Flying blind

Tweet

Mom was diagnosed about 4 years ago. We've been using her geriatric primary care doc. When I asked him if we should find a Neurologist, he said they wouldn't do anything for her that he couldn't do. But I feel like I'm flying blind and don't know what to expect next. Should I find a Neurologist for more specific guidance? Or is there a recommended read to explain all the stages and what to expect? Thx

aeliasz

Tweet, in my experience your primary care doc is right. I took my mom to a neurologist & they did some tests but there’s really nothing they can do for this disease except prescribe donepezil or memantine or some other drug. Your primary care can do that. And also, just my opinion but doctors can’t really give accurate specific “ guidance” because they just don’t know how this will affect your LO because it’s drastically different for each person. Theres alot of info to read about stages but as others have pointed out on this site, your LO could have a foot in more than one of these stages at a time. I’ve read a lot of articles and books but have not found them as helpful as talking to other people who are in the same boat. This disease has a mind of its own ( pardon the pun) and will do what it wants, when it wants in a manner unique to your LO. Again, just my humble opinion!

M1

Hi Tweet. You will likely find more practical advice here on this forum than at any doctor's office (and I'm a doc). I expect your PCP is right on that front. Eventually, if she develops behaviors that are difficult to manage, a geriatric psychiatrist may be more help than a neurologist. But if her PCP is a geriatrician, he may be well versed in these things already. Ask him.

There are a number of things you can read, including a lot of threads on this forum that will help. There is a book called The 36-Hour Day that a lot of folks recommend; and there is a short book available online (I think it's 36 pages) called Understanding the Dementia Experience by Jennifer Ghent-Fuller (if you google it you can find an online PDF version). Others can provide a link, but Google will be just as efficient.

Look at the Solutions Center on this website too (I see a link off to my right). That has a lot of practical advice also. Good luck.

harshedbuzz

Hi and welcome. I am sorry for your need to be here but happy you found this place.

Assuming your mom had the basic workup-- blood tests to rule out hormone or vitamin deficiencies that mimic dementia, imaging to rule out lesions or confirm stroke damage, an accurate history and basic screening tests like MMSE, SLUMS or MoCA-- there really isn't much a neurologist can bring to the party that a competent PCP can't.

In terms of staging, family (especially those who live with mom 24/7) is going to have a better idea of staging than a doc who is seeing your LO cleaned up at a good time of day and potentially "showtiming" to mask deficits. If you don't live with mom, it might be a good idea to invent a reason to sleep over for a couple of days to get a baseline of how she functions through the day. Many PWD have sundowning behaviors you might miss if you come at lunchtime typically.

I found these useful:

Smashwords – Understanding the Dementia Experience – a book by Jennifer Ghent-Fuller

Microsoft Word - DBATv1.docx (wsimg.com)

HB

Emily 123

Hello,

HB's DBAT checklist is very helpful and the 'Understanding the Dementia Experience' is key reading. If your parent has AD, then the progression will follow the stages. Other dementias may advance differently.

Some people go through the stages faster than others, People don't always exhibit every behavior or checklist item, and of course some people may be experiencing some of the things listed in the stages but you might not know it unless they share it with you. Advice on this forum was that, even if the person exhibited only one one or two things in the next stage occasionally, it's technically the stage the person has progressed to.

My own experience is that my mom seems to still retain the ability to make inferences about what she sees, but that her executive abilities seem to falter first. But that may be because I notice when she stops being able to initiate something. Her physical abilities are following the stages.