Mom Recently Diagnosed

katbirdfl

My 82 year old mother was recently diagnosed with dementia. Her primary care doctor diagnosed her. My brother and I are at a loss with what to do next. Her doctor doesn’t want to prescribe any type of medication because she says the side effects are too great for my mom. She has a history of frequent falls. Do we need to take her to a neurologist or other specialist that specializes in dementia? This is all new to us so any help would be appreciated.

M1

Welcome to the forum. First thing to do is to be sure your legal and financial affairs are in order. You will need to hold durable power of attorney for her for healthcare and finances no matter whether you care for her at home or in a facility. A certified elder law attorney can help with this (look at nelf.org), with a will and living will, and with how to qualify her for Medicaid should she need it for long-term care: assisted living and memory care are expensive propositions.

Safety drives the decision making here. You'll need to assess whether she can still live alone or not. Driving should stop if it hasn't already. If you look to the right under Quick Links and Groups, there is one for new members that has collected a lot of frequently referenced information.

whether to try any medication probably depends on her other co-morbidities. None are great, there is no cure. You can have her see a neurologist if you want, though in later stages most people here find a geriatric psychiatrist more helpful.

I'm sure others will chime in. You have come to a good place for advice and support.

dancsfo

Dementia may increase the likelihood for falls, but it may also be due to age (loss of strength, balance). For that, your doctor may recommend a physical therapist, who can test her condition, and recommend exercises. Since falls and weakened bones may cause injuries, your doctor can recommend items such as calcium, vitamin D3, or osteoporosis medicine. You can also get a cane or a walker, and in some cases a doctor can recommend one.

A fall, which causes pain, combined with dementia, can be a bad combination that may cause delirium.

Fall prevention is independent of what dementia a specialist does, but it may be good to get it coordinated, since a PWD may resist actions that prevent falls, such as accepting the use of a walker.

harshedbuzz

@katbirdfl

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

Given your mom's age, assuming she's had the bloodwork and imagining to rule out other conditions with similar symptoms, I wouldn't necessarily escalate to neurology unless you felt you need a second opinion.

When you say that the doctor refuses to prescribe meds because of side effects, what sort of symptoms/behaviors are you seeking to address with medication?

Are you looking to try one of the new-line infusions? From what I am reading, the dosing schedule is not an easy one and the results are rather disappointing for women in particular.

Or are you interested in an oral/patch medication to help maintain the ability to function day-to-day? These kinds of meds don't stop or slow the progression of the disease, they don't do much for a good proportion of PWD who try them, and many folks can't tolerate them because of side effects.

Or does you mom have anxiety, depression and/or challenging behaviors? If this is the case, another option instead of neurology would be a geriatric psychiatrist for the management of psychoactive medications. TBH, once dad was diagnosed, the geri psych was the most help in dad's care.

HB

mabelgirl

Educate yourselves on what’s to come. As pointed out there is a lot of information on this site and lots of helpful videoTeepa Snow is one I find more informative. The legal stuff is extremely important as I assume your mom has enough facilities to state her wants. Putting it off can present a very difficult position in the future.

If anything I would look for a physician who specializes in geriatrics. Medication to slow progression maybe helpful but as you will learn there are different conditions with dementia that may not respond. Other medications are generally for behavioral type situations.
Don’t get down and be sure to take care of yourselves, it can be a challenging road ahead.

Quilting brings calm

https://alzconnected.org/discussion/comment/213499#Comment_213499

Because dementia has been around for decades and covid itself has only been around four years. The vaccine is not the cause of dementia. If it were only that simple that 1 thing was the cause of this tragedy of an illness.

Quilting brings calm

@katbirdfl Please don’t worry about the medication. The memory medication only helps symptoms in some of the people for a while, produces too many side affects for some people, and does nothing for the remainder. It doesn’t fix them, or even slow dien the progression/ just hides some symptoms for a while.
There are some other illnesses that can be identified via blood work etc that ‘mimic’ some dementia symptoms and that blood work should be done as those illnesses can be treated. Vitamin deficiency or thyroid issues for example.

H1235

The neurologist might distinguish what kind of dementia she has. My mom was diagnosed with vascular dementia with a life expectancy of 5 years and loss of memory not being the primary symptom. Alzheimer’s is I bit longer life expectancy and more memory issues. Is it important for your family to know which? If the cost is not an issue and she is cooperative it might be worth it. For us the neurologist was the one that said no driving and no living alone. These things were helpful for mom to hear from a doctor. We do follow up visits every 6 months and the neurologist has seemed much more on top of her dementia symptoms than her pcp. I know others have expressed the opposite. The neurologist said some people like doing the follow ups others just get the diagnosis and don’t come back. While there may be nothing to actually treat the dementia you will want a doctor you can go to that is comfortable treating symptoms if necessary. Anger, delusions and paranoia may eventually be symptoms that need to be addressed.