White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

Abstract

Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. Results: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. Conclusion:We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

“…33 The goal of prolonging life is considered inconsistent with the palliative philosophy, and it is even less appropriate in cases of advanced dementia. 7 Nonetheless, these findings confirm the existence of a gap between the recommendations of palliative care philosophy and the positions of doctors 34 and nurses, 35 who seem, at least in Italy, culturally more inclined to prolong life and thus to favor the administration of antibiotics.…”

“…3 Advanced dementia may be perceived as a terminal condition, 4,5 but because patients can survive for years with this condition, they are often exposed to aggressive and/or inappropriate treatments. 6 Decisions to forgo artificial nutrition and hydration are among the most difficult and controversial ones 7,8 , but even routine clinical decisions can impact the patients' quality of life and/or survival. Examples of such decisions are whether to use restraints for patients who oppose treatments, to sedate an agitated patient, or to prescribe invasive diagnostic tests.…”

Advance care planning for nursing home residents with dementia: Influence of ‘we DECide’ on policy and practice

“…A positive finding is that in more than half of the recorded conversations, residents with dementia were involved. We advise to increase the involvement of residents with dementia even more, especially at the time of admission when communicative and cognitive capacity might still be sufficient [3,4].…”

“…ACP in this case is not a single discussion. It is rather a process that should start early, at the latest at the time of diagnosis, and is initiated by the general practitioner (GP) [4]. In most cases, however, preferences for end-of-life care are not addressed in the GP practice [5].…”

Palliative care in dementia: Does it work?

“…Van der Steen et al [1] have attempted to create clearer boundaries for what we mean by 'palliative care' in dementia. They used a Delphi process to generate a set of core domains and then tested these on a wider international panel of experts.…”