Editor’s note:
Ken­neth S. Kosik, MD, and Ellen Clegg, authors of a recent book on Alzheimer’s Dis­ease pre­ven­tion and treat­ment, force­fully pro­pose a new frame­work and model for brain care: What about set­ting up “cog­ni­tive shops” as “a sort of one-stop shop­ping for every­thing from Alzheimer’s dis­ease pre­ven­tion to guided care for mild or mod­er­ate dis­ease”. What fol­lows is the thought-provoking con­clu­sion sec­tion from their book “The Alzheimer’s Solu­tion. How Today’s Care Is Fail­ing Mil­lions and How We Can Do Bet­ter” (repro­duced with per­mis­sion), not very dif­fer­ent from the “brain fit­ness cen­ter” model we have talked about in the past.

————–

Chap­ter 10. CONCLUSIONS

Just as the idea of hos­pice care rev­o­lu­tion­ized death and dying in Amer­ica, the idea of bundling many aspects of Alzheimer’s care under one roof in a cog­ni­tive shop could change the way we approach this dire disease—one that has no cure and leaves no sur­vivors. Cer­tainly, the scope of the prob­lem poses med­ical and eco­nomic risks for the coun­try. These risks, and poten­tial steps for a solu­tion, were charted by the bipar­ti­san Alzheimer Study Group in the spring of 2009. The report, issued by the Alzheimer Study Group co-chaired by for­mer con­gress­man Newt Gin­grich and for­mer sen­a­tor Bob Ker­rey, minces few words. It likens the fail­ure to address the impact of Alzheimer’s to the fail­ure to strengthen the levies of New Orleans against an over­whelm­ing hur­ri­cane. “Alzheimer’s is hav­ing a large and quickly grow­ing med­ical and eco­nomic impact on the coun­try, no sig­nifi­cant med­ical treat­ments exist to halt this trend, and our health­care sys­tem is not deliv­er­ing ade­quate care to many of those with Alzheimer’s and their caregivers.”1 Among other rec­om­men­da­tions, the study group called for an Alzheimer’s czar to coor­di­nate policy.

As the baby boomers reach the age when Alzheimer’s can begin to  take hold, the com­mit­tee is right to sound an alarm. The frac­tious debate about health­care reform, with the over­ar­ch­ing ques­tions about the role of pri­vate insur­ers ver­sus the gov­ern­ment, is broad by neces­sity, and can­not address the changes needed in a frag­mented sys­tem of care for long-term dis­eases like Alzheimer’s.

Physi­cians are boxed in by an insur­ance sys­tem that pays them a fee for every ser­vice ren­dered, yet does not pay for time spent with a patient’s fam­ily out­lin­ing a plan for diet, fitness, and social ser­vices like respite care. Patients and fam­i­lies find them­selves past­ing together a com­pli­cated net­work of care on their own, get­ting refer­rals to com­mu­nity social ser­vice agen­cies, trans­porta­tion ser­vices, adult day­care, overnight care, and sup­port groups. Accom­pa­ny­ing a part­ner or a spouse with Alzheimer’s to appoint­ment after appoint­ment is hard on elders; the sit­u­a­tion can be even more night­mar­ish for the spouse of a patient with early onset Alzheimer’s. Although early onset is a much rarer form of Alzheimer’s, it poses unique bur­dens: the patient’s spouse may still be work­ing out­side the home and tend­ing to school-age children.

In short, Alzheimer’s dis­ease has been wedged into a med­ical sys­tem that has no place for it. Patients and their fam­i­lies can eas­ily get lost in a labyrinthine empire, built up over years as health­care became more costly and more reg­i­mented, and as sci­ence strug­gled to move beyond out­dated ideas.

The hos­pice move­ment involved recal­i­brat­ing the care of patients at the end of their lives, putting their needs first. It meant view­ing care as a whole, not just a sum of tests, pro­ce­dures, tubes, and bed­side mon­i­tors. It meant a new empha­sis on pain relief and human­ity, while pro­vid­ing fam­i­lies the oppor­tu­nity for relief from round-the-clock care of a dying loved one. Before hos­pice, death of a loved one often took place in a stark hos­pi­tal room, amid a tan­gle of beep­ing elec­tronic gear and tubes deliv­er­ing med­i­cine that was no longer effec­tive. Fam­ily mem­bers wedged in vis­its, and nurses and doc­tors often bus­tled in and out, admin­is­ter­ing pro­ce­dures that did lit­tle to alter the over­all prog­no­sis. After hos­pice care became accepted in the main­stream of med­i­cine, the indi­vid­u­al­ity of patients and fam­i­lies was taken into con­sid­er­a­tion— their wishes, their fears, their emo­tions. Mea­sures of com­fort, often deliv­ered by pro­fes­sion­als who were not doc­tors, became important.

