The Dementia Inclusion Network held a focused session in Bridlington on 7th May 2026 holding two separate conversations, one with a group of people with dementia and the other, their care partners. The aim being to provide lived experience insight to inform Brain Health work with Bridlington Neighbourhood Health Partnership. Notes, quotes and themes from these two perspectives are presented in the following documents:
- Dementia Inclusion Network 7th May 2026 carers session notes
- Dementia Inclusion Network 7th May 2026 summary report
- Dementia Inclusion Network 7th May 2026 meeting quotes
A series of key points obtained from the meeting are shown below. Please also see the East Riding JSNA dementia page for more information on dementia.
Key takeaways from people with dementia
Community, understanding, respect, and meaningful support make a major positive difference
Stigma, poor communication, and lack of information after diagnosis remain major barriers
Key takeaways from carers of people with dementia
Clearer information earlier
Consistent support across
all GP practices
Better follow-up after diagnosis
A single named contact or navigation service
More recognition of carers’ emotional and financial pressures
Key points from people living with dementia
The documents aimed to capture the discussions at the event as to how people living with dementia experience support, stigma, diagnosis, relationships, and daily life, while strongly arguing for dignity, inclusion, and recognition of their continuing strengths and agency. Community, understanding, respect, and meaningful support make a major positive difference to people living with dementia. It also makes clear that stigma, poor communication, and lack of information after diagnosis remain major barriers.
Key points:
1. Peer support is vital: A major message in the report is that the Right Minds group provides a strong sense of belonging and reassurance. Participants described it as a place where they feel welcomed, understood, and less alone.
2. People want to be recognised as whole individuals, not defined by dementia: Participants stressed that dementia does not erase their identity, intelligence, or worth. They wanted others (both the public and professionals) to understand that they are still themselves, even if some aspects of memory or daily life have changed.
3. Diagnosis is experienced differently by different people: There is no single emotional or practical response to diagnosis. Some participants did not feel noticeably different at first and struggled to reconcile the diagnosis with everyday life. Others gradually became aware of changes through memory difficulties, confusion, or shifting relationships.
4. Stigma and misunderstanding remain serious barriers: Participants described how public attitudes often make dementia harder to live with than the condition itself, e.g. assuming dementia means someone is incapable or foolish. There was also criticism of the media present dementia only in extreme, frightening, or hopeless ways.
5. Dementia affects independence and relationships in complex ways.
6. Other health conditions and practical issues should not be overshadowed by dementia.
Key points from carers
Similarly, carers’ experiences were gathered, which included navigating dementia diagnosis, support, and services, and revealing major gaps in information, coordination, and consistency across the East Riding. It was emphasised how important peer support groups like Right Minds are in filling the gaps left by formal services.
Key points:
1. Poor information and lack of joined-up support: Carers often felt unsupported after diagnosis and said there was no clear guidance on what help was available. Many only discovered support options through the Right Minds Carers group, rather than through formal services.
2. Need for a “Tell Us Once” or one-stop service: A strong theme was the need for a single, joined-up point of contact so carers do not have to repeat their situation to multiple services. Carers felt this would help not just in dementia care, but across all long-term illnesses.
3. Inconsistent experiences depending on GP or area: Support varied significantly depending on location and GP practice, creating what carers described as a postcode lottery. Holderness Health was mentioned as an example of better practice, particularly for clearer post-diagnosis support and annual reviews.
4. Emotional, physical, and financial toll on carers: Carers described their role as overwhelming, exhausting, relentless, and isolating. Some spoke about decades of caring, feeling dismissed by services, and struggling financially. Several powerful comments described the impact on their wellbeing and identity.
5. Problems with follow-up and carers’ reviews: Carers reported poor follow-up after diagnosis, limited information from Dementia Adviser services, and irregular or rushed carers’ reviews. Many felt that reviews were either not happening or not meaningful.
6. Difficulties accessing services and benefits: Carers described long waits for diagnosis, barriers to accessing respite or sitting services, and needing a formal diagnosis before getting practical support such as disability benefits, bus passes, or radar keys.
7. Right Minds group seen as vital: The Right Minds group was repeatedly described as a lifeline that provided emotional support, practical information, peer learning, and reduced isolation. Several carers said it had effectively “saved” them.
8. Need for better information-sharing and directories: The discussion also highlighted the value of having a clear directory of dementia and carers’ groups across East Riding, so people can stay active, connected, and informed about available support.