Young-onset dementia - more resources

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

Useful organisations 

British Institute of Learning Disabilities (BILD)

Birmingham Research Park
97 Vincent Drive
Birmingham B15 2SQ

0121 415 6960
[email protected]

Organisation that works to improve the lives of people with disabilities. Provides a range of information in print and online.

Citizens Advice

Various locations

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

PO Box 346
Market Drayton TF9 4WN

01630 673973 (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 Benefits Helpline

For Disability living allowance

0345 712 3456 (free helpline open 8am to 6pm weekdays)
0345 722 4433 (textphone)

For Attendance allowance

0345 605 6055 (free helpline open 8am to 6pm weekdays)
0345 604 5312 (textphone)

For Personal independence payment

0345 850 3322 (free helpline open 8am to 6pm weekdays)
0345 601 6677 (textphone)

Helpline for advice or information about claims for Disability Living Allowance, Attendance Allowance or Personal Independence Payment.

Rare Dementia Support

07592 540555
[email protected]

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

The Lewy Body Society
Unity House
Westwood Park
WN3 4HE 

01942 914000
[email protected]  

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

PO Box 315
Oxfordshire OX28 1ZN

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

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

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.

This information has also been reviewed by people affected by dementia. A list of sources is available on request from [email protected]

Further reading