Community-based cog­ni­tive cen­ters could usher in sim­i­lar changes in Alzheimer’s care—with an impor­tant dif­fer­ence. A cog­ni­tive cen­ter would not be a place to go to die, but a place to find sup­port and infor­ma­tion. Based in a patient’s neigh­bor­hood, not in an impos­ing aca­d­e­mic hos­pi­tal in a big city, the cog­ni­tive shop would offer a sort of one-stop shop­ping for every­thing from Alzheimer’s dis­ease pre­ven­tion to guided care for mild or mod­er­ate disease.

Think about the dentist’s office as an anal­ogy: den­tal offices are found all over, not just in hos­pi­tals, and pro­vide a fairly com­plete menu of care with­out the need for expen­sive spe­cial­ists. When nec­es­sary, a den­tist refers a patient to an endodon­tist or another spe­cial­ist, but she gen­er­ally treats most con­di­tions in the office—and den­tists and other staff, like hygien­ists, deliver pre­ven­tive care in the same setting.

The cog­ni­tive shop would pro­vide sup­port for physi­cians, too, by reduc­ing the focus and the bur­den on a sin­gle doc­tor. A wide array of ques­tions from fam­i­lies and patients could be answered by a social ser­vices worker or by a patient Nav­i­ga­tor, who would guide them to exist­ing points of infor­ma­tion. Fam­i­lies would be shown how to find sup­port groups or tap into com­put­er­ized infor­ma­tion right there at the cen­ter. Patients would not have to shut­tle across town after diag­no­sis to an expen­sive spe­cial­ist like a neu­rol­o­gist, and then make addi­tional appoint­ments for ther­apy, for exam­ple. Spouses could get a needed break so they could go to work or shop or visit friends—generally refresh­ing their own sup­port network.

There is another par­al­lel to the hos­pice move­ment in the low-tech solu­tions that could be housed in the cog­ni­tive shop. The staff could also pro­vide low-tech tests for peo­ple who won­dered if they were begin­ning to slide into dementia—a ser­vice that could help cut down on expen­sive tests like MRI scans for peo­ple com­plain­ing of mem­ory loss. A nurse or a physician’s assis­tant could take his­to­ries and information’s from patients, admin­is­ter mem­ory tests, take blood pres­sure and other sam­ples if needed, and pro­vide infor­ma­tion about social ser­vices. Med­ical doc­tors could be brought in only when needed, shift­ing some of the bur­den from the over­worked physician—an impor­tant shift given the short­age of primary-care doctors.

What will the cog­ni­tive shop look like? Con­sider this hypo­thet­i­cal scenario:

A retired busi­ness­man and his spouse have led a com­fort­able life for a num­ber of years in an adult com­mu­nity in the sub­urbs of a larger city. They have both noticed that he has begun for­get­ting words, and both became alarmed when he was found wan­der­ing in the park­ing garage of his building.He had for­got­ten what floor his apart­ment was on and could not find his way back. His wife urged him to go to their primary-care physi­cian for an appoint­ment, and she accom­pa­nied him. When they arrived in the doctor’s office, the doc­tor lis­tened to his patient’s con­cerns and gave them a refer­ral to a cog­ni­tive clinic near their home. There, he told them, the hus­band could take a mem­ory test and get more information.

The clinic, small but well designed, is actu­ally tucked away on a neigh­bor­hood side street off a busier high­way. The cou­ple is wel­comed by a recep­tion­ist sit­ting behind a wooden desk. A vase of fresh flow­ers, col­or­ful framed prints on the wall, and over­stuffed wing chairs add to the wel­com­ing feel. After a short wait, the hus­band and wife are ush­ered into an exam­i­na­tion room. Its lay­out is typ­i­cal: desk, chair, and exam­i­na­tion table. But sun­light streams through the venet­ian blinds that slant against a win­dow, and there is a cur­tain that can be drawn around the table, for pri­vacy. A physi­cian who is com­fort­able with mem­ory disorders—perhaps a neu­rol­o­gist or a geri­a­tri­cian, or an internist—introduces her­self to her new patient and to his wife, and sits down to lis­ten. The silver-haired hus­band and his wife, who still car­ries her­self like the var­sity ten­nis player she was in col­lege, seem alert and engaged, if wor­ried. The doc­tor is engaged, as well. She knows that she has more time to devote to hear­ing this couple’s story than a fifteen-minute office visit would allow.

