Peo­ple Power

How grass­roots cam­paigns are eas­ing the bur­den of car­ing for some­one with Alzheimer’s—and im­prov­ing pa­tient qual­ity of life.

Los Angeles Times - - PARADE - By Paula Spencer Scott

Kathy Broggy heard shouts. Then she saw a crowd gath­ered around a car. In­side, an older woman, who had Alzheimer’s, had for­got­ten how to get out. But the by­standers’ well-in­ten­tioned yelling only made her more con­fused. “It just made me heart­sick,” says Broggy, the ac­tiv­ity di­rec­tor for a small eldercare com­pany in Knoxville, Tenn. “No­body un­der­stood the ba­sic dos and don’ts about help­ing peo­ple with Alzheimer’s.”

A light bulb went off soon af­ter when she heard about com­mu­ni­ties in Europe where city work­ers, shop­keep­ers and oth­ers learn how to in­ter­act with peo­ple with de­men­tia in ways that pro­vide help and pre­serve their dig­nity. We could

do that here, she thought. Last month, Knoxville be­came a “de­men­tia-friendly” city. Signed on to sup­port sim­ple, city­wide train­ing are dozens of rep­re­sen­ta­tives from city and county gov­ern­ment, ma­jor hos­pi­tals, the lo­cal Alzheimer’s As­so­ci­a­tion and the Pat Sum­mitt Foun­da­tion, started by the beloved Univer­sity of Ten­nessee women’s bas­ket­ball coach af­ter dis­clos­ing her early on­set Alzheimer’s in 2011.

“We’ve done it with just a group of peo­ple who wanted this to hap­pen,” says Broggy.

The Power of Many Help­ing Hands

Broggy’s tale il­lus­trates that the big story about Alzheimer’s to­day is ac­tu­ally a thou­sand lit­tle sto­ries. Lack­ing a cure or even mean­ing­ful treat­ments, those who bear the brunt of care are tak­ing things into their own hands—and shar­ing their inspired so­lu­tions. Some reach hun­dreds or thou­sands at once. Oth­ers im­prove a hand­ful of lives at a time.

This kind of grass­roots move­ment is key to help­ing pa­tients and care­givers cope with a dis­ease on the rise. Ev­ery 67 sec­onds, some­one in the U.S. de­vel­ops Alzheimer’s, ac­cord­ing to the Alzheimer’s As­so­ci­a­tion; an es­ti­mated 5.3 mil­lion Amer­i­cans of all ages al­ready have the dis­ease in 2015. One in three se­niors

dies with Alzheimer’s or other de­men­tia, it’s the sixth lead­ing cause of death in the U.S., and it’s the only cause of death in the top 10 in Amer­ica that can’t be pre­vented, cured or slowed, the as­so­ci­a­tion says.

En­ter peo­ple power. “A lot of un­met needs are be­ing re­sponded to spon­ta­neously— to fill the needs for in­clu­sion, for less stigma about the dis­ease and for more fo­cus on qual­ity of life,” says Lisa Gwyther, ed­u­ca­tion di­rec­tor at Duke Univer­sity’s Alzheimer’s Dis­ease Re­search Cen­ter. “Peo­ple want to give to oth­ers.”

Solv­ing Prob­lems

Many great ideas are born from night­mar­ish sit­u­a­tions. Gary Joseph LeBlanc once left his fa­ther’s hos­pi­tal room for just 10 min­utes to get some fresh air. When he re­turned, a nurse was quizzing the el­der LeBlanc, who was there for a surgery but also had Alzheimer’s, about his pre­scrip­tion history—and writ­ing his wrong an­swers into his chart. “The poor man couldn’t even have told her if he’d taken a pill five min­utes ago,” says LeBlanc, who re­al­ized in that mo­ment that some­one had to be with his dad con­stantly in the hos­pi­tal.

