The Loneliness of Frontotemporal Dementia

ElaineD

2019 article on FTD, from the NYT.

https://www.nytimes.com/2019/11/07/well/mind/frontotemporal-dementia.html?searchResultPosition=1

ElaineD

M1

Glad to hear from you Elaine, hope you're doing okay.  There was a wonderful article in the Washington Post over the weekend on caregiving too, but I'm afraid it's behind a paywall for most.  One of their editors talked about caregiving for her premature twins, her husband (who died of melanoma in his 50's), and now for her mother with vascular dementia.  Truly full circle.

Buggsroo

Very interesting article. My husband is always on about people who are overweight. Sadly, he has forgotten many things and does not retain anything he is told. I like reading about this because it means that dementia is starting to be discussed openly.

Mint

Could not read the article as was behind a paywall for me.  But FTD definitely creates loneliness for the one afflicted with it and their caregiver.

Jo C.

My mother had a behavioral variant of FrontoTemporal Dementia and it was like Alzheimer's on steroids.  She had no verbal or swallowing issues and her memory was very good.  However; she had no judgment and lacked reasoning and was driven by false beliefs.  She had dreadful over the top behaviors and could create so much mischief, especially financial as she kept that much of her executive function and I had to keep one step ahead due to her attempts at financial plundering.  She soon lacked any empathy or concern for anyone else and also did not want to bathe.  She was highly irritable and any small thing could trigger her; even giving her a gift.  She could not abide any change whatsoever; bring in a new crockpot or replacing the broken vacuum cleaner brought her into high dudgeon shouting and banging on furniture until the offending items were removed. 

She could throw world class tantrums and one day managed to give away every single piece of clothing in her closet; she literally had no clothes left.  Bought new and they too managed to disappear until it was found out how she managed that.  Her intent was to hire a tailor and have all of her clothes tailor made for herself.  As if.  That was a doozy to find no clothes and how cleverly she had managed it.

She developed a sneaky sort of behavior where she could be like Julie Andrews trilling from a meadow of flowers when near an "important" person such as the doctor, social worker, etc.  BUT once home in her private place, she turned into Linda Blair from the Exorcist - it was stunning to see such changes turn on a dime.

She became obsessed about not eating and hating her sweet husband as well as hating me since I was the one doing the most for her (only one actually); that is pretty much normal for that diagnosis.

What was lonely was the dynamic where all her friends, neighbors and family drifted away and would not even call or send a greeting card.  They simply vanished. POOF!  I felt so bad for her.  I tried to set up coffee and cake with a few friends several times when Mom was still able to conduct herself well, but they never accepted and had excuses why they were "busy." 

There came a time when she became delusion driven.  If the delusions had been pleasant or not upsetting it would have been fine to let it go; but her delusions were dreadful and filled with suspician and horrible beliefs.  Soon she became so agitated she ended up in GeroPsych for a couple of weeks; later, her Neurologist bless him began a low level of Risperdal which helped quite a bit and restored some quality to her life while extinguishing the dread delusions which drove her over the moon in agitation.

The stories of her eight year experience are legion and dramatic, but far too much to discuss here.   I learned alot as I went along; I was initially not prepared for FTD in the home and made some mistakes until I learned and learned and learned.  Never perfect, but tried as best could be.  Still, having people simply disappear even early on while behaviors were still reasonable was quite a stunner.  Who'd a thunk it - but there it was.

J.

Cherjer

Such a sad story

CStrope

I found the article very interesting, but wanted it to go on with more information.  I am finding it difficult to gather information and understand the differences between FTD and Alz.  The other day, when reading the doctor's notes from my DH's latest appointment, I was surprised that he had in his notes that he now feels that the diagnosis could very well be logopenic FTD rather than Alzheimer's.  He has never once mentioned this to us, so I set our on numerous google searches to learn what I could.  Then my thought was, at this stage in the disease, does it really even matter?  What would be done differently if the diagnosis was FTD, what would it mean for this path we're now in, and are there different stages for FTD rather than Alzheimer's.  I feel like I spent the past year (since diagnosis), adapting to the fact that my DH has Alzheimer's, and reading the doctor's notes kind of threw me for a loop!!!

Quilting brings calm

I could not see the article either.  However I also agree that loneliness goes hand in hand with FTD.  Of course does with other dementia forms too. FTD is worse because of the challenges of difficult behavior for others. People distance themselves from those with behavior issues - for their own protection and mental health, and yes for distaste too. Then theres the fact that many FTD patients appear ‘normal’ to outsiders and they don’t cut them slack for the behavior issues. 

Jo C- thank you for your detailed explanation.  Even though my step-dad has not been diagnosed, I was amazed at how closely his behavior tracks your moms.  Not the clothing issue, but the overall issues.   You don’t know how much reading your explanation told me I wasn’t imagining the problems