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Understanding Dementia: My One-on-One With A Dementia Specialist

After last week’s “Wellness Wednesday,” where we talked about strategies for preventing dementia, I had the most enlightening conversation with a young woman who happens to have a great deal of experience working with dementia patients.

What she shared with me was not only fascinating, I think it will be an enormous help and resource for readers who have a loved one dealing with dementia. I have her permission to share some of her expertise with you. I have pages of notes!

Where do I even start?

Let’s start with our expert.

Meet The Expert

Haely Ordoyne grew up in the healthcare world. Her mother was a nurse at a hospital with an attached long-term care unit. She has been a case manager specializing in seniors and patients with developmental disabilities. After she married, she and her husband purchased a nursing home in Kansas. She has served as the social worker and, since 2010, the administrator of that home. Her expertise is in regulatory compliance for long-term care, Medicaid, and the VA. She is a member of the Kansas Adult Care Executive, and she advocates for senior issues at the State Capitol.

I’d say she is an expert. Here’s an excerpt from our conversation:

Obviously, seniors in general deal with health challenges that younger people don’t deal with as much, but what are the special health challenges you see with your patients who have dementia?

Haely: That’s a great question, and certainly patients with dementia are typically more susceptible to disease because their system tends to be compromised on many levels. They are experiencing cell degradation in different parts of their brain — some that control motor skills, some for memory, and some for biological functions, like the body’s ability to repair itself. As the cells die, the body’s functional systems stop communicating.

With cognitive decline, they progressively forget how to take care of themselves. If you think about the process a child goes through learning to take care of herself — learning to swallow, learning to chew food, learning to walk, learning to talk, learning to use the toilet, and all the other developmental growth stages a child experiences — then flip it on its head, you see seniors with dementia gradually losing those skills as the memory patterns in their brains begin to dissolve.

Can you give me an example of what that looks like?

It starts with little things: they can’t process complex math problems, they can’t remember where they left their keys. Then they can’t recite their home address. As it progresses, they might forget they left the burner on the stove on; they might touch it later and burn themselves. They might pour themselves a glass of milk, then walk away and forget it was there. Then, they come back two days later and see a glass of milk on the counter. They don’t remember that they poured it two days prior, so they drink it and get sick.

In more advanced cases, they can’t tell the difference between things that are edible and things that aren’t. They might see confuse a checker with a cookie and choke.

As the deterioration progresses, they forget more basic things, like how to chew food. Then how to swallow. They forget how to manage muscle contractions, so they might have a bowel movement in their clothes and not recognize that they need to do something about it. That can become septic and cause poisoning very quickly.

Again, the process is very much like watching a baby develop into a toddler and develop self-management skills, but in reverse.

It sounds like a horrible way to live. How severe are the cases by the time they come to you?

Haely: It varies, but most of the time, by the time they come to live with us, they are beyond the point where they can take care of themselves, and either the spouse is gone or the spouse is no longer able to provide the kind of specialized care the patient needs.

What age group are we typically talking about?

Haely: Honestly — and this is the thing that probably bothers me the most — it’s not limited to people in their 70s and 80s anymore. I am seeing more patients in their 60s, 50s, and even younger being diagnosed.

I have suspected for a while that we are going to see a tidal wave of new dementia cases in the coming years as decades of declining food quality comes home to roost. We can’t continue to eat garbage and expect to live healthily.

Haely: I’m so glad you said that, because what you said in your article was spot-on. Nutrition is absolutely key to protecting your brain from dementia. There are things you can do now that make a difference later.

More and more research is drawing direct links between things like GMO foods and dementia, exposure to heavy metals in the water supply, exposure to cleaning chemicals, and untreated vitamin deficiency, specifically Vitamin B12. These are all being identified as things tied to dementia.

Another thing that people need to be aware of is what we call “secondary causes” of dementia. These are things like untreated diabetes, stroke, stress on the heart, thyroiditis, which can cause unregulated body temperature, fatigue, STDs, even Lyme Disease. And what it makes it even more complicated is that different health issues lead to different types of dementia that affect different parts of the brain, so the symptoms manifest in different ways.

It’s interesting, so many of those fall under a group of related health conditions surrounding obesity — heart disease, coronary artery diseases, diabetes, stroke, and so on. The brain operates on glucose and fat, and if those aren’t in control, your brain suffers for it.

Haely: Absolutely. There are so many health issues that people just “live with,” but they don’t recognize how these issues play out if they aren’t treated properly.

You work with a wide variety of nurses. Are there some who are exclusively geriatric or dementia specialists? Tell me about the kind of specialized training nurses in this environment get.

Haely: Yes, there are definitely specialists among the nursing staff. Skilled geriatric and dementia nurses are trained specifically to provide immediate, temporary care for higher medical needs. For instance, if a patient has a stroke or a broken hip. There is typically a 100-day period of rehabilitation and therapy that requires this higher skill set.

For geriatric nurses, their training is more for long-term care, but even their training is unique. They are trained to recognize the kinds of health issues that seniors are more susceptible to — nutritional deficits, drug interactions for patients who are taking several different medications, and so on. They typically work closely with patients to help them adjust to things that are different when you’re 80 years old. You might want to think you’re 30 or 40, but 80 is different. Seniors have different emotional needs, spiritual needs, psychological needs, and even sexual needs. You have to deal with all of it appropriately.

Dementia care is very individualized. These nurses have to be able to work a wide variety of personalities, and then deal with variances on those personalities, because dementia can switch parts of the personality on and off, and you have to be able to handle that. You have to be able to resolve conflicts — physically, mentally, and emotionally. You have to be able to be patient with a person who has forgotten how to swallow their food.

Thanks To Our Expert

So much great content from an expert who was willing to share an hour of her time with me this week. I can’t thank Haely enough. I have more from that conversation, and I’m looking forward to sharing it with you next week because it’s important for anyone who is a caregiver or knows a caregiver.

If you or someone you know is battling dementia, please know that you are not alone. There are resources to help you navigate this new season in your life, and things you can do to protect your brain, or at least slow the process. And please take a few seconds to share this article with them. There may be people in your circle of influence right now who are at risk and don’t know it, or that are already declining and don’t know what to do about it. This information might just be exactly what they need.

“At the end of your FEELINGS is NOTHING. At the end of your PRINCIPLES is a PROMISE.” — Eric Thomas

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