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1 – 10 of 101Sarah Waller, Simon Chester Evans, Jennifer Bray and Teresa Atkinson
There is increasing interest in the UK in developing environments that support people who are neurodiverse. This paper aims to report on a project to develop a cognitively…
Abstract
Purpose
There is increasing interest in the UK in developing environments that support people who are neurodiverse. This paper aims to report on a project to develop a cognitively supportive environmental assessment tool to improve the design of health centres, where the majority of National Health Service consultations take place, for all users, including people living with dementia and those who are neurodiverse.
Design/methodology/approach
A three-stage process was used: a literature review; the development of a matrix of key design features for people living with dementia, autism and other neurodiverse conditions; and the development of an environmental assessment tool and guide for users, which included easy-to-read versions to maximise service user involvement.
Findings
The overarching concepts of dementia-friendly design can be adapted to create designs for everyone, including those who are neurodiverse.
Research limitations/implications
There is a paucity of research in environmental design for primary care from the patient’s perspective, and, more generally, further research on design for adults with learning disabilities and autism is needed.
Practical implications
The tools are free to download. With adaptation, they have potential applicability across health and care settings.
Originality/value
This project has confirmed that the principles of dementia-friendly design are applicable, with modifications, to a wider group of neurodiverse people. Critically, each person’s response to sensory stimuli is individual rather than determined by their condition.
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Caroline Duncan, Ewan Wilkinson, Sujeet Jaydeokar and Daniel James Acton
This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National…
Abstract
Purpose
This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.
Design/methodology/approach
The study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.
Findings
The authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.
Originality/value
To the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.
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Thomas Morton, Shirley Evans, Ruby Swift, Jennifer Bray and Faith Frost
The COVID-19 pandemic caused major disruption in community support for vulnerable older people and is thought to have exacerbated existing issues within UK adult social care. This…
Abstract
Purpose
The COVID-19 pandemic caused major disruption in community support for vulnerable older people and is thought to have exacerbated existing issues within UK adult social care. This study aims to examine the legacy of that disruption on how meeting centres for people affected by dementia have been impacted in continually evolving circumstances.
Design/methodology/approach
Semi-structured interviews and focus group discussions were conducted at three meeting centre case study sites. Ninety-eight participants, including people living with dementia, family carers, staff, volunteers, trustees and external partners, were asked about the impact and legacy of the pandemic upon meeting centres. A thematic analysis was carried out on the data.
Findings
Ten themes were identified: ability to re-open venues; increased health decline and loss of members due to isolation; closure or halting of linking services and dementia community support; disruption to diagnosis and referrals; increase in outreach, building communities and overall reach; digital access and use of technology (boom and decline); changes to carer involvement and engagement; continued uncertainty and changes to funding, resources and governance; staff and volunteer recruitment issues; and relief at/wish for return to pre-pandemic norms.
Originality/value
This paper offers new insight into a still-developing situation, namely, the legacy effects of the pandemic upon third-sector community support for people affected by dementia and the health and social care services that support it. The reduction in maintenance of pandemic-era technological innovations is a key finding.
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Anya Ahmed, Lorna Chesterton and Matthew J. Ford
The purpose of this paper is twofold: to explore the existing evidence around dementia services and interrogate the overarching UK policy development relating to service inclusion…
Abstract
Purpose
The purpose of this paper is twofold: to explore the existing evidence around dementia services and interrogate the overarching UK policy development relating to service inclusion of black and minoritised groups. The paper will go on to identify the implications for the dementia wellness pathway and make recommendations regarding how services can be more inclusive.
Design/methodology/approach
This paper examines the policy/practice landscape around dementia care provision and observes if lessons can be learnt to improve health outcomes for people living with dementia from black and minoritised communities.
Findings
A review of dementia policy demonstrates how opportunities to improve the awareness, diagnosis and post-diagnostic support for minoritised communities are being missed. The outcomes of this mean that individuals are denied vital treatment and support, which could enhance quality of life and delay the progression of dementia.
