scholarly journals Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Gina Bravo ◽  
Lieve Van den Block ◽  
Jocelyn Downie ◽  
Marcel Arcand ◽  
Lise Trottier
Keyword(s):  
Healthcare Professionals ◽  
Early Stage ◽  
Estimating Equation ◽  
Advanced Stage ◽  
Decisional Capacity ◽  
Terminal Stage ◽  
Medical Assistance In Dying ◽  
Difficult Decision ◽  
Continuous Deep Sedation ◽  
People With Dementia

Abstract Background Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. Methods We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. Results Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. Conclusions Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

Efficacy of the Liver US Score in Discriminating Early Stage Cirrhosis (F4) from Advanced Stage Chronic Hepatitis (F3)

Choonpa Igaku ◽  
2006 ◽  
Vol 33 (6) ◽  
pp. 655-663 ◽  
Author(s):  
Tetsuya NISHIURA ◽  
Hideaki WATANABE ◽  
Yoshihiko KOUNO ◽  
Masahiro ITO ◽  
Kazuyuki OOHATA ◽  
...  
Keyword(s):  
Chronic Hepatitis ◽  
Early Stage ◽  
Advanced Stage

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

Care for delirium superimposed on dementia at an early stage

2020 ◽  
Keyword(s):  
Behavioral Problems ◽  
Healthcare Professionals ◽  
Early Stage ◽  
Good Care ◽  
Structured Interviews ◽  
Ethical Considerations ◽  
Appropriate Care ◽  
Adequate Care ◽  
Insight Into ◽  
Delirium Superimposed On Dementia

Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.

A study protocol: co-designing a mobile application to enhance communication, safety and wellbeing for people living at home with early stage dementia (Preprint)

2020 ◽  
Author(s):  
Karen Davies ◽  
Bie Nio Ong ◽  
Sudeh Cheraghi-Sohi ◽  
Katherine Perryman ◽  
Caroline Sanders
Keyword(s):  
Mobile Application ◽  
Design Research ◽  
Early Stage ◽  
Design Method ◽  
Mobile Apps ◽  
Care Service ◽  
Normalisation Process Theory ◽  
Policy And Practice ◽  
People With Dementia ◽  
At Home

BACKGROUND Background: There is a growing interest in using mobile applications in supporting health and wellbeing. Evidence directly from people with dementia regarding the acceptability, usability and usefulness of mobile apps is limited. It builds on ‘My Health Guide’ which was co-designed with people with cognitive disabilities. . OBJECTIVE Objective This paper describes the protocol of a study evaluating an app designed for supporting wellbeing with people living with dementia, specifically focusing on enhanced safety through improved communication METHODS Method: The study will employ design research, using participatory qualitative research methods over three cycles of evaluation with service users, their families and practitioners. The study will be developed in partnership with a specialist home care service in England. A purposive case selection will be used to ensure that the cases exemplify differences in experiences. The app will be evaluated in a ‘walkthrough’ workshop by people living with early stage dementia and then trialled at home by up to 12 families in a ‘try-out’ cycle. An amended version will be evaluated in a final ‘walkthrough’ workshop in cycle 3. Data will be collected from at least four data sources during the try-out phase and analysed thematically (people with dementia, carers, practitioners and app usage). An explanatory, multiple-case study design will be used to synthesise and present the evidence from the three cycles drawing on Normalisation Process Theory to support interpretation of the findings. RESULTS Results: The study is ready to be implemented but has been paused to protect vulnerable individuals during the Coronavirus in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic, as well as providing insight into the challenges of social isolation arising from living with dementia CONCLUSIONS Discussion: Evaluating a mobile application for enhancing communication, safety and wellbeing for people living with dementia contributes to key ambitions enshrined in policy and practice, championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study uses a co-design method to enable the voice of users with dementia to highlight the benefits and challenges of technology and shape future development of apps that potentially enhances safety through improved communication.

Advance care planning: the future

2020 ◽  
pp. bmjspcare-2020-002304
Author(s):  
Judith Rietjens ◽  
Ida Korfage ◽  
Mark Taubert
Keyword(s):  
Advance Care Planning ◽  
Public Awareness ◽  
Care Planning ◽  
Decisional Capacity ◽  
Best Interest ◽  
Awareness Campaigns ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Improve Patient

ObjectivesThere is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.MethodsWe provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.ResultsDifferent models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.ConclusionsACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

scholarly journals Does Time-to-Chemotherapy after Primary Complete Macroscopic Cytoreductive Surgery Influence Prognosis for Patients with Epithelial Ovarian Cancer? A Study of the FRANCOGYN Group

2021 ◽  
Vol 10 (5) ◽  
pp. 1058
Author(s):  
Grégoire Rocher ◽  
Thomas Gaillard ◽  
Catherine Uzan ◽  
Pierre Collinet ◽  
Pierre-Adrien Bolze ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Epithelial Ovarian Cancer ◽  
Cytoreductive Surgery ◽  
Retrospective Cohort ◽  
Early Stage ◽  
Cohort Analysis ◽  
Recurrence Free Survival ◽  
Advanced Stage ◽  
Free Survival ◽  
Retrospective Cohort Analysis

