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I'm having difficulty finding any support since my husband has been diagnosed FTD. It is a fairly rare form of dementia. So far there are no local groups and only a lengthy waiting list for a telephone support group. Anyone who is interested in finding out more about it can go to aftd.org

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Yes, I'm becoming familiar with it. Get the book What if it Isn't. Alzheimers?, edited by Lisa Radin. She and her son are currently working on new revision. In my area Lisa leads a monthly FTD support group. There is also a weekly support group for caregivers of folks with memory problems sponsored by the Cleveland Clinic Lou Ruvo Brain Center. Most of the caretakers have relatives with Alzheimers, but there are a few of us with FTD relatives. You might go to an AD support group...the techniques for dealing with problems are the same for some things. Does the person you're caring for have PPA or behavioral variant? The bvFTD patient can have some pretty aggravating behaviors even before the memory issues kick in. The Alzheimers groups usually have info on other dementias. The utube videos by Teepa Snow are very useful. I have had to pretty much quit using the word no and adjust my responses to the flashes of anger in dealing with my husband with bvFTD. And then there is the apathy and lack of empathy and inappropriate behavior. One of my resolutions for this year is to reduce the volume of things he has been collecting. Do you have some specific issues you want to talk about? It can be pretty lonely as a spouse. Good luck on this journey. You're definitely not the only one.
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Most of us here are dealing with dementia of one kind or another. Fronto-Temporal Degeneration simply indicates the area of the brain that is affected. Vascular Dementia can attack anywhere. Parkinson's starts in motor control but creeps into other areas. Alzheimer's plaques attack memory but moves to other areas. We will support you here, we are all together on a long journey.
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