Experience of Younger-Onset Dementia Stigma: Protocol for a Constructivist Grounded Theory Study Based on Qualitative Episodic Interviews With People Living With Dementia and Their Significant Others

Abstract

Stigma based on younger-onset dementia (YOD) is a significant challenge for individuals living with the condition and their significant others (i.e., family and/or friends) as well as for a society that aspires to be inclusive, ensure social participation, and enable all people to exercise their civil and human rights. The STELDA study aims to develop a theoretical framework of YOD stigma and stigmatization that is empirically grounded in the lived experience of people living with younger-onset dementia (PlwYOD) and their significant others and to identify ways of counteracting YOD stigmatization processes in the sociocultural context of Germany on a lifeworld level. The research question is as follows: How do PlwYOD and their adult significant others experience stigma and stigmatization based on YOD in their lifeworlds, and what implications do these experiences have for their actions in their lifeworlds? The study is designed as a constructivist grounded theory (CGT) study. Qualitative episodic interviews with community-dwelling PlwYOD and their adult significant others will be conducted to give participants the opportunity to share their individual narratives and express their subjective views. As an outcome, recommendations for action will be developed for the public and for professionals in diverse settings. On a methodological level, novel insights will be gained regarding specific issues related to qualitative research with PlwYOD and their significant others.