De­mo­graph­ics add ur­gency for ac­tion on de­men­tia long-term care

Modern Healthcare - - COMMENT - By Es­ther M. Fried­man

When I was grow­ing up, I did a lot of baby-sit­ting and mostly it went with­out a hitch. But one af­ter­noon, when I was about 12, I took my younger sis­ter with me on a job not far from home. We got caught up play­ing a game, and be­fore we knew it, we were alone in the house: I had lost the person I was sup­posed to watch.

We searched ev­ery room, the yard and the sur­round­ing streets. Noth­ing. We called my par­ents and to­gether we swept our bustling Brook­lyn neigh­bor­hood—houses nearby, lo­cal shops, even the clos­est sub­way sta­tion, any­where my charge might have gone. Af­ter hours of hunt­ing, we found him wan­der­ing the city alone, scared and con­fused.

My grand­fa­ther was 83 at the time, and al­ready deep in the throes of Alzheimer’s dis­ease.

To­day, roughly 15% of Amer­i­cans older than 70—about 3.8 mil­lion peo­ple—live with the cog­ni­tive de­cline that we know as de­men­tia, with Alzheimer’s its most com­mon form. RAND Corp. re­search shows that af­ter ac­count­ing for un­paid help by fam­ily mem­bers, the to­tal an­nual costs of de­men­tia to the na­tion are be­tween $159 bil­lion and $215 bil­lion—equiv­a­lent to or greater than that of heart dis­ease and can­cer. These costs are ex­pected to sky­rocket to more than $500 bil­lion by 2040 as baby boomers be­come grayer and the num­ber of us af­flicted with de­men­tia soars.

De­men­tia takes a huge toll on those af­flicted with it. But it also has ma­jor con­se­quences for those who must care for them, most of­ten fam­ily and friends. More than 15 mil­lion Amer­i­cans pro­vide care for loved ones with de­men­tia—tend­ing to a long check­list of their daily, rou­tine needs and en­sur­ing their med­i­cal needs are met.

We know de­men­tia care pro­vided by fam­ily and friends has big costs: 40% of fam­ily de­men­tia care­givers re­port quit­ting jobs or cut­ting work hours. Their phys­i­cal and men­tal health suf­fers. Women are par­tic­u­larly vul­ner­a­ble to the neg­a­tive con­se­quences of care­giv- ing be­cause they of­ten bear much of the work­load. My grand­mother’s bad shoul­der—so painful that she had to forego air con­di­tion­ing, even in hu­mid sum­mers—was likely a con­se­quence of lift­ing my grand­fa­ther ev­ery day for more than a decade.

What can be done to im­prove the sit­u­a­tion of peo­ple with de­men­tia and their care­givers?

At RAND, we an­a­lyzed ex­ist­ing na­tional plans on de­men­tia and long-term care and in­ter­viewed rep­re­sen­ta­tives of the many dif­fer­ent in­ter­ests in­volved in de­men­tia care. We de­vel­oped a blue­print with pol­icy op­tions, so all con­cerned might work to­gether to im­prove long-term care, es­pe­cially its de­liv­ery, fi­nanc­ing and op­tions for its work­force.

A crit­i­cal first step, we found, in­volves in­creas­ing in­for­ma­tion and sup­port avail­able to fam­ily care­givers and oth­ers in­volved in de­men­tia care. Only half of the pa­tients with de­men­tia and their fam­i­lies re­ceive any coun­sel­ing, sup­port or in­for­ma­tion about next steps fol­low­ing a di­ag­no­sis.

At­ten­tion also should be paid to ways to ease the many tran­si­tions those with de­men­tia make among emer­gency de­part­ments, hos­pi­tals, nurs­ing homes, home care and hos­pices, and en­sure that fam­ily mem­bers may keep their loved ones in their homes and com­mu­ni­ties as long as pos­si­ble.

Fi­nally, as the pop­u­la­tion ages and fam­ily sizes shrink, the re­liance on fam­ily care­givers will be­come un­sus­tain­able. Pol­i­cy­mak­ers, there­fore, need to find ways to im­prove the salary, train­ing, work con­di­tions and re­ten­tion rates among those who get paid for de­men­tia care. Fail­ure to do so may leave the aged vul­ner­a­ble to poor care or even abuse.

For my Jewish grand­mother, a Holo­caust sur­vivor, it was a strug­gle to seek help, and it took a long time be­fore she fi­nally agreed to hire some­one to as­sist with my grand­fa­ther’s care. It was strik­ing to me that even the strong­est woman I have ever known even­tu­ally con­ceded that she could not man­age de­men­tia care­giv­ing alone.

The 20th an­niver­sary of my grand­fa­ther’s death oc­curred last month, but the con­di­tion that claimed his life haunts me still. I worry about my own par­ents and won­der how I might man­age if they need long-term care. I’m se­cretly afraid I may be a bur­den some day to my own son. To­day, pol­icy plans and pro­pos­als still fo­cus on ei­ther long-term care or de­men­tia. Our re­search points to the ur­gency for ac­tion at the in­ter­sec­tion of the two: It is time to start tack­ling the prob­lem of de­men­tia long-term care.

Es­ther M. Fried­man is a so­ci­ol­o­gist at the not-for-profit, non­par­ti­san RAND Corp. and is part of a team that just re­leased the re­port “Im­prov­ing Long-Term De­men­tia Care: A Pol­icy Blue­print,” avail­able at

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