scholarly journals 198 The Next Steps: The Development of Dementia Post-diagnostic Psychoeducational Support Guidance

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Matthew Gibb ◽  
Dearbhla O'Caheny ◽  
Cecilia Craig ◽  
Emer Begley
Keyword(s):  
Literature Review ◽  
Social Care ◽  
Cost Effective ◽  
Evidence Base ◽  
Extensive Literature ◽  
Guidance Document ◽  
Additional Material ◽  
People With Dementia ◽  
Health And Social Care ◽  
Diagnosis Of Dementia

Abstract Background There is often a `care gap' where people are given a clinical diagnosis of dementia but receive no useful support. (Foley, T. et al., 2019) However, the early stages of dementia are a crucial time for supportive interventions such as advice and strategies to cope with impairments and improve wellbeing and signposting through complex healthcare systems to access key supports and services. In February 2018 the National Dementia Office (NDO) commissioned the Dementia Services Information and Development Centre (DSIDC) to develop a guidance document to support health and social care professionals (HSCPs) establish, organise and facilitate evidence-based post-diagnostic pyschoeducatonal interventions in the community. Methods The DSIDC undertook an extensive literature review examining the evidence for multi-component psychoeducational interventions. An experienced group of health and social care professionals provided additional material and expertise resulting in the development of the final guidance document. Members of the Irish Working Group of People with Dementia and the Dementia Carers Campaign Network also reviewed the document. Results The literature review found a growing evidence base for dyadic interventions. These interventions, directed at the person with dementia and their care partner, were diverse in their content, outcomes, the measures they used, their frequency and the professional background of the facilitators. They were flexible and cost-effective and drew on the HSCP's own professional knowledge, service resources and experiences of what works and what doesn't. Conclusion Dyadic interventions (and psychoeducational programmes in particular) have the potential to benefit both people with dementia and their care partners by decreasing depression and anxiety, increasing knowledge and coping skills and helping improve cognitive function. (Moon and Betts Adams, 2012) The practical guidance document developed from this review provides HSCPs with useful advice and information to facilitate the setting up and running of post-diagnostic psychoeducational support programmes.

The development of safer walking technology: a review

2015 ◽  
Vol 9 (2) ◽  
pp. 100-115 ◽  
Author(s):  
Esmé Wood ◽  
Gillian Ward ◽  
John Woolham
Keyword(s):  
Decision Making ◽  
Social Care ◽  
Evidence Base ◽  
Current Evidence ◽  
Content Type ◽  
People With Dementia ◽  
Published Evidence ◽  
Health And Social Care ◽  
Current Evidence Base ◽  
The Right

Purpose – The purpose of this paper is to gain a greater understanding of the development of safer walking technology for people with dementia through contemporary literature. Design/methodology/approach – A two stage systematic approach to searching the literature was adopted. Initially this involved searching the literature to gain a broad overview of the development of safer walking technology and the context in which it has been developed. Then, this literature was examined in detail to look at published evidence surrounding the use of safer walking technology by people with dementia. These articles were quality appraised and a meta ethnographic approach taken to synthesis of the findings. Findings – There is a small but growing body of literature within this field. Whilst there is only limited evidence to support the use of safer walking technologies for people with dementia, the evidence to date indicates great potential for its use. If provided with the right support and guidance, safer walking technology has the potential to increase freedoms and independence for people with dementia; gaining them improved access to outdoor spaces and environments to support their health and wellbeing. However, if the safer walking technology continues to be associated with only risk management it will not achieve this potential. Research limitations/implications – The published literature within this field is small and has limited generalisability as much of it was generated in recent years has been by the same small research teams, often reusing data sets. There is also very little research that examines the experience of actually using safer walking technology and even less which explores the views of people with dementia. It is evident that a greater breadth and depth of knowledge is needed within this field to develop a clearer understanding of how this technology is used and perceived by all stakeholders concerned. In particular the literature would benefit from greater consideration of the views and experiences of people with dementia themselves. Practical implications – For many people with dementia, health and social care professionals can play an important role in ensuring appropriate assessment and support in the decision-making process when using safer walking technology. However, greater support is needed in decision making for all people with dementia, especially those people not currently engaged with specialist services. Therefore greater awareness of the benefits and limitations of this technology is needed by all health and social care professionals as well as the general public. Originality/value – At the time of conducting this review the author is unaware of any other systematic search of literature or overview of research on the use of safer walking technology and its use by people with dementia. Despite this safer walking technology is growing in popularity, commonly recommended by health and social care practitioners and often marketed and purchased directly by people with dementia and their families. This review offers an insight into the development of the technology and the current evidence base for its use.

scholarly journals Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

2013 ◽  
Vol 25 (12) ◽  
pp. 2011-2021 ◽  
Author(s):  
Claire Dickinson ◽  
Claire Bamford ◽  
Catherine Exley ◽  
Charlotte Emmett ◽  
Julian Hughes ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Social Care ◽  
Evidence Base ◽  
Care Planning ◽  
Structured Interviews ◽  
Care Plans ◽  
People With Dementia ◽  
Health And Social Care ◽  
Advance Care ◽  
The Right

ABSTRACTBackground:Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.Method:This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.Results:People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.Conclusions:Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

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.

