Online Community Offers a Glimpse into the Future for those Newly Diagnosed with Dementia
David Kramer is an upbeat and adventurous former emergency room physician who facilitates a very popular Facebook page: Living Well With Alzheimer’s. A blogger under the pseudonym of Truthful Kindness enjoys research, analysis, & creating anything from designing a sewing pattern to creating a book or theatre character and is the administrator of a very well received website Symptoms Perspective, which includes projects from Dementia & Mild Cognitive Impairment patients. Robert Bowles, a pharmacist by profession, offers invaluable insights via his blog Lewy Body Dementia: Living Beyond the Diagnosis. Karen Francis, MSW had been a volunteer with the Alzheimer’s Association for over 15 years, running family caregiver support groups and consulting for memory care providers.
What all the people named above have in common is their participation in an extraordinary online program called Dementia Mentors. Their stories and their dementia diagnoses are as different as they are, but that’s what makes them so helpful to those they befriend through the program.
“Persons from all different backgrounds and types of dementia have come together from all over the world. These folks are the experts, for they are all dealing with the effects of dementia themselves. The mentors are honest about the challenges but hopeful about the possibilities. The difference between this and other websites offering information, is that here questions can be answered about the impact of dementia by someone actually living it,” said caregiver, author and dementia advocate Gary Joseph LeBlanc, one of the co-founders along with the site’s original web designer, Harry Urban, who has begun many Facebook pages devoted to supporting those with different types of dementia and helped launched the mentors originally while coping with symptoms of vascular dementia himself.
Getting a diagnosis of a form of dementia can be devastating to say the least. In addition to the range of emotions that come with coping with this new information, in the past it was often a very confusing and isolating experience as well.
LeBlanc continues, “Our tendency these days is to rush home, jump on the computer and start Googling whatever disease we’ve been handed. What they see is the horrible end stages, all the worst symptoms and nothing about how to ‘have a life’ in between!”
The symptoms and causes of dementia range widely for each person and there is no one predictable course that each journey with dementia will take, but one very innovative online program has been illuminating the path.
Michael Neuwirth, a former patent attorney and founder of Care Changers shares, “I co-founded Dementia Mentors because people with dementia need a resource where they can get the facts about living with dementia directly from their peers. There is so much disinformation and confusion about living with dementia that people who have just been diagnosed need to be able to find out what to expect from other people who have been living with dementia for years. They can also ask questions and get advice on how to best deal with having dementia. They also get motivation from our amazing mentors and hopefully they will become mentors as well.”
No matter what type of dementia-related disease is involved, a dedicated and growing team of dementia mentors are there to lend a virtual hand for those coping with vascular dementia, Lewy body dementia, frontal-temporal lobe dementia, Alzheimer’s, traumatic brain injury and many other forms.
The mentoring sessions begin after an initial request is made online and some preliminary information is gathered about diagnosis and goals for the sessions to help the Dementia Mentors administrative team best match newly diagnosed individuals with the right mentor. All that is required to participate in the free program is a computer with a webcam. All mentoring session are strictly confidential and the mentor and person newly diagnosed determine the course of the conversation, length of the interaction and how frequently they want to connect.
The response has been overwhelmingly positive from this new program that has quickly grown by leaps and bounds. Participants have reported a sense of belonging, increased socialization, a decrease in feelings of fear and hopelessness and gaining practical tips on “real world” solutions to challenges they might face. But the biggest benefit of all might be the new hope found in the way the mentors are changing attitudes about dementia by showing those newly diagnosed and all of us who read their stories that there is life after disease enters it and it can still be a pretty good one at that!