To determine if the time-to-chemotherapy (TTC) after primary macroscopic complete cytoreductive surgery (CRS) influences recurrence-free survival (RFS) and overall survival (OS) in patients with epithelial ovarian cancer (EOC). We conducted an observational multicenter retrospective cohort analysis of women with EOC treated from September 2006 to November 2016 in nine institutions in France (FRANCOGYN research group) with maintained EOC databases. We included women with EOC (all FIGO stages) who underwent primary complete macroscopic CRS prior to platinum-based adjuvant chemotherapy. Two hundred thirty-three patients were included: 73 (31.3%) in the early-stage group (ESG) (FIGO I-II), and 160 (68.7%) in the advanced-stage group (ASG) (FIGO III-IV). Median TTC was 43 days (36–56). The median OS was 77.2 months (65.9–106.6). OS was lower in the ASG when TTC exceeded 8 weeks (70.5 vs. 59.3 months, p = 0.04). No impact on OS was found when TTC was below or above 6 weeks (78.5 and 66.8 months, respectively, p = 0.25). In the whole population, TTC had no impact on RFS or OS. None of the factors studied were associated with an increase in TTC. Chemotherapy should be initiated as soon as possible after CRS. A TTC greater than 8 weeks is associated with poorer OS in patients with advanced stage EOC.

From Bench to Bedside: New Technologies for Cancer Diagnosis and Treatment

2008 ◽  
Vol 5 (2) ◽  
Author(s):  
Michal-Ruth Schweiger ◽  
Hans Lehrach
Keyword(s):  
Cancer Diagnosis ◽  
New Technologies ◽  
Early Stage ◽  
Predictive Biomarkers ◽  
Patient Treatment ◽  
Malignant Neoplasms ◽  
Advanced Stage ◽  
Common Cause ◽  
The Us ◽  
Risk Patients

According to the centre for disease control (CDC) malignant neoplasms are the second most common cause of death in the US in 2004 (1). One of the major problems is that most of the cancers are diagnosed in an advanced stage, which prohibits curative treatment. In order to circumvent these problems, we need to develop strategies that allow identification of risk patients and tumors at an early stage. In addition, it is necessary to identify prognostic and predictive biomarkers that guide patient treatment at different stages of the disease.

scholarly journals A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 786-804
Author(s):  
Alison Ward ◽  
Diana Schack Thoft ◽  
Helen Lomax ◽  
Jacqueline Parkes
Keyword(s):  
Early Stage ◽  
Research Process ◽  
Photo Elicitation ◽  
Learning And Development ◽  
Group Discussions ◽  
Home Life ◽  
Life Long Learning ◽  
People With Dementia ◽  
Dementia Research

In dementia research, there is limited knowledge about how people with dementia experience their daily life including how they experience the services they attend. This means a lack of knowledge about how people with dementia judge the quality of services provided for them. In this study visual and creative methods were used to understand the experience of people with early stage dementia who attend an adult school, Voksenskolen for Undervisning og Kommunikation (VUK) in Denmark. The study explored the students’ experience of being a student at VUK and what it means to engage in life-long learning. Alongside the aim to evaluate the service provided for them, seen from their perspective. Photo-elicitation was used, with cameras provided to each student, who took photographs of their school and home life. Students’ photographs were used to support focus group discussions, with the images integral to the process of talking about and recalling stories. Ten students were recruited to participate in four weekly sessions. Two groups were run with five students in each group. Each session was video recorded, these sessions were then transcribed and analysed using Braun and Clarke’s thematic analysis. Visual images were found to support the students’ memory of current experiences and prompted reminiscences about the past, leading to rich descriptions about being a student at VUK and their experiences of living with dementia. Being able to attend VUK was found to be important for these students with dementia, providing them with a sense of purpose, a way to support their cognitive function and also to develop new friendships. The method provided a way for people with dementia to be active in the research process and provide their perspective about a novel service, which promotes an ethos of learning and development.

scholarly journals 343 - Best Practice Guidance on Human Interaction with Technology in Dementia – Recommendations from the INDUCT Network

2020 ◽  
Vol 32 (S1) ◽  
pp. 103-103
Author(s):  
Rose-Marie Dröes ◽  
Yvette Vermeer ◽  
Sébastien Libert ◽  
Sophie Gaber ◽  
Sarah Wallcook ◽  
...  
Keyword(s):  
Best Practice ◽  
Early Stage ◽  
Human Interaction ◽  
Target Groups ◽  
Web Based ◽  
Policy Makers ◽  
International Training ◽  
People With Dementia ◽  
Informal Carers ◽  
Care Technology

The Interdisciplinary Network for Dementia Using Current Technology, INDUCT, is a Marie Sklodowska Curie funded International Training Network that aims to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia. Within INDUCT (2016-2020) 15 Early Stage Researchers worked on projects in the areas of Technology to support every day life; technology to promote meaningful activities; and health care technology.Three transversal objectives were adopted by INDUCT: 1) To determine the practical, cognitive and social factors needed to make technology more useable for people with dementia; 2) To evaluate the effectiveness of specific contemporary technology; and 3) To trace facilitators and barriers for implementation of technology in dementia care.The main recommendations resulting from the research projects are integrated in a web-based digital Best Practice Guidance on Human Interaction with Technology in Dementia which will be presented at the congress. The recommendations are meant to be helpful for different target groups, i.e. people with dementia, their formal and informal carers, policy makers, designers and researchers, who can easily select the for them relevant recommendations in the Best Practice Guidance by means of a selection tool. The main aim of the Best Practice Guidance is to improve the development, usage and implementation of technology for people with dementia in the three mentioned technology areas.This Best Practice Guidance is the result of the intensive collaborative partnership of INDUCT with academic and non-academic partners as well as the involvement of representatives of the different target groups throughout the INDUCT project.Acknowledgements: The research presented was carried out within the Marie Sklodowska Curie International Training Network (ITN) action, H2020-MSCA-ITN-2015, grant agreement number 676265.

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