Un­aware staff, noise and a dis­rupted rou­tine of­ten ag­i­tate hos­pi­tal­ized peo­ple who have de­men­tia, LeBlanc learned— putting them at risk for mis­takes, re­straints or se­da­tions. His sim­ple idea: Re­mind ev­ery doc­tor, nurse and or­derly that a pa­tient has de­men­tia by plac­ing a spe­cial sticker—a pur­ple an­gel, the in­ter­na­tional sym­bol of Alzheimer’s—on their ad­mis­sion wrist­band next to their name. At the same time, train staff about dis­ease ba­sics and how to com­mu­ni­cate more kindly and ef­fec­tively.

Af­ter six years of lob­by­ing ad­min­is­tra­tors about his wrist­band pro­ject, Brooksville Re­gional Hos­pi­tal in Her­nando County, Fla., where his dad had stayed, be­came the first to adopt it. Seven more hos­pi­tals in four states will do the same this year, LeBlanc says. “Ev­ery­one says, ‘ Wow, why don’t we have some­thing like this al­ready?’”

Bar­bara Mar­ion Horn’s night­mare be­gan as Su­per­storm Sandy bore down on Long Beach, N.Y., where she and her mother, then 92, lived in 2012. Dur­ing the manda­tory evac­u­a­tions that re­lo­cated them sev­eral times over a four-week span, her mother’s mild-stage Alzheimer’s got much worse. “If I’d only known the psy­cho­log­i­cal trauma as­so­ci­ated with mov­ing a frag­ile older per­son, I would have ap­proached our evac­u­a­tion com­pletely dif­fer­ently,” she says. That’s why Horn now ad­vo­cates for se­nior-cen­tered dis­as­ter pre­pared­ness, work­ing with civic groups to cre­ate ed­u­ca­tion and shel­ter-train­ing ma­te­ri­als and re­sponse plans that in­clude older adults with de­men­tia.

En­rich­ing Lives

Other ef­forts fo­cus on im­prov­ing ev­ery­day life. Although the brain changes of Alzheimer’s can al­ter mem­o­ries and per­son­al­i­ties, fam­i­lies know that the per­son is still “alive in­side.” That’s the name of a doc­u­men­tary screened at the Sun­dance Film Fes­ti­val last year about Dan Co­hen, a self-de­scribed techie who be­gan bring­ing iPods with cus­tom­ized playlists to nurs­ing-home res­i­dents, with re­mark­able re­sults. Mil­lions of peo­ple have seen a vi­ral video of wheel­chair-bound Henry Dre­her, 94, swing­ing and singing along with Cab Cal­loway. Per­son­al­ized mu­sic, Co­hen has shown, calms ag­i­tated minds and trig­gers deep emo­tional re­call, even into the late stages of de­men­tia.

His or­ga­ni­za­tion, Mu­sic & Mem­ory, fur­nishes do­nated iPods to more than 1,150 fa­cil­i­ties in the U.S. and Canada, and of­fers guides for fam­i­lies on its web­site. “And it’s all spread by word of mouth,” Co­hen says. “If phar­ma­cists in­vented a pill that gen­er­ated these re­sults, ev­ery doc­tor would pre­scribe it and ev­ery fam­ily would want it.”

More grass­roots ef­forts that are im­prov­ing qual­ity of life:

Story-power hour Li­brar­ian Tysha Shay of­ten read aloud to her grand­mother, who lived next door. De­spite her Alzheimer’s, her mem­o­ries were sparked, in par­tic­u­lar, by old po­ems. Re­al­iz­ing that other shut-in older adults with de­men­tia had no way to ac­cess li­brary ma­te­ri­als, Shay started an out­reach pro­gram through Mis­souri’s Spring­field-Greene County Li­brary Dis­trict. More than 1,500 peo­ple have at­tended these “Sto­ries for Life” ses­sions at lo­cal re­tire­ment com­mu­ni­ties.

