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

In Germany, between 25,000 and 60,000 people under the age of 65 live with dementia, and the number is growing steadily. Dementia is associated with a high risk of experiencing stigmatization. Stigmatization means that a person is denied full social acceptance and thus recognition as a person due to a certain characteristic. Dementia stigma includes, among other things

• Misconceptions about dementia
• Negative emotions about dementia and people with dementia
• Stereotypical attributions of negative characteristics
• Negative evaluation of the person with dementia
• Resulting actions towards the person with dementia

Stigmatization due to dementia not only has an impact on mental and social health, but also contributes to people ignoring symptoms in themselves or hiding them from others. This represents a barrier to the system of care for people with dementia and their relatives. From a social perspective, it is a challenge when groups of people have fewer opportunities to participate and are at risk of exclusionary processes. Starting points against the stigmatization of people with dementia are not only important for the individual person, but also for the overarching goal of an inclusive society.

Project aims

The research project focuses on the effects of stigmatization in the living environment of people with dementia at a younger age and their adult relatives. The following questions will be investigated:

• In which areas of the lifeworld is stigmatization experienced?
• What forms of stigmatization are experienced?
• What consequences of stigmatization are experienced?
• What differences can be observed between people (e.g. in relation to intersectionality)?

The aim is to examine in greater depth the forms of stigmatization experienced due to dementia at a younger age in order to identify specific approaches to combat the stigmatization of people with dementia and their adult relatives.

Methods

The project uses a qualitative-interpretative research design. Episodic interviews are used to record how stigmatization due to dementia is experienced by people with dementia at a younger age and their adult relatives.

Expected results

The findings will be translated into recommendations for action and then made available to the (specialist) public. In terms of content, the recommendations for action should in particular provide information on how stigmatization due to dementia at a younger age and its consequences can be counteracted.

How you can participate

We are looking for people for our study:

• People with dementia who were diagnosed with the disease before the age of 65.
• Adult relatives of young people with dementia. This includes, for example, family members and close friends.

The interview takes place in person, by telephone or digitally by arrangement with you. If you are interested, please give us a call or send us an e-mail. Further information can be found in the study flyer.