title: The basis, ethics and provision of palliative care for dementia: A review.
abstract: Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia.
authors.affiliation: Northumbria Healthcare NHS Foundation Trust, Psychiatry of Old Age Service, Ash Court, North Tyneside General Hospital, North Shields, Tyne and Wear NE29 8NH, UK. Electronic address: fbabaei@yahoo.com.
authors.forename: Fariba
authors.initials: F
authors.lastname: Mahin-Babaei
authors.affiliation: Northumberland, Tyne and Wear NHS Foundation Trust, St George's Hospital, Morpeth, Northumberland NE61 2NU, UK. Electronic address: jamal.hilal@ntw.nhs.uk.
authors.forename: Jamal
authors.initials: J
authors.lastname: Hilal
authors.affiliation: Northumbria Healthcare NHS Foundation Trust, Psychiatry of Old Age Service and Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, 4th Floor, Claremont Bridge, Newcastle upon Tyne NE1 7RU, UK. Electronic address: julian.hughes@ncl.ac.uk.
authors.forename: Julian C
authors.initials: JC
authors.lastname: Hughes
mesh_terms: D003657:Decision Making; D003704:Dementia / Q000628:therapy*; D005440:Fluid Therapy; D006801:Humans; D018529:Nutritional Support; D010166:Palliative Care / Q000941:ethics* / Q000379:methods*
keywords: Artificial nutrition and hydration; Dementia; Ethics; Models of care; Palliative care; Service provision