Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.21-40.
Publisher:
Sage
Befriending is a service in which volunteers provide companionship and support usually to people who are lonely or isolated. Such services are promoted in Scotland’s national strategy to improve the lives of people with dementia, around a third of whom live alone. However, little is known about the perspectives of recipients. Taking a holistic qualitative case study approach, the aim...
(Edited publisher abstract)
Befriending is a service in which volunteers provide companionship and support usually to people who are lonely or isolated. Such services are promoted in Scotland’s national strategy to improve the lives of people with dementia, around a third of whom live alone. However, little is known about the perspectives of recipients. Taking a holistic qualitative case study approach, the aim of this research was to explore how people living alone with dementia experienced befriending and the contexts in which their befriending relationships were meaningful. Three people were visited on five separate occasions. Largely unstructured conversations allowed individuals to prioritise areas of importance to them within the broad topics of befriending, everyday life, social networks and biography. Participants also had the option of ‘showing’ how they spent their time with their befriender. Data were analysed using the voice-centred relational method. Three key messages emerged: befriending satisfied unmet needs and wishes for particular kinds of relationship; befriending was a facilitated friendship; and befriending was a human response to contingent and existential limitations.
(Edited publisher abstract)
Subject terms:
dementia, social networks, friendship, befriending schemes, independent living, loneliness, social isolation, user views, case studies, qualitative research;
Dementia: the International Journal of Social Research and Practice, 18(3), 2019, p.1042–1059.
Publisher:
Sage
Aim: Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. Objectives: This literature review synthesises and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research...
(Edited publisher abstract)
Aim: Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. Objectives: This literature review synthesises and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. Methods; Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. This study did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. Findings: Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. Conclusion: By synthesising different approaches to safety and highlighting areas of debate, this study hopes to advance discussion and to contribute to the development of inclusive research methods.
(Edited publisher abstract)
Subject terms:
literature reviews, participatory research, research methods, dementia, safety, ethics, social inclusion, qualitative research;
Learning to live with a diagnosis of dementia is a complex process. Being able to talk about the diagnosis to others represents a major challenge for some people with dementia. This study explores the experiences of people with dementia, and members of their families, around the task of informing others during the six months immediately following their diagnosis of dementia. Five people...
(Publisher abstract)
Learning to live with a diagnosis of dementia is a complex process. Being able to talk about the diagnosis to others represents a major challenge for some people with dementia. This study explores the experiences of people with dementia, and members of their families, around the task of informing others during the six months immediately following their diagnosis of dementia. Five people with dementia living in the community, and their immediate family members, were recruited into an ethnographic study. Data were collected through recorded interviews and participant observation, and were analysed through a grounded theory method within a continuing iterative process. Findings suggest that participants recognised the need to tell others about their diagnosis but these conversations were difficult to initiate and manage, and hindered the processing of emotions. Findings are discussed in relation to implications for practice.
(Publisher abstract)
This training pack is aimed at staff and volunteers supporting people with learning difficulties who have or may develop dementia. It is designed to be used by a trainer or lead person for training or to promote discussion. Each section is structured around 10 topics. Sections cover: learning difficulty and dementia; understanding behaviour; developing supportive environments; responding to pain...
This training pack is aimed at staff and volunteers supporting people with learning difficulties who have or may develop dementia. It is designed to be used by a trainer or lead person for training or to promote discussion. Each section is structured around 10 topics. Sections cover: learning difficulty and dementia; understanding behaviour; developing supportive environments; responding to pain; effective communication; meaningful activities; when a friend or relative has dementia; nutrition and hydration; night-time care; and palliative care. Each section includes suggested activities, information sheets and tools, and further reading. A DVD, which includes a short drama acted out by people with a learning difficulty and discussion on the drama, accompanies the training pack.
The experiences and needs of residents and patients in nursing and care homes are very different at night, particularly for those with dementia. However, the authors suggest, homes are not always inspected with the same rigour at night and night staff do not always receive the same levels of training, resources and supervision as day staff. Although night staff have to provide the same level
The experiences and needs of residents and patients in nursing and care homes are very different at night, particularly for those with dementia. However, the authors suggest, homes are not always inspected with the same rigour at night and night staff do not always receive the same levels of training, resources and supervision as day staff. Although night staff have to provide the same level of person centred care as day staff, their primary task is often seen as the promotion of sleep. This can mean they feel compelled to get people back to bed as quickly as possible when what the resident needs is reassurance and opportunity to talk. The authors set out to provide night staff and their managers with the information, knowledge and practical skills they need to deliver positive and appropriate night-time care. Among the issues viewed as particularly pertinent to caring for older people at night are: nutrition and hydration, continence, challenging behaviour, medication, night time checking, pain management and end of life care. The authors also look at the impact of night work on staff, and offer practical suggestions to help them safeguard their own health. The final chapter provides a set of night time care guidelines for inspectors that will also help managers to evaluate night time practices in their homes.
