Title of Article‘Hybrid’ thoughts on care for people with dementia and their families: critical perspectives on care work
Type of ArticleSpecial Issue Article
Author/sGøril Ursin
ReferenceVolume 10, Special Issue on Critical Perspectives on Person, Care and Aging, Article 4
Date of Publication March 2020
KeywordsCare work, caring, citizenship, dementia, practice theory

Background: Inclusion and participation are rights for all, according to the United Nation’s Universal Declaration of Human Rights. Historically, dementia has been defined primarily in terms of loss – loss of cognitive and communicative skills, loss of identity and personhood, and loss of personal relationships (Capstick and Baldwin, 2007). Critical perspectives have challenged this view on people living with dementia and enabling people to participate as equal citizens in society is a significant theme in dementia research. This article uses a citizenship approach to dementia and illustrates how care and care work needs values shifts to enable people with dementia to become equal citizens in society.

Aim: This article aims to demonstrate the effect on care work when citizenship is chosen as a value for care.

Methods: This article draws on empirical qualitative interviews with families living with dementia, healthcare and medical personnel, and care managers who are part of everyday life for these families. Analytically, the article draws on citizenship theory and empirical philosophy.

Results: Two necessary values shifts are outlined: from patient to citizen and from personal care to care collectives. These ways of doing care work depend on other practices, especially the way knowledge and experience is constructed and understood. This article discusses the need for other forms of knowledge and expert experience.

Conclusions and implications for practice:

  • Caring for people with dementia needs a values shift toward enhancing agency
  • Re-orienting care work towards care collectives shapes new possibilities for people living with dementia
  • Care work that pays attention to the construction of everyday life can promote participation and inclusion for people living with dementia

This article by Gøril Ursin is licensed under a Creative Commons Attribution Non-Commercial 3.0 License.

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