This is the second of a series of five posts about the senses in Dementialand.

Today we focus on touch.

The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of how one should consider tactile stimulation for those with dementia.

But allow me to start here…

There are many articles that tout the benefits of touch for those with dementia. I often read that people with Alzheimer’s don’t get enough physical contact. I hear that those who live in memory care communities crave touch. Sometimes people use the term “touch deprivation.” I cannot disagree, but I think there’s more we need to think about.

As humans, we like touch from individuals we like and trust. We don’t like touch from those we dislike and distrust. And we generally become anxious if we receive intimate touch from someone we don’t know.

Dementia doesn’t change this.

In the past couple of years, I have noticed a trend on campus. I have seen several small groups hanging out by our student union with signs that say “Free hugs!” For my own amusement (and because I have a psychology background), I have watched reactions when faculty, staff, and students pass the “Free hugs!” crowd.

Some people think groups offering free hugs to strangers are fantastic. They see this as all that is good about society. And then…there are people who are nauseated by the thought of someone they don’t know offering them a hug.

Let’s be honest. We all have varying levels of comfort with touch. Some of us are huggers; some of us aren’t. And those huggers can make those non-huggers feel pretty dang uncomfortable. I have seen non-huggers on campus walk an extra quarter mile to avoid the huggers. If I’m being honest, I’ve done it myself.

Throughout life, people with dementia have developed (just like the rest of us) their own expectations for when it is okay to hug, okay to touch someone’s shoulder, okay to hold hands, etc. And dementia complicates this…making it an oversimplification to think we are going to improve quality of life in Dementialand by running around offering hugs and holding hands without second thought.

If we touch people with dementia, we need to make sure that touch is welcomed and not anxiety-provoking. We need to pay attention to body language. If they indicate they are not comfortable, we need to back off.

I was at a nursing home once when a woman with Alzheimer’s had a visitor. It was her adult nephew, a gregarious guy who she hadn’t seen in months. He marched in and engulfed her in a bear hug. From a distance, you could see that the woman was uneasy or even scared.

From his perspective, he was embracing a woman he had known his whole life. To her, however, a strange guy had just walked into her bedroom (a space that is generally sacred–how many people do you allow into your bedroom?), rushed up to her, and pressed his body against hers.

He could have done a few things differently. He might have knocked on the door and said something like “Hi, Aunt Dianne. It’s your nephew, John! So good to see you!” before entering her room. He might have approached slowly to give her a chance to process who he was. As he moved closer, he could have looked for a positive sign (a nod, a smile, eye contact) that she would welcome a hug. These steps may, or may not, have caused her less anxiety.

People with dementia often have limited peripheral vision. This means that approaching someone and initiating touch from the side or the back can startle a person. I have many times made the mistake of approaching someone with dementia from behind and placing a hand on their shoulder. I don’t even give them a chance to identify and process who I am before I touch them. I don’t like someone putting their hands on me if I have no idea who that someone is. Neither do people with dementia.

I recently met a man who was caring for his wife with dementia in their home. For many years, they sat side-by-side each evening on the couch watching television. Sometimes he would put his arm around her. As her dementia progressed, he realized that putting his arm around her often triggered a negative reaction. She’d look at him with disdain and confusion before getting up to move across the room.

Perhaps it was that she wasn’t exactly sure where that touch was coming from because he was at her side rather than in front of her. Maybe she would forget who he was and wonder about this strange man  who had the nerve to put his arm around her. I wasn’t sure of the explanation. Painfully, I had to suggest that this gentleman stop trying to put his arm around his wife.

Sometimes those with dementia need assistance with activities of living (bathing, dressing, toileting, etc.) and this requires touch. The touch needed to complete these tasks may or may not be welcomed. However, there are a few tricks that caregivers may find useful.

First, make sure the individual can anticipate when and where touch will occur. Of course, you can relay this verbally by saying something like, “Marta, I’m going to help you put on your shirt.” As the disease progresses, these messages become harder for an individual with dementia to process. It may also be useful to make sure an individual can see the shirt, your hands, or anything else that might help them to understand what is about to happen.

Second, move slowly in providing care that requires physical touch. I understand that this can be challenging for a professional caregiver who works in an understaffed nursing home. It’s also not easy for a family caregiver who has a plate full of responsibilities. Keep in mind, however, that the same touch sequence can be perceived differently by a person with dementia when it is carried out more slowly. Sometimes what can be perceived as an assault or attack when you are in a hurry can be perceived as a moment of connection when one takes their time.

The brain must make sense of the information we gain from making contact with the world around us. We use our hands to test the bath water before we get in the tub. If it’s too hot, we pull our hands back quickly. Our brain has given us the message that contact with something this hot can be dangerous. We run some cooler water before we get in tub.