Supporting people with dementia during the COVID-19 pandemic

2021 ◽  
Vol 32 (2) ◽  
pp. 65-68
Author(s):  
Linda Nazarko
Keyword(s):  
Primary Care Practice ◽  
Social Care ◽  
Practice Nurse ◽  
Informal Support ◽  
Care Practice ◽  
Physical And Mental Health ◽  
Practice Nurses ◽  
People With Dementia ◽  
Care Workers ◽  
Health And Social Care

People with dementia have experienced great disruption to their lives due to the pandemic. Linda Nazarko highlights the way individuals have been affected and how the practice nurse can support them People with dementia and their caregivers have been severely affected by the COVID-19 pandemic. Isolation, a reduction in formal and informal support, and disruption to routine have contributed to feelings of loneliness and anxiety in people with dementia and their caregivers. The pandemic has led to staff shortages in health and social care, changes of care workers and a reduction in the level of support provided. These changes have affected the physical and mental health of people with dementia and increased their reliance on primary care. Practice nurses have a key role to play in supporting affected individuals.

scholarly journals What elements of a systems’ approach to bereavement are most effective in times of mass bereavement? A narrative systematic review with lessons for COVID-19

2020 ◽  
Vol 34 (9) ◽  
pp. 1165-1181 ◽  
Author(s):  
Emily Harrop ◽  
Mala Mann ◽  
Lenira Semedo ◽  
Davina Chao ◽  
Lucy E Selman ◽  
...  
Keyword(s):  
Systematic Review ◽  
Disaster Response ◽  
Social Care ◽  
Systems Approach ◽  
Evidence Base ◽  
System Level ◽  
Service Improvement ◽  
Current Crisis ◽  
Health And Social Care ◽  
Care Systems

Background: The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events. Aim: To synthesise the evidence regarding system-level responses to mass bereavement events, including natural and human-made disasters as well as pandemics, to inform service provision and policy during the COVID-19 pandemic and beyond. Design: A rapid systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively ( www.crd.york.ac.uk/prospero , CRD 42020180723). Data sources: MEDLINE, Global Health, PsycINFO and Scopus databases were searched for studies published between 2000 and 2020. Reference lists were screened for further relevant publications, and citation tracking was performed. Results: Six studies were included reporting on system responses to mass bereavement following human-made and natural disasters, involving a range of individual and group-based support initiatives. Positive impacts were reported, but study quality was generally low and reliant on data from retrospective evaluation designs. Key features of service delivery were identified: a proactive outreach approach, centrally organised but locally delivered interventions, event-specific professional competencies and an emphasis on psycho-educational content. Conclusion: Despite the limitations in the quantity and quality of the evidence base, consistent messages are identified for bereavement support provision during the pandemic. High quality primary studies are needed to ensure service improvement in the current crisis and to guide future disaster response efforts.

scholarly journals 96 Service Priorities for People with Dementia in Ireland: A Mixed Methods Study of Health Care Professionals

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Fiona Keogh ◽  
Tom Pierse ◽  
Eamon O'Shea
Keyword(s):  
Mixed Methods ◽  
Health Care Professionals ◽  
Social Care ◽  
Unmet Need ◽  
Budget Constraint ◽  
Similar Proportion ◽  
People With Dementia ◽  
High Dependency ◽  
Health And Social Care ◽  
Wide Range

Abstract Background Public services for people with dementia living in the community face significant resource constraints. The aims of this study are to identify an optimum mix of services for six dementia case types and to gain a greater understanding of the resource allocation decision making process. Methods Irish datasets were used to identify dementia cases types representing 46% of cases in the datasets. Vignettes were prepared for six case types ranging from low to high dependency and needs. Carers, people with dementia and health and social care professionals (HSCPs) took part in mixed methods workshops. Initial findings for the HSCPs are reported here (N=23). HSCP participants firstly quantitatively identified an optimum care package for a set of six vignettes, then qualitatively discussed the needs and individual case factors that were driving service recommendations. The quantitative exercise was repeated with a budget constraint. The sessions finished with a discussion on service and case prioritisation. Results When no budget constraint is imposed, participants recommended the use of a wide range of services. Home help, in-home respite and day care services comprised 62% of spending in this scenario. When a budget constraint was imposed, participants focused on essential care and reduced services aimed at prevention, quality of life and carer support. Resources were not redistributed between cases (e.g. from low need to higher need cases) as a similar proportion of the budget was allocated to each of the cases in both scenarios. Conclusion People with dementia living in the community and their families have a wide range of health and social care needs. Optimum dementia care packages included a wide range of services to meet these needs. However, a budget constraint resulted in a much narrower range of services with consequent implications in terms of unmet need and a reactive rather than preventive approach to care.

