scholarly journals Co‐designing toolkits to improve post‐diagnostic support for people living with dementia, care partners and health and social care professionals (COGNISANCE)

2021 ◽  
Vol 17 (S8) ◽  
Author(s):  
Jane Wilcock ◽  
Marie Poole ◽  
Henry Brodaty ◽  
Louise Robinson ◽  
Greta Rait ◽  
...  
Keyword(s):  
Social Care ◽  
Dementia Care ◽  
Care Partners ◽  
Health And Social Care ◽  
Diagnostic Support

scholarly journals Engagement with a diverse Stakeholder Advisory Council for research in dementia care

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sara S. Masoud ◽  
Ashlie A. Glassner ◽  
Neela Patel ◽  
Mayra Mendoza ◽  
Deborah James ◽  
...  
Keyword(s):  
Stakeholder Engagement ◽  
Social Care ◽  
Family Care ◽  
Research Process ◽  
Dementia Care ◽  
Advisory Council ◽  
Structured Interviews ◽  
Care Research ◽  
Care Partners ◽  
Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

scholarly journals Engagement with a Diverse Stakeholder Advisory Council for Research in Dementia Care

2021 ◽  
Author(s):  
Sara Suzanne Masoud ◽  
Ashlie A. Glassner ◽  
Neela Patel ◽  
Mayra Mendoza ◽  
Deborah James ◽  
...  
Keyword(s):  
Stakeholder Engagement ◽  
Social Care ◽  
Family Care ◽  
Research Process ◽  
Dementia Care ◽  
Advisory Council ◽  
Structured Interviews ◽  
Care Research ◽  
Care Partners ◽  
Health And Social Care

Abstract Background The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. Methods To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. Results Interviews (N=11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n=2); family care partners (n=4), and health and social care professionals in dementia care (n=5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. Conclusions Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

scholarly journals Does the advice requested by carers of people who live with dementia reflect the level of commissioned post-diagnostic support? A retrospective evaluation of calls to the Me2U dementia day centre 24-hour advice line

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S337-S337
Author(s):  
Rajan Nathan ◽  
Stephen Callaghan ◽  
Kelly Walker ◽  
Angela Mason ◽  
Rosemarie Whittington
Keyword(s):  
Social Care ◽  
Social Issues ◽  
Urgent Care ◽  
Retrospective Evaluation ◽  
Common Time ◽  
Health And Social Care ◽  
The Mean ◽  
Unplanned Admissions ◽  
The Impact ◽  
Diagnostic Support

AimsThe aim was to examine the reasons for advice requests by carers of people who live with dementia (PLWD) that attend the Me2u dementia day centre in order to identify key explanatory themes. We hypothesised that requests were related mainly to coordinating care and clinical issues due to limited post-diagnostic support (PDS) in our area.BackgroundThe Me2u dementia day centre (Merseyside) cares for PLWD and also supports carers. As part of the service, a 24-hour advice line is included for PLWD and their carers who attend the centre. Locally, there is limited PDS and most carers navigate the health and social care system alone mirroring the findings by the National Collaborating Centre for Mental Health (NCCMH).MethodWe undertook a retrospective evaluation of 244 advice calls, from 64 carers, between 01/06/2019 and 31/12/2019. We analysed time of call, type of advice, type of dementia, age and whether the advice was for the PLWD or for the carer.ResultOf the 244 calls, the most common time to call was between 09.00 - 14.00 (n = 168; (68.8%) peak 09.00 - 10.00 (n = 38). Average age of the person about whom the advice was sought was 79.08 years. 91.4% of the advice calls related to PLWD (most common dementia Alzheimer's) and 8.6% to the carer only. The mean number of calls per person was 3.8 (range 1–24).Advice data were grouped into 9 broad themes namely, related to symptoms/behaviour (32.79%, n = 80), request for Me2u to coordinate care (20.08%, n = 49), general advice (14.75%, n = 36), personal care (9.42%, n = 23), carer only advice (8.60%, n = 21), social issues (6.14%, n = 15), social care (4.50%, n = 11), safeguarding (2.46%, n = 6), non-health and social care issue (1.23%, n = 3).ConclusionReasons for limited/poor PDS given by the NCCMH are; absence of named coordinators of care, over-reliance on families and carers to manage and facilitate appointments, poor recognition and management of comorbidities. This data show that 52.87% of calls were for clinical advice and coordination of care reflecting NCCMH findings. The interventions post-call reduced the impact on providers of urgent care.These findings provide support for the provision of a [24-hour] advice line as a routine part of post-diagnostic support services, especially in areas that have limited or poor PDS. Commissioners of PDS services in areas that have limited or poor PDS should make this a priority to prevent unplanned admissions to hospital and carer breakdown.

