What It's Like to Have Dementia

There's a lot of popular confusion when it comes to dementia. Is it something only the elderly have? Is it the same thing as Alzheimer's? Do people ever come back from it? And even, is it a spiritual problem?

I spent about a year working in a nursing home and learned a lot about "What to Expect When You're Expecting Dementia." And I think one of the most important things for you to know is what it's like to have dementia - that way, you'll know what to expect, and how to communicate with your friend or loved one.

Of course, very few people can actually give testimony. But studies and research are being done with those who have early onset Alzheimer's to try to learn more about people in their 40's, 50's and 60's who can still communicate accurately what they're experiencing as the disease progresses through it's early stages.

And be very aware - I think it is ABSOLUTELY IMPORTANT to know about this topic and EXTREMELY HELPFUL to have experience with it. I consider myself an advocate for those on the margins, and some of the most marginalized people in our country right now, especially when you look at sheer volume of numbers, are those in nursing homes. Consider: even physically, they have to experience care together, in one building, set apart from the rest of the town. Now, specialized care is critically important for many, and many families do not have the resources to care for their loved one in their home after a certain point - there's a lot of guilt about this. But if you're thinking about where a good to place to volunteer would be, well, call your local nursing home.

Before we talk about what it's like to have dementia, let's do the schoolroom chalkboard thing and define it.

Dementia 101:
Does dementia mean Alzheimer's?
Dementia, per my personal, easy to use definition, refers to cognitive or memory impairment. So Alzheimer's is a type of dementia, but there are other types, too, and sometimes doctors simply say "dementia" as a reference to the disease. Dementia is a physical, biological disease, but it shows itself often in behavior, moods, verbal interaction, memory, and even personality. So sometimes cues that someone is beginning to develop dementia may not be that they drive to Arizona accidentally - sometimes it's mood swings, outbursts, difficulty expressing themselves - separate from what you know to be "normal" or "average" for them. Of course forgetting a skillet of bacon on the stove also counts, but the range of symptoms is wider than that. However, keep in mind that someone grieving can also display some of these things, so if Tess just lost her husband six months ago and is moody, combative or forgetful, don't jump to the conclusion that it's dementia.

Is this something only the elderly have?
Define elderly. In rare cases, people as young as their thirties can be diagnosed with early onset Alzheimer's. It's becoming slightly more common for women and men in their late forties, fifties, and sixties to be diagnosed. But slightly more common doesn't mean average. It's still a disease associated with aging. A lot of research is being done on this with awareness that the boomer population will hit this threshold in the next few decades.

Can you come back from it?
This is the most tragic part. Right now, the only medication available slows the process by about six months. But here's the thing: neither is it a death sentence. My job description at the nursing home was to provide for the psychosocial wellbeing of 109 residents. Their activity level was up to them. And that was in a nursing home. There are lots of assisted living facilities for people who can mostly manage, but need help with certain things. Both of those are different from retirement communities, which, I understand, are a lot like swingin' apartment living for the active and sometimes rambunctious.
What you should know about dementia is that often confusion increases as the day progresses - "sundowner's" is what the nursing home staff will call it. The later you visit in the day, the more confused, moody, and combative a resident is likely to be. Also, dementia patients have good days and bad days. So if you visit once a week for a month, it's possible that you could hit all good days or all bad days, giving you a different perspective on their condition than what is actually the case. Also, people with dementia lose their shortterm memory first, and keep their long term memory for the longest. So don't ask what they had for breakfast as a litmus test of their wellness. Instead, enjoy your time together by reminiscing about things from ten, twenty, thirty years ago. If you don't know the person you're visiting, then ask about their children, or career, or what it was like during the war, or where they lived. It's surprising how much you'll learn.

Is my loved one, who is yelling, losing their temper, and even swearing, not a Christian anymore?
One of our volunteers was in her eighties, and she struggled over this, because her beloved husband, in a nursing home in a different state, would yell, hang up the phone on her, and raise heck with the nurses. Finally, one day, Millie confided that she was worried "she wouldn't see him" in heaven.
"Millie, was he like that when he was younger? You were married to him for fifty years, so as his wife, you'd be the one to know."
"Oh no, he was loving and kind, not at all like this."
"Then Millie, I think it's safe to assume that this doesn't involve his will. He's not choosing to behave like this. If he was delirious with a fever, would you take what he said or did seriously?"
"Well no, because then he couldn't help it."
"Well I think the best way to think about this, then, Millie, is to realize that this behavior isn't chosen, it's a symptom of a disease, just like being delirious with a fever. I know that doesn't make it easier to deal with, because you love him. But God knows what he's experiencing, and you know what he was like for all those years. You know that dementia affects the brain, and the parts that control mood. This isn't really him."
A few months later, I visited Millie in the hospital. A few months after that, she died of cancer found to be suddenly and pervasively throughout her body. And I think that Millie and Joe are having a wonderful time together.

