My husband was definitively diagnosed with Vascular Dementia January 2024 by a wonderful Neurologist after the Neurologist sent him for further Neuropsychiatric testing. He would never go back for follow-up since he blames the Neurologist for an inaccurate diagnosis. As the spouse, I can testify my spouse MOST definitely has Dementia. We've been married 50 years.Try as I may, I cannot get him to go to any Neurologist. Having that type of MD in my arsenal could prove invaluable to my own wellbeing as well as my husband's. I've beat my head against this wall until I have a headache.I totally understand why a Neurologist wants to see their patient, but I fear this may never happen until my spouse is very late stage. Our PCP is great, but this is such a specialized journey, a Neurologist is essential. Anybody got any suggestions???
Why do you think he *needs* to go back? There's no cure for dementia. You already know he has it, and what type.
Are you his PoA? If so, this diagnosis activates your authority. If he doesn't have a PoA... the diagnosis maybe be a problem.
No, the neurologist won't do an in-person appointment but why don't you call him/her, explain your husband is in denial and refuses a follow-up appointment -- then ask him what is the point of the follow-up? What does s/he, the doctor, think will get accomplished?
"- Average lifespan: 5 years
- Range: 3–10 years (depending on health, stroke prevention, and care)
- Most important influence: controlling blood pressure, cholesterol, and diabetes
- Key goal: prevent further strokes and support brain health through activity and engagement"
He can do all those things through his primary doctor. In particular, he may now require meds for depression. This may help him to cooperate more with any treatments.
"Why Vascular Dementia Can Trigger Aggression:
Vascular dementia is caused by reduced blood flow or small strokes that damage specific brain regions.
If these strokes or lesions affect the frontal lobes — the area that controls:
- impulse regulation
- mood control
- judgment
- empathy
— then the person may lose the “filter” that helps them respond calmly or appropriately to frustration.
That can lead to:
- sudden anger or irritability
- verbal or physical aggression
- resistance to care
- suspiciousness or paranoia
These behaviors are neurological, not intentional — the brain’s control systems are damaged."
I wish you success in finding the best pathway for him on this journey.
Within a few weeks we got one - private room, beautiful surroundings, great care 10 minutes from my house! I go every single day to feed him his lunch. He doesn’t know what utensils are for……. it’s that quick. As of last week he’s now on Hospice care and that’s another layer of security I have. A nurse comes every single day for over an hour. He’s very agitated (tremors) due to brain deterioration so they hold his hand when I’m not there. Also, Hospice gives him a sedative whereas the nursing home doesn’t want them medicated too much. He never opens his eyes. He doesn’t know me or our grown sons. He can’t walk, talk, etc. I look at him and sob - but, I don’t have it in my life 24/7. If you get to that point do NOT hesitate to find him a place that will give him care and you respite.
I’m still emotionally drained - soooo many decisions all the time, but, if he were home I’d be dead. The staff is constantly reminding me it takes a village to care for him and there’s no way I could do it alone. My family is all on the West Coast and I’m in PA. No help. I’m 72 and my friends are beginning to pass away or have health issues. So, who do you call? It’s very, very hard to make that decision. A doctor comes to see him once a month, but, that’s for meds. He’s had 3 brain scans in 5 years- there’s no cure.
There really is no need to see the Neurologist again.
Any medication that he might be on his PCP can prescribe. If your husband needs further testing the PCP can order any tests. (although I do not see a reason to subject anyone to scans or some other diagnostic testing. It is evident that the disease progresses. You see it on a regular basis.
Keep a log or a journal if you will and you can document declines as you see them. (although he was not diagnosed with Vascular dementia I think my Husband did have it along with the Alzheimer's and he would be doing something one day and literally overnight he would not be able to do that very thing the next day.)
I documented each time my Husband fell and I had to call for a Lift Assist. I noticed that each fall coincided with a big decline. This information was helpful for Hospice and it also documented declines for his recertification.
Other than collecting his co-pay the Neurologist can not do anything for your husband that his primary can't do.
I would, yes, call the office of the "wonderful neurologist" and explain as briefly as you did to us that you can't get him in for needed exams. I would request a conference with the MD and do know you will likely be self paying on this; I would ask for options going forward in order to get hubby further testing you feel is needed.
I will say this to you. No matter WHAT testing shows, you already KNOW the situation. The question is now what do you intend to do about it? What options do you have? Nothing a neurologist says at this point is truly going to make a "difference" unless you are looking to legal letters of incompetency for husband.
Vascular dementia is the most aggressive of all the dementias with a life expectancy of just 5 years, so I say just enjoy whatever time you may have left with him and not stress about your husband going to any doctor at this point.
My late husband was diagnosed with vascular dementia in July 2018 but was showing signs a good year or so before and he died in our home Sept. 2020.
In retrospect I am grateful that my husband had the most aggressive dementia and that he didn't have to suffer as long as some do say like Alzheimer's which can go on for 20+ years.
So again quit beating your head against the wall over something that you can't control and really makes no difference now. Instead just love and enjoy your man, as there will come a day when you will wish for just one more day with him.
Ask his primary care provider for neurologist referral.
Tell husband he's going out to lunch and then take him to the appointment.
You cannot expect a person with dementia to agree to anything - even something they used to like / enjoy because the brain cells have / continue to die so information is not understood. He likely feels fear of the unknown and perhaps most everything now is / feels like an unknown due to confusion and parts of the brain not functioning.
Contact Teepa Snow (expert on dementia)
Contact Dementia Association in your area - ask for support / how to proceed
Definitely contact MD
You can pay for an independent evaluation - talk to his MD or a medical social worker. (You can hire an ind med social worker to assist you).
Gena / Touch Matters
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