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Advance Care Planning in Dementia

Linda W Samia, Ann O'Sullivan, Kate Cole Fallon, AbouEl-Makarim Aboueissa, Kenneth W Hepburn
Background and Objectives: The Savvy Advanced psychoeducation program was designed for previously trained caregivers of persons living with dementia to refine their problem-solving and planning skills and enhance their sense of self-efficacy as dementia progressed for the care recipient. Implementation, feasibility, participant satisfaction, and perceived program benefits were also evaluated. Research Design and Methods: A total of 100 dementia family caregivers participated in the 12-month evaluation of Savvy Advanced...
March 12, 2018: Gerontologist
Sarah Donnelly, Emer Begley, Marita O'Brien
In recent years, there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the potential to impact on the experience for people with dementia in Ireland. There is little evidence however on whether these policies and principles are being translated into practice and whether traditional paternalistic approaches to decision-making are being challenged. To gain insight into current practice, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes...
January 1, 2018: Dementia
Mary M Mitchell, Eric D Hansen, Tuo-Yen Tseng, Meng Shen, Cynda Rushton, Tom Smith, Nancy Hutton, Jennifer Wolfe, Lee Bone, Jeanne Keruly, Lawrence Wissow, Amy R Knowlton
CONTEXT & OBJECTIVE: Advance care planning (ACP) rates remain low, especially among people who are HIV positive, disadvantaged, and African American. While ACP can be a sensitive topic for clinicians and patients to discuss, health values clarification can be an important initial step. METHODS: Data were from the first 325 participants in the AFFIRM Care study, which enrolled adults living with HIV/AIDS in Baltimore, MD, who had histories of illicit drug use...
March 8, 2018: Journal of Pain and Symptom Management
James Pickett, Cathy Bird, Clive Ballard, Sube Banerjee, Carol Brayne, Katherine Cowan, Linda Clare, Adelina Comas-Herrera, Lynne Corner, Stephanie Daley, Martin Knapp, Louise Lafortune, Gill Livingston, Jill Manthorpe, Natalie Marchant, Jo Moriarty, Louise Robinson, Clare van Lynden, Gill Windle, Bob Woods, Katherine Gray, Clare Walton
OBJECTIVE: National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them. METHODS: Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research...
February 22, 2018: International Journal of Geriatric Psychiatry
Corinna Porteri
BACKGROUND: The proposal of the new criteria for the diagnosis of Alzheimer's disease (AD) based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment (MCI) or predementia/prodromal- stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. MAIN BODY: Advance directives are largely seen as an effective tool for planning medical care in the event the subject becomes incompetent...
February 20, 2018: BMC Medical Ethics
Jun Hamano, Ai Oishi, Yoshiyuki Kizawa
BACKGROUND: Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose. OBJECTIVE: To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan. DESIGN: Single-center cross-sectional study...
February 9, 2018: Journal of Palliative Medicine
Ping-Jen Chen, Fu-Wen Liang, Chung-Han Ho, Shao-Yi Cheng, Yi-Chen Chen, Yu-Han Chen, Yueh-Chun Chen
BACKGROUND: The association between palliative care and life-sustaining treatments for patients with dementia is unclear in Asian countries. AIM: To analyse the use of palliative care and its association with aggressive treatments based on Taiwanese national data. DESIGN: A matched cohort study was conducted. The association between intervention and outcome was evaluated using conditional logistic regression analyses. SETTING/PARTICIPANTS: The source population comprised 239,633 patients with dementia diagnosed between 2002 and 2013...
January 1, 2018: Palliative Medicine
Andrea Iaboni, Karen Van Ooteghem, Meghan N Marcil, Amy Cockburn, Alastair J Flint, Daphna Grossman, Ron Keren
Falls are viewed as a preventable cause of injury, functional loss, and death in older adults with dementia, and have been used as a marker of quality of care in long-term care facilities. Despite intensive intervention around fall prevention in these settings, falls and injury remain frequent, particularly among residents in the advanced stages of dementia. In this clinical review, we consider the common challenges and pitfalls in both the management of falls and the provision of palliative care in advanced dementia...
December 11, 2017: American Journal of Geriatric Psychiatry
Oleg Kiriaev, Emme Chacko, J D Jurgens, Meagan Ramages, Phillipa Malpas, Gary Cheung
BACKGROUND: People with dementia receive worse end of life care compared to those with cancer. Barriers to undertaking advanced care planning (ACP) in people with dementia include the uncertainty about their capacity to engage in such discussions. The primary aim of this study was to compare the Advance Care Planning-Capacity Assessment Vignette tool (ACP-CAV) with a semi-structured interview adapted from the MacArthur Competence Assessment Tool-Treatment (MacCAT-T). The secondary aim was to identify demographic and cognitive functioning variables that may predict whether a person has capacity to discuss ACP...
January 16, 2018: International Psychogeriatrics
Jane L Givens, Rebecca L Sudore, Gad A Marshall, Alyssa B Dufour, Ilona Kopits, Susan L Mitchell
CONTEXT: Little is known about advance care planning (ACP) among community-dwelling patients with dementia. OBJECTIVES: To describe aspects of ACP among patients with dementia and examine the association between ACP and health care proxy (HCP) acceptance of patient illness. METHODS: Cross sectional observational survey of 62 HCPs of patients with dementia (N=14 mild, N=48 moderate/severe), from 7 outpatient geriatric and memory disorder clinics in Boston...
