Jennifer 'Jay' S. Newton-Small is co-founder and chief executive officer at MemoryWell and a long-serving Washington correspondent for TIME Magazine and a journalist for Bloomberg News.
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Hi Reddit. A year ago, I walked away from one of the best jobs in journalism—Washington correspondent for TIME Magazine—in order to start a company, MemoryWell. MemoryWell grew out of my experience with my father. Dad was diagnosed with Alzheimer's when I was a senior in college. My mother cared fro him for the first 10 years of his diagnosis, until the stress of caregiving overcame her and she died of a brain aneurysm. I became my father's caregiver at that point and eventually I had to move him into a community. When I did they asked me to fill out a 20-page questionnaire about his life. This made no sense to me: who would ever read and remember 20 pages of handwritten data points for the 150+ residents there? Instead, I wrote down his story. His caregivers remembered it, told each other about it. Two of his caregivers were Ethiopian and they'd had no idea that he'd lived in Ethiopia for four years early on in his career with the United Nations. They became his champions, showing him their own family photos of Addis Ababa and Lalibela. MemoryWell Was born.
Hi Jay, could you share some ways that caregivers have said these stories have helped them with their work? Think what you're doing is really interesting in this day and age of using data/algorithms to determine the "best way" to do thing. Thanks for doing this AMA!
Hi almondparfitt! Thanks for the question! So we have found that caregivers use the stories in a variety of ways. All of our stories are printable so that you can put them in care plans or hang them up on walls. We found that many assisted living facilities don't have WiFi, so this helps staff interact with them. They use them to "redirect" residents who might get agitated. So for example, my dad used to get very aggressive. Saying to him, "Mr. Small, please calm down," or "Mr. Small, come over here and listen to come music," was never very effective. But knowing his story helped enormously. Instead they're say, "Gray"-- his childhood nickname -- "your mom Clarice and sister Cecile are on their way to visit. Why don't we get you cleaned up and ready for them?" Knowing those details -- even how to best address him -- made all the difference.
Caregivers can also use our digital stories to play their favorite music and movies and show them photos or their families.
What is the best way to support someone who is caring for someone with dementia? What kind of help can a friend offer?
Hi Chtorr, Also a great question! There are many ways to support your friend. I loved to have friends come with me when I visited my dad in his earlier stages. He loved children and dogs and they'd bring along their kids and pets. It made the day less intensely about me trying to engage him, but a whole group. Other friends would visit him for me when I was traveling and take him to coffee or for a walk. Caregiving is often too solitary, when it can be a group activity. Making it fun takes the burden off. It won't always be fun, but it doesn't always have to be grim.
Alzheimers is terrifying, especially for some of the people who are still relatively young and never expected to fall victim to it. What advice would you give to young sufferers newly diagnosed?
First, let's not call them "sufferers". Especially those who have just been diagnosed--they aren't necessarily suffering! They're living with the disease. There're a lot of stigmas involved with a cognitive impairment diagnosis and getting rid of words like "sufferers" help us change the narrative on the disease. My dad had a wonderful life for a good 10 years after diagnosis, traveling with my mom, golfing with his friends, before he began to really decline. So the disease can take many paths and a diagnosis isn't an immediate death sentence. Secondly, diet and exercise is really important not only post-diagnosis but also in stave off the disease. Healthy diet and regular cardiovascular exercise can not only help prevent Alzheimer's and dementia, but also delay the effects post onset. So, I'd recommend visiting a dietician and enhancing your exercise regime if you've been newly diagnosed.
Finally, tell your story! In a couple of weeks MemoryWell will be launching an interactive version that aims to help, in part, those who've been recent diagnosed and are in the early stages. The model helps them and their loved ones build out a whole timeline of their lives. It's the beginning of what we hope will lead to thousands of conversations about their life and can help document not just their life pre-diagnosis but their life moving forward.
Since your dad had it, do you struggle with the idea you may yourself one day suffer from Alsheimers? What do you plan to do if that happens?
I do often worry that I might one day be diagnosed with Alzheimer's, though it's important to remember that only a tiny portion of the disease is hereditary. It's actually mostly environmental. My dad's family had no other cases of Alzheimer's and most of his parents and grandparents and great uncles and aunts all lived well into their 80's and 90's. That's what's so scary about the disease: it's clearly being caused by something in our environment or diets, but no one knows what it is. No one even has an inkling. So, I figure I have about as much of a chance as anyone of getting Alzheimer's and to that end I try to be mindful of exercise and diet, knowing that those factors can help prevent the disease.
Hi Jay! I think MemoryWell is a great idea and it's awesome you've taken the time to creat this organization. Are the stories created only shared with the caregivers, or are those suffering from Alzheimers or dementia able to see their life story as well?
I saw you speak at the MCON conference in 2015 and loved your talk on women in leadership roles. I'm a fan of the Broad Influence book as well!
We highly encourage those living with the disease to interact with their stories. In the later stages this can be tough but with the new interactive model we're rolling out by the end of the year, that's meant to be a tool for those in early stages to build themselves, or work collaboratively with family and friends, a whole timeline of their lives. This becomes an engagement tool later on. When I visited my dad, I'd often ask him: How old are we today, Gray (he stopped responding to dad in the last few years)? If he said 50, I'd pull up Simon and Garfunkel or episodes or MASH; if he said 30 I'd play him some Beatles or Bert Kaempfort. There's a saying in person-centered care: you have to meet people where they are. The timelines we're building will still be anchored by that person's story-- a kind of brief cheat sheet for caregivers-- but they will enable those living with the disease to create a living breathing multimedia document of their lives that become a map to meeting them wherever they are.
