This Startup Is Trans­form­ing Alzheimer’s Care One Story At A Time

ForbesWeekly - - NEWS - BY ALANA MATOS, FORBES CON­TRIB­U­TOR

By 2050, more than 16 mil­lion Amer­i­cans are ex­pected to be di­ag­nosed with Alzheimer’s. Much of the ef­fort around this dis­ease has been fo­cused on preven­tion—how­ever, as our pop­u­la­tion ages, there must be a shift to im­prove the qual­ity of care for th­ese pa­tients. With an in­creas­ing num­ber of care­givers ex­pe­ri­enc­ing burnout, it’s piv­otal for our health­care sys­tem to start con­sid­er­ing cre­ative so­lu­tions to this prob­lem.

Me­moryWell is prov­ing to be one of th­ese so­lu­tions. Founded by Jay New­ton-Small, a for­mer Time cor­re­spon­dent, Me­moryWell is a D.C.based startup that uses the power of sto­ry­telling to im­prove the long-term care of those liv­ing with Alzheimer’s and de­men­tia. Care Com­mu­ni­ties use Me­moryWell to bet­ter care for pa­tients by hav­ing ac­cess to each of their life sto­ries.

For the vast ma­jor­ity of Amer­i­cans liv­ing in ma­jor cities, the sight of garbage-strewn pave­ments, over­flow­ing trash­cans and filthy parks seems to be rel­a­tively rare. New re­search from YouGov ex­am­ined per­cep­tions of clean­li­ness across the coun­try’s 20 most pop­u­lated metropoli­tan ar­eas, find­ing that most res­i­dents are up­beat. Peo­ple in Min­neapo­lis-St. Paul and Dal­las-Fort Worth were the most pos­i­tive with 90% re­port­ing that their cities are very or some­what clean.

Over 85% of re­spon­dents in both Den­ver and Or­lando Day­tona Beach-Mel­bourne were also sat­is­fied with their san­i­ta­tion sit­u­a­tion. Peo­ple liv­ing in Los An­ge­les were the least likely to call their city clean, though a 69% ma­jor­ity still called it very or some­what clean. Seventy-one per­cent of peo­ple in Philadel­phia called their city clean, along with 84% of res­i­dents in both New York and Chicago.

Sto­ries are printed out and hosted on­line, where fam­ily mem­bers can post the pa­tient’s fa­vorite art, mu­sic, and read­ings. As of to­day, Me­moryWell has a net­work of over 400 jour­nal­ists across the coun­try who are writ­ing th­ese sto­ries and is cur­rently in nearly half a dozen nurs­ing homes. They also are in talks with five medium-to-large care chains to pilot and just com­pleted a suc­cess­ful Kick­starter cam­paign, rais­ing over $57,000.

New­ton-Small started this com­pany after ex­pe­ri­enc­ing the in­ef­fi­cien­cies in this mar­ket first hand. When she was in col­lege, her fa­ther was di­ag­nosed with Alzheimer’s and, after her mother passed away, she be­came his pri­mary care­giver. At the time, she made the de­ci­sion to put him in a nurs­ing home so he could re­ceive the best care. When she ar­rived, she was handed a 20-page ques­tion­naire to fill out about his life. “I’m sit­ting there writ­ing down th­ese an­swers and think­ing, who reads 20 pages of hand­writ­ten data points for 150 res­i­dents in this home? So I handed it in blank and told them, ‘Look, I’m a jour­nal­ist, let me write down his story.’”

She pro­ceeded to do just that—and it ab­so­lutely trans­formed his care. She de­scribes how every care­giver re­mem­bered his story, and it gave them a lot of em­pa­thy to­wards who he was as a per­son. “Two of his care­givers were Ethiopian and he had spent time in Africa, so it re­ally cre­ated a bond be­tween them. My dad could no longer tell his story and he was get­ting vi­o­lent be­cause peo­ple were touch­ing him, which he didn’t like. But if you came up to him and said ‘your lit­tle sis­ter Ce­cile sent me this pic­ture’ or ‘your daugh­ter Jay is com­ing over later to­day’, he at least thought he must know you and that you def­i­nitely knew him. And so I de­cided that I wanted to give that ex­pe­ri­ence to other peo­ple.”

This turned into a four-year project where New­ton-Small would ask her col­leagues to write the sto­ries of her fa­ther’s friends. After de­mand for the prod­uct grew, she de­cided to turn it into the com­pany that it is to­day. Me­moryWell sells pri­mar­ily to nurs­ing homes, but they also have a B2C prod­uct that grew out of a vi­ral Washington Post Ar­ti­cle that was writ­ten about the com­pany. They had more than 3,500 peo­ple con­tact them. “It be­came re­ally clear that there was a huge de­mand for sto­ries to be told, whether some­body has Alzheimer’s or ALS or Parkin­son’s, or even some­one with a grandpa that has an incredible story about fight­ing in World War II. We have all of th­ese amaz­ing peo­ple ap­proach us say­ing ‘we re­ally want our sto­ries told’.”

