dementia

This Ain’t Just About Memory: Dementia and Gait Changes

LOUDER. FOR THE PEOPLE IN THE BACK.

There’s more to dementia than memory loss.

As part of a series of posts focusing on symptoms not related to memory, I’ll be talking about gait changes today.

So what is gait? Gait is manner by which someone walks.

And dementia can absolutely change how a person walks (and moves in general). It almost always does….sometimes even before a diagnosis. In fact, if you have a loved one with cognitive issues, you should also mention any changes in walking and movement at a doctor’s appointment.

Maybe you’ve noticed that they shuffle.

I often hear the word shuffle in reference to dementia. The dementia shuffle. Maybe the Alzheimer’s shuffle or the Parkinson’s shuffle. A slow walk characterized by short steps. Frequently the gaze goes to the ground rather than the horizon.

However, not everyone’s gait changes in such a predictable way.

A man recently told me about his father, Ron, with Alzheimer’s who started limping as if he had an injured foot or sprained ankle. When asked, Ron said there was nothing wrong with his foot. He was fine. And he was walking fine. The limp was dramatic enough that his son took him to the family doctor.

The doctor sent him for X-rays, which turned into a stressful experience for Ron. In the end, they didn’t find anything wrong with his foot.

Ron’s son told me that his dad continued to walk this way for the next year or so when he moved toward end stage Alzheimer’s and couldn’t walk at all.

It always bothered Ron’s son that he couldn’t figure out what was wrong with his dad’s foot.

I asked if it seemed like he was in pain when he walked. He didn’t. And he continued to insist his foot was fine and there was nothing wrong with the way he walked. He didn’t know that he was limping at all.

Perhaps there was something wrong with the foot. Maybe there was an injury that Ron couldn’t express and didn’t show on the X-ray or physical exam. I appreciate that they checked it out.

But after hearing about the situation, I don’t think there was an injury. I think the limp was caused by dementia.

Your brain is the control center for your body. When your brain falters, it struggles to give your body adequate cues to move in the way that it’s moved in the past. The missing connections differ from individual to individual, so gait changes occur differently in each person.

If you know one person with dementia, you know one person with dementia, right?

Our brains are unique when they are healthy. And when they falter, they falter in unique ways–even for people who share a diagnosis.

Sometimes people with dementia lean to one side or lean forward when they walk. Sometimes they no longer swing one or both arms. Perhaps they consistently take a big step with the left leg followed by a tiny step with the right leg. One person I know told me that their mom walked like she was “out of alignment” and shifted in one direction.

It’s likely that people with dementia walk more slowly and require more focus and concentration in moving. They may struggle to talk while they walk because walking is a task that requires all of their cognitive focus. They may lose track of where they are intending to walk because walking itself takes so much mental (and perhaps physical) energy.

Recently I almost lost my cool (and I would’ve except I’m working on being more thoughtful before I react in the New Year) when I saw a nurse aide scold a resident with dementia for “dawdling” on her way to the dining room. I wanted to cheer for the resident when she yelled back, “This is as fast as I go, mean lady!”

To my disappointment, the aide then grabbed a wheelchair and practically shoved the resident into it because “we don’t have time for you to drag your feet.”

It was ironic because in this case the dragging of feet was a symptom of dementia. The aide was saying…we don’t have time for you to have dementia.

Although I know nursing homes are understaffed and aides have a lot to do, I wanted to explain to the nurse aide that a nursing home is not the right place to work if you get frustrated by slow-moving folks, and these slow-moving folks are hustling–even if it’s not always apparent to an outsider.

If your gait has changed due to dementia, berating you like you’re a middle schooler slacking in gym class isn’t helpful. You’re not going to move faster because I scold you.

Sometimes we think there is something wrong besides an existing dementia diagnosis when changes are related to movement and body. We are told that dementia is about the mind. It’s about forgetfulness. It’s a cognition thing.

We aren’t told about the connection between connection and movement. When the brain doesn’t work efficiently, it loses the ability to control the body.

My husband’s grandfather passed away of Alzheimer’s. I once asked my mother-in-law if she knew what Alzheimer’s was when he was diagnosed. She said no–that she just thought he’d get really forgetful and maybe have to live in a nursing home someday. She didn’t know he would die from it, and she certainly didn’t know about the symptoms other than memory loss.

