Anyone who cares for someone with Alzheimer’s or another form of dementia knows that it can be a challenging experience. As the disease progresses, the symptoms can include aggression, wandering, and agitation.
Changes in the personality of the person with the disease can be a major source of distress both to the person with the symptoms and to those who are exposed to them – including caregivers and family members.
Ever wonder what those with Alzheimer’s or other forms of dementia are really going through? Even though we can never really experience their lives, it’s certainly helpful to understand what it’s like to live with a neurodegenerative disease.
Experience Alzheimer’s for Five Minutes to See What It’s Like
ABC News recently interviewed Blaine, a Texas man who cares for his mother with Alzheimer’s. Blaine and Cynthia, the ABC reporter, participated in an experiment to experience what it’s like to have Alzheimer’s. Blaine and Cynthia were suited up in special equipment to simulate old age and Alzheimer’s symptoms. Then, they were asked to do simple household tasks.
Both Blaine and Cynthia had an extremely hard time with the simple tasks and quickly got confused, frustrated, and angry. From the beginning, Cynthia started yelling, talking to herself, and slamming things around. Neither of them finished any tasks. They quickly got distracted or just gave up.
Cynthia and Blaine were understandably shaken up by their visit to Alzheimer’s-land. When the experiment was over, Blaine exclaimed, “Damn! I couldn’t do anything!” He talked about how he felt panicky and said, “If I had to go through very much of that, I’d just might go crazy.” Cynthia said, “The thing that shocked me the most was that I couldn’t remember simple instructions.”
What Is Involved in The Virtual Dementia Tour?
The Virtual Dementia Tour (VDT) is an evidence-based and scientifically proven method of building a greater understanding of Alzheimer’s and other forms of dementia. The VDT uses sensory tools and instruction based on research conducted by P.K. Beville, a specialist in geriatrics and the founder of Second Wind Dreams. Here’s how it works:
- During a Virtual Dementia Tour experience, trained facilitators guide participants outfitted with patented devices that alter their senses while they try to complete common everyday tasks and exercises.
- The facilitator gives the participant special dark glasses, headphones, a big, awkward glove for their dominant hand and a less awkward glove for the nondominant hand, and thorny insoles for the feet.
- They put into the participant’s pocket a small device containing the soundtrack for the headphones, and the participant then walks a short distance to the room.
- The headset feeds the participant a constant cacophony of background noise — radio announcer, static, other people’s conversations, a loudly ringing phone, a distant siren.
- The glasses are supposed to simulate macular degeneration. The headset creates typical background noise of an assisted living facility, but also random noise generated by a dying brain, which “contributes to an inability to distinguish between sounds we are meant to pay attention to (such as a tea kettle whistling) and sounds we need not heed (another resident’s phone ringing).” The awkward glove affects dexterity and coordination.
- The participants are then guided by the arm, and they can only see through the top of the dark glasses. According to one participant, “every single step hurt. I wanted to sit down right there and take out the thorny insoles. So quickly, I was ready to surrender.”
- The room the participant is led to is underlit, cluttered, and claustrophobic. Someone else who is experiencing the same thing is also bumbling about the limited space. In one corner, a man sat in a chair, taking notes. The guide fires off a list of instructions, but they were nearly impossible for participants to focus on and remember.
- Instructions included finding a jacket and putting it on, but it was incredibly challenging with the gloved hand. Another instruction involved setting a too-small table for four and putting batteries in a flashlight, but there was no flashlight. Distracting noises continued to play in the headphones.
- Common responses to the experience include paranoia, frustration, feelings of defeat, and anger. In one instance, the tour guide noted that the participant was “mumbling to herself, talking very loudly, and appearing very uncomfortable.”
- The Virtual Dementia Tour enables family members and caregivers to experience for themselves the physical and mental challenges those with dementia face and use the experience to provide better person-centered care.
Having a Better Understanding of What a Loved One Is Going Through
Over 3 million people in 20 countries have experienced the Virtual Dementia Tour, which is highly rated for giving loved ones and caregivers a true experience of what having dementia is really like. The tour is helpful because having a better understanding of what your loved one is going through might help you be more patient, empathetic, and understanding when he or she frustrates you with certain behaviors or can’t perform even the simplest tasks.
Everyone is different, so of course not every Alzheimer’s or dementia patient experiences the same thing. But this is a way for us to get an idea of what life might be like for them.
Caring for a Loved One with Dementia
For those of us who are caregivers of someone with dementia, you are aware that your loved one needs help with everyday tasks. In the early stages of dementia, most people are able to enjoy their life as they did before their diagnosis. But over time, symptoms get worse, and they tend to get more forgetful, distressed, and confused, meaning they require more care.
As time progresses, dementia can affect the person’s personality, their ability to perform activities of daily living by themselves, and how they communicate. The best way of not causing further distress to the person with dementia is to adjust to their reality. Caring for a loved one with dementia becomes a 24/7 job, and every day is different. As a caregiver, it’s important to be flexible and patient because something that worked today may not work tomorrow. One day a person with the disease can have a very good day where they’re able to manage, and the next day they’re not.
Plan Ahead to Take Care of Yourself and Your Loved Ones
As you are finding the best ways to understand, empathize, and care for your loved one with dementia, one of the greatest ways to gain peace of mind comes with planning for your future and for your loved ones. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. If you or a family member has received a diagnosis of dementia, it is highly recommended that you update your estate planning documents as soon as possible, giving strong consideration to creating a long-term care plan that includes an asset protection trust such as our Living Trust Plus® to protect your assets from probate PLUS lawsuits PLUS the potentially devastating expenses of assisted living or nursing home care that may be required toward the end of the dementia journey. Please call us to make an appointment for your initial consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