In our con­ver­sa­tion, New­ton-Small tells me about some of the chal­lenges in build­ing her com­pany. She ex­plains that one of the hard­est parts has been keep­ing a fo­cus on the core prod­uct. Be­cause there is such an in­ter­est in this idea, peo­ple of­ten ap­proach her for dif­fer­ent pur­poses—from writ­ing chil­dren’s sto­ries to writ­ing em­ployee pro­files for com­pa­nies.

“There are so many dif­fer­ent ways to use jour­nal­ism, which is re­ally ex­cit­ing, but it’s also been re­ally hard to fo­cus and prove out a niche. What we do, to me, has huge po­ten­tial. When I was at Time, I used my tal­ents to tell the sto­ries of the pow­er­ful and the rich and the in­fa­mous and they were read by mil­lions. Now I’m us­ing those same skills to tell the sto­ries of ev­ery­day peo­ple, and it might only be read by 20 or 30, but it has a much deeper im­pact on that life. And that’s re­ally re­ward­ing.”

She also ex­plains that she has re­ceived a lot of pres­sure to cre­ate a DIY prod­uct, which would al­low her to scale faster. How­ever, she is firm in her de­ci­sion to con­tinue with this model. “Peo­ple are too close to their own lives, so DIY prod­ucts can cre­ate so much strife and angst. One of the ques­tions on the orig­i­nal ques­tion­naire was: tell me about your par­ent’s mar­riage in three lines. And I was like, how am I sup­posed to sum­ma­rize this? But if a jour­nal­ist calls you and says, talk to me about your par­ent’s mar­riage, that is a much eas­ier propo­si­tion. It’s not a sim­ple easy but­ton press so­lu­tion, but it’s a much bet­ter prod­uct, and it’s much more en­dur­ing. And the idea of po­ten­tially cap­tur­ing mil­lions of sto­ries would put us in the front­line of his­tory for a gen­er­a­tion that is very nondig­i­tal.”

De­spite th­ese chal­lenges, she has been laser-fo­cused on her goal and in the process has be­come an ex­pert in this chal­leng­ing in­dus­try. Early on, she dis­cov­ered that most of th­ese homes don’t have Wifi and are of­ten times run by nuns who write out physical checks. When she first men­tioned the pos­si­bil­ity of in­te­grat­ing a sub­scrip­tion model, it fell flat—it wasn’t some­thing that they could re­ally re­late to. As a re­sult, she ex­plains that many who have tried to dis­rupt this in­dus­try be­fore have failed be­cause they cre­ate apps

that most staff mem­bers don’t have ac­cess to. New­ton-Small is try­ing to change this by cre­at­ing a prod­uct that bridges the digital with the ana­log, which in this case is the printed story and the digital one for fam­ily mem­bers.

Me­moryWell is a tes­ta­ment to the power of sto­ry­telling not only in its prod­uct but also in the way the com­pany presents it­self. They have re­ceived or­ganic PR by out­lets like DCInno, KCRW and NPR. “There is some­thing re­ally at­trac­tive to jour­nal­ists about telling sto­ries. And that’s some­thing that many com­pa­nies don’t do enough of. Jour­nal­ists—we love sto­ries. We are, at the core, sto­ry­tellers. It’s what drew me to the com­pany and it’s what draws other jour­nal­ists to write about us. We also saw this when pitched at the WeWork cre­ator awards. Star­tups had one minute to pitch their com­pany, and while most talked about growth and trac­tion, I got up there and told my dad’s story. I didn’t in­clude any met­rics, and at that moment I thought ‘I ei­ther nailed that or to­tally messed it up’ be­cause it was just so dif­fer­ent. And we ended up win­ning.”

New­ton-Small be­lieves that through sto­ry­telling, she will reach her goal of im­prov­ing the care of mil­lions that are suf­fer­ing from this con­di­tion. She also be­lieves that sto­ry­telling is es­sen­tial in build­ing any busi­ness, and should be a core part of that process.

Her best ad­vice for some­one that is just start­ing out? “In life, every­thing is about con­nec­tions. Peo­ple are in­ter­est­ing—find out their sto­ries. I think the cul­ture in Washington is that to­day’s in­terns could be to­mor­row’s bosses, so talk to ev­ery­body. Help them suc­ceed and they’ll help you later. You never know who you might meet. A lot of my con­tacts have led me down amaz­ingly fas­ci­nat­ing rab­bit holes. I’m a big be­liever in be­ing Alice, and chas­ing white rab­bits.”

Jay New­ton-Small, founder of Me­moryWell at the Clin­ton School March 3, 2016.

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