What It's Like to Experience Alzheimer's: A Virtual Dementia Tour
Do you think you know what it might feel like to have dementia?
Alzheimer's Disease is a particular form of dementia that steals more than just the memory of the person it takes over. It changes the way families interact with one another, and it takes away a person's independence in the cruelest of manners. There is nothing that can be done to stop it once it starts. It slowly destroys the brain cells until it eventually causes death. Though advancements have been made in treatment options and preventative measures, no cure has been found.
Most of us know someone who has dealt with the disease either directly as a caregiver or indirectly watching someone else take care of an Alzheimer's patient. If neither of those scenarios fit, we know someone else who has had to deal with the awful reality of it somehow. But do we fully understand it? Many of us think we do. Even so, our understanding of it is limited.
What if we could experience dementia firsthand? Would that make us more compassionate, more understanding, more patient, and less irritable when dealing with someone suffering from the disease? Probably so. Still, most of us will never have much of an inkling of what it is like inside the mind of an Alzheimer's patient. Even after learning more about it, our understanding is limited. However, there is something everyone can do to grasp the reality an Alzheimer's patient is dealing with more effectively. Take a virtual dementia tour.
What Is a Virtual Dementia Tour
A virtual dementia tour simulates some of the things a person with dementia might be experiencing. Although it cannot accurately replicate the brain deterioration or other causes of dementia, it can provide a better understanding of why a person with dementia behaves a certain way. The experience sets the person taking the tour up for failure. Why? Because the goal is for people to understand that behavior is not always a choice, as we are conditioned to believe.
Individuals taking the tour have a device placed in their shoes to create some discomfort walking, which some elderly experience for various reasons. Next, gloves are put on the hand or tape is used to tape a couple of fingers together, which simulates arthritis or the loss of sensory and tactile function experienced as a normal part of aging. Goggles over the eyes simulate common eye conditions, such as glaucoma or macular degeneration. Last, a headset is placed over the ears constantly playing noises imitating all the cacophony that some patients have difficulty tuning out. Conversations, for instance, of several parties at once, a firetruck siren going by, or a telephone.
Then a person is given a list of five simple tasks to complete before being sent into a simulated living environment. Each person participating is given ten to fifteen minutes to perform these tasks to the best of their ability under those conditions. Many times, only one person at a time is sent in, but sometimes the guides stagger the starting time of the participants so that more than one person is in the living area at a time. No one is given the same list of tasks to complete as another participant, however. It sounds like a piece of cake. It is not.
Taking the Tour
This very eye opening experience was something that I did with my best friend, Cheryl. In some ways, it was what I expected it to be after first learning about the tours. In other ways, it was not what I expected. There were many moments of clarity, especially afterward, and the discussion following the experience was perhaps the most enlightening for me. It was then that we were fully able to make connections between what we experienced for only ten minutes and what dementia patients experience on an ongoing basis. Reading and observing are very different from doing.
Before we started, we filled out a brief questionnaire relating to our current state of mind. Our answers were both the same. Do you feel capable of carrying out simple tasks? Yes. Are you relaxed? Yes. Do you think people with dementia (always) get the care they need? No. Have any of the following characteristics applied to you in the last 10 minutes: pacing, negative thoughts, talking to self, following others, searching for items, difficulty understanding directions? No to all of the above.
Next, our guide explained how it works. In our case, we were sent in one at a time. The guide let us know that neither of us would have the same tasks. Also, there would be a list posted in the room of our particular tasks to complete. Neither of us remembered that fact, and we found out later that it would not have helped us much even if we had. Another tour guide went into the room with us, but only to observe our actions and behavior, or so we were told. At that point, our lesson began.
Cheryl was the first to enter the room resembling a nursing home room. I sat patiently and watched as they equipped her for the simulation. I listened as the guide read her the list of tasks she was to complete: find the white sweater, write a three sentence note to your family and put in the envelope, set the table for dinner, fold all of the towels, fill a cup 1/2 way with water and drink it. As she was attempting to complete her tasks among all of the distractions and physical challenges, I chatted a little more with our tour guide. At one point, we heard a scream come from the room and our guide prepared herself for a rescue if need be, but all quieted right away, so she relaxed again. So I knew at the very least I was potentially in for quite a startling experience when it was my turn. It turns out that she managed to complete four of her tasks, a rare accomplishment and, in her case, completely by accident.