Although the physi­cian has been trained in the clas­si­cal med­ical model, where advice on dis­ease pre­ven­tion and healthy lifestyles fall out­side her purview, she has moved beyond the confines of that lim­it­ing stan­dard. She knows that many elderly peo­ple have more than one med­ical con­di­tion, a his­tory that a doc­tor with a two-thousand– patient work­load would not be able to probe—no mat­ter what sort of health ser­vices she wanted to pro­vide. As she jots down notes about the patient and his com­plaint about mem­ory loss, she slips in ques­tions about cur­rent events. The con­ver­sa­tion flows nat­u­rally, but it is in fact a guided con­ver­sa­tion designed to assess the patient’s mem­ory. The doc­tor asks about fam­ily his­tory, social his­tory, and then makes inquiries about organ systems—heart, lungs, stom­ach, gut, uri­nary tract. The patient recalls quite a bit about his med­ical his­tory, but he strug­gles once or twice to find the right word. His wife, a bit anx­ious, rushes to fill in the gap.

When the his­tory is com­plete, the neu­rol­o­gist asks the patient to don a cot­ton gown, and she leaves the room for a bit to give the cou­ple some pri­vacy. When the doc­tor returns, she does a phys­i­cal exam­i­na­tion and selects a set of tests to order from the lab: she asks for sam­ples of blood and urine, but decides no x-rays or MRIs or other scans are needed at this point. A neu­ropsy­chol­o­gist comes in, greets the cou­ple by name, and leads them to an adjoin­ing room, where the man will be given a more for­mal mem­ory test and a social worker will join them to come up with an imme­di­ate plan for action.

That plan will rec­om­mend med­ica­tions cur­rently on the mar­ket, which may give a small boost, and non­phar­ma­ceu­ti­cal inter­ven­tions. In a more tra­di­tional set­ting, many of these treat­ments would fall out­side the bounds of the cur­rent med­ical model. But in the cog­ni­tive shop, all rea­son­able and safe inter­ven­tions are dis­cussed and con­sid­ered by the staff, includ­ing dietary adjust­ments, sup­ple­ments, lifestyle adjust­ments, exer­cise pro­grams, games and puz­zles, and other meth­ods used to chal­lenge the brain. But the per­son who dis­cusses these inter­ven­tions is not the physi­cian. The cog­ni­tive shop has a Nav­i­ga­tor, a posi­tion that may seem unfa­mil­iar because it is so new. The Nav­i­ga­tor works in a room with a com­fort­able leather couch, and a large flat screen on one wall. She offers the cou­ple a cup of green tea, and then turns on a lap­top com­puter designed to project a sim­ple Google search page on the screen. She does not know every­thing, of course, but she is not expected to. With the Inter­net as her aid, all infor­ma­tion about mem­ory loss and Alzheimer’s dis­ease is avail­able. Her skill is as a human search engine.

The retired busi­ness­man and his wife have scores of ques­tions for the Nav­i­ga­tor: Is there a sup­port group for spouses nearby? How can I get help clean­ing the house? Is there a gro­cer who deliv­ers? If we change our diets, will it stave off demen­tia? What about dri­ving? Do our chil­dren have some genetic risk of devel­op­ing the same prob­lem? Are there any clin­i­cal trial pro­grams avail­able? What, if any­thing, should we tell our friends? Our grand­chil­dren? The Nav­i­ga­tor clicks on cer­tain Web sites that are chock-full of use­ful infor­ma­tion, on every­thing from diet to polit­i­cal activism on Alzheimer’s dis­ease. The Nav­i­ga­tor prints out a packet that is espe­cially tai­lored for the hus­band and wife, and has infor­ma­tion they can give to their adult chil­dren on what to expect, and what help might be needed down the road. Finally, the Nav­i­ga­tor enrolls them in an online site that coor­di­nates vol­un­teer “helpers” in their com­mu­nity, and walks them through a form they may need in the future to file an insur­ance claim for a home health aide. She asks if there is any­thing else they need; grate­ful, but slightly over­whelmed, the cou­ple takes the sheaf of infor­ma­tion and sched­ules a series of follow-up appoint­ments. Although the follow-up vis­its are not with the neu­rol­o­gist, the cou­ple believes they are in good hands with the cog­ni­tive shop staff, and knows that a doc­tor will over­see any med­ical needs that might arise.

