Through Their Eyes
Virtual tour shows what it’s really like to live with dementia
While many people know a friend or family member who has gone through Alzheimer’s Disease or a different kind of dementia, it is impossible to know what life is really like for those affected. This week, the Alzheimer’s Association in Poughkeepsie hoped to take steps to change that.
This Wednesday, they hosted a Virtual Dementia Tour at the Adelphi University School of Social Work. As someone with a grandfather who passed away of Alzheimer’s and a grandmother currently suffering from dementia, I had a particular interest in this experience. So, I signed up.
But first, let’s get a few clarifications out of the way. Dementia, according to Joan Carl, a director of community engagement for the Alzheimer’s Association, is an umbrella term used to describe all forms of cognitive deterioration. Alzheimer’s Disease is a specific diagnosis, with more than five million Americans currently living with the disease. It is also the sixth leading cause of death in the U.S. according to the Association. But let’s get back to the virtual tour.
After signing a few disclaimer forms, I was instructed to place textured inserts in my shoes, and to put on large bulky gloves and goggles. Now, reading this you may be thinking, wait a minute — isn’t dementia something that affects only the mind? Aren’t there no physical symptoms?
Not true, says Janet Syvertsen, senior director of outreach and community engagement for the Alzheimer’s Institute. Alzheimer’s can cause neuropathy in the feet and hands — causing weakness and pain. Thus, the gloves and the shoe inserts. The disease can also affect your vision, hence the goggles which severely impaired my vision.
The final step was a pair of headphones connected to a small mp3 player, which was used to give me instructions and lead me through the tour. I was told to fill out a small pre-test, which asked questions like whether I believed I accurately understood the experiences of those with dementia, and whether they received accurate care. Now, it was time for the real tour to begin.
Andy Standard, another staff member with the Institute, led me into a room while I was told through the headphones about tasks I needed to complete. These were normal everyday tasks, such as setting a table and pouring a glass of water. However, these instructions were a bit hard to hear, and only said once before distracting noise poured into the headphones. Street noise, phone conversations and radio chatter filled my brain, making it difficult to remember or concentrate on the instructions. For example, I was instructed to finish an incomplete drawing, but thought I was supposed to trace it instead.
The reason for this, according to Syvertsen, was that individuals with dementia have trouble filtering out noise. This combined with the memory loss and other symptoms cause great distress and trouble completing the tasks like I was attempting to do.
The physical limitations made tasks difficult as well- I was told to put towels on a bed, but couldn’t see a bed so I put them on a table instead, thinking maybe for the purposes of the demonstration one of the tables was supposed to be a bed. It wasn’t until later that I finally noticed the bed in the corner and was able to put the towels in the right spot. When I poured a glass of water, I couldn’t tell how much I had poured.
The biggest shocker came when the tour ended and I took off the goggles and headphones. I discovered that there was a list posted on the wall, with the list of tasks I needed to complete written in large letters! I hadn’t even noticed it.
Following the tour I took another test with the same questions as the initial pre-test. Needless to say, some of my answers changed. Talking to Carl and Syvertsen, I was not the only one to feel this way. They reported one participant, an aid who took care of dementia patients, making the mistake of putting the towels under the bed instead of on it. She was humiliated and said, “This is horrific.”
There are two versions of the tour that exist — one for families and caregivers (the one I went through) and one for professionals. These tours are being held in multiple other counties throughout the coming weeks, and will be done again next year. Their purpose is to educate participants on the struggles people with dementia go through, and show that they shouldn’t be blamed or laughed at for not being able to do normal things.
Kylie Balogh, a social work student who is completing her senior year fieldwork with the Alzheimer’s Association, said this:
“The virtual dementia tour is a way for caregivers to understand what their loved one is going through. It’s an amazing way to see the world from a different perspective.”
The Association offers many services to patients with the disease as well as their families and caregivers, all of which are free according to Carl. With such a significant portion of the population affected by dementia, there is much work to be done.
“Every 66 seconds, someone in the United States is diagnosed with Alzheimer’s,” said Syvertsen. The disease is expected to significantly impact Baby Boomers, with 37% of people in that generation predicted to contract the disease at some point. In addition to many other areas, dementia has significant economic impact. In 2016, dementia will cost the country $236 billion in total, and in 2015 caregivers put in 18.1 billion hours of unpaid care.
When it comes to prevention, Syvertsen and Carl stated that there are many things one can do to keep the brain healthy. One way is to maintain a healthy diet and regular exercise — just simple things such as taking a walk with a friend. There are also mental exercises to keep the brain active, recommending even deep conversations. This can help to activate those crucial parts of the brain and preserve cognitive function.
We can never really know what it is like to live inside the head of someone with dementia. With the virtual tour, though, we might gain some empathy and understanding, and that can only help us.