With the room left just as it was when Cheryl completed her turn, I was sent in next. I had no idea what it was Cheryl had completed and did not remember her list. I did not pay much attention to her tasks because I knew mine would be different. I did have it in my mind, however, that I would try it like a memory game. You know the ones that have you naming a list and trying to recall the items in order? As it turns out, I could not hear what she was rattling off to me when she suddenly began telling me so that strategy was not going to work. I was still trying to tune out the noises in my ear enough to focus on her words and to hear them. My tasks: put the belt through the belt loops on the pants, match six pairs of socks, clear the dinner table, draw a picture of your family and name them, find the necktie and put it on. I completed only two of my five tasks. And actually, one of them was not fully completed.
After we both had our turns in the room, we discussed our experiences. The first question asked of me when I exited was how did I feel. Disoriented. We also answered the same questions we initially answered before going in. Do you feel capable of carrying out simple tasks? No. Are you relaxed? No. Do you think people with dementia get the care they need? No. Have any of the following characteristics applied to you in the last 10 minutes: pacing (both no), negative thoughts (both no), talking to self (Cheryl), following others (no, but might have happened had we been in the room together), searching for items (both of us), difficulty understanding directions (both of us).
Cheryl's Unique Experience
When the guide started reading the list to her, Cheryl was not prepared. It took her a few seconds to realize that it started. She thought she heard two of the tasks and focused on them as she went in. It was hard to see the items unless she was close to them. Vividly remembering she was supposed to write three sentences and that she needed to fold towels, she went straight to the bed and began folding them, first picking up a sheet that she thought was a towel. Tuning out the noises in her head was relatively easy until a firetruck siren sounded in her ear. It turns out that this noise was what startled her enough to scream. Coincidentally, an ambulance was also going by outside at about the same time. After the sound had startled her, it became harder to tune the others out. She sat on the bed and looked around the room a bit before resuming her task while remaining seated. A slamming door startled her somewhat, and a telephone ringing caused her to wonder if there was one in the room that she briefly looked around for in case she was supposed to answer it. Also, the pattern on the bed comforter was hard to see. Some of the towels blended in with it, too, making the task a little more difficult.
She folded the towels and left them neatly in the basket on the bed before going to the desk to write her three sentences, which she forgot to put in the envelope. A pitcher of water was sitting on the desk, so she poured a glass that she did not drink. Unsure of what to do next, she walked to the shelving unit at the foot of the bed, located in the corner. She noticed the shelf on top containing dishes but could not focus on the rack underneath where clothing hung on hangers. Her mind began to wander a little while looking at the shelves, thinking about what she could do next to pass the remaining time, and she ended up moving the ties and the socks to the basket on the bed before deciding to set the table. But it was hard to sort through the silverware. The bowls were easier to pick up, so she grabbed them first and set all four of them on the table, but her feet began hurting at this point. She found the knives first but did not want to walk anymore after they were set out. Still, she made it back over to the shelf. While trying to find matching fork sizes, she noticed an image of an elderly lady in the mirror and wondered if that was supposed to be herself.
At that point, she was planning just to sit down and wait, but her time was up. To her, ten minutes felt more like twenty while trying to complete tasks she couldn't remember and figure out what to do to pass the time. Relieved, she was sent to wait outside as I took my turn.
My Unique Experience
As I said earlier, I thought I was going to remember what most of my list was. I was wrong. Oh so wrong. Unlike Cheryl, I realized she was reading the list to me right away, but I wasn't ready to focus on what she was saying yet. Right before I entered the room, I said out loud, "I didn't catch most of that." Although, I did succeed in remembering I had to match six pairs of socks and clear the dinner table. The table was to my right as I walked in, so I thought I would start there. Pausing for a moment, I tried to familiarize myself with what was in the room and where. But for some reason, I didn't want to waste too much time, so I didn't linger long on fuzzy objects in the distance as I glanced around. I noticed a clothing rack in the corner with a distracting light flashing at the bottom of it, a bed straight ahead with a painting on the wall above it, a desk between the bed and the table, and a portable toilet across from the desk on the other wall. A window was on the wall that part of the desk blocked. It had blinds in it, but they were down. The room had no lighting. There was also the observer in the room, but I did not think I was allowed to interact with her. If anything, she made me a little self-conscience, but I did my best to ignore her presence altogether.
I started to pick up the silverware, before realizing it would be easier to carry if I stacked the bowls and then put the silverware in them. After I had all that in hand, I suddenly realized that I did not know where to take them once I cleared the table. Deciding the desk was the only logical location, I set them down there before trying to fold socks I could not find at first. I noticed the basket of neatly folded towels on the bed. In my mind, it made sense that the socks must be with the towels in the basket or near the basket. After all, I did not see any drawers to put them in through my distorted vision. Managing to find a couple of socks near the basket, I realized that this was not going to be such an easy task. For one thing, the gloves made it difficult to match socks quickly.
