title: The extended palliative phase of dementia - An integrative literature review.
abstract: This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.
authors.affiliation: The Swedish Family Care Competence Centre, Linnaeus University, Sweden.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Hanson
authors.affiliation: The Swedish Family Care Competence Centre, Linnaeus University, Sweden.
authors.forename: Amanda
authors.initials: A
authors.lastname: Hellström
authors.affiliation: The Swedish Family Care Competence Centre, Linnaeus University, Sweden.
authors.forename: Åsa
authors.initials: Å
authors.lastname: Sandvide
authors.affiliation: University of the West of Scotland, UK.
authors.forename: Graham A
authors.initials: GA
authors.lastname: Jackson
authors.affiliation: University of the West of Scotland, UK.
authors.forename: Rhoda
authors.initials: R
authors.lastname: MacRae
authors.affiliation: University of the West of Scotland, UK.
authors.forename: Anna
authors.initials: A
authors.lastname: Waugh
authors.affiliation: Porto School of Nursing, Portugal.
authors.forename: Wilson
authors.initials: W
authors.lastname: Abreu
authors.affiliation: University of the West of Scotland, UK.
authors.forename: Debbie
authors.initials: D
authors.lastname: Tolson
mesh_terms: D032722:Advance Care Planning; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000150:complications / Q000523:psychology* / Q000628:therapy*; D006801:Humans; D010166:Palliative Care; D013727:Terminal Care
keywords: advanced dementia; integrative literature review; palliare; palliative care