Molly's Movement - The Youtubers documenting dementia
Sunday, May 21st, 2017 | Blog
Each year, the world comes together during Dementia Awareness Week to help raise awareness of dementia - a neurodegenerative disease that affects over 47.5 million people globally.
Science can only manage the symptoms of dementia currently, but it can not stop or reverse the damage of the disease. Science is slowly moving towards a cure, but there will not be anything concrete in the immediate future. This is why it is important that the world continues to raise awareness, and why Dementia Awareness Week - along with many other awareness days and weeks - is so important.
Actively raising awareness shouldn’t just be a focus on specific days or weeks though, it should be intrinsically linked with day-to-day life. Through the use of new media, people are now starting to broadcast their own battles and experiences with the disease and no YouTube channel embodies this more than Molly & Joey. A mother and son duo that are sharing their own personal battle with dementia.
Molly and Joey created their YouTube channel on January 17th of this year, and since then they have amassed 4,007,823 views across their videos. In their bi-weekly video series, Joey documents his mother’s battle with dementia, as well as the strain that it takes on their relationship. The week-to-week videos highlight Molly’s deterioration and the toll that takes on her and Joey. We recently spoke to Joey to find out a little more about him, Molly and their YouTube channel .
Getting diagnosed with dementia is not something that happens overnight. It is a continuous experience that can take months or years before people realise something is wrong. We asked Joey about Molly’s diagnosis and the events that preceded it.
“She started having difficulty around 10 years ago when she started struggling with her job at Verizon. Three years later she started having issues getting dressed, paying bills, driving, taking a shower and taking her medication. Two and a half years later, she was finally diagnosed with Lewy Body Dementia and has now been in a nursing home for about six months”, Joey explained.
Lewy Body Dementia (LBD) is the third most common cause of dementia, constituting 10 to 25 percent of all cases globally. The most common symptom of LBD is loss of cognitive function, but it can also present a decline in alertness, visuospatial function and also executive function. This can affect a person’s ability to perform basic tasks such as dressing themselves or showering. Those living with LBD can also show signs of Parkinson’s disease, an illness that limits the central-nervous system’s ability to control motor functions.
All these issues are addressed during a typical episode of Molly & Joey, and Joey will often offer personal insights into how he is dealing with the situation. What makes these moments so sincere is Joey’s stoicism around Molly. It’s this paradigm that makes the channel so captivating, and something that has contributed to the swift success of their content. We asked Joey if he expected the channel to gain the momentum it has:“No. I thought maybe a few thousand people dealing with dementia would follow the channel, but I had no idea it would grow so fast.
“One thing that constantly surprises me is that a lot of our viewers had never heard of dementia until they found our channel. The videos inspire them to live a better life, and to make sure they appreciate the family they have”
With the success of the channel in mind, Joey started Molly’s Movement. A campaign focused on raising awareness and providing support to those dealing with dementia. The website features information about LBD and Molly’s battle with it. Given the experience that Joey has gained from supporting his mother, we asked him what advice he would give to someone else going through a similar situation: “The most important thing you can do is just take it day-by-day, and focus on what it takes to get things prepared for your loved one - they will need the support.
“Right after the diagnosis there is a lot of things to figure out; financial issues, housing, health care, support etc.You’re not going to get everything right the first time, and It takes a lot of patience and work to get things done.”
Molly’s Movement doesn’t just raise awareness though, Molly and Joey have turned it into a movement that supports individuals and families going through a similar situation. Through the “Molly Gives Back” initiative, Joey and Molly use the money that is made through the sale of products, to treat people who are also caring for a loved one diagnosed with dementia. It can be anything from a much needed new laptop, to an evening out of the house. It’s clear that Joey puts a lot of work into the project, and really wants provide all the support he can to people across the world. This is clearly not an easy task, and the relationship he has with Molly clearly takes its toll at times.
“It's exhausting, but I do it for my Mother, for other people suffering with dementia, and for those that relentlessly provide care. That’s what keeps me going”, said Joey.
“It's important that the world knows the suffering they are going through and have been through while dealing with dementia. It has gone unnoticed for decades and it's time people see the truth in real-life situations.”
It’s a sad fact that Molly will never fully understand the following she has garnered across the world. With each episode her condition is visibly deteriorating as she forgets more and more of who she was as a person, and the family members that support her.
“Molly loses a little more of her personality everyday. “, Joey explains.
“She has always been funny and outgoing but I can see that declining on a daily basis. Since January, she’s lost about 20% - 30% of what makes her Molly. Before being diagnosed with LBD, she loved a night out on the town with family and friends, especially if it was at a restaurant with great food. More than anything else, she just enjoyed hanging out and being herself.”
Dementia research still has a long way to go, but the general public’s understanding of dementia is improving thanks to people like Molly and Joey who are willing to share their journey. We want to thank Joey for taking the time to talk to us, and we wish him and Molly the best of luck as they move forward.