Five of the pairs were dark, and they blended in with the bedspread. I managed to match two pairs before realizing I did not have enough socks and had to find the rest. I decided to shake out a couple of towels, but no luck. Folding socks was the only other task that I remembered, and I was determined to complete it. I started moving the towels out of the basket, though I decided not to make a mess unfolding them all. How likely is it that a sock would get tangled in a folded towel? I did, however, find three socks at the bottom of the basket once I removed the towels. At some point, a slamming door in my ear made me jump even though I managed to tune out the rest of the cacophony enough think clearly. I matched a couple more socks before having to count them again to see how many pairs I had matched so far. Five. I needed one more pair, and I only had one white sock. Plus, I was not sure I matched the pairs exactly.
I decided to focus on finding that last sock first. No luck. I looked beneath the bedspread, put the towels back in the basket to see if I missed anymore under them, looked in the desk drawer, and felt around like an entirely blind woman to see if there were more drawers on the desk that I could not see before finally giving up. It was while looking in the desk drawer and around it that I first noticed the discomfort in my shoes. I chose to ignore it. I deal with that nearly every day anyway and have to ignore it when it happens, so that was almost second nature to me. Instead, I continued searching for the sock. In the process, I nearly knocked a glass of water on the desk over. I did not see it when I set the bowls there, so I had no idea it was even there in the first place, let alone filled. I saw the pitcher too and briefly contemplated whether or not I should take a sip of the water. Ultimately, I decided I might forget the socks if I kept getting distracted. I moved the bedding around a little more and briefly contemplated looking out the window when I caught a glimpse of light through the blinds. The pattern on the wall hanging was also distracting somewhat. Feeling like I was just making a mess, I ultimately gave up my search. It was frustrating to know that a little white sock was probably just blending in with its current surroundings.
I decided to look at the clothing rack, unsure of what to do next to pass the time. Up close, I discovered there was a shelf above the rack of clothes containing plates, some silverware, and what appeared to be cups. Aha! I grabbed the bowels off the desk to set on top of the plates. The silverware was a little more challenging because I noticed something did not feel quite right. It took me a second to figure out I had a couple of pens in my hand instead of knives. I managed to leave them at the desk, though.
After that, I had no idea what to do. I remembered that Cheryl was supposed to put on a white sweater, so I thought maybe I should put something on too. The only thing I knew for certain - do not put on the white sweater. While trying to figure out what the clothes on the rack were exactly, I noticed a face in the mirror. It was very disconcerting, enough to cause me to do a double-take. Imagine seeing a ghost-like image in the mirror. I realized it was the face of an elderly woman, but I looked closer just the same and almost touched it, wondering if it was supposed to be me. I did not dwell on that thought long, though, instead choosing a black sweater. Putting it on while wearing gloves was not so easy. Plus, my hair ended up caught underneath, and I had difficulty pulling it out. I am pretty sure I messed up my hair, which was down and is nearly to my waist. I felt as if I must have looked like I just woke up and threw on some clothes without brushing my hair, like throwing on a robe over pajamas when first waking up. At that point, I had no idea what to do next. Thankfully, my time was up before I could contemplate that thought further.
Our Observer's Observations
The observer was there to observe the behaviors we exhibited while completing our time in the room. She watched to see how many tasks we completed, noted if we needed reinforcement, had negative thoughts, subvocalized, asked for help, exhibited strange behavior, followed others around, did someone else's tasks, wandered, or hoarded objects. Though Cheryl said she did not recall doing it, she was observed using subvocalization, meaning she either spoke to herself or made some kind of verbal noises. Neither one of us asked for help or addressed the observer, but only because we assumed we would not receive any unless there were some safety issue involved. Both of us exhibited wandering characteristics. And I did one of her tasks because I could not remember what my own were. I did not hoard, but in retrospect, I easily could have. I had all of the bowls in my hand before realizing I did not know where to put them. I also thought about piling things in one corner of the bed to find the missing sock.
To better interpret the observations, it might help to understand what exactly the observer was looking for. Understanding also makes dealing with patient behavior a little easier.
The point of having participants complete a list of tasks is to provide a greater understanding of the pressure caregivers tend to place on dementia patients. Had we not had all the other challenges, we probably would have easily remembered most of the tasks and been able to complete them without a struggle. However, dementia patients are often expected to complete them as a person without challenges and caregivers become impatient when having to repeat themselves. They can also become upset when things are not done properly or at all. They need to understand it is not intentional.
Some participants do require help or assistance from the observer, even if it is just verbal reassurance that everything is okay. A little encouragement goes a long way when someone is discouraged. And positive statements reduce the anxiety levels, especially of patients suffering from depression as well.
