“That She Is Unique Is Clear”: Family Members Making Sense of the Uniqueness of Persons with Dementia and Persons with Profound Intellectual and Multiple Disabilities

Sanne Nieuwenhuis (), Sien Vandesande, Sara Nijs and Bea Maes
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Sanne Nieuwenhuis: Parenting and Special Education Research, KU Leuven, 3000 Leuven, Belgium
Sien Vandesande: Parenting and Special Education Research, KU Leuven, 3000 Leuven, Belgium
Sara Nijs: Parenting and Special Education Research, KU Leuven, 3000 Leuven, Belgium
Bea Maes: Parenting and Special Education Research, KU Leuven, 3000 Leuven, Belgium

Social Sciences, 2025, vol. 14, issue 9, 1-19

Abstract: Family plays an important role in person-centered care (PCC) within long-term care facilities, especially for individuals with high-support needs such as dementia or profound intellectual and multiple disabilities. The goal of PCC is to live a meaningful life by, for instance, acknowledging personhood. Uniqueness is an important attribute of this personhood. Family members contribute significantly to PCC by sharing their knowledge of their relatives’ uniqueness. This study explores how family members interpret and give meaning to the uniqueness of their relatives with high-support needs through interpretative phenomenological analysis. Six participants participated in a semi-structured interview. The first research question was about what the uniqueness of their relatives is and resulted in different themes: who she used to be, who she is now, who she will become, change, and (importance of) family ties. The second research question was about the discovery of this uniqueness and resulted in the following themes: daily search, and discoveries from childhood. How this uniqueness comes to the fore, the third research question, brought forward themes such as care provided by family members, shaping care in the care organization, and importance of place. This study demonstrates that family members can describe the uniqueness of individuals with high-support needs and help shape PCC.

Keywords: personhood; dementia; profound intellectual and multiple disabilities; person-centered care; interpretative phenomenological analysis (search for similar items in EconPapers)
JEL-codes: A B N P Y80 Z00 (search for similar items in EconPapers)
Date: 2025
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