Resources
Our FTD Story
Useful Resources
Early Age Dementia Internet Resources
Young-onset dementia | Alzheimer’s Society (alzheimers.org.uk) A good introduction to early age dementia. UK focused and web site run by a charity. There is also a link to a support line.
Frontal Temporal Dementia Internet Resources
Frontotemporal Dementia (FTD) Info and Support Large US membership for this Facebook group, with well over 3,000 members. Lots of useful information shared, as well weekly FTD Care Chat which is normally around 7pm US Eastern Time (12am Central European Time).
FTD UK is a small UK focused Facebook group. Worthwhile joining if you want to share experiences in the UK, such as getting diagnosis, arranging care etc.
AFTD – The Association for Frontotemporal Degeneration (theaftd.org) Focused predominantly on the US , this site is an excellent resource covering everything from family advice through to information on scientific research. It is probably the best web site on FTD. The site also provides links to international groups and web sites International | AFTD (theaftd.org).
FTD lotgenoten | Nootdorp | Facebook Dutch Facebook site covering FTD.
Note most Facebook groups are private, requiring approval when requesting to join and meaning messages are only visible to group members. Those that post are often partners and otherwise principal family members, who are often the primary care giver. The communities in all these Facebook groups are very sympathetic and kind to other. Often you will see posts from caregivers who are completed frustrated, and the overwhelming responses are always supportive.
Early Age Dementia and Frontal Temporal Dementia Books
Below are some links to books recommended by a number of people in the FTD community.
Ambiguous Loss: Learning to Live with Unresolved Grief – Kindle edition by Boss, Pauline. Health
Imprisoned By Love: Amazon.co.uk: Brahams
Coping with Early Onset Dementia: Amazon.co.uk: Eckersley, Jill
Books about young onset dementia – Dementia UK – The Dementia UK site also includes a list of other books, including ones aimed at children.
TV Series and Videos
Restaurant Misverstand: Seizoen 2 Aflevering 1 gemist? Bekijk hier de hele uitzending – kijk.nl – Programme about people with early age dementia all working in a restaurant together. Seasons 2 and 3 are on the web site. Unfortunately I don’t know how non Dutch speakers can auto translate the audio.
Sharon en Wilco | Onvergetelijke Herinneringen – YouTube and Wilco en Sharon | Onvergetelijke Herinneringen – YouTube Dutch TV series on Early Age Dementia. You can set YouTube to autogenerate subtitles in other languages.