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Advance Care Planning in Dementia

Magnolia Cardona-Morrell, Gustavo Benfatti-Olivato, Jesse Jansen, Robin M Turner, Diana Fajardo-Pulido, Ken Hillman
OBJECTIVE: To describe the range of decision aids (DAs) available to enable informed choice for older patients at the end of life and assess their effectiveness or acceptability. METHODS: Search strategy covered PubMed, Scopus, Ovid MEDLINE, EMBASE, EBM Reviews, CINAHL and PsycInfo between 1995 and 2015. The quality criteria framework endorsed by the International Patient Decision Aids Standards (IPDAS) was used to assess usefulness. RESULTS: Seventeen DA interventions for patients, their surrogates or health professionals were included...
October 11, 2016: Patient Education and Counseling
Hiral Shah, Emiliano Albanese, Cynthia Duggan, Igor Rudan, Kenneth M Langa, Maria C Carrillo, Kit Yee Chan, Yves Joanette, Martin Prince, Martin Rossor, Shekhar Saxena, Heather M Snyder, Reisa Sperling, Mathew Varghese, Huali Wang, Marc Wortmann, Tarun Dua
At the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, 160 delegates, including representatives from 80 WHO Member States and four UN agencies, agreed on a call for action to reduce the global burden of dementia by fostering a collective effort to advance research. To drive this effort, we completed a globally representative research prioritisation exercise using an adapted version of the Child Health and Nutrition Research Initiative method. We elicited 863 research questions from 201 participants and consolidated these questions into 59 thematic research avenues, which were scored anonymously by 162 researchers and stakeholders from 39 countries according to five criteria...
November 2016: Lancet Neurology
Sophie Ampe, Aline Sevenants, Tinne Smets, Anja Declercq, Chantal Van Audenhove
OBJECTIVES: (1) To pilot 'we DECide' in terms of influence on advance care planning policy and practice in nursing home dementia care units. (2) To investigate barriers and facilitators for implementing 'we DECide'. METHODS: This was a pre-test-post-test study in 18 nursing homes. Measurements included: compliance with best practice of advance care planning policy (ACP-audit); advance care planning practice (ACP criteria: degree to which advance care planning was discussed, and OPTION scale: degree of involvement of residents and families in conversations)...
August 10, 2016: Patient Education and Counseling
Karen Harrison Dening, Michael King, Louise Jones, Victoria Vickerstaff, Elizabeth L Sampson
[This corrects the article DOI: 10.1371/journal.pone.0159056.].
2016: PloS One
Richard J Ackermann
Advance directives are legal documents that give instructions about how to provide care when patients develop life-threatening illnesses and can no longer communicate their wishes. Two types of documents are widely used-a living will and a durable power of attorney for health care. Most states also authorize physician orders for life-sustaining treatment. Physicians should encourage patients, particularly those with severe chronic or terminal conditions, to prepare advance directives. Medicare now reimburses billing codes for advance care consultations...
August 2016: FP Essentials
Elizabeth Hanson, Amanda Hellström, Åsa Sandvide, Graham A Jackson, Rhoda MacRae, Anna Waugh, Wilson Abreu, Debbie Tolson
This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care...
July 26, 2016: Dementia
Karen Harrison Dening, Michael King, Louise Jones, Victoria Vickestaff, Elizabeth L Sampson
BACKGROUND AND AIMS: When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers' choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this. METHODS: A cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ...
2016: PloS One
Gary Mitchell, Joanne Agnelli, Jessie McGreevy, Monica Diamond, Herlindina Roble, Elaine McShane, Joanne Strain
The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death...
June 22, 2016: Nursing Standard
Laura C Hanson, Mi-Kyung Song, Sheryl Zimmerman, Robin Gilliam, Cherie Rosemond, Latarsha Chisholm, Feng-Chang Lin
BACKGROUND/AIMS: Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes. METHODS: The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia...
June 7, 2016: Clinical Trials: Journal of the Society for Clinical Trials
(no author information available yet)
This comprehensive synthesis of published literature from a team in Northern Ireland focused on the perspectives of healthcare professionals in relation to ACP for people with dementia living in long-term care settings. From the 14 papers discussed, the authors identified that people with dementia are often not recognised as having a terminal illness. Four key themes were identified: ■ Early integration and planning for palliative care in dementia is important. ■ Healthcare professionals' perspectives on ACP are influenced by ethical and moral concerns including presumptions regarding capacity of the person with dementia towards ACP and the impact of the increased role of the family in the decision-making processes...
