I immersed myself for 15 minutes in using a new kit called the “Virtual Dementia Tour”. Ok, so it was just a simulation and only for 15 minutes, but it totally changed my perception of dementia. In fact, I can’t get the experience out of my mind. I believe that’s a good thing!
My readers know I often write about dementia. As I noted in my last post, less than 1 in 200 persons at age 85 remain dementia-free. That means most of us caring for aging parents and relatives will certainly encounter this disease. I have read lots of articles on the subject. I can list the symptoms and know what a caregiver should do. And, I consider myself a pretty empathetic person.
However… using this kit was a BIG wake-up call for me! Let me share my experience with you.
What’s in the kit?
- An information booklet explaining the Virtual Dementia Tour. Also, after the tour, users are directed to a section describing the intention of the experience and helpful recommendations for caregivers.
- Goggles. These simulate the eyes of the elderly with macular degeneration and aging problems. As soon as I put them on, I tried to focus…with no success!
- Gloves that reminded me of garden gloves. They simulate arthritis and diminished motor skills.
- Vinyl shoe inserts. This was the worse part for me. As soon as I put the soles in my shoes, my feet hurt the whole time, standing or walking. But, they helped me understand what neuropathy feels like!
- The CD for the virtual tour, emulating the hearing of those with dementia. It is well-designed and most effective!
What is the process?
- I found my portable CD player and good headphones.
- The CD advises you have a person nearby to watch you. My husband agreed to do this. He said it was really weird watching me. He was not allowed to talk to me during the tour. And, so I ended up talking to myself as I “entered the confusion state”.
- I started the CD and took the “Before” test of several questions, rating how I felt about myself and also my perception of someone with dementia.
- Then as I was instructed to, I put in the shoe inserts, and put on the googles and gloves.
- Then the Dementia Tour began. Immediately I heard a cacophony of sounds. I knew I was supposed to hear instructions but it was almost impossible. I had to do simple tasks but with all the noise, I had a lot of trouble remembering the consecutive instructions. I didn’t do any of the tasks very well! Once I did them, I had to wait a lot…seemed like a long time. Then suddenly there would be a very loud siren and other disruptive sounds. The tour seemed a lot longer than 15 minutes.
- After the tour ended, I was incredibly relieved to stop the noise and take out the inserts!
- The “After” test of the same “Before” test questions was given. By this time, I was feeling tired, off-balance and disoriented.
What did I learn?
- First of all, let me say again, I still can’t get the experience out of my mind. I thought about the people at the nursing home I volunteer at. I’m used to seeing all the outward signs of dementia but I had never been able to know what they were experiencing. I know this was only simulated but it helped put me in their shoes, if only for 15 minutes.
- I found out it takes a lot of time to do a simple task and why we need to give simple requests, one at a time.
- I found out that being bombarded with noise and stimuli is very tiring and made me inpatient.
- I found out my reality (in the simulation) was far different from a normal person’s. Every one of my senses was impacted.
- My husband and I found the “General Recommendations” at the end of the Information Booklet to be quite helpful. We have a dear cousin who was just moved to an Alzheimer’s nursing home. We talked through the points with our cousin in mind.
Who could benefit from using this Individual/Family Virtual Dementia Tour kit?
- Family members of someone with dementia. The kit has 2 sets of instructions so husband and wife could go through different scenarios.
- Adult children with aging parents. Chances are a parent or close relative has or will have dementia.
- Caregivers for the aged.
Having been through this simulation, I can honestly say there is no article, no book, no checklist, no instructional course that I could ever take that would prepare me like this experience did. I do not look at the elderly the same now. Most importantly, I understand “why” it’s so very important to give those with dementia extra time, lots of patience and calm, and a positive and loving attitude. Meet them where they are!
Would I recommend it to others? Absolutely!
(To learn more about the kit and its author, P.K. Beville, go to http://secondwind.org/ )
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It takes real courage to walk in the shoes of someone with Dementia. Alzheimer’s Disease or dementia are the second most feared in the US, second only to Cancer. Since AD is diagnosed every 72 seconds today, just think of the numbers of families impacted at the same time. These numbers are growing at astronomical rates. WE just aren’t prepared.
Walking in their shoes, will help prepare for the future. Group Virtual Dementia Tour kits are available for Hospitals, Nursing Homes, etc. and the individual kit for family use.
Dale, thanks for having the courage to walk in their shoes and face this crisis head on.
P.K. Beville, Author of the Virtual Dementia Tour
Wow, this is absolutely fascinating. I had no idea something like this was out there. My grandfather suffered from Alzheimer’s Disease for 6 years. I can’t even imagine going through what he experienced, it might be difficult to actually know, but kudos to you for stepping in their shoes & finding out firsthand. I certainly think it’s something all caregivers should do.
Thanks again for this wonderful & eye-opening article, here’s another good article to check out with some helpful safety tips for those caring for seniors with dementia.
http://home-care-phoenix.carebuzz.com/alzheimers-safety-tips/
Hope it’s helpful!
Best,
Tuesday
Answers to your CD I have not looked at yet.
“I thought about the people at the nursing home I volunteer at. I’m used to seeing all the outward signs of dementia but I had never been able to know what they were experiencing.”
My question would be, how does the person or people know what an Alzheimer’s/Dementia victim goes through. What they hear, see, feel? Did this come from an Alzheimer’s victim? Or is this just speculation?
“I found out that being bombarded with noise and stimuli is very tiring and made me inpatient.
