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21 – 30 of over 3000Maria Lorentzon and Karen Bryan
Respect for people with dementia and their involvement in service planning is explored, based on selected research publications and policy papers, mainly from the Department of…
Abstract
Respect for people with dementia and their involvement in service planning is explored, based on selected research publications and policy papers, mainly from the Department of Health and the Alzheimer's Society. This article supports the inclusion of people with dementia care in service planning as part of person‐centred care. Necessary adjustments to research methods and ethics committee procedures for gaining informed consent are discussed, as is the importance of ethical policy formation and implementation, in order to achieve person‐centred care. This will ensure a high degree of active involvement by people with dementia, enhancing self‐respect and responding to the needs of this often marginalised population.
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Sally Redfern, Ian Norman, Kate Briggs and Janet Askham
The aim of the study was to further our understanding of the nature of care at home for people with dementia, with particular emphasis on routines, control and care goals. Its…
Abstract
The aim of the study was to further our understanding of the nature of care at home for people with dementia, with particular emphasis on routines, control and care goals. Its objective was to examine the nature of care as a form of social organisation in the home of people with dementia whose care was at least partly provided by relatives or friends. Twenty situations were included in which the carers and people with dementia were interviewed. Each participating pair was observed for an average of nine hours.Findings cover the ways in which carers and people with dementia accomplished personal and household care through routines and exerting control, and how they dealt with aspects like setting and matching care goals. Accomplishing care is shown to be a major challenge for people with dementia and their caregivers, yet in most cases participants developed effective coping strategies. Three themes emerged from the findings: handling competing goals or means to goals, controlling the situation and maintaining a preferred sense of self. This study shows that observational research in the homes of people with dementia is feasible and, when combined with conversational interviewing, is valuable in understanding the processes of caring and what it means to live with dementia. The expertise of carers and care‐receivers in managing home care has been identified. Policies and practices that acknowledge such expertise will go some way towards encouraging and helping people to continue, and rewarding them for the vital part they play.
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Edana Minghella and Kate Schneider
This is the first of two papers that aim to propose a revised model of care for dementia based on the combined findings of a number of projects undertaken by the authors.
Abstract
Purpose
This is the first of two papers that aim to propose a revised model of care for dementia based on the combined findings of a number of projects undertaken by the authors.
Design/methodology/approach
The paper is a conceptual discussion based on the findings from a series of projects in which the key methodologies included listening to people with dementia and carers, non‐participant observation of services, and reviews of good practice, policy and literature.
Findings
This paper reports on key messages received from people living with dementia, a revised values‐base for service development and identifying the dementia journey from the perspective of those living with dementia. The framework moves away from the medical model towards understanding dementia as a long term condition that affects a number of dimensions.
Practical implications
Through understanding the dementia journey from the perspective of people living with dementia, it is possible to design and implement a range of services that help people plan for and manage their own journeys, provide interventions proactively and help prevent crises. Person‐centred outcomes can be identified, linked to, or cutting across, each of the phases the journey. Experiences are likely to improve, and resources can be targeted more efficiently and effectively.
Originality/value
The authors identify a six‐phase dementia journey from the perspective of people living with dementia, based on a set of values informed by people who have dementia and their carers.
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The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in…
Abstract
Purpose
The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers.
Design/methodology/approach
The approach takes the form of a literature review.
Findings
Despite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored.
Originality/value
This paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.
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The purpose of this paper is to describe the key elements of a major work programme on dementia, and to reflect on the practical learning derived.
Abstract
Purpose
The purpose of this paper is to describe the key elements of a major work programme on dementia, and to reflect on the practical learning derived.
Design/methodology/approach
The paper describes the whole range of programme activity, including research projects, think-pieces, action research, demonstrations, evaluations and production of resources such as films, infographics, case studies, practice guides and positive image galleries.
Findings
The active, meaningful engagement of people with dementia and their families is fundamental. Communities must engage with, and achieve equity for, all people with dementia, whatever their circumstances. Practical barriers to inclusion must be addressed if normal lives are to be continued. The human rights of people with dementia and carers must be recognised and promoted. Local grassroots community activity is the bedrock of dementia friendly communities – but this activity must be supported by strong strategic planning, commissioning and leadership. There is no template – each community must develop its own approach.
Practical implications
The paper highlights many examples of good practice which can inform the work of commissioners and practitioners, as well as wider communities. These focus particularly on good practice in engagement and involvement; and the co-production of dementia friendly communities with people with dementia.
Social implications
The programme highlights the importance of social barriers to the inclusion of people with dementia in their communities, and gives examples of communities which have tried to overcome these through attitudinal and environmental change.
Originality/value
Joseph Rowntree Foundation’s programme is highly innovative and well-regarded.
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The focus of interest in dementia in people with learning disabilities has been largely on epidemiology, prevalence, assessment and diagnosis. There has been less focus on care…
Abstract
The focus of interest in dementia in people with learning disabilities has been largely on epidemiology, prevalence, assessment and diagnosis. There has been less focus on care issues and interventions, with a paucity of research papers but a growing number of books and resource packs addressing these issues. Psychological and non‐pharmacological approaches are useful in services for people with learning disabilities and dementia, but must be delivered in line with a clear conceptual framework of dementia that aids staff in understanding what is happening to the person with dementia and the effect of their care and responses. This paper describes the most commonly used approaches, including developing an understanding of dementia, anxiety and stress reduction, life story work, reminiscence, reality orientation and validation techniques, helping peers to understand dementia, other therapeutic approaches, and understanding behaviour and dementia care mapping and their impact on the well‐being of people with learning disabilities and dementia and the people who support them.
