This post and information was graciously provided by Ann Napoletan. The article originally appeared on The Long and Winding Road.
Where there’s hope, there’s life. –Norman McNamara
Many of us have had a mentor at one time or another during our lives. They guide us, offer words of wisdom, and provide feedback on our ideas or problems. A teacher may serve as a student’s mentor, or someone in a more senior position at work may mentor a less experienced associate. The role might be formal or informal. There are no set rules, but generally the relationship involves trust, counsel, and mutual respect.
No Longer Alone
Imagine receiving a diagnosis of Alzheimer’s or another form of dementia. Few things would be as frightening; few things would elicit such a strong sense of being alone. But what if, upon diagnosis, you were introduced to a dementia mentor? How might that change things?
Well, Gary LeBlanc, along with Norman McNamara (UK), Harry Urban (US), Barry Pankhurst (Indonesia), Chris Roberts (Wales), Richard Taylor (US), and others are preparing to launch a project that has been almost six months in the making. This collaboration between friends and advocates around the world is groundbreaking. Nothing like it has ever been done, but it promises to change the way people deal with the diagnosis and the fear, uncertainty, and loneliness that comes with it.
On June 1st, the Dementia Mentors website will be unveiled. The site was designed and built by Harry Urban, founder of Forget-Me-Not. Harry is living with dementia so he knew exactly what was needed to make the site dementia friendly. The goal is simple: to provide newly diagnosed individuals with the tools they need to start this journey on the right track, from the moment the diagnosis is received.
Those Dreaded Words – And Then What?
Those involved in this project know firsthand how frightening it is to hear the words, “You have dementia.” Imagine hearing those words, then being handed a prescription and told to “come back in six months.” In many cases, that’s exactly what happens. Chris Roberts of Wales describes being stunned and in shock, head spinning such that he didn’t know where to turn.
My personal experience with Mom was similar. Although I absolutely loved the family physician we were seeing at the time, we essentially left the office after each visit knowing things had gotten a little worse but with no resources to help us understand what was happening or connect us with those who could. That was a while ago, and fortunately, I think things have begun to change a bit; at least people are talking about it more now. But, that being said, we have a long way to go.
Dementia Mentors is about helping newly diagnosed patients understand their lives aren’t over. In fact, quite the contrary! When one looks at everything people like Norrms McNamara and Harry Urban have accomplished since their diagnosis, it’s nothing short of incredible. These men are true pioneers and are inspiring hope around the globe.
Chris Roberts says, “It’s about what you can do, not what you can’t,” and that’s the message the founders of Dementia Mentors want to convey.
Harry is quick to encourage people not to give up, assuring them they do have a meaningful life ahead of them. In this digital world where Google has become our best friend, it’s vital for folks to realize that when they hit the Internet for information, they will likely be bombarded with material about the later stages of the disease. The disease isn’t JUST the later stages! Yet, there tends to be very little information out there about the earlier stages. This is where Dementia Mentors comes in.
- Imagine a website created by dementia patients, for dementia patients. That means simple navigation, pleasing to the eyes, clear, and concise presentation. Someone having problems reading the text can simply click a button to hear the passage read aloud.
- Imagine being able to listen to people who are actually living with dementia discuss a wide variety of topics – all from their own unique point of view and based on real life experience. At launch, the site will have approximately 30 pre-recorded videos, no more than three minutes in length. Additional videos will be added in the coming months.
- Imagine having a face-to-face video chat with someone who has walked/is walking in your shoes. Patients will be able to schedule an appointment to talk one-on-one with a mentor. Keeping to the dementia friendly theme, a simple mouse click is all it will take to be connected with a mentor via both audio and video. Of course, all discussions will be completely confidential.
- Imagine one-stop access to over 70 puzzles and activities, all designed with dementia patients in mind. The activity page will be updated with new material regularly to keep it fresh and interesting.
- Imagine quick, easy access to virtual memory cafés where patients can enjoy socializing with one another. People like Harry, Chris, and Norrms credit keeping busy, maintaining social connections, and staying engaged with helping them keep progression at bay. The beauty of social media – no one ever needs to feel alone.
Gary and his team envision today’s mentees becoming tomorrow’s mentors. The value of helping others can’t be overstated. We all feel more energized, hopeful, and positive when we know we’ve made a difference to another person. That’s what Dementia Mentors is all about – people helping people. Everyone involved benefits from the program; each life is enriched along the way.
This project is innovative and 100% grassroots-based. All participants are donating their time and the team is seeking additional mentors. They would like to have every corner of the world covered, so that people can be connected 24 hours per day, seven days per week. According to Gary, there are 15 mentors on board as of this writing, with many others expressing interest already.
Friends Helping Friends
The Dementia Mentors tagline says it best, “Mentoring, Motivation, and More. We Help You Rule Your Dementia.” I truly believe that is the key – rule it, don’t let it rule you. We didn’t do that with my mom. At that time, we didn’t even talk about it let alone think there might be a way to connect her with others who could understand her fears so much more than we could. What a blessing that would have been…
You can help by spreading the word about the June 1st launch and directing people to http://www.dementiamentors.com. By doing so, you, too, will truly be making a difference! If you or someone you know would like more information about the project, please visit Gary at Common Sense Caregiving.
Gary LeBlanc is an author, columnist with the Tampa Tribune, founder of theAlzheimer’s/Dementia Hospital Wristband Project, a Purple Angel Ambassador, and former caregiver to his father who lived with dementia. You can visit him at Common Sense Caregiving.
On a personal note, my grandmother had dementia. It is truly heartbreaking disease to watch take over your loved one. I thank Gary from the bottom of my heart for all his efforts to bring awareness and help to those families with loved ones suffering from Alzheimer’s or dementia.
Gary is a great friend and I wish him nothing but success with his endeavors to help others. A huge congratulations on the Dementia Mentor website Gary. Please visit the site and contact Gary with questions. God bless!