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

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.

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S337-S337
Author(s):  
Rajan Nathan ◽  
Stephen Callaghan ◽  
Kelly Walker ◽  
Angela Mason ◽  
Rosemarie Whittington

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.


2013 ◽  
Vol 25 (7) ◽  
pp. 1107-1114 ◽  
Author(s):  
Sylwia Górska ◽  
Kirsty Forsyth ◽  
Linda Irvine ◽  
Donald Maciver ◽  
Susan Prior ◽  
...  

ABSTRACTBackground: Dementia is a major cause of disability among older people and constitutes one of the greatest challenges currently facing families and health and social care services in the developed world. In response to trends in dementia prevalence and the impact the condition has on peoples’ lives, dementia care has been placed high on the public and political agenda in the United Kingdom. However, despite significant public resources being allocated to combat the impact of the disease, recent evidence indicates that numerous challenges in relation to service provision remain. This study aimed to develop a deeper understanding of the lived experience of people with dementia regarding their service-related needs.Method: The study made use of data gathered through individual semi-structured, narrative interviews conducted with persons with experience of dementia and their unpaid carers.Results: Although participants were generally satisfied with the services they received, a number of unmet needs related to service provision were identified. In terms of diagnostic procedures the findings of this study indicate the need for early diagnosis delivered through a comprehensive assessment package. The participants also highlighted the need for well-coordinated post-diagnostic support, greater continuity of care concerning the personnel involved, and enhanced access to non-pharmacological interventions to support identity and social engagement.Conclusion: This study contributes to a better understanding of service-related needs of people with dementia in relation to diagnostic procedures and post-diagnostic support.


Author(s):  
Nilza Rogéria de Andrade Nunes ◽  
Andréa Rodriguez ◽  
Giovanna Bueno Cinacchi

This article aims to reflect on the challenges affecting people experiencing homelessness in Rio de Janeiro, Brazil, due the COVID-19 pandemic. Participatory research was carried out to identify data related to sociodemographic profile; strategies for survival; health and social care support; and access to services during the pandemic. The research methodology was co-designed with NGOs and people with lived experience of homelessness and involved conducting semi-structured questionnaires with 304 participants in 2020. The results highlighted the worsening of the situation of extreme vulnerability and poverty already experienced by this population before the pandemic. Key strategies led by Third Sector organizations to reduce the spread of the virus, to minimize the financial impact of lockdown, and to increase emotional support and information on COVID-19 were presented. The conclusions show the complexity of issues affecting these groups and the need for urgent response from public policies and Government support to guarantee their rights, dignity, and respect during and after the COVID-19 pandemic.


2018 ◽  
Vol 44 (9) ◽  
pp. 632-637 ◽  
Author(s):  
Victoria Shepherd ◽  
Richard Griffith ◽  
Mark Sheehan ◽  
Fiona Wood ◽  
Kerenza Hood

ObjectiveTo examine health and social care professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales.MethodsA cross-sectional online survey was conducted using a series of vignettes. Participants were asked to select the legally authorised decision-maker in each scenario and provide supporting reasons. Responses were compared with existing legal frameworks and analysed according to their level of concordance.ResultsOne hundred and twenty-seven professionals participated. Levels of discordance between responses and the legal frameworks were high across all five scenarios (76%–82%). Nearly half of the participants (46%) provided responses that were discordant in all scenarios. Only two participants (2%) provided concordant responses across all five scenarios.DiscussionParticipants demonstrated a lack of knowledge about the legal frameworks, the locus of authority and the legal basis for decision-making. The findings raise concern about the accessibility of research for those who lack capacity, the ability to conduct research involving such groups and the impact on the evidence base for their care.ConclusionThis is the first study to examine health and social care professionals’ knowledge and understanding of the dual legal frameworks in the UK. Health and social care professionals’ understanding and attitudes towards research involving adults with incapacity may warrant further in-depth exploration. The findings from this survey suggest that greater training and education is required.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
M. P. Pomey ◽  
M. de Guise ◽  
M. Desforges ◽  
K. Bouchard ◽  
C. Vialaron ◽  
...  

Abstract Background Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. Methods/design We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients’ experience of emotional support throughout their care trajectory. Discussion This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.


BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e039939
Author(s):  
Sahdia Parveen ◽  
Sarah Jane Smith ◽  
Cara Sass ◽  
Jan R Oyebode ◽  
Andrea Capstick ◽  
...  

ObjectivesThe aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training.DesignCross-sectional survey study. Data collection occurred in 2017.SettingsHealth and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes.ParticipantsAll health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%).OutcomesKnowledge, attitude and confidence of health and social care staff.ResultsHierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01).ConclusionThe results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.


2016 ◽  
Vol 22 (4) ◽  
pp. 263-268 ◽  
Author(s):  
Jennifer Perry ◽  
Fiona L. Mason

SummaryThe health and social care landscape in the UK is changing, and there is now, more than ever, a real need for doctors to embrace leadership and management. Evidence shows that medical leadership is associated with better outcomes for patients. Psychiatrists are particularly well suited to such roles, given the interpersonal skills and self-awareness that they develop in their training. In this article, we examine the role of the psychiatrist in leading at a patient, team and organisational level and the impact this has. We also discuss different leadership and management styles.


2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Karen Louise Bester ◽  
Anne McGlade ◽  
Eithne Darragh

Purpose “Co-production” is a process in health and social care wherein service users and practitioners work in partnership. Recovery colleges (RCs) are educational establishments offering mental health education; a cornerstone feature is that courses are designed and delivered in parity by both mental health practitioners and “peers” – people with lived experience of mental illness. This paper aims to consider, through the identification of key themes, whether co-production within RCs is operating successfully. Design/methodology/approach The paper is a systematic review of qualitative literature. Relevant concept groups were systematically searched using three bibliographic databases: Medline, Social Care Online and Scopus. Articles were quality appraised and then synthesised through inductive thematic analysis and emergent trends identified. Findings Synthesis identified three key themes relating to the impact of co-production in RCs: practitioner attitudes, power dynamics between practitioners and service users, and RCs’ relationships with their host organisations. As a result of RC engagement, traditional practitioner/patient hierarchies were found to be eroding. Practitioners felt they were more person-centred. RCs can model good co-productive practices to their host organisations. The review concluded, with some caveats, that RC co-production was of high fidelity. Originality/value RC research is growing, but the body of evidence remains relatively small. Most of what exists examine the impact of RCs on individuals’ overall recovery and mental health; there is a limited empirical investigation into whether their flagship feature of parity between peers and practitioners is genuine.


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