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End-of-life issues in advanced dementia

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https://www.readbyqxmd.com/read/29133281/should-medical-assistance-in-dying-be-extended-to-incompetent-patients-with-dementia-research-protocol-of-a-survey-among-four-groups-of-stakeholders-from-quebec-canada
#1
Gina Bravo, Claudie Rodrigue, Vincent Thériault, Marcel Arcand, Jocelyn Downie, Marie-France Dubois, Sharon Kaasalainen, Cees M Hertogh, Sophie Pautex, Lieve Van den Block
BACKGROUND: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence...
November 13, 2017: JMIR Research Protocols
https://www.readbyqxmd.com/read/29106536/the-intersection-of-intellectual-disability-and-dementia-report-of-the-international-summit-on-intellectual-disability-and-dementia
#2
Karen Watchman, Matthew P Janicki
An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues)...
November 2, 2017: Gerontologist
https://www.readbyqxmd.com/read/29040344/dilemmas-for-guardians-of-advanced-dementia-patients-regarding-tube-feeding
#3
Efrat Gil, Maayan Agmon, Ayal Hirsch, Miriam Ziv, Anna Zisberg
Background: advanced dementia is an incurable illness, its last stage marked by inability to eat. Tube feeding was deemed a helpful solution at this stage, but in recent years its inefficiency has been proved, and it is no longer practiced in many countries around the world. In Israel, however, the procedure is still accepted. In the gastroenterology department at the Bnai Zion Medical Center, a serious interaction is ongoing with patients' legal guardians, where detailed information is given about the inefficiency of the tube procedure...
October 13, 2017: Age and Ageing
https://www.readbyqxmd.com/read/28866906/end-of-life-care-for-advanced-dementia-patients-in-residential-care-home-a-hong-kong-perspective
#4
James K H Luk, Felix H W Chan
Dementia will become more common as the population ages. Advanced dementia should be considered as a terminal illnesses and end-of-life (EOL) care is very much needed for this disease group. Currently, the EOL services provided to this vulnerable group in Hong Kong, especially those living in residential care homes, is limited. The usual practice of residential care homes is to send older residents with advanced dementia to acute hospitals when they are sick, irrespective of their wish, premorbid status, diagnoses and prognosis...
August 28, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/28827062/the-effectiveness-of-advance-care-planning-in-improving-end-of-life-outcomes-for-people-with-dementia-and-their-carers-a-systematic-review-and-critical-discussion
#5
REVIEW
Josie Dixon, Maria Karagiannidou, Martin Knapp
CONTEXT: End of life care for people with dementia can be poor, involving emergency hospital admissions, burdensome treatments of uncertain value and under-treatment of pain and other symptoms. Advance care planning (ACP) is identified, in England and elsewhere, as a means of improving end of life outcomes for people with dementia and their carers. OBJECTIVE: To systematically and critically review empirical evidence concerning the effectiveness of ACP in improving end of life outcomes for people with dementia and their carers...
August 4, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28731379/quasi-experimental-evaluation-of-a-multifaceted-intervention-to-improve-quality-of-end-of-life-care-and-quality-of-dying-for-patients-with-advanced-dementia-in-long-term-care-institutions
#6
René Verreault, Marcel Arcand, Lucie Misson, Pierre J Durand, Edeltraut Kroger, Michèle Aubin, Maryse Savoie, Thomas Hadjistavropoulos, Sharon Kaasalainen, Annick Bédard, Annie Grégoire, Pierre-Hughes Carmichael
BACKGROUND: Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. AIM: To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. DESIGN: Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period...
July 1, 2017: Palliative Medicine
https://www.readbyqxmd.com/read/28676293/attitudes-toward-advance-directives-among-patients-and-their-family-members-in-china
#7
Lin Kang, Xiao-Hong Liu, Jing Zhang, Pei-Yan Shan, Jie-Ping Wang, Ping Zhong, Xiao-Hong Du, Yu-Feng Du, Bao-Cheng Yu, Nan Wei, Hui-Ling Lou, Ou Bian, Huai-Hong Chen, Fan Lin, Hong-Lian Zhou, Wen He, Huai-Cong Long, Lu-Rong Hong, Hui Su, Jun-Nan Yang, Yong-Liang Jiang, Ye Shi, Jing Ning, Fang Liang, Zhong Wang, Ting Gong, Ming-Lei Zhu, Xiao-Hong Ning, Zhi-Jun Chen, Liang-Kung Chen
OBJECTIVES: Chinese people are generally unfamiliar with the concept of advance care planning or advance directives (ACP/ADs), which raises dilemmas in life-support choice and can even affect clinical decision making. To understand and address the issues involved better, we investigated the awareness of ACP/ADs in China, as well as people's attitudes toward medical autonomy and end-of-life care. DESIGN: A multicenter cross-sectional survey, conducted from August 1 to December 31, 2016...