The lack of education and resources given to those diagnosed with a form of dementia and their families is frustrating. We are working to make support available, but connecting with the individuals that need us is challenging. We can’t cure dementia at this point, but we can help people adapt to changes and support them.

To do this, we have to educate people about what dementia really is…it’s not just memory loss.

Until we understand this, we will continue to shortchange people living with dementia and their care partners.

14 thoughts on “This Ain’t Just About Memory: Dementia and Gait Changes”

  1. I like your blogs. I have early onset dementia. I would like to add about the balance issues. When people ask about what it is like, I give this example about balance. I tell people that it feels like I am walking in a “bouncy castle” and also may feel like I am bouncing off the walls(side to side). I guess the positive part of this journey, is that I still have the insight into what is going on, and I can talk to others about this.
    Keep the blogs coming.

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  2. Thank you, as always Elaine. I have frontotemporal dementia and yes my gait has changed and my mobility so reduced in the past 6 months that I now have to use a stick to avoid falling over – I also have the jerks and twitches at night described by Tehachap . Interestingly, I still have enough insight to recognise the changes described and other declining features – a double edged sword, a good thing because I live alone and need to notice and report the changes, a lousy thing because it sucks…BIG TIME!!!!

    My question is how are we going to educate these “Care” staff to understand the varying symptoms; what to expect; and how to support us? Living alone, I will have to go into residential care when I can no longer keep myself safe at home – the health assessors are already trying to push me along to make that decision, although I do not feel ready (are we ever?) It is so scary, why do so many carers not realise (or care) that this is not our fault – we don’t choose to lose our skills. I was a Clinical Psychologist before I retired – I am not stupid, but I am becoming less capable every day, and I am watching it happen, and although as a dementia advocate I try to always remain strong and positive, in the public space, some days (and those days seem to be multiplying) it is truly awful.

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    1. I was a home health aide for a long time, looking after dementia patients was my absolute favorite. I always attributed the shuffling to age, as I’m sure most care staff would. I can’t imagine having to educate aides that elderly people move slowly, no matter the reason. It seems like common sense.
      I now work in a hospital and I’m surprised at how little hospital staff, including RNs, know about dementia. They don’t want to hear an aide explain to them to them that it’s not their fault that they keep getting out of bed or keep repeating words and phrases. It’s actually very sad.

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  3. Re: Road Rage — I didn’t realize this was part of the dementia — I made my husband give up driving when he got angry while driving and passed a semi-truck on a two lane road when it wasn’t safe to pass. That truly scared me and combined with other incidents, I made him realize he needed to give up driving. Thankfully, he hasn’t resisted it and I haven’t had to take his keys away.

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  4. Gait isn’t the only physical change — extremities twitch, jerk and strike out at night during sleep, and sleeping with a person with dementia can be a painful thing. I spoke with my husband’s neurologist about his jerks, twitches and body movements. He said it was part of the disease process and suggested we get twin beds, and to make sure my husband’s bed was low–ostensibly so that if he happened to fall out of bed, he wouldn’t fall that far and the risk of injury would be less. I had noticed my husband’s gait had changed and that he bumped into things all the time. An ever-changing dynamic…

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  5. It’s sad to think of all the pressure put on folks with dementia, as well as the anger directed at them because of behaviors related to their dementia. Behaviors that few people attributed to dementia. I’m of the impatient sort. I hope all I learn here will help me to be more compassionate with those living with dementia and old people in general.

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    1. You are right… We don’t get mad at someone who has lung cancer when they cough, but sometimes we do get angry with someone who has dementia for their symptoms. I relate to you because I am not patient by nature, but I am a work in progress. 🙂

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  6. Thanks Elaine. My Mum has Lewy Body dementia. One day she refused to put any weight on her foot and was taken off for examinations and x rays. No obvious cause was found. This continued and occasionally she would manage a few steps with her whole leg turned outwards. She is now unable to walk at all and bed bound with fixed flexure contractures of both of her legs with no apparent cause other than her dementia. This is such a disabling form of dementia with very little explanation as to the cause of the physical disabilities.

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  7. This is a wonderful article. I would never have known that the gait and looking down were related to the dementia. Thank you!

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  8. Once again, Elaine, an excellent post. It took a long time before I realized that my husband’s gait issues were related to his Fronto-Temporal Degenerative Dementia. In fact, as I looked back, it was one of the earlier signs, other than this very patient man having difficulty with road rage. Thank you for putting into words things that need said.

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