Hi Jay! It seems like our society is increasingly devaluing the experiences of the elderly. Do you think that helps or hinders your work?
This is so true! Especially in Silicon Valley where I feel like with tech everything green is golden. When I was working on Broad Influence, I was frustrated with the few numbers of words we can use to describe women. You try writing a book about women only using the word "women" to describe them! It gets pretty repetitive.
I was struck when I started MemoryWell, how much worse that is when it comes to aging. The Baby Boomers are moving to make aging politically correct, so many more words are becoming taboo. For example "retirement communities" and "senior communities" are now just "communities"; even AARP has become just an acronym to avoid using the word retirement.
As with words that describe women, I hope that the pendulum will swing back on this. The more you let others define women or older Americans in negative terms, the more those memes and stigmas persist. With Broad Influence, I retook the word "broad," once such a pejorative women in the 1960's lobbied the Olympics to change the "broad jump" to the "long jump," for my book. I hope that others will begin to retake words in aging. Aging is something we should be proud of, something that is natural and brings the wisdom of experience. It should not be viewed derisively.
Hi Jay! What are some similarities between being a journalist and running a company?
They both require crazy long hours! But otherwise, I find it very different. Journalism is about curiosity, seeing something interesting and chasing it down that rabbit hole. Running a company requires a lot more focus. So @TLeCompte is always reminding me to stay focused on our goals and not get distracted!
I really enjoyed Broad Influence and wanted to ask a question related to politics.
Last week in Alabama woman voters - especially women of color - had a decisive impact in electing Democrat Doug Jones as Senator over accused pedophile Roy Moore. The impact of women on the outcome of this race is especially striking given the #MeToo movement and the ongoing conversation around sexual harassment/gender diversity in the workforce. Do you see the current activism/energy in the female electorate carrying on to the 2018 midterms?
First, thanks ilovepuppies75 for reading Broad Influence!
The Moore race was striking on two levels: first is that, yes, black women are an electoral force to be reckoned with. Their turnout was striking in that it's rare to see high voter turnout for a negative. What I mean by that is: hatred of George W. Bush wasn't enough to elect John Kerry in 2004 and hatred of Barack Obama wasn't enough to elect Mitt Romney in 2012. Usually, what drives turnout to win is love of the candidate. So, it's striking that in this race, Moore was so loathed that he drove African American turnout to highs that beat Obama's numbers. Secondly, the fact that Moore won white women is also striking, particularly non-college educated white women, a demographic that went for Trump by a record 28 percentage points. This is one of Trump's biggest bases and it will be interesting to see what kind of candidates Dems need to recruit to begin leaching some of that support.
What is the very best dessert?
Not to contradict Theo, but my favorite dessert is Pavlova. With fresh strawberries. My grandmother used to make it by hand, whipping the egg whites for hours with a fork (she thought hand blenders were cheating). Yum!
In your experience, did you think that having multiple caregivers was better or worse than a single one? Seems like having one is better for long term understanding of the individual but then having a couple is good because there are fresh exercises or conversations that can be had.
It's really important to have multiple caregivers! Caregiving takes a village. My mother cared for my father for the first 10 years of his diagnosis. By the end, she was overwhelmed and they were in the midst of moving up to Washington DC so I could help out when she died suddenly of a stress-induced brain aneurysm. Later, I found out that some 40% of those caring for people living with Alzheimer's and dementia pass before the ones for whom they're caring. So, sharing that burden with as many people as possible is important!
How has your unique perspective as a journalist influenced MemoryWell's approach towards Alzheimer's care?
When I put my dad into a community a few years ago, they asked me to fill out a 20-page questionnaire about his life. This made no sense to me: who would ever read and remember 20 pages of hand written data points for the 150+ residents there? Instead, I wrote down his story and it transformed his care. We believe that it takes a journalist's distance and ability to synthesize information to capture a life story into a usable document that helps with caregiving.
What are some of the environmental causes?
I wish I knew! Thus far all we know is that women, who make up 2/3rds of those living with the disease, and low income people are more susceptible. For example African Americans and Latinos are more likely to contract Alzheimer's than whites. But we don't know precisely what in their diets or environments is causing this.
Do you have any lesson or experience you want to share about the transition you've experienced from journalism to entrepreneurship?
I think it's always important to keep an eye on the news, what's going on in your field. Journalism taught me that: a story can pivot even as you're writing it when news events change. The same goes with starting a company: the lay of the business landscape is always evolving and understanding that and incorporating it into what we do has proven important.
I’m not sure if this is off-topic per se, but I would love to hear about how you went about bringing MemoryWell to life as an entrepreneur. Did you have any experience running a business beforehand? For other aspiring entrepreneurs, do you have any resources or suggestions for getting started?
Thank you for your time!
I had no experience starting a business beforehand! And it was terrifying, but also exhilarating. MemoryWell really began as a project for the first three years of its existence, where I'd get my journalist friends to write my father's friends' stories. It took us a long time talking to caregivers and families and communities before we felt we had the right product fit and sure that there was a market there. So, my advice would be make sure you're answering a pain point: that there's a problem you're solving. I see a lot of folks who come up with a neat solution and then go looking for a problem and that's never very effective.
Hello I am confused you mention you no longer work for TIME since a year ago yet on their website there is an article you wrote dated Nov 9th 2017?
I remain a contributor to TIME, writing a bimonthly column. I'm just no longer on staff.