July 1, 2017: Journal of the American Medical Directors Association
https://www.readbyqxmd.com/read/28659013/-there-s-a-catch-22-the-complexities-of-pain-management-for-people-with-advanced-dementia-nearing-the-end-of-life-a-qualitative-exploration-of-physicians-perspectives
#8
Bannin De Witt Jansen, Kevin Brazil, Peter Passmore, Hilary Buchanan, Doreen Maxwell, Sonja J McIlfatrick, Sharon M Morgan, Max Watson, Carole Parsons
BACKGROUND: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. AIM: To explore physicians' experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. DESIGN: Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs...
October 1, 2016: Palliative Medicine
https://www.readbyqxmd.com/read/28596151/survey-on-advance-care-planning-of-italian-outpatients-on-chronic-haemodialysis
#9
Nicola Panocchia, Giuseppe Tonnara, Roberta Minacori, Dario Sacchini, Maurizio Bossola, Luigi Tazza, Giovanni Gambaro, Antonio Gioacchino Spagnolo
OBJECTIVES: The clinical practice guidelines published by the Renal Physicians Association (USA) recommend instituting advance care planning (ACP) for patients with end-stage renal disease. Studies on this issue are lacking in Italy. Our aim was to determine the attitudes of patients on ACP in our dialysis centre. METHODS: We performed a cross-sectional survey. We recruited patients on maintenance haemodialysis (HD) at Hemodialysis Center of Università Cattolica del Sacro Cuore, from 1 March 2014 to 31 March 2015...
June 8, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28398367/-implantable-cardioverter-defibrillator-deactivation-at-the-end-of-life-ethical-clinical-and-communication-issues
#10
REVIEW
Massimo Romanò, Maria Antonella Piga, Roberta Bertona, Roberto Negro, Chiara Ruggeri, Federica Zorzoli, Rosvaldo Villani
The number of cardioverter-defibrillator implants is increasing worldwide, with the main indication being primary prevention of sudden cardiac death. During the follow-up, patients may die from progression of their underlying heart disease or from nonarrhythmic causes, such as malignancies, dementia and lung disease, without receiving appropriate shocks until the last few days or weeks of their life. These events occur roughly in 30% of patients, mainly in the last 24 hours before death. In this case, inappropriate and even appropriate shock deliveries can no longer prolong life and may simply lead to pain and reduced quality of life...
February 2017: Giornale Italiano di Cardiologia
https://www.readbyqxmd.com/read/28361632/advance-care-planning-for-people-with-dementia
#11
(no author information available yet)
UK policy and guidance state that people should have their preferences and priorities for end of life care recorded in the form of an advance care plan. However, for people with dementia and their families, issues of reduced capacity, difficulties with discussing end of life preferences and staff understanding can make this process challenges. This research focus summarises two studies that explore these issues.
March 31, 2017: Nursing Older People
https://www.readbyqxmd.com/read/28295138/frequency-and-risk-factors-for-live-discharge-from-hospice
#12
David Russell, Eli L Diamond, Bonnie Lauder, Ritchell R Dignam, Dawn W Dowding, Timothy R Peng, Holly G Prigerson, Kathryn H Bowles
OBJECTIVES: To report frequencies and associated risk factors for 4 distinct causes of live discharge from hospice. DESIGN: Retrospective cohort study using electronic medical records of hospice patients who received care from a large urban not-for-profit hospice agency in New York City during a 3-year period between 2013 and 2015 (n = 9,190). RESULTS: Roughly one in five hospice patients were discharged alive (21%; n = 1911). Acute hospitalization was the most frequent reason for live discharge (42% of all live discharges; n = 802)...
August 2017: Journal of the American Geriatrics Society
https://www.readbyqxmd.com/read/27108345/initiating-advance-care-planning-on-end-of-life-issues-in-dementia-ambiguity-among-uk-and-dutch-physicians
#13
COMPARATIVE STUDY
Jenny T van der Steen, Karen Galway, Gillian Carter, Kevin Brazil
BACKGROUND: In dementia, advance care planning (ACP) of end-of-life issues may start as early as possible in view of the patient's decreasing ability to participate in decision making. We aimed to assess whether practicing physicians in the Netherlands and the United Kingdom who provide most of the end-of-life care, differ in finding that ACP in dementia should start at diagnosis. METHODS: In a cross-sectional study, we surveyed 188 Dutch elderly care physicians who are on the staff of nursing homes and 133 general practitioners from Northern Ireland...
