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End-of-life issues in advanced dementia

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
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
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
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
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
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
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
(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
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
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
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
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
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
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
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
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
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
Sherif Soliman, Ryan C W Hall
Decision-making capacity is a common reason for psychiatric consultation that is likely to become more common as the population ages. Capacity assessments are frequently compromised by misconceptions, such as the belief that incapacity is permanent or that patients with dementia categorically lack capacity. This chapter will review the conceptual framework of decision-making capacity and discuss its application to medical decision-making. We will review selected developments in capacity assessment and recommend an approach to assessing decision-making capacity...
2015: Advances in Psychosomatic Medicine
Kirsten J Moore, Margaret Elliott, Nuriye Kupeli, Sarah Davis, Jane Harrington, Victoria Vickerstaff, Anna Gola, Bridget Candy, Michael B King, Gerard Leavey, Rumana Z Omar, Steve Morris, Irwin Nazareth, Elizabeth L Sampson, Louise Jones
INTRODUCTION: Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. AIMS AND METHODS: This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia...
March 2015: BMJ Supportive & Palliative Care
Joann P Reinhardt, Eileen Chichin, Laurie Posner, Simon Kassabian
Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support...
2014: Journal of Social Work in End-of-life & Palliative Care
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