May 27, 2016: Nursing Older People
(no author information available yet)
Through a three-stage project in a specialist memory clinic in Australia, researchers introduced ACP to clients with mild cognitive impairment or recently diagnosed dementia and their families. Clients and carers were initially posted a survey assessing completed documentation for future care, understanding of the principles of ACP and willingness to receive further information. Those wanting more information were invited to a seminar introducing the ACP programme and service. Participants wanting to complete ACP documentation could make an appointment with the ACP clinicians...
May 27, 2016: Nursing Older People
(no author information available yet)
Advance care planning (ACP) provides a framework for discussing and documenting care preferences in preparation for situations in which a person loses the cognitive capacity to make decisions. It can be particularly valuable in assisting people in the early stages of living with a dementia, supported by their families, to document their preferences for care at the later stages of their illness. While the potential benefits of ACP are widely acknowledged, there remain gaps in the research evidence on ACP and challenges in implementing ACP in practice...
May 27, 2016: Nursing Older People
(no author information available yet)
Despite the potential benefits of ACP for nursing home residents with dementia, the authors of this study highlight that hardly any research has focused on the involvement of residents/families in ACP and that ACP is rarely realised for these people. Their research aimed to evaluate the ACP policy for people with dementia in nursing homes and to gain insight into the involvement of residents with dementia and their families in ACP.
May 27, 2016: Nursing Older People
Irene E van de Vorst, Huiberdina L Koek, Michiel L Bots, Ilonca Vaartjes
BACKGROUND: Insight in causes of death in demented patients may help physicians in end-of-life care. OBJECTIVES: To investigate underlying causes of death (UCD) in demented patients stratified by age, sex, dementia subtype [Alzheimer's disease (AD), vascular dementia (VaD)] and to compare them with UCD in the general population (GP). METHODS: A nationwide cohort of 59,201 patients with dementia (admitted to a hospital or visiting a day clinic) was constructed [38...
May 6, 2016: Journal of Alzheimer's Disease: JAD
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
Gill Garden, Suzanne Green, Susan Pieniak, John Gladman
People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK...
April 2016: Clinical Medicine: Journal of the Royal College of Physicians of London
Shuichi Awata
The way to provide medical services for dementia was reviewed in the context of the Comprehensive Strategy to Accelerate Dementia Measures (New Orange Plan). The basic structure of service providing system consists of the primary and secondary care services. Both are expected to function in the context of the community-based integrated care system. Because of regional differences, prefectural government should take measures to make the Medical Center for Dementia function depending on local circumstances. Psychiatric services and general hospitals are expected to provide mental health services and treatment for concurrent medical conditions, respectively...
March 2016: Nihon Rinsho. Japanese Journal of Clinical Medicine
Nuriye Kupeli, Gerard Leavey, Kirsten Moore, Jane Harrington, Kathryn Lord, Michael King, Irwin Nazareth, Elizabeth L Sampson, Louise Jones
BACKGROUND: The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers. METHOD: The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework...
2016: BMC Palliative Care
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
Soo Borson, Malaz A Boustani, Kathleen C Buckwalter, Louis D Burgio, Joshua Chodosh, Richard H Fortinsky, David R Gifford, Lisa P Gwyther, Mary Jane Koren, Joanne Lynn, Cheryl Phillips, Martha Roherty, Judah Ronch, Claudia Stahl, Lauren Rodgers, Hye Kim, Matthew Baumgart, Angela Geiger
INTRODUCTION: Under the U.S. national Alzheimer's plan, the National Institutes of Health identified milestones required to meet the plan's biomedical research goal (Goal 1). However, similar milestones have not been created for the goals on care (Goal 2) and support (Goal 3). METHODS: The Alzheimer's Association convened a workgroup with expertise in clinical care, long-term services and supports, dementia care and support research, and public policy. The workgroup reviewed the literature on Alzheimer's care and support; reviewed how other countries are addressing the issue; and identified public policies needed over the next 10 years to achieve a more ideal care and support system...
March 2016: Alzheimer's & Dementia: the Journal of the Alzheimer's Association
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