So what's it like to have dementia?
First of all, if you like to read nonfiction, put it down. Head over, in your mind, to the fiction section of the library, and then head over to the fantasy and sci-fi stacks. Because interacting with a person with dementia will never, ever, be cut-and-dried, predictable, or formulaic. It's the difference between "Herbaceous borders of North America" and "Alice in Wonderland." You're going down the rabbit hole, or to switch stories, over to Oz. It's much more Lewis Carroll and H.G. Wells than Martha Stewart how-to-scour-copper-kettles.

Now, think about dreaming. When you dream, there's often a period when you're suspended between waking and sleep: you're not sure if the dream you just had was real, or if you're awake or still dreaming. You still see images in front of you from a dream even as you hear your alarm clock next to your bed go off. Or you awaken to find yourself completely disoriented, not recognizing the room around you, until a few minutes pass and you remember that you're in a hotel, or visiting your sister-in-law.

Those experiences will be the most helpful in understanding what it's like to have dementia. One of the first things I learned was that it is pointless and counterproductive to argue with a person with dementia about what's "real" and what's not. It upsets them, and it also doesn't respect what they're experiencing. So when Mattie started collecting boxes in her room because she was getting ready to move, I was amused and didn't know what to do to convince her she wasn't moving. "Mattie, would you like to come have some coffee?" "No, I have to pack." Now, at this point, I wanted to a) be truthful, b) respect what she was experiencing as real, and c) get her out of her room for coffee. Because she didn't think she was moving from the nursing home: she thought she was moving - 40 years ago. The things she saw in front of her weren't only Room 105 - it was her house from 40 years ago, much like when you or I are slowly waking from a dream, and still see one image in front of us, even as we realize we're waking. So instead of saying "Mattie, you're in a nursing home" - which in some cases IS the best thing to do - I said, "Mattie, why don't you take a break from packing and have some coffee." It usually didn't work - she was on this kick for over a week - but at least it acknowledged what she saw as real, but also tried to engage her with other people.

This is why you can have an eighty year old crying because they don't know where their mother is. Violet wasn't asking if she's in heaven, in hell, or just buried. She didn't remember her mother had died. Some dementia patients - like when you or I dream - think of themselves at a certain time in their lives. So one sweet lady was constantly getting crushes on the men that worked at the nursing home, because she thought she was in her thirties. And things that they loved to do at that time of life, they often think they're doing now. But similarly, things they worried about fifty years ago, they may worry about today. Similar to a dreamlike state, time collapses like a telescope for the dementia victim.

Ninety year old Geneva constantly thought her baby was crying. So she was given a doll to hold, which helped bridge the world of today with her world of years ago. Years of caring for children were a lot of what defined her.

Alzheimer's varies a lot, though. So what one resident might experience as their house in front of them, packing 40 years ago, another resident down the hall might not see at all. Advanced Alzheimer's is why you see women and men sitting in wheelchairs or laying down on reclining, mobile chairs in nursing home hallways. This isn't abandonment: advanced Alzheimer's is closest to a coma state. So moving them from their rooms to the sun lounge, or a hallway, is ironically a way of increasing different stimuli. I am sorry to say that at this stage, I don't know what an Alzheimer victim experiences. No one does, though I'm sure researchers conduct brain scans at this stage to track cognitive activity. It's as murky as talking to someone in a coma. Can they hear? Do they feel the touch of my hand on their shoulder? Is there any point in reading scripture to them?

I always erred on the side of yes. Was that eyelid flicker a biological twitch, or a glimpse of understanding, response? I don't know. It doesn't matter. I did what I hoped someone would do for me. I tried anyway. At first it feels a little ridiculous to read a birthday card to someone whose pupils are fixed on the ceiling, or whose eyes are closed altogether. I would hold the card in front of unseeing eyes. But then I thought, gosh darn it, I will wholeheartedly try anyway.

This is just a little glimpse into what it's like to have dementia. Hopefully, knowing what it's like will help you interact with those who still have a lot to give. And don't get discouraged when someone doesn't remember that you visited: working with victims of dementia is often emotionally exhausting. But for that moment, they knew someone was in the room. For that moment, you visited the least of these, and so, what you did for them, you did "as unto" Christ. And remember to let yourself grieve: whether you're a 34 year old volunteer or a 58 year old son of a dementia patient, it's hard to see someone you care about gradually disappear. There are a lot of anonymous moments when you wipe a nose of someone who can't thank you, or visit someone who won't remember you were there. And that's okay.