7. Other useful organisations
British Institute of Learning Disabilities (BILD)
Birmingham Research Park
97 Vincent Drive
Birmingham B15 2SQ
Organisation that works to improve the lives of people with disabilities. Provides a range of information in print and online.
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
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
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
8 Albany St
Edinburgh EH1 3QB
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
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 firstname.lastname@example.org
View a PDF of 'Young onset dementia':