scholarly journals Communicating with library patrons and people with dementia: Tracing an ethic of care in professional communication guidelines

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 899-914
Author(s):  
Nicole K Dalmer ◽  
DG Campbell
Keyword(s):  
Interpersonal Relationships ◽  
Ethic Of Care ◽  
Service Providers ◽  
Information Service ◽  
Dementia Care ◽  
Professional Communication ◽  
Moral Principles ◽  
People With Dementia ◽  
Health And Social Care ◽  
Reference Librarians

In both library reference work and dementia care, communication between personnel and service recipients can be both complex and complicated. Professionals in both fields have therefore developed protocols and standards to assist personnel in handling these interactions. In this article we detail an exploratory comparative study that used an ethic of care framework to compare prominent guidelines for reference librarians (American Library Association’s Reference and User Services Association’s Guidelines for behavioral performance of reference and information service providers) with guidelines for workers in long-term dementia care settings (the National Institute for Health and Care Excellence’s Guideline on supporting people with dementia and their carers in health and social care). We explored how both sets of Guidelines frame the act of communication as a combination of regulated procedure and empathetic discourse to determine how the similarities among and differences between these two guidelines provide useful insights into each other. Our examination was structured using an ethic of care lens, which emphasizes the importance of interpersonal relationships, reciprocity, and empathetic benevolence. Using specific phrases in each set of Guidelines that align with and are evidence of Tronto’s four moral principles of care, we ultimately discovered, in both sets of Guidelines, an underlying ethic of care: a repeated insistence upon embedding procedures within behaviour that manifests attentiveness, responsibility, responsiveness, and competence.

scholarly journals Communicating with Library Patrons and Dementia Patients: Tracing an Ethic of Care Practice in Professional Communication Guidelines

2018 ◽  
Author(s):  
Nicole K. Dalmer ◽  
D. Grant Campbell
Keyword(s):  
Ethic Of Care ◽  
Dementia Care ◽  
Professional Communication ◽  
Care Practice ◽  
Information Communication ◽  
Dementia Patients ◽  
Reference Librarians ◽  
Initial Results ◽  
Funded Research Project

This presentation reports on the initial results ofa SSHRC-funded research project involving thecomplex interactions between information,communication and dementia. We use an ethic ofcare framework to compare prominent guidelinesfor reference librarians with guidelines forworkers in long-term dementia care settings. In so doing, we explore how both sets of guidelines frame the act of communication as a combination of regulated procedure and empathetic discourse.

scholarly journals Systematic Review Investigating Multi-disciplinary Team Approaches to Screening and Early Diagnosis of Dementia in Primary Care – What are the Positive and Negative Effects and Who Should Deliver It?

2017 ◽  
Vol 15 (1) ◽  
pp. 5-17 ◽  
Author(s):  
Toby Smith ◽  
Jane Cross ◽  
Fiona Poland ◽  
Felix Clay ◽  
Abbey Brookes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Early Diagnosis ◽  
Service Providers ◽  
Care Practice ◽  
Initial Contact ◽  
Negative Effects ◽  
People With Dementia ◽  
Health And Social Care ◽  
Early Diagnostic

Background: Primary care services frequently provide the initial contact between people with dementia and health service providers. Early diagnosis and screening programmes have been suggested as a possible strategy to improve the identification of such individuals and treatment and planning health and social care support. Objective: To determine what early diagnostic and screening programmes have been adopted in primary care practice, to explore who should deliver these and to determine the possible positive and negative effects of an early diagnostic and screening programme for people with dementia in primary care. Methods: A systematic review of the literature was undertaken using published and unpublished research databases. All papers answering our research objectives were included. A narrative analysis of the literature was undertaken, with the CASP tools used appropriately to assess study quality. Results: Thirty-three papers were identified of moderate to high quality. The limited therapeutic options for those diagnosed with dementia means that even if such a programme was instigated, the clinical value remains questionable. Furthermore, accuracy of the diagnosis remains difficult to assess due to poor evidence and this raises questions regarding whether people could be over- or under-diagnosed. Given the negative social and psychological consequences of such a diagnosis, this could be devastating for individuals. Conclusion: Early diagnostic and screening programmes have not been widely adopted into primary care. Until there is rigorous evidence assessing the clinical and cost-effectiveness of such programmes, there remains insufficient evidence to support the adoption of these programmes in practice.

scholarly journals Resource allocation decision-making in dementia care with and without budget constraints: a qualitative analysis

2020 ◽  
Vol 3 ◽  
pp. 69
Author(s):  
Fiona Keogh ◽  
Tom Pierse ◽  
Eamon O'Shea ◽  
Christine Fitzgerald ◽  
David Challis
Keyword(s):  
Decision Making ◽  
Resource Allocation ◽  
Budget Constraint ◽  
Dementia Care ◽  
Assessment Process ◽  
Nominal Group ◽  
Dementia Case ◽  
People With Dementia ◽  
Health And Social Care ◽  
Services And Supports