Practical implications
The authors’ premise is that not meeting the dementia support needs of less-heard communities has negative financial as well as social and health-related outcomes and has wider resonance and implications for all stages of the dementia wellness pathway. Moreover, there is a legal responsibility for public services to provide culturally sensitive, responsive, appropriate and available care, to all people, without discrimination.
Originality/value
This paper offers a valuable review of policy and practice around dementia care in the UK and makes recommendations to improve health outcomes for people living with dementia from black and minoritised communities.
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Catrin Hedd Jones, Diane Seddon, Katherine Algar-Skaife, Carol Maddock and Stephanie Green
This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those…
Abstract
Purpose
This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.
Design/methodology/approach
This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.
Findings
This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.
Research limitations/implications
Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.
Originality/value
This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.
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Anas Shehadeh, Sharyn Hunter and Sarah Jeong
This study aims to describe the current conceptualisation of self-management of dementia by family carers in the literature and from the views of dementia professionals and family…
Abstract
Purpose
This study aims to describe the current conceptualisation of self-management of dementia by family carers in the literature and from the views of dementia professionals and family carers, and to establish a more comprehensive concept of self-management of dementia by family carers.
Design/methodology/approach
A hybrid concept analysis included three phases: the theoretical phase reviewed the literature on self-management of dementia by family carers; the fieldwork phase interviewed professionals and family carers; and the analytical phase synthesised and discussed the findings from the previous two phases.
Findings
The findings revealed that self-management of dementia by family carers encompasses four domains: supporting care recipients, self-care, sustaining a positive relationship with care recipients, and personal characteristics and skills.
Originality/value
The findings highlighted the essential elements of the construct of self-management of dementia by family carers. The findings can be used as a conceptual framework of self-management and are useful in designing and evaluating self-management support interventions for family carers.
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Louise Margaret Prendergast, Gill Toms, Diane Seddon, Carys Jones, Bethany Fern Anthony and Rhiannon Tudor Edwards
The purpose of this paper is to share the learning concerning how services and the paid carers working in them can support people living with dementia (PLWD) and their unpaid…
Abstract
Purpose
The purpose of this paper is to share the learning concerning how services and the paid carers working in them can support people living with dementia (PLWD) and their unpaid carers to overcome social isolation. This learning comes from the key findings from a Social Return on Investment (SROI) evaluation of a Shared Lives (SL) Day support service, known as TRIO.
Design/methodology/approach
SROI is a form of cost-benefit analysis that captures and monetises stakeholder outcomes. The SROI evaluation included a rapid evidence review, an interview study and a questionnaire study. The learning shared is drawn from the interview and questionnaire data that explored the reported outcomes relating to social connection, which included data related to participating in meaningful activities, confidence and independence.
Findings
PLWD who accessed the SL Day support service experienced better social connection, a sense of control over their activities (including their social activities) and community presence. A key foundation of these outcomes was the meaningful relationship that developed between the PLWD, their unpaid carer and the paid carer.
Research limitations/implications
This evaluation was a pilot study with a small, albeit representative sample size.
Practical implications
The learning suggests feasible and effective ways for paid carers to support the social connection of PLWD and their unpaid carers with their wider community.
Originality/value
There has been little exploration of how community-based short breaks (like SL Day support) can enhance social connection. The authors drew on a social relational model lens to illustrate how this service type had supported successful outcomes of community and social inclusion for PLWD.
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Ane Bast, Marit Engen and Maria Røhnebæk
This paper aims to explore the role of frontline employees (FLEs) as mediators in transformative service processes within services targeting vulnerable users.
Abstract
Purpose
This paper aims to explore the role of frontline employees (FLEs) as mediators in transformative service processes within services targeting vulnerable users.
Design/methodology/approach
This paper is based on a case study of the development and implementation of a dementia village, and the data consist of documents, in-depth interviews and field observations.
