Seeing a Dementia Doctor

Karl38

My wife is 80 years old, in good health, but with memory and cognitive problems growing steadily worse over the past 3 years.  She does surprisingly well socially, I don't think any friends or relatives have noticed.  However, I have had to take over many household duties such as grocery shopping, meal planning, bill paying, pill management, and more.  She is very easily confused and I make all of our decisions now.  I don't think she could live independently if I get sick.

Her PCP noticed her condition a couple of years ago and he has run some basic blood tests and a CAT scan.  These have ruled out any physical causes.  He has her on Donepezil Hydrochloride and has told me privately he thinks she has Alzheimers.  He has not recommended any further treatment.

I am wondering if she could benefit by seeing a specialist for dementia.  From what I have read there is no cure but I want to provide the best medical care for her as we go down this ugly path.  If anyone has some experience they would like to share I would appreciate it.  I'm not sure there would be any benefit in seeing another doctor.  

Stuck in the middle

I took my wife to a neurologist but didn't gain anything.  The neurologist said the treatment prescribed by her PCP (Donepezil and Memantine) was the best available, and did not suggest we return.  You might ask the PCP for Memantine.  I don't know if it helps, but my wife is doing well on it (for a PWD).

Pathfinder52

Hey, Karl --

Nice to meet you, sorry you need to be here!  Your profile doesn't tell us where you are -- that would help us advise you about resources.

You might try your local University Medical Center -- wherever that is in relation to your home -- that would be where a "dementia specialist" might be found.  We're in the Twin Cities in Minnesota so the University here has a significant program as does Mayo Clinic.  

While all that's great, my 90 year old husband only really needs palliative care now.  He's not on many medications and is not someone who wanders or becomes agitated anymore.  He's had his diagnosis for 8 years.

Hope you find what you need.  It may not be a specialist that offers you the help and support that caregivers need -- it may be a home-care company!

Wishing you all the best!
--p

harshedbuzz

When my dad had dementia, we sought out a university teaching hospital memory center. His docs were all MD/PhDs. Dad was put through cognitive testing, CT and PET scans, bloodwork and given a mixed dementia diagnosis (Alzheimer's and Wernicke-Korsakoff's which is an ARD). His docs were reluctant to prescribe any of the Alzheimer's meds because his presentation had a kind of FTD feel to it. At the same time, my dear friend's mom was diagnosed by her PCP who ordered only bloodwork. They trialed some dementia medications but she had side effects without benefit and later added an SSRI for anxiety as that became a problem. At the end of the day, the outcome was the same. 

Best care, in dementia, is what you are providing. Relieving her of responsibility for tasks that are beyond her now, making her feel safe, loved, cared for and about. 

In your shoes, the piece I would be looking at is a Plan B in the event you are unable to continue to provide the level of care you are now. That might mean touring CCRCs for you both, a MCF as a back up and also getting POAs set up so that someone can take over for you both.

My auntie developed dementia in her mid-70s; the family doctor seemed aware of it, but it was not something they ever discussed among family. My uncle was a devoted husband who provided a lot of scaffolding which helped my aunt function at home and when they were out. He went to the ER with indigestion which turned out to be metastatic cancer and died within 48 hours of admission. He asked my other aunt to look out for his wife, but didn't share that she had dementia. We figured it out about 6 months later when she was sitting alone in a cold dark house. My aunt had to scramble to file for emergency guardianship to keep her sister safe and select a MCF on the fly. Not having information made the task of taking over a lot more complicated than it needed to be.

HB

JJAz

Karl,

You will benefit from having a relationship with a specialist if she begins to show other symptoms that require medication management.  This is not uncommon as the disease progresses.  My husband was a typical easy-going Alzheimer's patient for several years.  Then, during 3 days in February 2017, that all changed.  He became agitated, angry and aggressive.  Fortunately, he was already being treated in a dementia-specialty practice and we didn't have the 6-month wait for new patients.  Over the next few months he developed more symptoms and they ADDED a diagnosis of Lewy Body Dementia (the 2nd most common type of dementia).  For the next 2 years before his death, he required many medication adjustments, sometimes multiple times per month.  I was very glad that we already had a relationship established with a competent neurologist.

Blessings,

Jamie