van der Steen, Jenny T, Radbruch, Lukas, Hertogh, Cees MPM, de Boer, Marike E, Hughes, Julian C, Larkin, Philip, Francke, Anneke L, Jünger, Saskia, Gove, Dianne, Firth, Pam, Koopmans, Raymond TCM, and Volicer, Ladislav
Subjects
*TREATMENT of dementia, *DELPHI method, *HUMAN comfort, *MEDICAL protocols, *PALLIATIVE treatment, *PRIORITY (Philosophy), *RESEARCH funding, *SOCIETIES, RESEARCH evaluation
Abstract
The article presents a study that defines the optimal palliative care in dementia. The study provides a brief overview about the disease. The study invited 89 experts from 27 countries to evaluate a two-round online survey with feedback. It also suggests the availability of immediate and full consensus on the eight domains, including the recommendations person-centered care, communication and shared decision-making and optimal treatment of symptoms.
Kochovska, Slavica, Garcia, Maja V, Bunn, Frances, Goodman, Claire, Luckett, Tim, Parker, Deborah, Phillips, Jane L, Sampson, Elizabeth L, van der Steen, Jenny T, and Agar, Meera R
Subjects
TREATMENT of dementia, CINAHL database, DECISION making, DEMENTIA patients, PSYCHOLOGY information storage & retrieval systems, LONG-term health care, MEDLINE, NEEDS assessment, PALLIATIVE treatment, SYSTEMATIC reviews
Abstract
Background: People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. Aim: The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. Design: Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). Data sources: Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. Results: Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed. Conclusion: Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population. [ABSTRACT FROM AUTHOR]