Subject terms:
nursing homes, older people, person-centred care, standards, training, care homes, care workers;
Learning Disability Today, February 2009, pp.34-36.
Publisher:
Pavilion
Place of publication:
Hove
The research reported in this paper explores the pain experiences amongst people with a learning disability who also have dementia. The paper outlines the additional issues that need to be taken into consideration when providing care for someone with a learning disability and dementia. Areas discussed include: misunderstanding behaviour that is 'challenging', problems with communication, lack...
The research reported in this paper explores the pain experiences amongst people with a learning disability who also have dementia. The paper outlines the additional issues that need to be taken into consideration when providing care for someone with a learning disability and dementia. Areas discussed include: misunderstanding behaviour that is 'challenging', problems with communication, lack of staff knowledge about the conditions of older age and the impact of dementia, and prescription of medication.
Subject terms:
learning disabilities, medication, older people, pain, care workers, communication, dementia;
...bodies, the role of managers, causes of distress and sleep disturbance amongst residents, the need to reduce the number of checks that occurs throughout the night, the training of night staff in areas such as dementia awareness and the management of continence, guidance on appropriate noise and light levels, and strategies for developing more person-centred care at night. Recommendations are made
This report explores the night-time care experiences of residents, relatives and staff in three care homes in Scotland. This report examines the perspectives of residents, relatives, staff and care home inspectors. It identifies areas of good and poor practice, and recommends ways to make improvements through a series of interventions. Issues explored in depth include the role of regulatory bodies, the role of managers, causes of distress and sleep disturbance amongst residents, the need to reduce the number of checks that occurs throughout the night, the training of night staff in areas such as dementia awareness and the management of continence, guidance on appropriate noise and light levels, and strategies for developing more person-centred care at night. Recommendations are made for care regulators (commissioners), providers, home managers and night-time staff.
Journal of Dementia Care, 16(4), July 2008, pp.35-38.
Publisher:
Hawker
Reports on a research study which looked at night time care practices in care homes in Scotland. The first stage of the study explored the experiences, practices and perspectives of staff, residents, managers and relatives affected and/or involved in night time care. Stage two involved action research (implementation and evaluation) to determine if and how night time care could be improved through a small number of interventions. The article highlights some of the key recommendations from the study.
Reports on a research study which looked at night time care practices in care homes in Scotland. The first stage of the study explored the experiences, practices and perspectives of staff, residents, managers and relatives affected and/or involved in night time care. Stage two involved action research (implementation and evaluation) to determine if and how night time care could be improved through a small number of interventions. The article highlights some of the key recommendations from the study.
Subject terms:
older people, quality of life, residents, care homes, care workers, dementia;
British Journal of Learning Disabilities, 36(1), March 2008, pp.6-12.
Publisher:
Wiley
This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users...
This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older.
Subject terms:
learning disabilities, user views, ageing, attitudes, dementia;
This report explores the pain management needs of people with a learning difficulty who have dementia. People with a learning difficulty are living longer. This increased longevity brings with it the conditions and illnesses of older age, such as dementia. It is known that amongst people in the general population who have dementia there is inadequate pain recognition and treatment. This report...
This report explores the pain management needs of people with a learning difficulty who have dementia. People with a learning difficulty are living longer. This increased longevity brings with it the conditions and illnesses of older age, such as dementia. It is known that amongst people in the general population who have dementia there is inadequate pain recognition and treatment. This report has identified similar trends in pain management amongst people with a learning difficulty and dementia. The report explores knowledge and practice in relation to pain recognition and management amongst direct support staff, members of community learning disability teams and general practitioners. It also examines the understanding and experiences of pain amongst people with a learning difficulty and dementia. It identifies the dilemmas and obstacles to effective pain management, and reports on examples of good practice. The authors make clear recommendations for practitioners and service providers. The report found that the pain experiences and management of people with a learning difficulty who have dementia mirrored findings in relation to people in the general population. It did, however, identify extra and compounding issues in relation to people with a learning difficulty. The findings in this report will be of interest to service providers and direct practitioners in health, housing, social care and social work.