De­men­tia care­givers take fi­nan­cial hit, too

Star Tribune - - News - By ALEJANDRA CANCINO

CHICAGO – Many rel­a­tives and friends pro­vid­ing fi­nan­cial sup­port or care to peo­ple with de­men­tia have dipped into their re­tire­ment sav­ings, cut back on spend­ing and sold as­sets to pay for ex­penses tied to the dis­ease, ac­cord­ing to a sur­vey re­leased Wed­nes­day by the Alzheimer’s As­so­ci­a­tion.

About one in five go hun­gry be­cause they don’t have enough money.

“This was a big shocker for us,” said Keith Fargo, Alzheimer’s As­so­ci­a­tion di­rec­tor of sci­en­tific pro­grams and out­reach.

Fargo said he didn’t ex­pect so many fam­i­lies to be strug­gling. He said the sur­vey shows that peo­ple are not pre­pared for the high costs of home care or nurs­ing home care. The me­dian cost of a home care aide is $20 per hour and the av­er­age cost of a semipri­vate room in a nurs­ing home is $80,300 per year.

Na­tion­wide, there are 5.4 mil­lion peo­ple with Alzheimer’s, the most com­mon cause of de­men­tia. The ma­jor­ity are older than 75. As de­men­tia pro­gresses, pa­tients of­ten need help with daily ac­tiv­i­ties, such as eat­ing, get­ting dressed or bathing. Roughly two out of five of the more than 15 mil­lion un­paid care­givers in the U.S. have a house­hold in­come be­low $50,000, the Alzheimer’s As­so­ci­a­tion says. Of­ten the care­giv­ing role falls on a daugh­ter or a spouse.

Re­nee Packel, of Philadel­phia, said that shortly af­ter her hus­band’s Alzheimer’s was di­ag­nosed in 1999, she sold their car and their twobed­room sub­ur­ban home. To keep costs down, they moved into a one-bed­room apart­ment in the city. “We needed money,” said Packel, 80.

Art Packel, who died last year, was in charge of the cou­ple’s fi­nances, and by the time she re­al­ized some­thing was wrong, money was miss­ing and they were be­hind on bills. Packel said she didn’t want her chil­dren sup­port­ing them, so she got a job as a re­cep­tion­ist.

As the dis­ease pro­gressed and her hus­band started fall­ing and get­ting ag­gres­sive, she moved him into a nurs­ing home, where he lived for al­most four years. She was lucky, she said, that her hus­band’s veteran sta­tus granted him some ben­e­fits. But even with the gov­ern­ment’s help, she still paid for a year of nurs­ing home care, about $800 or $900 per month.

“It was a bad time, but it was not a dire time,” Packel said, adding that sell­ing their home helped her weather the storm.

The Fam­ily Im­pact of Alzheimer’s Sur­vey was based on more than 3,500 in­ter­views made in De­cem­ber. About 500 re­spon­dents said they pro­vided care­giv­ing and/or fi­nan­cial aid to some­one with de­men­tia. Ninety-three per­cent were fam­ily mem­bers and the rest were friends. On av­er­age, they spent more than $5,000 per year, mostly on food, travel and med­i­cal sup­plies, such as di­a­pers. The highest ex­penses were in­curred by spouses or part­ners.

Nearly half of re­spon­dents said they cut back on spend­ing. About 20 per­cent go to the doc­tor less of­ten, while 11 per­cent don’t get all of their own med­i­ca­tions. About 11 per­cent cut back on their chil­dren’s ed­u­ca­tional ex­penses.

Beth Kallmyer, Alzheimer’s As­so­ci­a­tion vice pres­i­dent of con­stituent ser­vices, said peo­ple er­ro­neously be­lieve Medi­care cov­ers long-term care costs, when it doesn’t. She said, “There is no sil­ver bul­let in plan­ning for [Alzheimer’s]; the costs are too stag­ger­ing.”


Many peo­ple car­ing for loved ones with de­men­tia strug­gle fi­nan­cially over the high cost of car­ing for the dis­ease.

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