Futile?

mwoolley · September 2

My wife has FTD. Her neurologist has ordered new PET scan and new Psychological testing. They are repeating the tests which gave us her diagnosis. Since there is no treatment for FTD, I question the need to keep testing her. The supposed purpose is to determine the rate of progression of the disease. I just wonder what difference it makes. It is as if we are knowingly walking toward a cliff yet they want to determine how close to the cliff we are. I wonder if there is a monetary reason for the additional testing.

Leesee · September 2

My DH has not been back to the Neurologist since his diagnosis of ALZ + VD in October 2023. I thought, like you, 'what's the purpose?'

In the past 3-4 months there have been significant changes in his capabilities (mental and physical) and I am obsessed about determining his level of progression. I don't think we'll ever have an definitive answer, but if they can provide some information I will be grateful.

I made an appointment with a new neurologist who works at a full-service neurological clinic. I hope they will provide options for testing that might not have been available 2 years ago or a PET scan which was not offered when he was originally diagnosed.

It sounds like your DW received more testing at the time of diagnosis than my DH did. Maybe you have a much better sense of her progression. I fell like I've been wandering in the woods without a compass.

CindyBum · September 2

Tam Cummings assessment tools help me figure it out about where my DW is in her progression.

https://www.tamcummings.com/tools

BikingOldMan · September 2

My DW went through neuropsychological testing annually for 3 years. We were both pleased to know that we were not imagining that her mental status was progressing faster than we'd hoped. For me as caregiver it made a huge difference in how I look at our future, and actions that need to be taken. We were not ready for this journey. I personally do recommend thorough testing at least for three years. My DW couldn't leave the building where she had been tested without letting me know that she was "…done with that testing!". Her first test was 4 years ago now. It was through the progression of her loss that her diagnosis of ALZ dementia. I also believe that the testing helped my DW to accept what is at this time, at least as well as is possible.

Timmyd · September 2

I have no intention of putting DW through any more testing. I have found the online assessment tools provide far more meaningful information about progression that we every received from a medical professional. That is not to say that people may have different experience than ours. That is just our personal experience.

https://www.tamcummings.com/tools

Quilting brings calm · September 2

I think it’s because medical personnel have to feel like they are doing something to treat or cure a disease… even when there’s no treatment or cure. Did you ask if the testing could be skipped?

cavenson · September 2

I think the main benefit of retesting each year is to monitor the progression of AD. My DH, who was diagnosed with MCI in 2018, has been retested each year for the last 7 years. Most of the time, the testing is a comprehensive verbal test, and he seems to enjoy it. He’s also had a PET scan and MRIs, which he accepted without complaint. It is done at a state medical college, and he is part of a registry that helps in their research. He has qualified for a couple of research studies. Because of his affiliation with the medical college, he was readily referred to a geriatric psychiatrist when I requested it. I like that I get to meet with the neurologist by myself, which lets me ask questions I wouldn't bring up in front of DH. If/when it gets to the point that he refuses to go or becomes upset about the testing, I’ll stop the yearly testing. Each caregiver must do what they feel is best for their loved one with dementia.

Futile?

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