scholarly journals Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-590
Author(s):  
Mauricio Molinari Ulate ◽  
Jem Bhatt ◽  
Jennifer Lynch ◽  
Katrina Scior ◽  
Georgina Charlesworth ◽  
...  
Keyword(s):  
Public Involvement ◽  
Adverse Reactions ◽  
Psychosocial Health ◽  
Patient And Public Involvement ◽  
Dementia Diagnosis ◽  
Factors Influencing ◽  
People With Dementia ◽  
Complex Process ◽  
Diagnosis Of Dementia

Abstract Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.

scholarly journals The role of patient and public involvement in oral health and HIV/AIDS research, practice and policy

Oral Diseases ◽  
2020 ◽  
Vol 26 (S1) ◽  
pp. 117-122 ◽  
Author(s):  
Vaishali Sharma Mahendra ◽  
Amitha Ranauta ◽  
Anandi Yuvraj ◽  
Anthony J. Santella ◽  
Aditia Taslim ◽  
...  
Keyword(s):  
Oral Health ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Practice ◽  
Aids Research ◽  
Hiv Aids

‘Patient Zero’

2013 ◽  
Vol 17 (1) ◽  
pp. 5-21
Author(s):  
Stephen J. Macdonald ◽  
David Taylor-Gooby
Keyword(s):  
General Practitioners ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
North East ◽  
The North ◽  
Advisory Groups ◽  
Healthcare It ◽  
Health Practitioners ◽  
Major Shift

Over the last three years, there has been a major shift in healthcare policy within England. This has radically altered the relationship between General Practitioners (GPs) and patients. This article examines the role of patient and public involvement within the National Health Service (NHS) from the perspective of volunteers and health practitioners. The aim of the study is to explore how different models of patient and public involvement (PPI) are characterised through ideological perspectives which construct the goals and motivations of service users and health practitioners. This article draws on data from a small qualitative study of 16 participants analysing different narratives and experiences of patient and public involvement within the North East of England. The study analyses data from health professionals, including General Practitioners and health managers, and patient volunteers who make up part of a range of different health advisory groups in the NHS. Whilst all respondents agree about the importance of public involvement to assist localised NHS healthcare, it should be noted that what is meant by patient and public involvement in this study is somewhat unclear for people involved in the process. The research concludes by illustrating how practitioners’ and volunteers’ interpretations of patient and public involvement diverge in terms of their expressed motivations, aims, goals and expectations.

scholarly journals How do doctors deliver a diagnosis of dementia in memory clinics?

2018 ◽  
Vol 212 (4) ◽  
pp. 239-245 ◽  
Author(s):  
Jemima Dooley ◽  
Nick Bass ◽  
Rose McCabe
Keyword(s):  
Conversation Analysis ◽  
Test Scores ◽  
Cognitive Test ◽  
Future Planning ◽  
Dementia Diagnosis ◽  
People With Dementia ◽  
The Future ◽  
Diagnosis Of Dementia ◽  
Memory Clinics ◽  
Recorded Diagnosis

BackgroundDementia diagnosis rates are increasing. Guidelines recommend that people with dementia should be told their diagnosis clearly and honestly to facilitate future planning.AimsTo analyse how doctors deliver a dementia diagnosis in practice.MethodConversation analysis was conducted on 81 video-recorded diagnosis feedback meetings with 20 doctors from nine UK memory clinics.ResultsAll doctors named dementia; 59% (n = 48) approached the diagnosis indirectly but delicately (‘this is dementia’) and 41% (n = 33) approached this directly but bluntly (‘you have Alzheimer's disease’). Direct approaches were used more often with people with lower cognitive test scores. Doctors emphasised that the dementia was mild and tended to downplay its progression, with some avoiding discussing prognosis altogether.ConclusionsDoctors are naming dementia to patients. Direct approaches reflect attempts to ensure clear diagnosis. Downplaying and avoiding prognosis demonstrates concerns about preserving hope but may compromise understanding about and planning for the future.Declaration of interestNone.

scholarly journals Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

2017 ◽  
Vol 22 (6) ◽  
pp. 723-729 ◽  
Author(s):  
Dianne Gove ◽  
Ana Diaz-Ponce ◽  
Jean Georges ◽  
Esme Moniz-Cook ◽  
Gail Mountain ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
People With Dementia

scholarly journals Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

2020 ◽  
Vol 5 (1) ◽  
Author(s):  
Lauren Cross ◽  
Lauren Emma Carson ◽  
Amelia Jewell ◽  
Margaret Heslin ◽  
David Osborn ◽  
...  
Keyword(s):  
Health Research ◽  
Linked Data ◽  
Public Involvement ◽  
Data Linkage ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Health Records ◽  
Complex Process ◽  
Governance Challenges ◽  
Full Approval

IntroductionThe use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. ObjectivesWe reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. MethodsThematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. ResultsFour themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. ConclusionsSecuring Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research.

scholarly journals Understanding the role of patient and public involvement in renal dietetic research

