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.