Young-onset dementia - more resources

Other organisations that may be helpful for younger people with dementia.

Useful organisations 

British Institute of Learning Disabilities (BILD)

0121 415 6960
[email protected]

BILD works to improve the lives of people with disabilities. It provides a range of information in print and online.

Citizens Advice

Your local Citizens Advice can provide information and advice in confidence or point you in the right direction. To find your nearest branch, look in the phone book, ask at your local library or look on the Citizens Advice website (above). Opening times vary.

CJD Support Network

0800 085 3527 (helpline)
[email protected]

Supports people with prion diseases, including forms of Creutzfeldt-Jakob disease (CJD). Provides a range of information on the various forms of prion disease, and works with professionals to improve the level of care provided for people with these conditions.

Disability Service Centre

For Disability living allowance

0800 121 4600 (free helpline open 8am to 6pm weekdays)
0800 121 4523(textphone)

For Attendance allowance

0800 731 0122 (free helpline open 8am to 6pm weekdays)
0800 731 0317 (textphone)

For Personal independence payment

0800 121 4433 (free helpline open 8am to 6pm weekdays)
0800 121 4493 (textphone)

The Disability Service Centre provides advice and information about claims for Disability living allowance, Attendance allowance or Personal independence payment.

Rare Dementia Support

07592 540555
[email protected]

Rare Dementia Support runs specialist support group services for individuals living with, or affected by, one of five rare forms of dementia: frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, familial Alzheimer’s disease and familial frontotemporal dementia.

The Lewy Body Society

0800 888 6678
[email protected]  

The Lewy Body Society is a charity that aims to raise awareness of DLB for the general public and educate those in the medical profession and decision-making positions about all aspects of the disease. They also support research into the disease.

Young Dementia UK

01993 776295 (general enquiries)
01865 794311 (support-related enquiries)
[email protected] (general enquiries)
[email protected] (support-related enquiries)

Young Dementia UK is a national information and support charity focusing specifically on young-onset dementia. Created with and for younger people, families and friends.

More information and resources

Last reviewed: October 2015
Next review due: October 2018

Our information is based on evidence and need, and is regularly updated using quality-controlled processes. It is reviewed by experts in health and social care and people affected by dementia.

Reviewed by: Dr Ayesha Bangash, registrar in Old Age Psychiatry and Dr Karim Saad, Consultant in Old Age Psychiatry, Coventry and Warwickshire Partnership NHS Trust and Jill Walton, Nurse Advisor, Dementia Research Centre, UCL

To give feedback on this information, or for a list of sources, please contact [email protected]