Update on Virtual Dementia Tour

Just a couple of days ago I wrote about the virtual dementia tour and the resulting blog post by attorney John Roberts.  This "tour" is designed to replicate what a person with dimenished capacity may experience.  Now, there is an ABC News video aobut this experience.  You can find it here:  http://abcnews.go.com/Nightline/video/virtual-dementia-tour-families-understanding-alzheimers-disease-11226182

I hope this helps you get a sense for what some of our elderly loved ones with some form of dementia may be experiencing.

Virtual Dementia

The following post has been copied, with permission, from attorney, John Roberts, who practice in Longmeadow, Massachusetts.  His original post is located here.

When I read this I thought that this was a great idea that would allow others to experience the sensations and emotions experienced by a person with diminished capacity, perhaps even Alzheimbers’ disease.  This type of “tour” might allow more empathy from loved ones and caregivers.  Here is Mr. Roberts post:

In July, I took a ten minute Virtual Dementia Tour that opened my mind and heart to the emotions that might be experienced by a person who has diminished capacity.

Have you have ever taken a guided tour that provides a cassette tape, illustrated book, or a live tour guide who directs your attention and helps you understand a new or unfamiliar place? The dementia tour is just the opposite.

The dementia tour used props and devices that made it difficult or impossible for me to walk and do simple tasks.

The tour began as the tour guide placed headphones over my ears. I did not hear the clear and confident voice of a tour guide. Instead, the headphones played distracting bits of conversations, sirens and noises, to simulate the mental confusion that goes with inability to process and sort out sounds and voices.

To simulate macular degeneration and loss of vision, my eyes were covered with yellow tinted goggles that has a solid black focal point that obscured the center of my field of vision.

The tour guide had me take off my shoes and insert plastic sheets with prickly spokes, to simulate neuropathy and loss of feeling in me feet.

The tour guide put thick plastic gloves with bumpy spikes on both of my hands, taking away my sense of touch, and any dexterity that I may have had.

These artificial impairments set me up for the indignity of dementia, and the very serious emotions that a person with diminished capacity has to deal with every day:

CONSTANT IRRITATION: I felt annoyed that my hearing and vision was being interfered with. Why couldn’t I see the full field of vision, and what I could see was obscured through a yellow filmy haze? But this was only the beginning.

ANGER: The tour guide gave me quick instructions of what I was supposed to do next: fold up a pair of socks, straighten up my dinner plate, brush my teeth, and several other tasks that I couldn’t hear through the cacophony that was pouring into my head from the earphones. Why wouldn’t she speak more clearly? I asked her to repeat the instructions, but she was too busy, and sent me into the assisted living room to begin my day.

FEAR: I can only imagine the panic I would be feeling if this demonstration was the real thing. Someone who should know and understand my needs has just taken ten seconds telling me what to do, and pushed me away.

FRUSTRATION: I fumbled with the pair of socks, and tried to remember what tasks the tour guide told me to do. How am I supposed to get through this if no one will help me? There is a sitter in the room, watching me to make sure that I don’t trip and fall and hurt myself. I ask her to help me remember what to do next. Without looking up from whatever she is reading, she just tells me “do the best you can.”

SADNESS: I know I could do some of the tasks, if only someone would prompt me, or give me just a little bit of time or attention. But no one does. I am alone in this semi darkness.

After 5 or 10 minutes of futility, the tour is over. I have a small understanding of the emotions experienced by the person with dementia, and a much greater understanding of the importance of our responses to the need for care. Joanne Koenig Coste wrote about this need for understanding in Learning to Speak Alzheimer’s. The Alzheimer’s Association has a booklet on activities at home that explains how to approach the person with diminished capacity. Psychologists and other experts have explained how to avoid the need for antipsychotic drugs that are often prescribed when the frustration, fear and sadness leads to erratic behavior. Links to all these resources are available here.

More information from attorney Roberts can be found here.

I will be talking to my local hospital and others about this and seeing if perhaps they could offer something similar.  I really think this could help family members and caregivers have a better understanding of what our loved ones who suffer from dementia experience.

Ethical Considerations in Dementia

I am currently attending the Advanced Elder Law Institute in Indianapolis.  This is a two-day continuing education seminar with a variety of speakers on various elder law related topics.  Currently, Dr. Patrick Healey, a physician at the St. Vincent Center for Health and Aging, is presenting on ethical considerations for patients with dementia.  He stated that in these cases there are often no "black & white" answers.  Dementia is not the disease, but rather the symptom.  There are a number of diseases where memory loss and confusion may be the symptom.  However, 60% of people with dementia have Alzheimer's disease, according to Dr. Healy.

Dr. Healy also stated that 60% to 80% of nursing home patients have some form of dementia and over five-million people over the age of 65 have some form of dementia.  He believes early diagnosis is very important which can allow the patient to get some treatment that may help him or her, there can be help put in place to protect the safety of the patient and others, and appropriate legal planning can be put in place before the person's mental capacity is severely affected.  He relies a lot on what family members and loved ones notice about the patient and often times the first indication of problems exhibit themselves as a change in behavior.  He encourages those loved ones to provide, in writing, a list of their concerns and the changes in behavior that they have noticed.

Dr. Healy also offered tips on dealing with persons with dementia and issues surrounding caregivers.  Caregivers need to recognize the need for help and he has seen all too often when caregivers may work themselves into the ground by trying to provide all the care without any respite relief or other help.  Obviously this is not good for the caregiver nor their loved one.

The bottom line is that if you suspect a family member or loved one may have some form of dementia you should put your concerns in writing to your loved one's doctor and try to get an assessment performed.  Early diagnosis is key to helping your loved one.  Of course, the apropriate legal planning should be done as well to avoid court guardianship matters and putting in place advanced medical directives as well as other planning steps that may be appropriate.


Attendance at Elder Law Institute

I am currently attending a two-day Elder Law Institute in Indianapolis, Indiana.  The speakers are covering a wide variety of elder law issues and laws.  One of the speakers was Rich Adams.  Mr. Adams works at the Indiana Family and Social Services Administration and was able to discuss how the FSSA is working to improve the Medicaid application process.  His presentation helped us better understand how the state of Indiana handles Medicaid applications and the inner workings of the FSSA.

Another presenter was a doctor who discussed end of life decisions and the role of the patient's doctor.  His presentation was insightful and added credence to the idea of how limited living wills are in practice.  Many of the terms used in the Indiana living will statute are undefined and difficult in practice for the medical profession to handle.  The main take away from his presentation was that there needs to be a conversation between the client and the medical decision maker.

More to come later.