title: Needs of people with severe dementia at the end-of-life: a systematic review.
abstract: BACKGROUND
  Epidemiological data shows an increasing number of people affected by dementia. It is mentioned that people with severe dementia have special care needs which are intensified at the end-of-life.
  
  
  OBJECTIVE
  This paper offers a systematic analysis of the current status of research on the needs of people with severe dementia in the last phase of their lives.
  
  
  METHODS
  A systematic review of the MEDLINE, CINAHL, Cochrane Library, PsycINFO, and AMED databases performed up to April 2014 was further expanded by contacting experts, conducting internet searches, and screening relevant reference lists. Studies were screened according to defined criteria and appraised for methodological quality. Findings were then synthesized using a narrative thematic approach to identify and categorize relevant needs into thematic categories and subcategories.
  
  
  RESULTS
  A total of ten studies published from 1993-2013 were identified, encompassing qualitative (n = 7), quantitative (n = 2), and a mixed-methods study (n = 1). Data synthesis yielded seven themes, with physical, social, and psychological needs the categories most frequently mentioned. Other categories were spiritual, supportive, and environmental needs and needs related to individuality. Needs were often named, but what they entailed operationally was not highlighted in detail.
  
  
  CONCLUSIONS
  This systematic review shows the paucity of empirical findings on the needs of people with severe dementia. The structured presentation of thematic categories points to a clearer delineation of these needs. Thus, this overview emphasizes the topics for future research and can likewise serve as an orientation for care provision.
authors.affiliation: Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Klaus Maria
authors.initials: KM
authors.lastname: Perrar
authors.affiliation: Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Holger
authors.initials: H
authors.lastname: Schmidt
authors.affiliation: Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Eisenmann
authors.affiliation: Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Bernadette
authors.initials: B
authors.lastname: Cremer
authors.affiliation: Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
mesh_terms: D003704:Dementia / Q000451:nursing*; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D013727:Terminal Care / Q000379:methods* / Q000706:statistics & numerical data*
keywords: Dementia; health services needs and demand; palliative care; review; terminal care