2017 ◽  
Vol 4 (2) ◽  
pp. 23-32 ◽  
Author(s):  
Andrew Morris ◽  
Deborah Biggerstaff ◽  
Nithya Krishnan ◽  
Deborah Lycett
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement

scholarly journals Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia

2020 ◽  
Vol 32 (5) ◽  
pp. 611-634 ◽  
Author(s):  
Michelle Parker ◽  
Sally Barlow ◽  
Juanita Hoe ◽  
Leanne Aitken
Keyword(s):  
Systematic Review ◽  
Help Seeking ◽  
Barriers And Facilitators ◽  
Qualitative Synthesis ◽  
Dementia Diagnosis ◽  
Network Support ◽  
Informal Network ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Protocol Registration

ABSTRACTObjective:To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design:A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used.Results:From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network.Conclusions:Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.

scholarly journals 324 Effect of Regular Multidisciplinary Psychotropic Review Meetings on Anti-psychotic Prescribing Practices in a Community Nursing Unit

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Barbara Giles ◽  
Lesya Gamorak ◽  
Arlene Adanza ◽  
Joy Gicale ◽  
Frances McCarthy
Keyword(s):  
Community Nursing ◽  
Inclusion Criteria ◽  
Prescribing Practices ◽  
Dementia Diagnosis ◽  
Nursing Unit ◽  
People With Dementia ◽  
Appropriate Prescribing ◽  
High Prevalence ◽  
Diagnosis Of Dementia ◽  
Antipsychotic Prescribing

Abstract Background The management of non cognitive symptoms of dementia can be challenging for people living with dementia and their carers. The risks and limited benefit of antipsychotics in this setting is well documented however despite this they still are often prescribed. A previous study at our facility in 2016 highlighted a high prevalence of antipsychotic prescribing at 35% (Bambrick, et al. 2016). As a result of this, multidisciplinary psychotropic review meetings were established and are ongoing. Methods Two wards in our community nursing unit were selected. Inclusion criteria included residency > 6 months. The case notes, medication lists (admission and current prescriptions), and psychotropic review meeting notes were reviewed. Results 43 residents were included in the study. 72% (n=31) were female. The average age was 85 years. 74% (n= 32) of residents had a documented dementia diagnosis. On admission, 7 residents were taking regular antipsychotics. 5 of these medications were subsequently either reduced or discontinued. At the time of the study, 16% (n=7) were prescribed regular antipsychotics. There was a definite indication for 3 of these (schizoaffective disorder, psychosis, paranoid depression). 1 resident had a traumatic brain injury with associated distressing symptoms with harm incidents. 3 had a dementia diagnosis with associated distressing symptoms. A further 14% (n= 6) were prescribed antipsychotics on a PRN basis. 5 had a documented diagnosis of dementia with associated distressing symptoms. None of these residents received these medications in the 4 weeks prior to the study. Conclusion Significant improvements are noted since 2016 with the overall prevalence of antipsychotic prescribing decreasing from 35% to 16%, with the majority of these prescriptions having a clear indication. It is reassuring that residents are not receiving prn medications frequently. We await the national clinical guidance on “Appropriate Prescribing of Psychotropic Medication in People with Dementia” to further guide our practice.

Dementia and frailty

2019 ◽  
pp. 579-618
Keyword(s):  
Palliative Care ◽  
Hospital Admissions ◽  
Advanced Disease ◽  
Psychological Symptoms ◽  
Management Strategies ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
The Uk ◽  
End Stage

This chapter outlines the symptoms, epidemiology, aetiology, and differential diagnosis of dementia, with emphasis on advanced disease. It discusses the role of dementia treatments, the challenges faced with advanced disease, and guides to recognition and treatment of common symptoms, including behavioural and psychological symptoms of dementia and pain. The chapter also discusses pharmacological and non-pharmacological approaches to management of dementia symptoms, highlighting the role of palliative care, when it is appropriate to refer, and terminal care. The chapter illustrates some of the controversial aspects of care. At the current rate there will be 850,000 people with dementia in the UK by 2015, and this number is forecast to increase to over 1 million by 2025 and over 2 million by 2051.This is contributing to one in four hospital admissions, with the health and social costs of dementia estimated to be more than stroke, heart disease, and cancer combined. Along with these worrying progressive epidemiological figures, we need to take into account the immense caring burden for families, carers, and society. End-stage dementia often falls between the cracks of specialization, with professionals feeling under-prepared for the intricacies of end-stage dementia management strategies. Palliative care has been slow in its involvement for multiple reasons, but primarily because dementia has a much slower disease trajectory than cancer, with an unclear prognosis.

Research involving people with dementia: a literature review

2017 ◽  
Vol 21 (2) ◽  
pp. 107-114 ◽  
Author(s):  
Emma Rivett
Keyword(s):  
Literature Review ◽  
Research And Development ◽  
Design Methodology ◽  
Public Involvement ◽  
Small Body ◽  
Patient And Public Involvement ◽  
Ethical Considerations ◽  
Ongoing Research ◽  
Content Type ◽  
People With Dementia

Purpose The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers. Design/methodology/approach The approach takes the form of a literature review. Findings Despite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored. Originality/value This paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.

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