scholarly journals 211 - Changes to post-diagnostic dementia support in England and Wales during the COVID-19 pandemic

2021 ◽  
Vol 33 (S1) ◽  
pp. 13-13
Author(s):  
Alison Wheatley ◽  
Marie Poole ◽  
Louise Robinson
Keyword(s):  
Social Care ◽  
Third Sector ◽  
Full Time ◽  
England And Wales ◽  
Team Meetings ◽  
Use Of Technology ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Impact ◽  
Diagnostic Support

Background:The COVID-19 pandemic precipitated widespread change across health and social care in England and Wales. A series of lockdowns and UK Government guidance designed to reduce the spread of COVID-19 which emphasised social distancing and increased use of personal protective equipment led to changes such as increased use of remote consultation technologies and the closure of services deemed non-essential. This included many services for people with dementia and their families, such as day centres and dementia cafes.Objective:To explore the changes made to services during the pandemic and the impact of these changes on the delivery of good post-diagnostic dementia support.Method:Professionals who had previously been recruited to the ongoing PriDem qualitative study were approached for follow up interview. Eighteen interviews with a total of 21 professionals working in health, social care and the third sector were conducted using telephone or video conferencing.Interviews were audio recorded, transcribed and checked prior to thematic analysis.Results:Key themes emerging from preliminary analysis of the data include: uncertainty about the future and the need to adapt quickly to shifting guidance; changing job roles and ways of working; the emotional and physical impact of the pandemic on staff working with people with dementia and their families; and the impact of changes made (e.g. increased PPE, remote working) on the ability to deliver post-diagnostic support. However, there were also some unintended positive outcomes of the changes. These included the ability to include family members living at a distance in remote consultations, allowing for more robust history-taking, as well as the uptake of technology to facilitate cross-sector and multidisciplinary working between professionals.Conclusion:Delivering post-diagnostic dementia support during COVID-19 was challenging and forced dementia services to make adaptations. Participants expected that some of these changes would be incorporated into post-pandemic work, for example increased use of technology for multidisciplinary team meetings or blended approaches to patient-facing services involving both virtual and face to face work as appropriate. However, most participants agreed that it was not appropriate nor desirable to provide fully remote post-diagnostic support on a full time basis.

scholarly journals EXPLORING THE CRITICAL CONTRIBUTIONS OF ARTS-BASED APPROACHES IN RURAL DEMENTIA CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S399-S399
Author(s):  
Rachel Herron
Keyword(s):  
Pilot Study ◽  
Focus Groups ◽  
Social Care ◽  
Small Town ◽  
Health Sciences ◽  
Dementia Care ◽  
Meaningful Participation ◽  
Health And Social Care ◽  
Rural Places ◽  
Individual Self

Abstract People living with dementia can experience significant barriers to meaningful participation in their communities, particularly in underserviced rural and small-town settings. Drawing on a multi-method pilot study employing observations, diaries, focus groups and interviews in rural Canada, we examine the potential of an innovative dance program developed by Baycrest Health Sciences and Canada’s National Ballet School, to transform the experiences of people living with dementia and the rural places in which they live. Our findings identify moments, processes, and places of transformation throughout the program including moments of individual self-expression; changing interactions with staff, volunteers, and carers; and changing relationships with home and community. We argue that art-based programs can challenge dominant assumptions about people living with dementia and contribute to the creation of more just health and social care in rural places. In doing so, we illustrate the value of critical arts-based approaches to aging in rural places.

scholarly journals Workforce development in dementia care through education and training: an audit of two counties