When people are particularly sad or vulnerable negative statements and thoughts are often a sign that dementia patients are depressed as a result of what is happening to them. Negative thoughts are also common when feeling overwhelmed.
Subvocalization means that a person is talking to themselves, or verbalizing thoughts out loud. It can also include something like humming to oneself or making other vocal noises. The sound of one's voice can be comforting. It is best to allow dementia patients to soothe themselves in this manner if need be.
Asking for Help
Asking for assistance seems logical if someone is confused or otherwise needs assistance. But many people do not seek help out of fear or because they are uncomfortable asking. Many people with dementia need the extra help, but they do not receive it because people grow impatient with their neediness as if they simply are not paying attention to what was required.
It is hard to understand why people do certain things, but at the time, it makes perfect sense to the one doing it. Unless the patient or someone else is in danger, the behavior should be allowed. Also, do not laugh, ridicule, or berate a patient for their odd behaviors. Redirect it to other more appropriate ways without acting as if they are out of line.
Following others around usually happens out of uncertainty. It is natural to look for someone else who appears to know what to do. Caregivers should not be offended if a patient is following them around. Mimicry is a compliment. They trust that you know what you are doing.
Wandering is a behavior most people are aware of doing. It happens because they are looking for familiarity, especially when already confused and lost. It also happens when looking for something the patient is urgently trying to locate. It can occur in a home, wandering around a room or from room to room. It does not always mean a patient is wandering in public. As long as it is safe, it is okay to allow it.
Hoarding is an attempt to control the environment around the patient. Some examples of things that patients might hoard are washcloths or paper towels. ( Or, in my case, I almost accumulated all of the clothing in one place an effort to find just one sock.) Taking away the hoarded items takes away the illusion of control, and it usually causes unnecessary outbursts. If an object must be removed for some reason, provide a replacement.
The list on the wall of our tasks was abnormal in appearance. The words were different sizes and not even in the correct order. There were even some missing words in the instructions. Had we remembered it was there, it would have been tough to read and then decipher through our already muddled vision and thoughts.
Things to Remember When Caring for a Dementia Patient
- Allow plenty of time to complete tasks. It truly is difficult.
- Distractions make it harder to concentrate and allow for even more forgetfulness. Cut down on them as much as possible. For instance, do not leave a television playing in the background. Even a crowded room can be distracting when several conversations are happening at once, among other things.
- Socializing helps to prevent cognitive deterioration. Because of what is happening, it can be easier to retreat socially rather than risk feeling awkward or out of place. Doing so causes deeper depression and faster cognitive decline.
- Allow a patient to do the same task over and over again. It is comforting and creates a feeling of safety, perhaps normalcy. It is similar to tour participants searching with steadfast determination for something she or is convinced must be located.
- Strange behaviors are coping mechanisms, as are most others for that matter. Treat them as such. To fix the behavior, a caregiver must first figure out why the patient is doing it. Agitation may be a sign of needing something. That something could be anything from medication to a less noisy environment.
- Focus on all of the things the patient can do instead of what they cannot. Always do your best to remain positive. Agitation and negativity will only increase unwanted outbursts and behaviors that are harder to deal with in the long run. It also helps the caregiver cope emotionally.
- Three positive actions dementia patients need from others are reinforcements, encouragement, and reassurance. These things help prevent social withdraw and isolation that often leads to depression.
- Taking care of a dementia patient is one of the most emotionally taxing jobs a caregiver can have. In many ways, it is harder than caring for other types of chronic diseases. A caregiver must always remember to take care of himself or herself, too, or the situation will become harder for everyone involved.
A News Segment About Virtual Dementia Tours
Would you be interested in taking a virtual dementia tour?
How Can You Participate in a Virtual Dementia Tour?
Created by Second Wind Dreams, The Virtual Dementia Tour is a non-profit organization dedicated to improving the care and quality of life of both dementia patients and their caregivers. To take the tour yourself, you can visit their website at secondwind.org, or you can contact local home care and nursing home facilities in your local area offering the service. They usually have scheduled public event days. And they provide it on demand as well. Simply call around to schedule an appointment with a facility trained to give it. They might even come to your home or business to set up a tour.
After you take your tour, you can donate to the Second Wind Dreams program. It is a program similar to the Make a Wish Foundation's granting of wishes to children, except that it is for seniors. Many facilities will also donate something to the program for every person who takes the tour. It is a win-win situation for everybody. Learn how to be a better caregiver, spread more awareness about the disease, and help someone have a special once in a lifetime wish granted.