Introduction: Health systems in many different countries have increasingly been reorienting the delivery of dementia care to home and community care settings. This paper provides information on how health and social care professionals (HSCPs) in Ireland make decisions on resource allocation for people with dementia living at home and how resource constraints affect their decisions and choices. Methods: The study employed a balance of care approach to assess resource allocation across six dementia case types, ranging from low to high needs. Decision-making workshops were held with 24 HSCPs from a range of backgrounds. Participants were asked to allocate services and supports across dementia case types in two scenarios: allocation with and without a budget constraint. Nominal group technique was used to structure discussions around resource allocation in both scenarios. Thematic analysis was applied to analyse the qualitative data using a general inductive approach. Results: The following themes influenced allocative deliberations: whose needs are being met; what needs are identified; decision making context; decision making process; and allocation outcomes. Participants used ‘decision rules’ or heuristics to help them make decisions under fixed budget rules. Conclusions: Freedom from a budget constraint allowed HSCPs to consider a broader range of services and to take a more expansive view on what needs should be considered, with a particular emphasis on adopting a proactive, preventative approach to the allocation of resources. The effect of the budget constraint overall was to narrow all considerations, using heuristics to limit the type of needs addressed and the range of services and supports provided. The consequences were a largely reactive, less personalised system of care. The findings emphasise the need for an integrated and comprehensive assessment process that is more concerned with individualised responses rather than relying on existing models of care alone.

scholarly journals Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study

2017 ◽  
Vol 29 (7) ◽  
pp. 1213-1221 ◽  
Author(s):  
Helen Chester ◽  
Paul Clarkson ◽  
Jane Hughes ◽  
Ian Russell ◽  
Joan Beresford ◽  
...  
Keyword(s):  
Observational Study ◽  
Service Providers ◽  
Geographical Area ◽  
National Study ◽  
Structured Interviews ◽  
Major Health Problem ◽  
Home Support ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

ABSTRACTBackground:Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers.Methods:This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers.Conclusions:This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.

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.

Telling it as it is: involving people with dementia and family carers in policy making, service design and workforce development

2016 ◽  
Vol 20 (4) ◽  
pp. 219-222
Author(s):  
Ruth Marion Eley
Keyword(s):  
Workforce Development ◽  
Policy Making ◽  
Service Providers ◽  
Early Stage ◽  
Service Development ◽  
Family Carers ◽  
Content Type ◽  
Engagement Strategies ◽  
People With Dementia ◽  
Health And Social Care

Purpose The purpose of this paper is to highlight the need for proper involvement of people with dementia and carers in policy making and to suggest practical ways to achieve this. Design/methodology/approach Drawing from personal experience derived from a long career in service development in health and social care, the author outlines the importance of recognising that people with dementia and family carers are experts by experience and the merits of involving people at an early stage. Findings The best ideas come from involved people. Without the insights gained through the lived experiences of people with dementia and family carers, policy makers and professionals run the risk of developing costly services that do not meet the needs of those who will be using them. Practical implications A number of key practical pointers are developed and summarised. Engagement and one-off consultations are not enough. Real involvement has to be part of everyday practice, at all levels. It requires investment to enable people with dementia and carers to have a seat at the table, speak about what matters to them and help professionals develop relevant services that meet their needs. Originality/value The author is able to draw on particular insights gained as Programme Lead for Dementia at the Department of Health during the development of the first English National Dementia Strategy and, more recently, experience of developing engagement strategies in various localities. This included supporting people with dementia and family carers before, during and after key events at which they shared their experiences with commissioners and service providers.

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.

scholarly journals Resource allocation decision-making in dementia care with and without budget constraints: a qualitative analysis

2020 ◽  
Vol 3 ◽  
pp. 69
Author(s):  
Fiona Keogh ◽  
Tom Pierse ◽  
Eamon O'Shea ◽  
Christine Fitzgerald ◽  
David Challis
Keyword(s):  
Decision Making ◽  
Resource Allocation ◽  
Resource Constraints ◽  
Nominal Group Technique ◽  
Budget Constraint ◽  
Dementia Care ◽  
Assessment Process ◽  
Nominal Group ◽  
People With Dementia ◽  
Health And Social Care

Introduction: Health systems in many different countries have increasingly been reorienting the delivery of dementia care to home and community care settings. This paper provides information on how health and social care professionals (HSCPs) in Ireland make decisions on resource allocation for people with dementia living at home and how resource constraints affect their decisions and choices. Methods: A balance of care approach was used to assess resource allocation across six dementia case types, from low to high needs. Workshops were held with 24 HSCPs from multiple disciplines. Participants allocated services in two scenarios: allocation with and without a budget constraint. Nominal group technique was used to structure discussions around resource allocation in both scenarios. Thematic analysis was applied to analyse the qualitative data using a general inductive approach. Results: The following themes influenced allocative deliberations: whose needs are being met; what needs are identified; decision making context; decision making process; and allocation outcomes. Participants were proficient in making decisions, using ‘decision rules’ or heuristics to help them make decisions under fixed budget rules and sticking to conventional provision when constraints were in place. Conclusions: Freedom from a budget constraint allowed HSCPs to consider a broader range of services and to take a more expansive view on what needs should be considered, with a particular emphasis on adopting a proactive, preventative approach to the allocation of resources. The effect of the budget constraint overall was to narrow all considerations, using heuristics to limit the type of needs addressed and the range of services and supports provided. The consequences were a largely reactive, less personalised system of care. The findings emphasise the need for an integrated and comprehensive assessment process that is more concerned with individualised responses rather than relying on existing models of care alone.

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