Diagnosed with mild dementia so what should I expect in future?

Posted by sarah49 @sarah49, Nov 12, 2018

I was diagnosed with mild dementia so what bodily & cognitively changes should I expect?

Hi, @sarah49, and welcome to Mayo Clinic Connect. I'm hoping this will be a great place for you to get information and connect with others following your diagnosis of mild dementia.

Since you are wondering about what body and cognitive changes you might expect, I'd like to provide some Mayo Clinic information on dementia: https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013.

Did your doctor provide any additional information about what type of dementia you may have in mild form (e.g., vascular, frontotemporal, Lewy Body)?

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@lisalucier

Hi, @sarah49, and welcome to Mayo Clinic Connect. I'm hoping this will be a great place for you to get information and connect with others following your diagnosis of mild dementia.

Since you are wondering about what body and cognitive changes you might expect, I'd like to provide some Mayo Clinic information on dementia: https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013.

Did your doctor provide any additional information about what type of dementia you may have in mild form (e.g., vascular, frontotemporal, Lewy Body)?

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Thank you for your response and the reference in Mayo.com. I also joined exsmokers connection. Need lots of help with quitting my smoking addiction.

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@lisalucier

Hi, @sarah49, and welcome to Mayo Clinic Connect. I'm hoping this will be a great place for you to get information and connect with others following your diagnosis of mild dementia.

Since you are wondering about what body and cognitive changes you might expect, I'd like to provide some Mayo Clinic information on dementia: https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013.

Did your doctor provide any additional information about what type of dementia you may have in mild form (e.g., vascular, frontotemporal, Lewy Body)?

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Not much info on Lewy Body Dementia from Neuropychologist but thanks for your info given on Mayo. Very helpful Sarah49

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@sarah49

Not much info on Lewy Body Dementia from Neuropychologist but thanks for your info given on Mayo. Very helpful Sarah49

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Hi, @sarah49 – Since you mentioned wanting to quit smoking, I wanted to suggest this discussion on Connect on quitting for reading through and participating, if you'd like: https://connect.mayoclinic.org/discussion/stop-smoking-panic-attacks

Just wanted to clarify: Was your diagnosis Lewy Body Dementia, then?

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Hello @sarah49 and welcome to Mayo Connect,

I can understand your interest in wanting to know, "what to expect," that is a natural question that we all have when we face any illness or disorder.

Lewy Body Dementia Association (LBDA) has a website with a list of support groups. As you did not mention what state you lived in perhaps you can check out support groups in your area. There you will meet with others who can offer you some first hand knowledge and experience with LBD. Here is a link to the support groups, https://www.lbda.org/support

If you are comfortable sharing more about yourself. For example: What symptoms were you having that led to this diagnosis? Were the symptoms physical (such as gait/balance) disturbances as well as cognitive, such as memory, attention, etc.? Were any therapies suggested for gait, balance, speech, etc.?

What information has your doctor given you thus far?

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@sarah49

Not much info on Lewy Body Dementia from Neuropychologist but thanks for your info given on Mayo. Very helpful Sarah49

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Hi, @sarah49 – wanted to check in with you and see how you are doing?

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Have you been given a diagnosis of your type of Dementia? It makes a big difference what to offer and what to expect as far as progression, issues, treatment etc. I can help a lot better if you could provide this. In general though there are many types of Dementia. Each has some unique characteristics and issues. Mild Dementia is very treatable and a good speech or occupational therapist can provide a lot of compensatory strategies to overcome the issues. One good one is to keep a notebook or smartphone with you at all times to keep track of things. Write everything you need to know or remember down with a date and time, even directions or sequence or schedule of things you need to do. That way you can get used to referencing back to it now when it can become a habit. For example, schedule out your day with a plan and use a checklist for when you need to take your meds (and mark it done when you do), pick up the kids, etc. or have a friend or relative call and remind you. Allow yourself extra time to do things so you stay relaxed, stress only exacerbates things. Put a note at the door or taped to the bathroom mirror or fridge to remind you to check the oven and stove are off, doors are locked and you have your keys with you and such. Sticky notes are great for reminders. Label drawers and closets what is inside them so you can locate them more easily. Do a picture board of family and friends with their names, birthdates, and relationship to you. Try not to stress when you can't remember something. Sit for a few minutes and rest. Sometimes it just needs some time to come back to you. Don't be too hard on yourself. It's not your fault nor is memory loss related to intelligence.

