Stigmatization due to dementia (STELDA)

Experiences and effects in the living environment of people with dementia at a younger age and their adult relatives

Background

The STELDA research project was part of Germany’s National Dementia Strategy and was implemented with funding from the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth (BMFSFJ). It was one of four research projects under Measure 4.3.11, “Research on the everyday life worlds of people with dementia,” and it specifically focused on the perspectives of people living with dementia in their day-to-day contexts.

The project was based on the premise that social participation cannot be secured solely through formal inclusion policies, but is instead the outcome of concrete social interactions in everyday life. Social acceptance and recognition are central here: where non-recognition and devaluation prevail, people are excluded or withdraw from social interactions themselves. To analyze these processes, STELDA drew on the sociological concept of stigma following Erving Goffman, which understands stigma as a process of social construction in which a negatively interpreted attribute becomes the basis for disrespect and discreditation.

Any dementia can become the basis of stigma. In young-onset dementia, additional specific conditions apply: the condition is rarer, public awareness is lower, diagnoses are often delayed, and behavioral and personality changes may come to the fore more strongly than memory difficulties. At the same time, people in this life phase are typically embedded in professional, family and social roles of responsibility, making discrepancies between societal expectations and changing conditions particularly visible – thus fostering stigmatization. Support structures are often tailored to older target groups and do not always match the needs of younger people and their families. At both the individual and societal level, the consequences are not limited to psychosocial effects such as shame, distress and social withdrawal. Stigma can also contribute to the fact that care and support services fail to reach people living with young-onset dementia and their families.

Project aims

At the heart of the project was the question of how stigmatization in the context of young-onset dementia (symptom onset before the age of 65) affects the lives of people living with dementia and their families. The study addressed the following research questions:

• In which areas of the lifeworld is stigmatization experienced?
• What forms of stigmatization are experienced?
• What consequences of stigmatization are experienced?

The aim was to examine in depth the forms of stigmatization experienced in relation to younger-onset dementia in order to identify concrete entry points for counteracting the stigmatization of people living with dementia and their families.

Methods

Methodologically, STELDA adopted an interpretive approach and employed qualitative episodic interviews with two groups: people living at home with young-onset dementia and adult relatives. Data collection took place between June 2023 and June 2024 and was conducted in person, via video calls, by telephone, or asynchronously in written form via a messenger service. In total, 28 interviews were carried out with 33 participants (10 people with young-onset dementia and 23 relatives). The data were analyzed using MAXQDA, following Constructivist Grounded Theory (Charmaz) through a multi-stage coding process. The guiding principle was to reconstruct stigmatization as situational, dynamic and contextual, while taking into account different levels of dementia-related stigma (public stigma, stigma experiences, self-stigma, and stigma affecting relatives).

Results

The research findings will be published shortly.

Building on these results, recommendations for action were developed in a three-stage, partly participatory process: first, fields for action were identified from the empirical data; second, these were elaborated in an online workshop with participants; and third, they were assessed in an online survey by experts from policymaking, academia, welfare organizations, self-help groups and counselling services with regard to their suitability and feasibility.

Further information:

Study Protocol: https://doi.org/10.1177/16094069241232346