July 2016: Archives of Gerontology and Geriatrics
https://www.readbyqxmd.com/read/27004847/advanced-dementia-opinions-of-physicians-and-nurses-about-antibiotic-therapy-artificial-hydration-and-nutrition-in-patients-with-different-life-expectancies
#14
Valentina Pengo, Anna Zurlo, Alberto Voci, Elisabetta Valentini, Francesca De Zaiacomo, Massimo Catarini, Mario Iasevoli, Stefania Maggi, Renzo Pegoraro, Enzo Manzato, Valter Giantin
AIM: The aim of the present study was to investigate the proportion of physicians and nurses who agree with the administration of antibiotic therapy (AT), artificial hydration (AH), and artificial nutrition (AN) in patients with advanced dementia and different life expectancies. Furthermore, we aimed at analyzing the correlates of the opinion according to which medical treatments should no longer be given to advanced dementia patients once their life expectancy falls. METHODS: End-of-life decisions and opinions were measured with a questionnaire that was sent to geriatric units, hospices and nursing homes in three different regions of Italy...
March 2017: Geriatrics & Gerontology International
https://www.readbyqxmd.com/read/26952382/advanced-life-events-ales-that-impede-aging-in-place-among-seniors
#15
Lee A Lindquist, Vanessa Ramirez-Zohfeld, Priya Sunkara, Chris Forcucci, Dianne Campbell, Phyllis Mitzen, Kenzie A Cameron
Despite the wishes of many seniors to age-in-place in their own homes, critical events occur that impede their ability to do so. A gap exists as to what these advanced life events (ALEs) entail and the planning that older adults perceive is necessary. The purpose of this study was to identify seniors' perceptions and planning toward ALEs that may impact their ability to remain in their own home. We conducted focus groups with 68 seniors, age ≥65 years (mean age 73.8 years), living in the community (rural, urban, and suburban), using open-ended questions about perceptions of future heath events, needs, and planning...
May 2016: Archives of Gerontology and Geriatrics
https://www.readbyqxmd.com/read/26285996/advance-care-planning-in-dementia
#16
REVIEW
Karen Harrison Dening
Advance care planning is the basis for delivering person-centred end of life care that accords with the wishes of the individual. It is important to support people with dementia in developing an advance care plan, since they may lose the capacity to make decisions associated with this early in the disease process. Healthcare policy indicates that we should all consider our wishes for end of life care. However, this may not be straightforward for people with dementia. This article considers the main issues in enabling advance care planning with people with dementia, reviews the limited evidence and offers possible solutions...
August 19, 2015: Nursing Standard
https://www.readbyqxmd.com/read/26230958/depression-of-family-caregivers-is-associated-with-disagreements-on-life-sustaining-preferences-for-treating-patients-with-dementia
#17
Chia-Fen Tsai, Yao-Tung Lee, Wei-Ju Lee, Jen-Ping Hwang, Shuu-Jiun Wang, Jong-Ling Fuh
BACKGROUND: Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors. METHODS: A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia...
2015: PloS One
https://www.readbyqxmd.com/read/25960496/pa10%C3%A2-what-i-need-you-to-know-building-a-collaborative-communication-tool
#18
Aine Abbott, Max Watson, Jenny Gingles, Scott Brown, Jill Brennan, Keith Scott, Bernadine McCrory, Anne Marie Marley, Laurence Dorman, Rose McCullagh, Shauna Fannin, Keith Scott, Johnny Brown, Richard Orr, Anne Marie Marley, Loretta Jones, Bernadine McCrory, Robert Carlisle, Michael Healy
BACKGROUND: During strategy consultation in Northern Ireland an "End of Life Care Passport" was suggested as a way to address myriad communication difficulties involved in living with evolving illness. AIM: To build a patient-owned communication tool to facilitate important conversations and capture key information as health changes. METHODS: Participatory action methods used to engage service users, carers, patient advocates, and healthcare professionals...
April 2015: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/25873701/end-of-life-issues-in-advanced-dementia-part-2-management-of-poor-nutritional-intake-dehydration-and-pneumonia
#19
REVIEW
Marcel Arcand
OBJECTIVE: To answer frequently asked questions about management of end-stage pneumonia, poor nutritional intake, and dehydration in advanced dementia. SOURCES OF INFORMATION: Ovid MEDLINE was searched for relevant articles published until February 2015. No level I studies were identified; most articles provided level III evidence. The symptom management suggestions are partially based on recent participation in a Delphi procedure to develop a guideline for optimal symptom relief for patients with pneumonia and dementia...
April 2015: Canadian Family Physician Médecin de Famille Canadien
https://www.readbyqxmd.com/read/25873700/end-of-life-issues-in-advanced-dementia-part-1-goals-of-care-decision-making-process-and-family-education
#20
REVIEW
Marcel Arcand
OBJECTIVE: To review the issues with setting goals of care for patients with advanced dementia, describe the respective roles of the physician and the patient's family in the decision-making process, and suggest ways to support families who need more information about the care options. SOURCES OF INFORMATION: Ovid MEDLINE was searched for relevant articles that were published before March 7, 2014. There were no level I studies identified; most articles provided level III evidence...
April 2015: Canadian Family Physician Médecin de Famille Canadien
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