Again, this could be for anyone who has a nervous disorder, or anxiety. Why would we think this would be an Alzheimer victim?
“Every one of my senses was impacted.”
I’ve found caregiving for fourteen years, working in Adult day care, assisted living facility, I did try to put myself in the place of a person with dementia/Alzheimer’s. The friend I cared for was diagnosed at 64 years young, two years later couldn’t speak my language (English), but in her own language, unknown to me. Her sense of feeling was gone. She did not feel it when she cut herself accidentally, it was I who saw the blood. She could hear, but couldn’t respond, because of her loss of speech. As far as I know she could not smell, especially when I’d see feces underneath her fingernails after trying to wipe herself. As the years went by, I’m sure she lost her sight for her eyes became cloudy, but I’m sure she saw things I did not see. Sometimes I thought she saw others in our home or something, that was not there, for she yelled at it ‘them’.
Thank you,
Rose Lamatt author of ‘Just a Word’ friends encounter Alzheimer’s
WOW! What an awesome tool! I will definitely be passing this info on whenever I can. Thanks so much for writing about it AND doing it!
Rose,
Thank you for your good questions. The author of the kit, PK Beville, will be commenting soon with answers to your questions.
Thank you, Dale…
I am so excited about Rose asking such great questions about the VDT. I will address them one by one but if I miss anything, please don’t hesitate to blog back.
How do we know what a person with AD or Dementia is going through? Of course, we can’t be spot on with what they are going through and everyone is different in how they respond to the losses but we sure can get as close to it as possible so that we can try to better understand and help them.
The items used in the VDT are based on 2 studies I conducted, about sensitizing people to dementia and has been peer reviewed with strong reliability and validity. Believe me, it has been through many generations and there are likely many more to come as we continue to learn .
For the physical sensations that are impaired, I looked at the most common impairments associated with aging. I felt this was important as a way to really get a sense of what the elder is going through on top of the confusion associated with the disease. You had mentioned a woman you cared for that didn’t realize she had cut her hand and you had to assist. This is due to a loss of the brains ability to interpret pain and why we use special gloves in the VDT to mimic that loss.
I have spent 26 years working with and assisting families, elder care communities and specifically with the cognitively impaired. I have conducted numerous evaluations and learned a great deal about how their brains work and what seems to be most difficult to them. I then researched and interviewed other professionals in my field to get as close to what seems to be going on with AD and Dementia.
The confusion tape “noise” along with the tasks, replicate what I have been told from early stage sufferers and researching the areas of the brain that are affected. The main result is that I created a situation where the person going through the VDT is unable to weed out revelant vs. irrelevant stimuli. This is a common problem with this horrible disease and helps explain how tough it is for them to follow a conversation, react to questions, and carry out a task completely.
You mentioned the loss of smell in one of your elders. This is very common in this disease, but I have yet to figure out how to replicate it for the VDT. It is an important point though becasue as you point out, it can really place the elder in danger from fire or bad food. I’m always open to suggestions.
I hope I have offered some insight. We really need more people like you working in this field. You care very deeply.
PK, author, VDT
My mother has been diagnosed with Dementia. My father (her husband) can’t quite grasp it and he is trying to ignore it making it look like its a temporary condition and part of aging. My mother has been lost numerous times and the last episode was just on Sunday where she was gone for 15 hours, spending the entire night on the streets. Luckily she was found safe and alive. She has also been located on the center divider of the freeway. I am trying to locate a tracking system as well as a bracelet for her to wear. I am also trying to understand this disease well myself and of course my sister and I have taken my mother into our care, where we understand the disease and her condition better than my father.
Anne,
Thank you for writing. I am so sorry to hear about your mother lost outside. That must have been very frightening for all of you. I am working to get answers to your questions. I have asked a geriatric clinician I know about the tracking system and also how you can best educate and prepare yourself to help your mother now and in the future.
Your parents are fortunate to have you and your sister working together to care for them. Take care, Dale…
Anne,
Hi, my name is Jason Young. I am a geriatric clinician working at a geriatric psychiatric unit within a hospital. I have provided treatment to people with Alzheimer’s disease for 10 years now. I am so glad that Dale contacted me and asked if I could be of any assistance to you. I don’t think I can be of help with your finding a tracking system, though I feel I could be a great resource in your learning more about the disease and how to cope. I maintain a personal blog at this address: http://jasonyoung99.wordpress.com/ . I post topics and links related to many of the things that you are dealing with. Please take a look and also feel free to contact me at my email address: jason.young99@yahoo.com with any questions. Thank goodness your mother is safe.
Anne,
In response to your request about tracking system and bracelet, I’d like to suggest you look at the tracking system highlighted on the Alzheimer’s website, http://www.alz.org/we_can_help_medicalert_safereturn.asp
“When a person with dementia wanders or becomes lost, one call immediately activates a community support network to help reunite the lost person with his or her caregiver.”
Also, be sure to check out the rest of this official Alzheimer’s website. It has a wealth of information for caregivers.
I’m fascinated by the information you provided and think the kit should probably be required for orientation for every person working in a nursing home and/or assisted living facility. I have dealt with my mother’s dementia for many years and started writing about it recently, but I had never heard of a kit like you have described. Thank you very much for the information.
Thanks for your comment. Actually “experiencing” the symptoms of dementia is so very powerful.
It is truly walking in the shoes of one with dementia. I agree, this simulation should be a part of the required training in dementia.
Best wishes to you and your mother in 2010! Dale…