Dementia: The other pandemic and what we can do to help

I was privileged to host a webinar recently on self-advocacy. I touched on a lot of topics, such as how to choose the right advocate and how to be prepared to go to the emergency room or the hospital.

But one topic I spent quite a lot of time on is one that's on the mind of a lot of people these days: dementia. This is especially true if you're the child of a parent who's getting into their 70s and 80s.

Dementia has been growing in prevalence, not only nationwide but internationally. Why do I call it the other pandemic? Because, for many people who had a little bit of memory impairment before COVID, it blossomed into something more dramatic during COVID.

Being alone is not good for a person's soul. People got more depressed, more anxious — just discombobulated.

The incidence of dementia is going to double over the next 30 years, particularly among those who are less well off. This may have to do with social stimulation and nutrition, but no one is immune.

If you, a parent or loved one are over 65 and there's concern about memory, there are things you can do. The first step is to have a neuropsychological evaluation, which will tell you if there's no impairment, mild impairment or early signs of disorders like Parkinson's disease.

A neuropsychological evaluation measures how well a person's brain is working. The abilities tested include reading, language usage, attention, learning, processing speed, reasoning, remembering, problem-solving, mood and personality and more. If the results are normal but memory continues to be a concern, repeat the evaluation every two years or so.

If the evaluation shows anything abnormal, see a well-qualified neurologist because there are many forms of dementia. Alzheimer's is the most common, but there's also vascular dementia, frontotemporal dementia, aphasia (the one actor Bruce Willis has), alcohol-related dementia and several more.

The different forms of dementia have different treatment protocols. The medications available right now are adjusted by type of dementia and they can slow down the progression of the disease quite a bit.

If dementia is present, safety becomes the main concern. I was asked by a family — four sons and a daughter — to assess their mother's situation. The sons were convinced she needed to go into memory care; the daughter just wanted her mom to be happy.

I went into the home and met the woman, assessed her home for safety and asked questions. I could tell she had pretty significant short-term memory issues.

She was so scared she would be forced to do something she didn't want to do that she had hidden her purse — and then couldn't remember where she had put it. The daughter and I spent half an hour looking in her hiding places, and we finally found it in the back of the closet. Mom's light bulb went off: “I guess I do have a memory problem.”

I assured her no one was going to force her to do anything she didn't want to do. I advised them to get a neuropsychological evaluation and, if it showed significant impairment, it was time to sit down with her family and explore her options, based on ability to pay. Did she want to remain in her home for as long as possible, or go into a community care situation?

Unless a court has said someone isn't competent to make decisions, they have a right to choose their course of action. Quite often dementia patients don't do well with change. In this case, it might be good for mom to have a female companion for a few hours a day to talk with, go shopping with, play cards with. When I left, she had a smile and she thanked me.

The important thing is this: Don't just wonder whether mom or dad is becoming memory-impaired. Have them tested so you have some data to go on. If anything comes back abnormal, find a good neurologist, then sit down with someone who knows the options based on the patient's goals and their ability to pay. Not everyone has planned for long-term care, but there are options for everybody.

As I've said before, though dementia is a relentless disease, you aren't helpless. Take steps to help a loved one — or yourself.

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (www.NorthShoreRN.com). She is offering a free phone consultation to Daily Herald readers; call her at (847) 612-6684.