Information about Frontotemporal Dementia (FTD)
I have come to call FTD the little, brutal brother of Alzheimer.
- It attacks people at a much younger age, often in their 40's, when they are still working and have not yet built up sufficient retirement funds.
- Their partner is also typically still in the middle of their work career and unable to become a full-time caregiver in the way a retired partner can.
- It changes behavior early on, and others often perceive the person with FTD as obnoxious, annoying, and anti-social, not as ill and needing empathy.
- The young age also means that you don't look as if you might need help. No gray hair, no wrinkles. The friendly approach others often apply to the elderly in everyday life, in shops etc. will not apply to you.
Here are some helpful guides, especially selected for friends and family who want to understand how to interact with a person with FTD, from short to in-depth:
- Das Wichtigste zur FTD (PDF) (in German). 3-page leaflet with key information about FTD, how it happens, what typical symptoms are, and what it means to friends and family. The shortest info on FTD you can read that makes sense.
- "Frontotemporale Demenz. Krankheitsbild, Rechtsfragen, Hilfen für Angehörige" is the guide to FTD by the German Alzheimer Society. However, it is apparently currently out of print and not even available online. At least their general dementia guide has been updated in 2013 and is available as print or PDF for free: Das Wichtigste über die Alzheimer-Krankheit und andere Demenzformen, 50 pages.
- Leben mit Demenzkranken: Hilfen für schwierige Verhaltensweisen im Alltag, helps to deal with difficult situations that may come up. 50 pages, 4 €, print only right now.
- Miteinander aktiv: Alltagsgestaltung und Beschäftigungen für Menschen mit Demenz. 80-page booklet with tips for everyday activities for people with dementia in general, by the Alzheimer Society. 4€ in print, or 2.99€ as an eBook (on Apple iBooks Store, Amazon for Kindle , and others).
- Jenny Powell: Hilfen zur Kommunikation bei Demenz is a great illustrated guide explaining how to talk to a person with dementia, why they understand some things and not others. Close to my personal experience. Again, unfortunately out of print, but I have a copy. Demenz Service NRW, 2012. Translated from English. Some copies available on Amazon for around 8€. The first part of the book is available for free and already very useful. English version on Amazon: Care to Communicate.
- Angela Caughey: Dealing Daily with Dementia. German version: Das Demenz-Buch, 2014. About dementia in general, not just FTD, but many symptoms and solutions apply to both. Very hands-on writing, recommended.
More information about FTD in general is provided by the AFTD (English) and the Alzheimer-Gesellschaft (German).
I have begun to collect some helpful technical tools for people with dementia under http://dementiatools.org (English) and http://demenztools.de (German).
- FTD Research Landscape, AFTD, 2014
- Deutsche Alzheimer-Gesellschaft: FTD-Homepage
- BMBF-Ausschreibung "Pflegeinnovationen für Menschen mit Demenz"
- BMBF-Powerpoint-Präsentation zur Ausschreibung
- Selbsthilfegruppe FTD in NRW, Kreuztal