Maintaining Personhood and Identity in Dementia: Families as Partners in Care

Abstract

Dementia is characterized by the progressive decline in cognitive and daily functioning. Although the decline is often the defining characteristic of dementia in biomedical models, several scholars highlight the preserved skills of persons with dementia. Identity, or a sense of self, is among the areas relatively preserved in the later stages of dementia. It is the window through which caregivers understand the subjective experiences of persons with dementia.

This qualitative exploratory study highlights the value of social relationships, particularly the role of the Filipino family in recognizing personhood and maintaining identity in dementia care. Preserving identity entails understanding the person’s unique characteristics that reflect one’s sense of self. In a highly collectivistic culture, such as the Philippines, the family is crucial to preserving identity and overall well-being in dementia. This study explores the perspectives of 15 Filipino caregivers as regards caring for a family member with dementia. Participants discuss changes in family structure and the challenges in dementia care. More importantly, they delve into strategies used to preserve identity and encourage life participation in their loved one with dementia. Essential Filipino cultural values in dementia care, such as collectivism, religion, and the values of filial piety and utang na loob (or debt of gratitude) are further discussed.

Citation

Santos, T.O., Ulatowska, H.K. and Cuadro, C.K.A. (2023), "Maintaining Personhood and Identity in Dementia: Families as Partners in Care", Gregorio, V.L., Batan, C.M. and Blair, S.L. (Ed.) Resilience and Familism: The Dynamic Nature of Families in the Philippines (Contemporary Perspectives in Family Research, Vol. 23), Emerald Publishing Limited, Leeds, pp. 127-144. https://doi.org/10.1108/S1530-353520230000023008