How we have involved people with dementia, carers and professionals

We have held a number of events to look at ways to improve services and support for people living with dementia, including:

• A series of hackathons to inform our plans (hackathons bring professionals and people with lived experiences together to look at ways to tackle issues and challenges)
• A co-production workshop to map pre and post diagnosis journeys for people with dementia to identify good practice and ways to improve this experience
• A workshop to look at Memory Assessment Services to influence an improved way of working
• An immersive hydra minerva session with professionals and people with lived experiences
• Took part in ‘Turn Ponty Blue’, to recruit community listeners

How can services be improved?

In summary, people living with dementia, their families and carers would like:

• Practical support for carers on how to support their loved one, how to talk to them and how to care for them, including establishing routines
• Access to accessible information and for services to be joined up
• More education for the person with dementia, their families and staff to ensure the right information and support is being provided
• Social opportunities after diagnosis to maintain their identities
• Memories and moments to be used as conversation starters to support people staying true to their identity. This should be incorporated into environments where people are receiving care and support, so we are capturing the things that are special and important for people with dementia

You can read a summary around each area below. 

Getting the right information and support

“You can’t have good support without information on what people need from their perspective.”

• People with dementia and carers would like support pre and post diagnosis to help them understand more about living with dementia, and services and advice available.

Ideas for positive change include:

• Looking at similar work taking place in the region, and find ways to share resources and ideas
• Creating inclusive communication materials, and providing counselling, links to community groups, accessible technology and practical advice such as accessing benefits
• Sharing and celebrating best practice

Journey to diagnosis

“It can be difficult to get people with dementia to engage because of stigma. The diagnosis doesn’t have to be a terrifying label.”

People with dementia and their carers would like support to receive a timely diagnosis, and understand what information and advice is available afterwards.

Ideas for positive change included: 

• Providing mobile health checks with a cognitive wellbeing assessment as part of this
• Continue to raise awareness of dementia to reduce stigma, and encourage people to seek a diagnosis

Life after diagnosis

“People need to be supported to maintain their identity.”

People with dementia and their carers want to feel like they can still enjoy their lives and supported to retain their identities and interests.

Ideas for positive change included: 

• Services to be available in local communities so they are easily accessed
• Charities to help people with digital skills to broaden their access to support services
• Create more dementia friendly communities
• Develop local hubs for carers where they can receive more information e.g. cookery classes, spaces to breathe, connect and develop networks