Too good to be true? Not really. Given the fact that Alzheimer’s dis­ease is already the nation’s third most expen­sive dis­ease, cost­ing the gov­ern­ment more than $100 bil­lion per year, there is every rea­son to be open to exper­i­men­ta­tion with new ways of deliv­er­ing care.2 And care that involves the entire fam­ily, in an eas­ily acces­si­ble neigh­bor­hood set­ting, makes sense for a dis­ease that is, at its essence, a fam­ily dis­ease. In 2009, the Alzheimer Study Group esti­mates, 10 mil­lion care­givers will pro­vide 94 bil­lion hours of phys­i­cally demand­ing, emo­tion­ally drain­ing, uncom­pen­sated care.3 Although the cog­ni­tive shop may seem finan­cially out of reach, when weighed against cur­rent prac­tice, it is more likely to reduce med­ical costs. The cog­ni­tive shop dis­trib­utes high-quality care to the com­mu­nity rather than con­cen­trat­ing such care at cen­tral­ized tertiary-care cen­ters, it reduces physi­cian con­tact time by hav­ing a staff on site that are geared to cog­ni­tive health issues, it may delay entry to assisted liv­ing facil­i­ties and pre­vent vis­its to the emer­gency room, it con­sol­i­dates care around a major prob­lem that is now han­dled by a highly frag­mented sys­tem, it addresses the needs and ques­tions of fam­i­lies, and it adds value to the prac­tices of local primary-care physi­cians. Because not all of the ser­vices avail­able in the cog­ni­tive shop are reim­bursed by pub­lic and pri­vate health insur­ance, the cog­ni­tive shop uses a net­work approach to fund­ing: some money comes from pri­vate phil­an­thropy, some from grants, and some from insur­ance. In addi­tion, the shop works with part­ner orga­ni­za­tions in the neighborhood—a uni­ver­sity health club, a local dieti­cians’ group, a yoga instruc­tor, and a local com– puter guru who is an expert in set­ting up online social net­work­ing sites—to sup­ply a net­work of low-cost services.

Patient-centered move­ments have pushed the med­ical estab­lish­ment before. The hos­pice move­ment, as we have noted, restored a level of human­ity to the wrench­ing process of death and dying. Breast can­cer patients, a tra­di­tion­ally well-organized, vocal group, demanded alter­na­tive treat­ments to the dis­figur­ing rad­i­cal mas­tec­tomy in the 1970s, and new research blos­somed that changed stan­dards. AIDS patients and care­givers adopted tac­tics from the civil rights move­ment of the 1960s to bring pub­lic atten­tion to the rise of the human immun­odefi­ciency virus (HIV) in the early 1980s. New exper­i­ments in deliv­er­ing pri­mary med­ical care, such as the “med­ical house” move­ment that gath­ers care together in one set­ting, offer a path­way toward health­care reform.

Although many details remain to be worked out, the cog­ni­tive shop offers a sim­i­lar sort of new par­a­digm for Alzheimer’s dis­ease care and, more impor­tant, Alzheimer’s dis­ease pre­ven­tion. It draws together, under one roof, three key steps in a multi-pronged assault on the many cumu­la­tive insults that even­tu­ally lead to Alzheimer’s dis­ease. Each step involves a care team with physi­cians and lay experts work­ing in con­cert to keep the needs of patients and fam­i­lies at the forefront:

Step One: Pre­ven­tion. We now have good evi­dence for a set of pre­ven­tive mea­sures, includ­ing diet, exer­cise, and cog­ni­tive stim­u­la­tion, that can be under­taken. If adopted, these inter­ven­tions can delay the onset of the disease.

Step Two: Early detec­tion. It is essen­tial to detect Alzheimer’s dis– ease in the brain before a per­son becomes impaired. This means using the tools of genomic med­i­cine and twenty-first-century med­i­cine: genetic pre­dic­tions, bio­marker test­ing, brain imag­ing, and base­line neu­ropsy­cho­log­i­cal testing.

Step Three: A per­son­al­ized approach to a pro­gram of early inter­ven­tion that helps patients, fam­i­lies, and care­givers nav­i­gate the thicket of infor­ma­tion on the Inter­net, and make sense of prod­ucts on the market.

These steps, taken together, will help patients, fam­i­lies, care­givers, and doc­tors with the bur­den of an impend­ing demo­graphic explo­sion in Alzheimer’s cases—and estab­lish a cul­ture of guided exper­i­men­ta­tion that can only inform the twenty-first-century debate about how to deliver healthcare.

To Learn More and Order Book: click The Alzheimer’s Solu­tion: How Today’s Care Is Fail­ing Mil­lions– and How We Can Do Bet­ter, by Ken­neth S. Kosik, MD, and Ellen Clegg

NOTES

1. “A National Alzheimer’s Strate­gic Plan: The Report of the Alzheimer’s

Study Group,” p. 5, http://www.alzstudygroup.org (accessed August 8, 2009).

2. Ibid, p. 4.

3. Ibid.

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