2016 ◽  
Vol 11 (2) ◽  
pp. 112-121 ◽  
Author(s):  
Andrea Mayrhofer ◽  
Claire Goodman
Keyword(s):  
Workforce Development ◽  
Social Care ◽  
Education And Training ◽  
Development Planning ◽  
Dementia Care ◽  
Content Type ◽  
People With Dementia ◽  
Health And Social Care ◽  
Care Health ◽  
And Training

Purpose – People with dementia require care at home, in care homes and in hospitals, which has implications for the current and future workforce in health and social care. To inform regional workforce development planning in dementia care, Health Education East of England commissioned an organisational audit of current dementia training at NHS Trusts and in social care across Hertfordshire and Bedfordshire. The paper aims to discuss this issue. Design/methodology/approach – Qualitative methods and non-probability purposive sampling were used for recruitment and data collection. The audit included NHS Trusts, local authorities, clinical commissioning groups, and health and social care organisations involved in commissioning and providing dementia education and training in the two counties. Findings – Whilst there was considerable investment in dementia awareness training, learning was not targeted, assessed or structured to ensure on-going professional development. Practical implications – This has implications for workforce development and career-progression for staff responsible for the care of older people with dementia. Conclusion: if a future workforce is expected to lead, coordinate, support and provide dementia care across health and social care, a qualifying curriculum could play a critical part in ensuring quality and consistency of approach and provision. Originality/value – This paper makes a timely contribution to discussions on the skills and competencies needed to equip the future workforce for dementia care across health and social care.

scholarly journals 305 - What happens before, during and after crisis for someone with dementia living at home

2020 ◽  
Vol 32 (S1) ◽  
pp. 62-63
Author(s):  
Sabarigirivasan Muthukrishnan ◽  
Jane Hopkinson ◽  
Kate Hydon ◽  
Lucy Young ◽  
Cristie Howells
Keyword(s):  
Hospital Admission ◽  
Social Care ◽  
Dementia Care ◽  
Home Treatment ◽  
List Type ◽  
Crisis Resolution ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia ◽  
At Home

Background:Best practice in dementia care is support in the home. Yet, crisis is common and can result in hospital admission. Home-treatment of crisis is an alternative to hospital admission that can have better outcomes and is the preference of people living with dementia.Purpose:To report an investigation of the management of crisis for people with dementia living at home and managed by a Home Treatment Crisis Team.Objective:To identify critical factors for successful resolution of crisis and avoidance of hospital admissionMethods:The research was mixed-methods case study design. It was an in depth investigation of what happens during crisis in people with dementia and how it is managed by a home treatment crisis team to resolution and outcome at six weeks and six months. Methods were observation of the management of crisis in the home setting for 15 people with dementia (max 3 per person, total 41 observations), interviews with people with dementia (n=5), carers (n=13), and 14 professionals (range 1 to 6 per person, total 29), a focus group with professionals (n=9) and extraction from medical records of demographics and medical history.The analysis focused on the identification of key treatments, behaviours, education and context important for home treatment to prevent hospital admission.Findings:The study recruited 15 of the 88 accepted referrals to the service for management of a crisis in a person with dementia.Factors key for crisis resolution were a systems approach with embedded respect for personhood,attention to carer needs independently of the person with dementia,review and monitoring of the effect of medications,awareness and promotion of potential benefits with treatment at home,education of the health and social care workforce in dementia care, local availability of respite and other social care services.The Home Treatment Crisis Team created a ‘Safe Dementia Space’ for the person with dementia in crisis. In the first instance, this was immediate but temporary with on-going assessment and intervention until negotiated permanent support was in place coproduced and agreed by stakeholders to be a sustainable dementia space with acceptable risk of harm to the person with dementia or others. The approach enabled avoidance of hospital admission in more than 80% of referrals.Conclusion:This is the first study to collect data during crisis at home for people with dementia and to investigate process and management. It reveals the Home Treatment Crisis Team created sustainable ‘Safe Dementia Space’ to enable the person with dementia to continue to live in the community during and after crisis, thus avoiding hospital admission. The identified key components of the management approach for crisis resolution are important considerations in the design and delivery of home treatment services for people with dementia in the UK and beyond.

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