December 13, 2017: Journal of Pain and Symptom Management
Joon Hyung Jung, Min Joo Kim, Soo-Hee Choi, Na Young Han, Jee Eun Park, Hye Youn Park, Ji Won Han, Dong Young Lee, Hye Yoon Park
Objective: In this study, we aimed to investigate preferences regarding the disclosure of a dementia diagnosis and advance care planning (ACP) in patients with memory complaints and their families. Methods: A total of 98 patients who visited the department of psychiatry at a tertiary hospital with memory complaints and 62 family members completed a structured questionnaire. The questionnaire included preferences on disclosure of dementia and cancer diagnosis, awareness and preferences on ACP...
November 2017: Psychiatry Investigation
Kim-Huong Nguyen, Marcus Sellars, Meera Agar, Sue Kurrle, Adele Kelly, Tracy Comans
BACKGROUND: Advance care planning (ACP) is a process of planning for future health and personal care. A person's values and preferences are made known so that they can guide decision making at a future time when that person cannot make or communicate his or her decisions. This is particularly relevant for people with dementia because their ability to make decisions progressively deteriorates over time. This study aims to evaluate the cost-effectiveness of delivering a nationwide ACP program within the Australian primary care setting...
December 1, 2017: BMC Health Services Research
Belinda Bennett, Fiona McDonald, Elizabeth Beattie, Terry Carney, Ian Freckelton, Ben White, Lindy Willmott
The sustainable development goals (SDGs) adopted by the United Nations in 2015 include a new target for global health: SDG 3 aims to "ensure healthy lives and promote well-being for all at all ages." Dementia care of good quality is particularly important given the projected increase in the number of people living with the condition. A range of assistive technologies have been proposed to support dementia care. However, the World Health Organization estimated in 2017 that only one in 10 of the 1 billion or more people globally who could benefit from these technologies in some way actually has access to them...
November 1, 2017: Bulletin of the World Health Organization
Nasim Sheikh-Bahaei, Seyed Ahmad Sajjadi, Aimee L Pierce
Purpose of review Alzheimer's disease (AD) and frontotemporal dementia can often be diagnosed accurately with careful clinical history, cognitive testing, neurological examination, and structural brain MRI. However, there are certain circumstances wherein detection of specific biomarkers of neurodegeneration or underlying AD pathology will impact the clinical diagnosis or treatment plan. We will review the currently available biomarkers for AD and frontotemporal dementia (FTD) and discuss their clinical importance...
November 14, 2017: Current Treatment Options in Neurology
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
Wiesje M van der Flier, Marleen Kunneman, Femke H Bouwman, Ronald C Petersen, Ellen M A Smets
The launch of the NIA-AA research criteria for Alzheimer's disease (AD) diagnosis illustrates the large advances that have been made in the field of AD diagnosis. These new possibilities however also introduce new dilemmas into the consulting room, and this provides room for shared decision making (SDM). SDM refers to clinicians and patients (and/or their caregivers) working together to decide which care plan best fits individual patients and their lives, when there is more than one reasonable option. Here, we describe how SDM in the diagnosis of AD promotes patient-centered care, as it helps to adapt the diagnostic process to the patients' values and preferences...
September 2017: Alzheimer's & Dementia: Translational Research & Clinical Interventions
Francesca Ingravallo, Veronica Mignani, Elena Mariani, Giovanni Ottoboni, Marie Christine Melon, Rabih Chattat
BACKGROUND: Evidence concerning when and in which manner older people living in nursing homes (NHs) would prefer to discuss advance care planning (ACP) is still scarce. This study explored the attitudes of NH residents and family members toward ACP and their opinions as to the right time to broach the subject, the manner in which it should be approached, and the content of ACP. METHODS: This was a qualitative study using face-to-face interviews with 30 residents (age range 66-94), and 10 family members from 4 Italian NHs...
October 9, 2017: International Psychogeriatrics
Maisha T Robinson, Robert G Holloway
Palliative medicine is a specialty that focuses on improving the quality of life for patients with serious or advanced medical conditions, and it is appropriate at any stage of disease, including at the time of diagnosis. Neurologic conditions tend to have high symptom burdens, variable disease courses, and poor prognoses that affect not only patients but also their families and caregivers. Patients with a variety of neurologic conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurologic illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care...
October 2017: Mayo Clinic Proceedings
Staja Star Booker, Rashida D Booker
Ensuring effective pain management is an important quality of life (and death) issue for older adults with dementia, particularly since they are more vulnerable to under-assessment and under-treatment of pain. Yet, pain management decisions are often made by health care providers and caregivers with little to no input on the older adult's with dementia values for pain management. The Institute of Medicine (IOM) has recognized the revolutionary imperative to change the manner in which pain care is planned and coordinated...
April 1, 2017: Gerontologist
Sue Barker, Mary Lynch, Jane Hopkinson
BACKGROUND: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. AIM: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. DESIGN: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home...
September 2, 2017: International Journal of Palliative Nursing
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