice


 
Dementia – The international journal of social research and practice

November 2015

The quest for a new methodology for dementia care research

Pages: 713-715

 

Several years ago, I interviewed Ann, who is a good friend of mine and has young onset

Alzheimer’s disease. We explored the representation of dementia as a medical syndrome and

the representation of people with the lived experience.  Ann tells things as they are and has taught me so much over the years. Her words also make me reflect on the meaning of the authentic knowledge and understandings of dementia. Working as a researcher in dementia care for over 12 years, I have gained insight into the methodological approaches and have experienced their

limitations in practice. Dementia care research demands a more collaborative approach

than that offered by the traditional quantitative vs. qualitative debates and paradigms. It

necessitates an approach which not only explores processes and journeys, but in ways that

are not dependent on verbal abilities, recall or the written word.

 

 

Couples with dementia: Positioning the ‘we'

Pages: 716-733


The aim of this article is to investigate how spouses in couples with dementia position themselves in relation to each other by analysing their use of pronouns, especially the we. The study uses joint interviews with 11 couples. Based on a quantitative analysis of pronoun use, it is argued that the pronoun we is used by all the spouses; however, it is used less frequently by the spouses with dementia in comparison with healthy spouses. A qualitative analysis of the use of the pronoun we shows that the spouses position, experience and consider themselves as a couple and that they position and experience themselves as individuals in relation to the couple. One of the challenges for couples with dementia is to be able to retain a we in face of the progression of the dementia disease. By positioning themselves in various ways, the spouses establish and negotiate quite a complex and emotionally charged web of relationships.

 

What I want to do is get half a dozen of them and go and see Simon Cowell’: Reflecting on participation and outcomes for people with dementia taking part in a creative musical project

Pages: 734-750

 
This paper presents the findings from an evaluation of a creative musical project led by Scottish Opera. The project included people with dementia and their carers in the development, writing, design and performance of a musical production about their experiences of love. The project involved professional singers, artists and choreographers from the opera company. Activities involved practice sessions and performances. People with dementia and their carers reflected on positive outcomes from the project including improved confidence; being part of a group; improved physical strength and people seeing them in a new way. Within the evaluation framework they also reported on how the project had been run and gave ideas for future development. Key elements in the success of this project were the involvement of professionals, the kudos of working with a national organisation and the performances that, while daunting, provided unique and rewarding experiences.

 

The social positioning of older people living with Alzheimer’s disease who scream in long-term care homes

Pages: 751-768

This article describes the social positioning of older people living with Alzheimer’s disease who scream in a long-term care home. Few studies have focused on the social positions taken by older people, their family and formal caregivers during interaction and their effects on screams. A secondary data analysis was conducted using Harré and Van Langenhove’s positioning theory. The results show that older people are capable of positioning and repositioning themselves in relational patterns. Family and formal caregivers position older people who scream according to their beliefs about their lived experience. They also react emotionally to older people and try to influence their behaviors. Understanding the social positioning of older people with Alzheimer’s disease brought out their capacities and their caregivers’ concerns for their well-being. Interventions should focus on these strengths and on promoting healthy relations in the triads to enhance quality of care in long-term care homes.

 

People with dementia and carers’ experiences of dementia care and services: Outcomes of a focus group study

Pages: 769-787

An ageing population and an associated increase in the prevalence of dementia are of increasing concern in the United Kingdom and worldwide. Recently, the United Kingdom and other European countries implemented national dementia strategies to address this. This paper reports on the outcomes of a focus group study involving people with dementia and carers on their experiences of dementia care and support services in relation to government and third sector agencies’ objectives and recommendations. Three focus groups comprising carers and people with dementia (n = 27) were undertaken covering topics related to experiences, service receipt, information sharing and service development. Some participants experienced difficulties or delays in receiving a dementia diagnosis and in accessing appropriate care. The provision of training, timeliness of information, access to appropriate advice, and consistent and flexible services were deemed important. The findings suggest that some issues raised by participants were highlighted in earlier policy objectives and recommendations but remain of central concern. The projected growth in the number of people with dementia coupled with reduced availability of informal care and increased demand for services emphasises the need to transform dementia care in the United Kingdom.

 

Privileging place: Reflections on involving people with dementia in a residency

Pages: 788-799

Although attention is paid to involving people with dementia as collaborators in research, the issue of place – where involvement actually occurs – has been neglected. This is significant because we know from the academic literature that places can adversely affect social relations and a person’s ability to participate as equal partners. This paper privileges place and documents our experiences of running residencies in the English Lake District with people with dementia – Houston, Gardiner and Wallace all have some form of dementia. In doing so we provide a model to reference for involving people with dementia in research and knowledge production, while simultaneously strengthening the evidence base for the residency as a method for participatory research. People with dementia participated in two residencies to co-produce a touring exhibition and educational resource as part of a research dissemination project. We found that by privileging place a more equitable, productive, healthier, and respectful way of involving people with dementia as collaborators in research dissemination could be realised. The project has wider implications for the involvement of people with dementia in not only research, but also public consultations, service evaluations, and policy-related work.

 

Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies

Pages: 800-824

It is essential to understand the experience of living with dementia from the perspective of the person with dementia so that services can be appropriately constructed. This review paper, drawing on prior work, identifies key strategies for the meaningful inclusion of persons with dementia within qualitative research studies, it examines the articulation of these strategies and shares how these strategies were operationalised within one national research study in Ireland. Strategies within the literature were categorised and then synthesized into a guide consisting of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE). The CORTE guideline was used to as a tool for analysing relevant research reports. CORTE is a synthesized account of grouped strategies that could be used to maximize the meaningful involvement of persons with dementia and can also provide a guide for reporting the strategies used so that researchers can learn from each other.

 

Dignity and care for people with dementia living in nursing homes

Pages: 825-841

This article presents and discusses findings from a qualitative study on how the dignity of patients with dementia is preserved or harmed when they live in a nursing home. The results build on participant observation in two nursing home wards, combined with qualitative interviews with seven relatives of patients with dementia. The most important issue for relatives was that their family member with dementia was confirmed as a relational human being. However, relatives experienced lack of resources and task-centred care as threats to confirming, relational care and to patients' dignity. Findings from participant observations confirmed this. In this article, we argue that care which focuses on the residents' personhood, combined with a relational focus, is of great importance in maintaining the dignity of people with dementia living in nursing homes.

 

The experience of family carers attending a joint reminiscence group with people with dementia:

A thematic analysis

Pages: 842-859

Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care.
 
 
 

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