Young Dementia Network

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Young Dementia Network

Young Dementia Network is a collaboration between people affected by & working in the field of young onset dementia.

We are united in our purpose to improve the lives of people with young onset & their families now & create positive change for the future. The Young Dementia Network

• is focused on the needs and wishes of the person living with young onset dementia and their family.

• connects and informs people - empowering and enabling members by sharing knowledge, creating resources and providing a welcoming community.

• campaigns for change to policy and practice to provide high quality tailored support and provision for young onset dementia.

• works to increase knowledge, understanding and awareness of young onset dementia.

• has a growing membership that includes people living with young onset dementia, family and friends, as well as people working in health and social care, the voluntary and dementia research sectors.

• is free to join and inclusive. Members may choose to join simply to keep informed, or to get actively involved in our campaigns, activities and in research opportunities.

• is a digital community. Every member receives a regular e-news update, and access to free young onset dementia resources.

• is led by a Steering Group of people living with young onset dementia and family members, senior specialist health care clinicians and academic researchers, and leaders of related voluntary and provider organisations.

• is hosted by Dementia UK.

07/10/2026

Over a recent 10-week period, disAbility Cornwall & Isles of Scilly delivered a landmark Young Onset Dementia Pilot Programme in Redruth, in partnership with LivDem, for people under 65 who have recently been diagnosed with .

The Living Well with Dementia Young Onset Programme was designed to help people to:

☑️ understand what’s happening in the early stages after diagnosis
☑️ feel more confident about the future
☑️ gain practical information they can use
☑️ share experiences in a safe and understanding space

When the programme ended, attendees were filmed talking about their experiences and what the group meant to them. You can watch the video here: https://www.youtube.com/watch?v=UfJflR9wyls

02/10/2026

The Young Dementia Network is looking forward to attending Dementia Forward's U&ME young onset conference at York Racecourse on Tuesday 20th October 2026.

The conference will bring people together to listen, learn and explore new ways of working collaboratively for the benefit of people living with young onset dementia and those who support them.

Find out more or book tickets here: https://www.dementiaforward.org.uk/you-me-campaign/

01/10/2026

Beyond Dementia has launched a new online support group for people who care for someone living with young onset dementia.

Free to attend, the relaxed and supportive group meets fortnightly on Wednesdays from 7-8.30pm.

To find out more, call 01380 739055 or visit the Beyond Dementia website:
https://beyonddementia.org.uk/services/caring-for-someone/support-groups-for-carers

29/09/2026

"Awareness of young onset dementia – where symptoms develop before the age of 65 – has grown significantly.

"More people now understand that can affect younger people, who are often working, raising families or supporting others."

To mark the ten year anniversary of the Young Dementia Network, Dr Hilda Hayo OBE reflects on the Network’s achievements over the past decade and her hopes for the future.

Read her reflections on our website: https://www.youngdementianetwork.org/news-and-events/celebrating-10-years/

27/09/2026

The Young Dementia Network was launched 10 years ago today with the goal of raising awareness of young onset dementia and improving the lives of people affected by the condition.

Over the last 10 years we've hosted 43 webinars, attended by over 5,100 people, with more than 150 panellists sharing their professional or lived experience.

We send out 10 newsletters a year to our membership of over 7,300 people - around 40% are living with young onset dementia, or are family members or friends.

Celebrate our 10 year anniversary by joining the Network today: https://www.youngdementianetwork.org/join-the-young-dementia-network/

25/09/2026

We are delighted to announce that Catherine Kiely, the Young Dementia Network Coordinator, will be one of the speakers at UK Dementia Congress in November 2026. It is the largest annual multi-disciplinary dementia-focused event and exhibition in the UK. 🧠

Catherine will be discussing ‘Why peer support matters for families affected by young onset ' alongside Michael Booth, who is a Network Steering Group member and is living with the condition.

Early bird tickets are on sale on the Dementia Community website until Wednesday 30th September 2026; further discounts and concessions are available: https://journalofdementiacare.co.uk/event/uk-dementia-congress-2026

24/09/2026

Would you be willing to help researchers from the University of East Anglia develop an online tool – the FTDToolkit – to support carers? 🧰

The team is recruiting people who are currently supporting a family member living with frontotemporal to make sure the FTDToolkit works for carers.

Visit the FTDToolkit website to find out more: https://ftdtoolkit.org/

18/09/2026

The Young Dementia Network is supporting Dementia UK's campaign calling on the Health Secretary to fix NHS continuing healthcare (CHC) funding once and for all.

Trish's husband, Mike, is 63 years old and lives with young onset dementia. They applied for CHC funding to help cover the costs of Mike's care home fees, but the application was rejected.

Join Trish and nearly 23,000 others by signing the petition today: https://action.dementiauk.org/fix-nhs-continuing-healthcare

16/09/2026

We're continuing to engage with the Casey Commission as it reviews adult social care in England, making sure the voices of people affected by young onset dementia are heard.

Following the launch of the Commission's Big Conversation on Care, we worked with Dementia UK and National Voices to hold a focus group bringing together people affected by young onset dementia.

This gave them an opportunity to share their views and help shape the Commission’s recommendations for reforming adult social care.

Want to get involved? Take part in The Big Conversation on Care here: https://caseycommission.co.uk/bigconversation/

15/09/2026

The 20th UK Dementia Community Congress takes place on Tuesday 17th and Wednesday 18th November 2026 at Doncaster Racecourse.

It is the largest annual multi-disciplinary dementia-focused event and exhibition in the UK, and the programme includes a number of young onset dementia-related presentations.

We are delighted to announce that Catherine Kiely, the Young Dementia Network Coordinator, will be one of the speakers. She will be discussing ‘Why peer support matters for families affected by young onset dementia’ alongside Michael Booth, who is a Network Steering Group member and is living with young onset dementia.

Early bird tickets are available until Wednesday 30th September 2026; further discounts and concessions are available: https://journalofdementiacare.co.uk/event/uk-dementia-congress-2026

Address

Dementia UK, 7th Floor, One Aldgate
London
EC3N1RE

Website

http://www.youngdementianetwork.org/

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