Stuff You Can Use

Look here to find a variety of handouts, websites and other resources that you may find helpful. Check back often as new things are added. If you found a resource that helped you and would like to share it let us know. Use the on-line form to Contribute Content or email [email protected].

Useful resources

These documents are specific tips and suggestions compiled from families and professionals who know FTD.  You can download and print them, share them with others or use the ideas to make your own.

[Coming soon]
Talking about FTD
Tips for Behavior Changes
Tips for language changes

Websites to check out

Below are some websites that have information you may find helpful.

When Dementia is in the House
This site was created for teenagers who have a parent with young-onset dementia and includes information on FTD.

Huntington’s Disease Youth Organization 
Huntington’s disease is a genetic neurodegenerative disease. While Huntington’s is not related to FTD there are similarities in the possible symptoms and impact on a family. Information on living with a parent who has a neurodegenerative disease, visiting a care home and loss and bereavement is relevant for FTD families.

AFA Teens
Founded by a teenager, this initiative of the Alzheimer’s Foundation of America seeks to engage teens in raising awareness of Alzheimer’s disease and provide education and support to teens and their families.

Alzheimer’s Association Just for Kids & Teens
Alzheimer’s disease primarily afffects people age 65 and older, though about 4% of people with the disease have a younger age of onset. This site offers a variety of articles and videos for teens who have a relative with a Alzheimer’s disease.

Understanding Behavioral Changes in Dementia 
Lewy body dementia is another form of dementia that has some symptoms similar to FTD. The Lewy Body Dementia Association developed an article on understanding and coping with behavioral changes. It includes helpful suggestions for how to communicate with someone with dementia.