Why do some people deny the fact that dementia is a real disease and not a normal part of aging?

You may be able to find an FTD caregivers support group in your area. You should check with AFTD organization. The Alzheimers Association may also be able to help. A support group for AD caregivers can also be supportive. They tend to be befuddled by the behaviors you are dealing with but are sympathetic nonetheless.

Thank you eyerishlash for your comment. I have stopped talking to my neighbors about my mother because they don't get it and probably never will. It just makes me mad that they don't listen to me or take it seriously. Oh, well !

They are terrified it will happen to them - therefore they deny it exists. Right up there with global warming and weather extremes. It's right in front of their face but they refuse to believe.
Throughout history this is how we deal with things we are afraid of. Human nature. If the concept could take hold it might send them into a breakdown. They are too delicate to handle it.

Thank you country mouse! What you said made me feel better. I am having a really bad day. Thank goodness for this support forum. Most people on here understand and can be helpful and sensitive of your feelings even if you don't know them.

Thanks for your advice Vegaslady, and Jessebelle it was very helpful. I guess I shouldn't care what my neighbors think, but we were very close and now I don't feel that way. Anyway FTD is an awful thing to get and it makes me feel so bad to see my mother go down this road. It puts a lot of stress on me and my whole family as well. I wish I had more support and helping because it is killing me too.

Maggie, Teepa Snow's brief and good-humoured explanation of current understanding of the various dementias is excellent - highly recommended viewing. Google her and you'll find it easily.

Sweetpeas, they deny it because they can - they still have that luxury. Just as people can continue to imagine that depression equates to feeling a bit blue; that if their baby pukes a lot it's the same as pyloric stenosis; that if they forget what they went into a room for then ha-ha-ho-ho they must be getting dementia… It's not until one of these monsters has you for real by the scruff of the neck that reality dawns on you, and suddenly you lose all sense of humour about it.

If you like them, feel glad for them that as yet they have no need to know better. If it gets on your nerves, take time out from them. If among them are individuals whose continuing friendship and help you badly need, then be patient and continue to explain.

I feel for you. A really good friend, out of true kindness, came to visit last Friday because she'd sensed over the 'phone how miserable I was and wanted to cheer me up. I hugely appreciated her taking the trouble to visit. Her Pollyanna attitude, on the other hand, meant I had to bite my tongue quite a lot and felt relief when she left. Her parents, God bless them, are both dead; her husband copes brilliantly with his severely demented mother (he travels 400 miles twice a month to visit her in her nursing home); my friend will never need to know what it's like to live with that mother-who-is-not-your-mother.

It's very difficult. Be patient with them, but be kind to yourself too. Don't waste effort on explaining to people you don't need to explain to. Be as blunt as you need to be when it matters. And thank God for this forum, where people really do understand what you're going through.

MaggieMarshall, yes there are different types of dementia and they cause different symptoms. FTD itself has different variants affecting behavior or speech initially, as opposed to Alzheimers, which has loss of memory as a symptom. These problems start in different parts of the brain: AD in the hippocampus, FTD in the frontal and temporal lobes, and other dementias elsewhere. Some involve hallucinations, loss of speech, loss of inhibition or empathy, as opposed to memory issues.. Medications for some diseases are not good for others. Some coexist with other problems, and a certain percentage of FTD patients also get ALS (heard of the ice bucket challenge?), also known now as MND, Motor Neuron Disease. Please don't make light of the issues that people with dementia or their caregivers have as just normal. As I said in my first post, some people just don't learn new things that doesn't already fit into their world view. Don't be one of those.

It is why AC is such a good place. People who aren't involved don't recognize the depth of the problems people with dementia face. FTD can be one of the worst, IMO, because of the changes in personality that often accompany it. Even family members who aren't involved in the care don't take dementia seriously. I have one brother who has a standard line -- "That's what old people do." People who are on the frontline know that it isn't what old people do; it is dementia.

I wouldn't worry about the neighbors. You know they won't be the best support for you. Support groups for people with dementia would be the a good source. We have some around here that are sponsored by churches. I haven't become involved, because I know people won't truly speak their minds if they are in church. To tell the truth, when I am repeating things for the third time and seeing the disorganization of life around me, I have trouble "counting it all joy."

Many people just don't learn anything new that doesn't already fit into their view of the way things are. Hopefully, for their sakes, it won't affect them. If you are looking for people who "get it" about FTD, go the forum for FTD, ftdsupportforumdotcom. It is a site with many informed caring people. See you there.

Frontotemporal dementia? Wow. That's rare. Good for your Dr. for identifying it.

You're totally right. People don't understand. If you've tried explaining it and even sent literature via email and they still don't get it then stop trying to get them to understand. It's a waste of time and effort and energy.

You know that any kind of clinical dementia is not a normal part of aging and I know that any kind of clinical dementia is not a normal part of aging and everyone here knows that any kind of clinical dementia is not a normal part of aging so stop worrying about what your neighbors think. If they ask how your mom is say, "Fine, thanks". You can't beat it into their heads and why would you want to? It's just ignorance on their parts. You've tried to educate them, it didn't work, now move on.

Hmmm, there's a difference between not getting support and many people believing that diminished mental capacity is just a normal part of aging. Frankly, unless it's early onset dementia, I myself believe it is a normal part of aging.

Perhaps there are different types...different parts of the brain effected...different causes...but, all in all, I'm with your friends. If you live long enough, chances are you (our loved ones) are going to get some form of dementia. Personally, it makes no difference what name they give it. Doesn't make a difference what they call it. *shrug*

What bothers me is that your friends/neighbors aren't supporting you in your struggle. And a struggle it is! Maybe they're frightened by it. Perhaps it makes them uncomfortable to talk about it. Mocking you? Get new friends. Maybe what they're really saying is they don't want to talk about it with you.

And that's one of the reasons sites like this are soooo valuable. It lets us know we're not alone. There's much to be learned here -- from people walking the walk. If one has never dealt with a loved one with dementia, they can't begin to have the empathy we need to get much-needed support.

Don't be too hard on them. They're just "neighbors" after all. Get your support elsewhere. It's out there. It's here. It's within your church. Your family. Just tell your neighbors their garden looks pretty. ;)