Personhood and Dementia Care: A Qualitative Evidence Synthesis of the Perspectives of People With Dementia

Gerontologist. 2021 Apr 3;61(3):e85-e100. doi: 10.1093/geront/gnz159.


Background and objectives: Personhood is considered the cornerstone of person-centered care for people with dementia. However, there is little research on personhood in dementia care from the perspective of the person with dementia themselves. This article presents a qualitative evidence synthesis of the experiences and perceptions of people with dementia on personhood in dementia care.

Research design and methods: A systematic search of nine databases was conducted. In addition to initial screening, CART analysis was used to determine the most relevant papers. Thematic synthesis was conducted on 20 papers. The CASP tool was used to examine the quality of the included papers. GRADE CERQual analysis examined confidence in the review findings.

Results: People with dementia experience many changes due to the disease and the experience of being cared for in different settings. Personhood is affirmed through personal interactions with family, friends, other care recipients, and formal caregivers, as well as through continued engagement in social and occupational roles.

Discussion and implications: The review has important implications for practice, regulation, and policy. The person and their personhood should be protected rather than undermined, and relationships should be enhanced not diminished by the formal care process. The focus should be on creating and amplifying opportunities for people with dementia to affirm the self through interactions with others and engaging in occupational and social roles to ensure continuity of self.

Keywords: Person-centered care; Self-identity, Selfhood, Care settings; Thematic synthesis.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Caregivers
  • Dementia*
  • Friends
  • Humans
  • Personhood*
  • Qualitative Research