Someone with dementia may get in a bath tub full of dangerously hot water. Their brain cannot relay the message that the situation is dangerous. Days later, a family member may notice blisters or burns on their body.

Dementia changes how a person experiences the world. A favorite blanket might now be too heavy. An old sweater might become too scratchy. Shoes that were once comfortable might not feel quite right anymore. Someone who used to enjoy the sensation of sitting outside and feeling the breeze on their face might now be annoyed by the wind. A guy who used to enjoy peanut butter won’t eat it anymore. It’s a texture thing. He doesn’t like the way it feels in his mouth.

I know someone with younger-onset Alzheimer’s who suddenly hated wearing jeans–they just didn’t “work” for him anymore although he couldn’t explain why. His family had to buy a large supply of corduroys because that seemed to be the only type of fabric that wasn’t irritating to him. His new uniform became a pair of corduroys and an Iowa Hawkeye sweatshirt. Every single day. It just felt right to him.

These changes in preference are not indicators that people are being difficult. They show that communication between brain and body are altered.

This is the first of a series of five posts about the senses in Dementialand.

As I write this, it’s a gorgeous early fall day. I am sitting in our living room with the windows open. College football is on TV. There are a couple of candles burning…one in the kitchen and one in the bathroom.

Our ancient mastiff, Karl, is curled up in a tiny chair in typical Karl-fashion. Our 20-pound mutt, Gus-Gus, is sitting on my arm as I type. I’m so used to him being in this position that I barely notice how hard it is to navigate the keyboard. The cats have found a sun puddle to share.

I can hear our neighbor guy mowing his yard. He is retired, and he probably devotes 20 hours a week to his lawn. There is an odor in the air that tells me another neighbor must be grilling.

It’s cool enough that I’m wearing a sweatshirt, but warm enough that I’ve got on basketball shorts. I just heated up some canned soup for lunch. As I usually do, I added oyster crackers. A ridiculous amount of oyster crackers. I like the crunch and the saltiness.

It’s a good day.

It’s a good day because I am able to experience the world through sight, sound, taste, smell, and touch. Our experience of the world is based on those five senses, and our feelings and actions are based on this experience.

This makes me think about how dementia changes one’s experience of the world. And I have an idea.

Normally, I don’t have a plan for my blog. I don’t know what I’m going to write until I sit down and write, but this time I’m showing unprecedented forethought by doing a series–a series on how dementia changes how individuals experience the world.

There will be one blog post about each of the five senses. Today, for no particular reason, we will start with smell.

It is true that our sense of smell declines as we age. Many people will notice that as they get older they can no longer detect smells like they may have been able to in the past. However, the change that occurs for individuals with dementia is more severe and can even be dangerous.

Smell has an important function for us. It helps us to detect danger. People with dementia may lose the ability to interpret certain smells as signs of danger.

A few nights ago, I put a couple pieces of leftover pizza in the oven. Then I got busy putting away laundry and forgot about the pizza. You know what alerted me to the burning pizza? The smell of burning pizza.

People with dementia may also forget that they put something in the oven. However, they may not be alerted to a problem by the smell of food burning. They may even turn off a smoke detector because they think it is malfunctioning.

Smoke alerts us to fire…that connection is eventually lost for people with dementia.

Smell also alerts us to spoiled food. You go out to eat. You put your leftovers in the fridge. You forget about them–until something in your fridge start smelling like death a week later. You remember the leftovers. You take them directly to the trash can outside because if you put them in the kitchen trash your whole house will stink.

It doesn’t work that way for people as dementia progresses. It may not be that you cannot smell the odor of your leftovers. It’s just that you don’t interpret that smell as problematic. Your nose doesn’t shrivel up to make what is sometimes called “stank face.” You find the food from last week. You don’t remember when you went out to eat. You’re just excited you have something to eat for dinner. It isn’t rare for someone with dementia to experience food poisoning because they’ve eaten rotten food.

Unfortunately, it’s also not rare for someone with dementia to drink a liquid like bleach. If I tried to drink bleach, my nose would alert me to a problem before the bleach got to my mouth. My brain would immediately send out an “abort” message. However, the dementia brain may be unable to relay that message. I’ve known people with dementia who have tried to drink Clorox bleach, Pine Sol, laundry detergent, and glue. The chemical smell of these liquids didn’t trigger a danger warning.

You may not realize it, but the nose of a typical person does a routine sniff test of anything we want to put in our mouths. It sends a warning to the brain if something isn’t quite right. The dementia brain drops the ball on this.

Our sense of smell also alerts us to problems with our own hygiene. I’m gonna admit something here…I sometimes wear clothes more than once before I wash them. I take off items of clothing at the end of the day and must decide whether they go back in the closet or in the dirty clothes pile. (For me, this is especially true for jeans because they become more comfortable after multiple wearings.) You know how I make that decision? I smell the clothes. If I can still faintly smell laundry detergent, they go back in the closet.