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Lynne Mitchell and Elizabeth Burton
This paper summarises research funded by the EPSRC EQUAL programme from 2000 to 2003 to examine how neighbourhoods could be made dementia‐friendly. Design for dementia generally…
Abstract
This paper summarises research funded by the EPSRC EQUAL programme from 2000 to 2003 to examine how neighbourhoods could be made dementia‐friendly. Design for dementia generally focuses on the internal environment of dementia care homes and facilities, but most people with dementia live at home. Unless they are able to use their local neighbourhoods safely, they are likely to become effectively housebound. There is also increasing awareness of the role the outdoor environment plays in the health, independence, well‐being and cognitive function of people with dementia. The research defined dementia‐friendly neighbourhoods as welcoming, safe, easy and enjoyable for people with dementia and others to access, visit, use and find their around. It identified six design principles: familiarity, legibility, distinctiveness, accessibility, comfort and safety. A number of recommendations for designing and adapting neighbourhoods to be dementia‐friendly arose from the research.
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Teresa June Atkinson, Rebecca Oatley and Simon Evans
The purpose of this paper is to report on a scoping review of the advantages and challenges of extra care housing (ECH) provision in the UK for people living with dementia. Access…
Abstract
Purpose
The purpose of this paper is to report on a scoping review of the advantages and challenges of extra care housing (ECH) provision in the UK for people living with dementia. Access to suitable housing is a fundamental right for people living with dementia and can enable people to live as well as possible (Twyford and Porteus, 2021). Understanding the advantages and disadvantages of different models of housing with care has been identified as a research priority by people living with dementia (Barrett et al., 2016) but “there is no current consensus on the best model of specialist housing for people with dementia” (Twyford and Porteus, 2021, p. 29).
Design/methodology/approach
This scoping review identifies the advantages and disadvantages of living in ECH for people with dementia. It is the preliminary stage of a study that seeks to develop knowledge about different models of ECH for people living with dementia (Atkinson et al., 2021).
Findings
Advantages include the promotion of independence, flexible staffing, safety and security, social inclusion, physical design and integrated service provision. Disadvantages include barriers to entry, tensions between independence and support, managing advanced dementia, resourcing flexible care, managing social exclusion, loneliness and stigma and a disabling environment.
Research limitations/implications
The scoping review reinforces the need for further research into different models of ECH provision in the UK for people living with dementia. The review provides insight that is of benefit to all stakeholders involved in ECH and contributes to the development of evidence-based provision called for in the recent All Party Parliamentary Group inquiry (Twyford and Porteus, 2021).
Originality/value
This scoping review summarises the current position for people living with dementia in ECH.
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Christine Lowen, Linda Birt and Juniper West
The purpose of this paper is to understand how dementia is represented within current UK Recovery College courses and how people with dementia are involved with such courses.
Abstract
Purpose
The purpose of this paper is to understand how dementia is represented within current UK Recovery College courses and how people with dementia are involved with such courses.
Design/methodology/approach
A scoping survey was developed with seven multiple choice questions. Information was collected to find out: How many Colleges are currently offering dementia courses; have previously offered courses or plan to start offering courses; how they have developed their courses; who delivers them; who can attend; and how long courses have been running. Individual Recovery Colleges could leave contact details if they were interested in collaborating on future research projects. UK Recovery Colleges were identified using a published list (Anfossi, 2017) supplemented with internet searching. 86 e-mail messages were sent to Recovery Colleges inviting Leads/Managers to complete the survey through an electronic link.
Findings
Of the 28 (32.6 per cent) Recovery Colleges who completed the survey, 11 reported to be currently offering dementia courses, while eight planned to start doing so. Six Recovery Colleges stated they were not currently offering dementia courses, have not done so previously and have no current plans to.
Research limitations/implications
The survey results indicate variability in provision of UK Recovery College courses for people with dementia, and raise further questions about the way the courses are used, their acceptability and usefulness.
Originality/value
This service evaluation highlights the variability in what is offered, which is an important step in understanding the current service provision.
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Debbie Tolson, Louise Ritchie, Michael Smith, Margaret Mullen Brown and Steven Tolson
This paper aims to examine housing need for older people and people with dementia, with reference to Scotland. This paper also examines policy responses and tensions arising from…
Abstract
Purpose
This paper aims to examine housing need for older people and people with dementia, with reference to Scotland. This paper also examines policy responses and tensions arising from such need and looks critically at the evidence of care needs and what older people want in relation to later life conditions, including dementia.
Design/methodology/approach
Taking the Being Home: Housing and Dementia in Scotland report (2017) as a baseline descriptor, the authors have collated evidence from a range of sources to help them examine what has changed in terms of policy, practice and population ageing. Set against this backdrop, using desk-based analytical methods, the authors interrogate existing planning processes and systems in Scotland.
Findings
Scottish Spatial Planning has a policy blindness on the overwhelming evidence of the housing needs derived from an ageing population. Policy focus is geared towards the amount of housing supplied, rather than appropriate types of housing, leaving older people with little choice of suitable accommodation. A key area to improve is in establishing greater co-operation and policy synthesis between health, social, housing and planning functions. Broad policy ambition must be transferred into detailed reality for older people and people with dementia to benefit.
Originality/value
The integrated approach and in-depth analysis, linked to planning policy and housing need, is highly original and much needed.
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