We encourage all our project partners and stakeholder members to urge actions to improve care and create dementia-friendly society for people affected by dementia and ease their & their families’ lives. 

Millions of people worldwide are living with dementia, and nearly 10 million new cases are diagnosed each year (WHO). Alzheimer Europe estimates that the number of people living with dementia in Europe will almost double by 2050, rising to 18,846,286 in the wider European region (source:  Alzheimer Europe ) .

JADEMENTIA (Joint Action addressing DEMENTIA and HEALTH) is one of the 20 EU flagship initiatives funded by the European Union’s EU4Health fund aligning with the European Commission’s strategy: ‘Comprehensive Approach to Mental Health 2023’ launched to address the significant public health challenges and burden of mental disorders to support mental health. 

Dementia Awareness Week provides the opportunity to share new findings of the Dementia Awareness Questionnaire, developed within our Work Package 10: Vulnerable groups and stigma awareness raising. 

The survey included 10 questions and was designed to be filled out voluntarily in order to receive information from people with lived experience; patients with mild or moderate dementia and/or by their family members, caregivers across several countries. 

We wished gaining insight on their experiences, to learn if they observe social prejudice, and if yes, in what situations they have encountered hurtful or unfair treatment. 

By listening to their voices, we wished to channel their experiences back to society revealing shared challenges that go far beyond the clinical condition. 

Countries involved in the questionnaire: Spain, Germany, Hungary, Bulgaria and Malta 

A total of 806 responses have been collected across participating countries:

• Spain: 359 responses 
• Germany: 206 responses 
• Hungary: 107 responses
• Bulgaria: 114 responses 
• Malta: 20 responses 

Some of the conclusions to share: 

Changes beyond memory 

Dementia affects not only memory and thinking, but also daily routines, relationships, autonomy, identity, and emotional well-being. It reshapes everyday life in profound ways. 

Many respondents feel that, after receiving diagnosis, society tends to see the person as “incapable”or “a burden”. Stigma, fear, and discomfort still influence how people are perceived and treated. 

Language matters 

Respondents strongly reject dehumanising and oversimplified narratives, including infantilisation or assumptions that people with dementia cannot understand or participate. These attitudes are seen as harmful, reinforcing exclusion and denying individuality and dignity.Unfair treatment occurs across multiple settings: within families,healthcare systems, and public spaces. While not always constant,it is frequent enough to point to a broader societal issue. 

The need to raise awarness at societal level with the involvement of the general public was striongly highlighted; stressing involvement of professionals, policymakers, young people, media, and organisations. Not only to increase their knowledge, but to change their attitudes, language, and behaviours.This means recognising dignity, identity, and the ongoing capacities of people living with dementia, as well as the effort of those who care for them. 

JADE Health is committed to translate people’s voices with lived experience into meaningful actions that can lead to reducing stigma, improvement of societal understanding, so that together we could build more supportive and inclusive societies for them and also for those, who provide care for them