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Sorry, I've been trying to have my brain evaluated for memory loss for a couple of years, to no avail. It may be time to travel to Thailand!

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Well I am not sure where to start; however get a good primary doctor to support you and be your main support person. Sorry to say loves ones don’t help much with fighting for you in getting the medical needs, test (they always want to repeat mental test which were harder mentally to me then giving the doctors information, so after 3 years 10 studies I stop them). It can be awful at times but fine seminars that have people with dementia talk as you can get allot ideas how to fight off depression and tools how to cope with dementia. Family will take along time to figure out what dementia does to you and want to help, the problem is they want to tell you how you feel (it changes day to day and big changes once in awhile). Writing, remembering name, how to get home, dressing completely, taking pills, and eating right is normally easy; however with dementia are all some daily challenges. This comment is very hard to write as my dementia has progressed where I heavily really on software and hardware devices to live a life where I find things to do and able to continue to give back to my community and family; this give me purpose to keep enjoying life. Also find a awesome counselor who can help you realize that fighting for yourself is ok!
I hope this help as I having been living with dementia for the last 7 years and still find really good days to enjoy. I know the grammar is off but I can live with the people who laugh at me.

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Thanks for your helpful reply. I'm still trying. I waited for a week to get a call from the Phoenix clinic and when they got back to me, they told me that Neurology wasn't taking new Medicare patients. I have been between one primary care doctor, who left, and a new one that I just started to see last week. She may refer me to the local neurology dept. I've also got a call into the Rochester clinic, but now expect that a week from now they will also tell me they aren't taking new patients. What depresses me is how the Mayo clinic advertises on their website how important it is to get diagnosed early, and then won't give you an appointment! Oh, well, I'll work from here for now. (Seriously. I did check the Thailand website, but the CDC is warning us not to go there!) I've been using post-its and computer, etc., for years to help me remember stuff. My last PET scan was in the mid-90s and showed some hypoperfusion in the amygdala/hippocampus region, but that was caused by a chemical poisoning. Now, it's getting worse. Of course, I could just stay here and deteriorate, but I don't want my cats to suffer!

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@gcranor

Well I am not sure where to start; however get a good primary doctor to support you and be your main support person. Sorry to say loves ones don’t help much with fighting for you in getting the medical needs, test (they always want to repeat mental test which were harder mentally to me then giving the doctors information, so after 3 years 10 studies I stop them). It can be awful at times but fine seminars that have people with dementia talk as you can get allot ideas how to fight off depression and tools how to cope with dementia. Family will take along time to figure out what dementia does to you and want to help, the problem is they want to tell you how you feel (it changes day to day and big changes once in awhile). Writing, remembering name, how to get home, dressing completely, taking pills, and eating right is normally easy; however with dementia are all some daily challenges. This comment is very hard to write as my dementia has progressed where I heavily really on software and hardware devices to live a life where I find things to do and able to continue to give back to my community and family; this give me purpose to keep enjoying life. Also find a awesome counselor who can help you realize that fighting for yourself is ok!
I hope this help as I having been living with dementia for the last 7 years and still find really good days to enjoy. I know the grammar is off but I can live with the people who laugh at me.

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I applaud you for your courage and determination in your journey. I too dislike those mental tests…I accompany my mom for her appointments and I have a hard time with the subtraction testing!

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@washalien

Sorry, I've been trying to have my brain evaluated for memory loss for a couple of years, to no avail. It may be time to travel to Thailand!

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That is surprising. Have you checked with practices that deal with memory/ mood? I have found that a good osteopath is a great doc to work with from a full systems view. They will sometimes be more open to ordering tests.

The neurocognitive (neuropsych) tests are non invasive.

You don’t have to share this if you dont want to – what did the docs say when you brought this testing up?

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