Shall we dance? “You’re never in a bad mood when you’re danc­ing,” says ball­room in­struc­tor Nathan Hescock of Rhythm Break Cares, a non­profit in New York City that brings the restora­tive power of dance to peo­ple with de­men­tia. Four­teen years ago, he was asked to help with a six-week danc­ing pro­ject at a nurs­ing home in New York’s West Vil­lage. He kept com­ing

af­ter it ended, inspired by the way move­ment and mu­sic bring joy and con­fi­dence to peo­ple with early and mid-stage de­men­tia. “They know how to fox­trot, how to jit­ter­bug—and not from watch­ing Danc­ing With the Stars,” he says.

iPad mem­ory books Jenny Rozbruch ached when vas­cu­lar de­men­tia left her vi­va­cious grand­mother, Frieda, a Holo­caust sur­vivor, barely able to com­mu­ni­cate. Maybe the iPad

could help, the graphic de­signer thought. She pack­aged old fam­ily photos, Yid­dish folk songs, Frank Si­na­tra trivia and other blasts from Frieda’s past into an app. Now called Grey Mat­ters, the app lets users add per­son­al­ized im­ages and prompts to help fam­ily mem­bers en­gage with some­one with de­men­tia. Nearly a thou­sand peo­ple down­loaded the free app the first month af­ter its launch.

Build­ing Con­nec­tions

When Alzheimer’s drops in, old friends of­ten drop out. Iso­la­tion is com­mon. Fam­i­lies quickly re­al­ize they need oth­ers who get it. So they’re build­ing ways to find them:

The never-end­ing class Af­ter so­cial worker Bobbi Matchar held an eight-week ed­u­ca­tion pro­gram at Duke Univer­sity for peo­ple re­cently di­ag­nosed and their care part­ners, the group grew so close no­body wanted it to end. So they called them­selves “the Al­phas” and three years later, still meet monthly at a lo­cal res­tau­rant, along with later grad­u­ates of the Duke class.

“It cre­ates a sense of com­mu­nity among peo­ple who didn’t choose to have this sit­u­a­tion and who of­ten have to quit their old com­mu­ni­ties at work and church,” says Matchar.

Drop-in tea& em­pa­thy “When peo­ple hear the words ‘sup­port group,’ they fo­cus on how there’s some­thing wrong with them or they ex­pect to sit and learn,” says Lori La Bey, who dealt with her mom’s Alzheimer’s for three decades. “I wanted a safe, sup­port­ive gath­er­ing where you could just be your­self with friends.” She cre­ated Arthur’s Mem­ory Café, which meets twice a month at J. Arthur’s Cof­fee Shop in Ro­seville, Minn. La Bey pulled to­gether spon­sors in­clud­ing her own Alzheimer’s

Speaks ad­vo­cacy group and a residential care home, which fur­nishes the cof­fee and treats. The world’s big­gest sup­port

group Bob DeMarco be­gan a web­site af­ter he moved to Del­ray Beach, Fla., in 2003 to help his mother, Dotty. His goal was to fig­ure out what he calls her “Alzheimer’s World,” so he posted what­ever worked: re­search news, his dis­cov­ery of how morn­ing light im­proved her mood, videos of her con­vers­ing with Har­vey, a talk­ing me­chan­i­cal par­rot he’d found. To­day, his Alzheimer’s Read­ing Room has 5,000 ar­ti­cles and draws 195,000 visi­tors a month, who leave their own ad­vice and give pep talks to one another.

Af­ter his mother died in 2012, DeMarco con­tin­ued the site to honor her, he says. “With­out that love and sup­port we re­ceived from read­ers our sit­u­a­tion would have evolved into heart­break; in­stead, we ex­pe­ri­enced joy.”

Less stress, more joy— that’s also why Kathy Broggy gal­va­nized her Knoxville, Tenn. com­mu­nity. Now her sights are even big­ger: “I hope by next year, there will be an al­liance of cities join­ing to be­come Pur­ple Cities,” says Broggy, whose de­men­tia-friendly com­mu­nity cam­paign be­gan with a sim­ple page on Face­book. “It just takes one per­son to grow some­thing,” she says. That’s peo­ple power.

Knoxville is one of the first “de­men­tia-friendly” cities in the U.S, thanks to Kathy Broggy.

Dan Co­hen’s Mu­sic& Mem­ory pro­gram helps bring Alzheimer’s brains “alive.”

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