On Monday 6 July, a consultation with four people with lived experience of rarer dementias was held as part of the JPND-funded ENSURED project. During the consultation people living with rarer dementias highlighted that they often face hidden challenges due to limited awareness and understanding from healthcare professionals, families, and society. They also explained that, although many people may appear well or continue daily activities unaided, they may experience significant difficulties that affect communication, vision, information processing, mobility, and energy levels. Different types of rarer dementias, including behavioural variant frontotemporal dementia, vascular dementia, and posterior cortical atrophy, therefore require different approaches to support participation in Public Involvement activities. The consultation also helped to illuminate that flexible planning, accessible environments, clear information, and calm settings are needed, to help people feel more comfortable and included.
Overall, the consultation highlighted 1) the importance of personalised and inclusive approaches in involvement activities; 2) Supporters play a key role by providing practical help, reassurance, and assistance, although support needs vary between individuals and countries; 3) Creative and flexible methods, such as visual tools and alternative ways of sharing experiences, can help people participate more fully.
This was an important first consultation for the ENSURED project that will influence subsequent activities across the project.
This project is supported by the Luxembourg National Research Fund (INTER/JPND25/19533865/ENSURED), under the aegis of the EU Joint Programme - Neurodegenerative Disease Research (JPND) - www.jpnd.eu