Findings
The analysis identifies FLEs as mediators in six different roles. These roles highlight how FLEs perform as mediators, acting in between and for vulnerable users and thus supporting their well-being. Specifically, the roles explicate the mediating role of FLEs in the design and planning of transformative changes and in daily work practices.
Practical implications
The different mediating roles of FLEs presented here should inform care providers and managers of how employees can become assets for supporting vulnerable users’ well-being during the design and planning stages of transformative change and through daily service work.
Originality/value
This paper offers novel insights into the multifaceted roles of FLEs in transformative services. The findings add to the current debate on mediation in transformative services and contribute to the literature by extending and refining the established conceptual and empirical understandings of the role of transformative service mediators in consumers’ well-being.
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Najah Shawish, Mariam Kawafha, Andaleeb Abu Kamel, Dua’a Al-Maghaireh and Salam Bani Hani
This study aims to explore the effects of cat-assisted therapy (Ca-AT) on a patient in their homes, specifically investigating the effects on patient’s memory, behavioral…
Abstract
Purpose
This study aims to explore the effects of cat-assisted therapy (Ca-AT) on a patient in their homes, specifically investigating the effects on patient’s memory, behavioral pathology and ability to perform activities of daily living, independently.
Design/methodology/approach
A case study design was used in patient’s homes using three measuring scales, namely, Mini-Mental State Examination (MMSE), Barthel index (BI) and Behavioral Pathology in Alzheimer’s Disease (AD) Rating Scale.
Findings
The MMSE and BI mean scores were increased, whereas the Behavioral Pathology mean score was decreased. Patient negative behaviors were improved specifically, aggressiveness, anxieties, phobias, and caregiver burden was decreased.
Practical implications
Patients with AD could significantly benefit from Ca-AT in their own homes, and it could decrease caregiving burden.
Originality/value
Ca-AT is a newly developed type of animal-assisted therapy that uses cats to treat patients, especially elderly people with AD, in their homes.
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Jurgen Grotz, Lindsay Armstrong, Heather Edwards, Aileen Jones, Michael Locke, Laurel Smith, Ewen Speed and Linda Birt
This study aims to critically examine the effects of COVID-19 social discourses and policy decisions specifically on older adult volunteers in the UK, comparing the responses and…
Abstract
Purpose
This study aims to critically examine the effects of COVID-19 social discourses and policy decisions specifically on older adult volunteers in the UK, comparing the responses and their effects in England, Scotland, Wales and Northern Ireland, providing perspectives on effects of policy changes designed to reduce risk of infection as a result of COVID-19, specifically on volunteer involvement of and for older adults, and understand, from the perspectives of volunteer managers, how COVID-19 restrictions had impacted older people’s volunteering and situating this within statutory public health policies.
Design/methodology/approach
The study uses a critical discourse approach to explore, compare and contrast accounts of volunteering of and for older people in policy, and then compare the discourses within policy documents with the discourses in personal accounts of volunteering in health and social care settings in the four nations of the UK. This paper is co-produced in collaboration with co-authors who have direct experience with volunteer involvement responses and their impact on older people.
Findings
The prevailing overall policy approach during the pandemic was that risk of morbidity and mortality to older people was too high to permit them to participate in volunteering activities. Disenfranchising of older people, as exemplified in volunteer involvement, was remarkably uniform across the four nations of the UK. However, the authors find that despite, rather than because of policy changes, older volunteers, as part of, or with the help of, volunteer involving organisations, are taking time to think and to reconsider their involvement and are renewing their volunteer involvement with associated health benefits.
Research limitations/implications
Working with participants as co-authors helps to ensure the credibility of results in that there was agreement in the themes identified and the conclusions. A limitation of this study lies in the sampling method, as a convenience sample was used and there is only representation from one organisation in each of the four nations.
Originality/value
The paper combines existing knowledge about volunteer involvement of and for older adults.
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