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.
This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.
Current Government recommendations in England suggest a national approach to risk management but, in an increasingly litigious society, how do professional carers balance risk management with the promotion of a person-centred approach in dementia care? Wandering behaviour can be both beneficial and harmful to a person with dementia and generate considerable emotional distress in their carers. This study combined a systematic review and qualitative research methods to explore the perspectives of different stakeholders in the management of wandering in dementia. A major theme for carers was the conflict between the prevention of harm and the facilitation of a person's right to autonomy. Such tensions also impacted on carers' abilities to provide person-centred care. This dilemma was highlighted through the use of assistive technologies such as electronic tracking devices. Interestingly, people with dementia felt that the use of such technology placed them at greater risk, i.e. as a target to theft, than the process of wandering itself. They spoke of their need for independence and their concern over carer surveillance and the identity of 'big brother.' There is a need to develop practical tools for managing risk within dementia care which allow all perspectives to be captured and risk management to be negotiated.
there is limited evidence for the effectiveness of ACP in people with cognitive impairment/dementia in terms of ACP documentation and health-care use. In terms of capacity to discuss ACP, nursing home settings may be too late for people with dementia.
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