Young Onset Dementia (YOD)

Care England is delighted to have partnered with Dementia Forward and Wellburn Carehomes to champion the issues faced surrounding the issue with Young Onset Dementia (YOD).

The three organisations published Young Onset Dementia: Current Struggles & Recommendations, a report outlining the main problems and solutions to YOD and how the government and other third-party organisations can help.

This website page hosts all of Care England’s information and resources relating to the YOD project. If you have any questions, please contact Lauren Hague, Senior Policy Officer (lhague@careengland.org.uk).

Key links

1. Short Read: Young Onset Dementia: Current Struggles & Recommendations
2. Full Report: Young Onset Dementia: Current Struggles & Recommendations
3. Press Release: Care England Calls for Greater Support for Young Onset Dementia 
4. Dementia Forward: U&ME Campaign
5. Framework for a National Young Onset Centre of Excellence
6. Working Model of Local Communities and Support Network

1. Short Read: Young Onset Dementia: Current Struggles & Recommendations

This shorter read outlines the main problems facing this issue and the main recommendations, some of the main issues are:

1. Incorrect Data
2. Gap in the Knowledge
3. Long Waiting Times
4. Limited Community Support
5. Absence of Long-Term Care Facilities

Read the short read briefing here.

2. Full report: Young Onset Dementia: Current Struggles & Recommendations

Care England, Dementia Forward and Wellburn Carehomes published Young Onset Dementia: Current Struggles & Recommendations.

The report outlines the findings of the issues and solutions regarding Young Onset Dementia and how these changes could be bought around on both national and local scales.

Read the full report to find out more!

3. Press release: Care England Calls for Greater Support for Young Onset Dementia  

Professor Martin Green OBE, Chief Executive at Care England, said:

“Young Onset Dementia is a growing crisis that demands immediate attention. People living with YOD face a long journey of misdiagnosis, inadequate support, and social isolation. As the voice of the social care sector, Care England calls on the government to take decisive action—invest in age-appropriate care facilities, ensure funding for community services, and train primary and secondary professionals to recognise and respond to the unique needs of those with YOD. Without these changes, we risk leaving thousands of individuals and their families without the support and dignity they deserve.”

Read the full press release, with reaction from all key stakeholders, here.

4. Dementia Forward: U&ME Campaign

On 31st October 2022, Dementia Forward launched the U&ME Campaign with the support of Peter Deaman from Lateral Consultancy, whose close friend of nearly 40 years, Jonathan Beardsworth, is living with young onset dementia. Jonathan was 64 on the 24th October 2022, which is now marked annually as national Young Onset Dementia Awareness Day; to highlight the impact of young onset dementia.

Peter and Jonathan are passionate about instigating change and are working with Dementia Forward on the U & Me Campaign to help Create a Voice for Young Onset Dementia.

The U&ME Campaign Key objectives:

1. Raise awareness, and keep people living with young onset dementia doing what they love for as long as possible.
2. Deliver a pioneering, specialist, age appropriate care and support model for Yorkshire

5. Framework for a National Young Onset Centre of Excellence

In our report, we called for enhancing knowledge in Primary and Secondary Care in order to prevent the current struggles faced by people experiencing Young Onset Dementia. This framework, created by Dementia Forward, outlines what a National Young Onset Centre of Excellence would look like if funded and developed.

Click here to view in full.

6. Working Model of Local Communities and Support Networks

As outlined in our government recommendations, local authorities need funding to develop age-appropriate services for YOD patients and their families both in the community and within health and social care services. This includes support groups, tailored exercise programs, mental health services, and learning engagement opportunities. Dementia Forward has created this working model to share.

Click here to view.