Have you ever wondered what goes through the mind of someone who just has been diagnosed with a dementia related disease? As I have pondered this through the years, I also have asked many people who have been living with the symptoms; 99.9 percent of them say fear is the first thing that grips their hearts.
Another sad but common scenario is that they hurry to the doctor, expecting some much needed help, but instead their doctor writes them a prescription and sends them on their way. The last thing they hear as they are escorted out the door is, “See you in six months.”
A medical professional displaying such a blasé attitude is unforgivable! More often than not, absolutely no information was handed to these frightened people. Many have told me they went home and cried for weeks.
The reality is this: These people just were given a terminal diagnosis and then abruptly shown the door. In today’s world of online search engines, it’s likely most of these people went home and Googled whatever disease they were told they have. Unfortunately, what pops up is a list of frightening symptoms and what the end stages will be like. This only serves to make these people want to lock their front doors, hide beneath the bed and wait for the disease to come and take them.
Good news! Beginning today — June 1 — there is help for the newly diagnosed. An international coalition of people living well with dementia has created a website called dementiamentors.com. The website was built strictly to assist people with dementia. The truly unique characteristic is that it is designed and built by individuals fighting the same ailment.
At Dementia Mentors, a person can speak live, one-on-one, with another person who has the same symptoms. All they need is a computer with a webcam. By clicking the correct link they will be able to do this from the comfort of their own home.
All mentoring sessions will be strictly confidential. Creators of the website want people with dementia to feel comfortable asking any question they’d like.
There is also a page on the website containing several three-minute empowering videos designed by the mentors to explain how to “rule your disease.” These videos are, without question, amazing! I would recommend that caregivers watch them as well, for there truly is so much we can learn from these people.
Another main goal is to keep those diagnosed with dementia socially engaged for as long as possible. There will be “virtual memory cafés” which are live social gatherings done through the website only for those with dementia. These meetings are a place where symptoms can be discussed openly and safely, or people just can talk about the weather. No one judges. The important thing is that while this communication takes place among people who are in the same boat, no one will be sinking in a lone boat of their own.
We know from experience that after receiving this devastating diagnosis most everyone will, understandably, suffer a bout of depression. (I mean, how could you not?) I believe that one of the most important aspects of this project is that it will help stop people from lingering there too long. The first couple of years spent fighting these diseases are crucial. This is where we have to set them on the right track.
Who better to show someone how to keep dementia at bay than someone who has been there and is experiencing it themselves? You are not going to get information like this from a doctor’s office, I promise you that.
For a decade Gary Joseph LeBlanc was the primary caregiver of his father, after his father was diagnosed with Alzheimer’s disease. He can be reached at firstname.lastname@example.org. His newly released book “Managing Alzheimer’s and Dementia Behaviors,” and his other books “While I Still Can” and an expanded edition of “Staying Afloat in a Sea of Forgetfullness,” can be found at www.commonsensecaregiving.com.