scholarly journals Health and social care practitioners' understanding of the problems of people with dementia‐related visual processing impairment

2019 ◽  
Vol 27 (4) ◽  
pp. 982-990 ◽  
Author(s):  
Anne McIntyre ◽  
Emma Harding ◽  
Keir X.X. Yong ◽  
Mary Pat Sullivan ◽  
Mary Gilhooly ◽  
...  
Keyword(s):  
Visual Processing ◽  
Social Care ◽  
People With Dementia ◽  
Health And Social Care

scholarly journals The Effectiveness of Mindfulness- and Acceptance-Based Interventions for Informal Caregivers of People With Dementia: A Meta-Analysis

2018 ◽  
Vol 59 (4) ◽  
pp. e363-e379 ◽  
Author(s):  
Rebecca N Collins ◽  
Naoko Kishita
Keyword(s):  
Stress Reduction ◽  
Meta Analysis ◽  
Informal Caregivers ◽  
Cost Effective ◽  
The United States ◽  
Evidence Base ◽  
Significant Heterogeneity ◽  
Moderator Variables ◽  
People With Dementia ◽  
The Impact

Abstract Background and Objectives The application of mindfulness- and acceptance-based interventions (MABIs) for informal caregivers of people with dementia (PwD) is relatively novel, and the current state of the evidence base is unclear. This meta-analysis examined the effectiveness of MABIs on reducing symptoms of depression and burden in informal caregivers of PwD. The quality of included studies was evaluated and moderator variables explored. Research Design and Methods A literature search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science, and ProQuest) was conducted from the first available date to 20 December 2016. Inclusion criteria involved studies that quantitatively investigated the impact of MABIs on depression and/or burden in informal caregivers of PwD. Results Twelve studies, providing data on 321 caregivers, were included. Most used mindfulness-based stress reduction and were conducted in the United States. The average attrition among participants was 15.83%. The pre–post effect of MABIs was large for depression and moderate for burden. These effects were largely maintained at follow-up. Significant heterogeneity of effect sizes was observed, with no significant moderators identified. Study quality varied from very poor to moderately good. Discussion and Implications The low attrition and moderate to large effects suggest that MABIs are acceptable and beneficial for informal caregivers of PwD. The lack of significant moderators could advocate services using more cost-effective forms of MABIs. Further higher-quality research is needed to improve the robustness of the evidence base and enable a meta-analysis to thoroughly examine and quantify moderator variables.

scholarly journals Why has mortality in England and Wales been increasing? An iterative demographic analysis

2017 ◽  
Vol 110 (4) ◽  
pp. 153-162 ◽  
Author(s):  
Lucinda Hiam ◽  
Danny Dorling ◽  
Dominic Harrison ◽  
Martin McKee
Keyword(s):  
Life Expectancy ◽  
Social Care ◽  
Demographic Analysis ◽  
England And Wales ◽  
Life Expectancy At Birth ◽  
Health And Social Care ◽  
Diagnosis Of Dementia ◽  
Small Decline ◽  
Post War

Objectives To understand why mortality increased in England and Wales in 2015. Design Iterative demographic analysis. Setting England and Wales Participants Population of England and Wales. Main outcome measures Causes and ages at death contributing to life expectancy changes between 2013 and 2015. Results The long-term decline in age-standardised mortality in England and Wales was reversed in 2011. Although there was a small fall in mortality rates between 2013 and 2014, in 2015 we then saw one of the largest increases in deaths in the post-war period. Nonetheless, mortality in 2015 was higher than in any year since 2008. A small decline in life expectancy at birth between 2013 and 2015 was not significant but declines in life expectancy at ages over 60 were. The largest contributors to the observed changes in life expectancy were in those aged over 85 years, with dementias making the greatest contributions in both sexes. However, changes in coding practices and diagnosis of dementia demands caution in interpreting this finding. Conclusions The long-term decline in mortality in England and Wales has reversed, with approximately 30,000 extra deaths compared to what would be expected if the average age-specific death rates in 2006–2014 had continued. These excess deaths are largely in the older population, who are most dependent on health and social care. The major contributor, based on reported causes of death, was dementia but caution was advised in this interpretation. The role of the health and social care system is explored in an accompanying paper.

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