The extended palliative phase of dementia: an integrative literature review

Elizabeth Hanson, Amanda Hellstrom, Asa Sandvide, Graham Jackson, Rhoda MacRae, Anna Waugh, Wilson Abreu, Debbie Tolson

Research output: Contribution to journalArticlepeer-review

21 Citations (Scopus)
216 Downloads (Pure)


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 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’.
Original languageEnglish
Pages (from-to)108-134
Number of pages27
Issue number1
Early online date26 Jul 2016
Publication statusPublished - 1 Jan 2019


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