Care England Calls for Greater Support for Young Onset Dementia

Care England, the leading voice of adult social care providers in England, marks Young Onset Dementia Awareness Day by launching  resources  designed to raise awareness and advocate for urgent government action to support individuals living with Young Onset Dementia (YOD) across England.

YOD develops under the age of 65, sometimes as early as in one’s 30s and poses distinct challenges, including delayed diagnosis, economic strain, significant impact on work and family life, and the absence of age-appropriate care services. The current care pathway in England often fails to meet the needs of these individuals, leaving many without the tailored support they need to live well.

Professor Martin Green OBE, Chief Executive of Care England, commented:

“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.”

Jill Quinn MBE, Chief Executive of Dementia Forward, the charity behind Young Onset Dementia Awareness Day, also emphasised the need for immediate action:

“As the leading dementia charity for York and North Yorkshire, we understand the profound impact of young onset dementia on individuals and their families. The average time to diagnosis remains unacceptably long, and too often, people affected by YOD are left isolated without the right support. At Dementia Forward, we believe in a community-based approach that integrates support into the everyday lives of those affected. We urge the government to prioritise YOD in their policies, ensuring that individuals receive tailored care and the opportunity to live well within their communities. This day is about raising awareness, but it’s also a call for action.”

Karen Thomas, Head of Young Onset Services at Dementia Forward, continues:

‘We have been supporting people of working age with dementia for 11 years and have proved that a different approach to support is essential to meet the unique challenges that these families face. They deserve to be seen and heard and for actions to be taken. For a number of years, people with young onset dementia have made up 7.5% of our caseload in North Yorkshire; the national statistics have now caught up to the same figure. We are ahead of the curve, and have a model ready to share, so that people with young onset dementia nationally don’t have to wait any longer to get the care and support they require.’

Care England’s recommendations include increasing investment in specialised care facilities, expanding community support services, and launching a public awareness campaign to reduce stigma and promote early intervention. Read them in full at this link.