A person with dementia might take off their clothes at the end of the day and throw them on top of the dresser. In the morning, they find some clothes on the top of the dresser and put them on. They may remember they wore these clothes the day before–or they may not. Maybe they do this for several days in a row. And then a family member comes to visit and asks, “What’s that awful smell?” The person with dementia isn’t bothered by the odor, so they are offended and angered by the question.

A woman I know was checking in on her mother, who was in the early stages of dementia and lived alone. She hadn’t visited for several days. When she walked in, the smell of urine was overwhelming. She went on a hunt to find the source of the odor. She found several pairs of wet underwear wadded up under the bed. Her mother, oblivious to the offensiveness of smell, couldn’t tell her how they got there. It’s likely she was so embarrassed about not making it to the bathroom that she decided to hide the evidence.

My husband and I have three dogs and two cats. Every once in a while, once of us smells…something. Maybe it’s the smell of pet urine. Maybe it’s feces. The instant we smell that, we are on the hunt to find the source. The smell is so offensive to us that we stop whatever we are doing to take care of it. It’s urgent.

People with dementia, even if they do smell those pet odors, may not be interpreting them as problematic. It’s not unusual that people with dementia forget to clean the litterbox or don’t pick up dog poop on the kitchen floor. Why? Because they aren’t motivated into action by the smell. Obviously, this can create unsanitary and unsafe conditions.

Keep in mind that our actions are based on how we experience the world. Dementia alters those experiences by changing our sensory perceptions. When people with dementia do something that seems illogical to us, it is often because those are logical actions based on their experience.

And those experiences are based on what they do and do not taste, see, hear, touch, and smell.

My path has taken me to quite a few memory care communities. People with advanced dementia have made all sorts of comments to me.

About once a month, I am asked when my baby is due—although I’ve never been pregnant. Ever.

I’ve been told I have the nose of a beautiful Jewish woman.

Someone once said, “You look just like my daughter. She’s a horrible bitch who never visits me.”

A while back someone seemed to have me mixed up with Hillary Clinton. I think this was a result of confusion between a TV news story in an adjacent room and real life. It’s not like I was wearing a power pantsuit.

A guy at a community I visit once a month has told me that either I’m really busy or try to give the message I’m really busy. He knows this because I usually wear my hair pulled back into a ponytail.

Sometimes people with dementia try to guess my age. When they say 50, I don’t take it personally. After all, they might have poor vision as well as compromised judgment. However, I forget about that poor vision and compromised judgement when they guess I’m 25.

This summer, a woman with dementia looked me up and down before saying, “Look at that thing. It’s so pretty.” I lived on that compliment for a week.

Once a lady with Lewy Body dementia was convinced I was sent by the devil, and she insisted that the staff remove me before I burned down the building. She had tears streaming down her face. I can still picture her shaking in terror…

I have emotional reactions—positive and negative–to what people with dementia say. However, lately I have been more in tune to what people with dementia can’t say.

As dementia progresses, people lose their verbal skills. To me, this is one of the cruelest parts of the journey. The thought of being unable to express myself verbally terrifies me.

I see people with dementia crying, and they are unable to tell us why. They might be in pain. We can’t determine where the pain is occurring and what’s causing it. They might be scared. We don’t know what’s scaring them.

Although connecting with someone who can’t speak can be challenging and time-consuming, that connection is incredibly rewarding when it occurs. Sometimes it occurs through touch. Or through a smile. Sometimes it’s music that helps us reach an individual who can’t speak. When we reach them…it’s something. When we are able to decipher a message that comes without words, it feels good.

A woman in a wheelchair once reached out to me as I passed her in a nursing home corridor. At first I thought she was trying to strike me, and then I thought she needed something. I asked her if she wanted me to push her down the hall. She grunted in frustration and reached out to me again. This time she grabbed onto my dress and tugged on it.

I asked her if she wanted me to get a nurse. She stared at me, obviously frustrated with my lack of understanding. She grabbed my dress again. This time she was almost petting the material like it was a cat.

“Do you like my dress?” I asked.

She broke out in a wide grin and nodded. That was it. She needed to tell me that she liked my dress. I immediately liked any woman who would go through this much frustration just to compliment another woman on her clothing.

I told her my “secret.” It is a dress from Land’s End, and I actually have at least seven of the same dress in different colors and patterns. (If you work with me, you’ve probably noticed this…I’ve no shame about it.) I told her that I had finally found a work-appropriate dress that I didn’t have to iron, so I was going to get maximum mileage out of it.

She gave me a huge smile. She understood.

As I walked away, I felt like a million bucks. It took a little extra time on my part, but her compliment was worth it. She had made my day. I went home and ordered one more version of the dress from Land’s End. This time it was in red.