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End-of-life issues in advanced dementia

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 23, 2016: 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
Maddalena Riva, Salvatore Caratozzolo, Erica Cerea, Federica Gottardi, Marina Zanetti, Barbara Vicini Chilovi, Carlo Cristini, Alessandro Padovani, Luca Rozzini
BACKGROUND AND AIMS: In current Alzheimer disease (AD) research there is growing asymmetry between the modest benefits of the currently available treatments, in contrast to the possibility to diagnose AD early in its natural history. This complex situation brings along a number of important ethical issues about diagnosis disclosure and end-of-life decisions that need to be addressed. The principal aim of the study was to investigate the attitudes towards disclosure of a diagnosis of AD and disposition towards completion of advance care planning, in a sample of Italian citizens...
August 2014: Aging Clinical and Experimental Research
Lorna Dyall
Dementia has been framed and seen as a condition associated with ageing and in particular with advanced age, especially amongst those over 80 years of age. For Maori and Pacific peoples in New Zealand dementia is not necessarily associated with age but is directly related to our respective histories within this country, patterns of migration and the socioeconomic determinants of health for both populations from different tribes and nations. Issues are discussed in relation to Maori and Pacific development and the importance of prevention and early detection of chronic health conditions...
February 14, 2014: New Zealand Medical Journal
Jenny T van der Steen, Mirjam C van Soest-Poortvliet, Meertje Hallie-Heierman, Bregje D Onwuteaka-Philipsen, Luc Deliens, Marike E de Boer, Lieve Van den Block, Nicole van Uden, Cees M P M Hertogh, Henrica C W de Vet
BACKGROUND: Planning ahead may be particularly relevant in dementia considering patients' cognitive decline and difficulty to predict the course of the dementia. OBJECTIVE: To identify factors associated with initiation of advance care planning (ACP) regarding end-of-life issues in dementia. METHODS: Systematic review of the PubMed, Embase, Cinahl, Psychinfo, and Cochrane databases until January 2013. We included articles reporting on empirical research, identifying factors related to initiation of ACP defined as starting a discussion, starting the decision making, or having a documented patient-written advance directive...
2014: Journal of Alzheimer's Disease: JAD
Ct Sudhir Kumar, Jacob Roy Kuriakose
Appropriate management of advanced dementia requires it to be recognised as a terminal condition that needs palliative care. Interventions during this stage should be carefully chosen to ensure the improvement or maintenance of the quality of life of the person with dementia. Advanced care planning is an important aspect of dementia care. Carers and relatives should be educated and encouraged to actively participate in discussions related to artificial nutrition, cardiopulmonary resuscitation (CPR) and other medical interventions...
September 2013: Mental Health in Family Medicine
Kuniko Aizawa, Atsushi Asai, Seiji Bito
BACKGROUND: In Japan, people are negative towards life-prolonging treatments. Laws that regulate withholding or discontinuing life-prolonging treatments and advance directives do not exist. Physicians, however, view discontinuing life-prolonging treatments negatively due to fears of police investigations. Although ministerial guidelines were announced regarding the decision process for end-of-life care in 2007, a consensus could not be reached on the definition of end-of-life and conditions for withholding treatment...
2013: BMC Medical Ethics
Debbie Dempsey
Advance care planning (ACP) is a process being championed within health and social care, particularly since the publication of the UK Department of Health's 2008 End of Life Care Strategy. However, its implementation in dementia care is yet to be fully realised and can pose significant ethical and legal dilemmas for the generic and specialist workforce, the patient themselves, and their family or loved ones. Challenges may be attributable to inadequate communication, capacity issues, missed opportunities, and the perception that dementia is not a life-limiting illness...
May 2013: International Journal of Palliative Nursing
Jenny T van der Steen, Miel W Ribbe, Luc Deliens, Giselka Gutschow, Bregje D Onwuteaka-Philipsen
Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010)...
January 2014: Alzheimer Disease and Associated Disorders
Michelle Parker, Donna Power
Problems with eating and swallowing are recognised as features of advancing dementia and may be a sign that the person is entering the terminal phase of illness. Such problems cause considerable concern and anxiety among family members, carers and health professionals. They also raise moral and ethical issues about artificial nutrition and the emotional and practical aspects of end of life care. This article discusses the eating and swallowing difficulties that may present in people with advanced dementia and multidisciplinary best practice in their management...
March 2013: Nursing Older People
Zoë Slote Morris, Miranda Fyfe, Natalie Momen, Sarah Hoare, Stephen Barclay
BACKGROUND: Palliative care is a policy priority internationally. In England, policymakers are seeking to develop high quality care for all by focusing on reducing the number of patients who die in acute hospitals. It is argued that reducing 'inappropriate' hospital admissions will lead to an improvement in the quality of care and provide cost savings.Yet what is meant by an 'inappropriate' admission is unclear and is unlikely to be shared by all stakeholders. The decision process that leads to hospital admission is often challenging, particularly when patients are frail and elderly...
2013: BMC Health Services Research
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