Alzheimer’s Disease: is our Healthcare System Ready?

In the midst of much health­care reform talk, not enough atten­tion seems focused on ensur­ing health­care sys­tems’ pre­pared­ness to deal with cog­ni­tive health issues ‑with Alzheimer’s Dis­ease as the most dra­mat­ic exam­ple- which are pre­dict­ed to grow giv­en aging pop­u­la­tion trends.

Today is World Alzheimer’s Day, and the USA Today com­ments on a new report that makes stark predictions:
Glob­al Alzheimer’s cas­es expect­ed to rise sharply (USA Today)

- “The 2009 World Alzheimer’s Report, released today, esti­mates 35 mil­lion peo­ple world­wide are liv­ing with Alzheimer’s and oth­er forms of demen­tia. The fig­ure is a 10% increase over 2005 numbers.”

- “The num­ber of peo­ple affect­ed by Alzheimer’s is grow­ing at a rapid rate, and the increas­ing per­son­al costs will have sig­nif­i­cant impact on the world’s economies and health care sys­tems,” said Har­ry Johns, Pres­i­dent and CEO of the Alzheimer’s Asso­ci­a­tion. “We must make the fight against Alzheimer’s a pri­or­i­ty here in the Unit­ed States and world­wide,” he said.

- “The report by Lon­don-based non­prof­it Alzheimer’s Dis­ease Inter­na­tion­al (ADI), an inter­na­tion­al fed­er­a­tion of 71 nation­al Alzheimer orga­ni­za­tions (includ­ing the Alzheimer’s Asso­ci­a­tion), indi­cates that the num­ber of peo­ple with demen­tia is expect­ed to grow sharply to 65.7 mil­lion in 2030 and 115.4 mil­lion in 2050.”

Link to report: Here

The Alzheimer’s Asso­ci­a­tion is orga­niz­ing mul­ti­ple Mem­o­ry Walks to raise aware­ness and funds. You can learn more and join Here. (Per­haps a good oppor­tu­ni­ty to orga­nize a “walk­ing book group” as Arthur Kramer sug­gest­ed in the Sharp­Brains Guide?)

The City of San Fran­cis­co, led by its Depart­ment of Aging and Adult Ser­vices (DAAS), con­vened since 2008 an Alzheimer’s/ Demen­tia Expert Pan­el to iden­ti­fy gaps and issue rec­om­men­da­tions to address the grow­ing cri­sis in demen­tia care at the city lev­el, and is about to release a pio­neer­ing plan that may well influ­ence pub­lic health ini­tia­tives in oth­er cities and states. An inter­im doc­u­ment can be found here: 2020 Fore­sight-Strat­e­gy For Excel­lence in Demen­tia Care (pdf)

One of the major areas of focus for that strat­e­gy was Edu­ca­tion & Pre­ven­tion, and below we can share a sum­ma­ry of the pre­lim­i­nary find­ings and rec­om­men­da­tions. We will high­light the final report when ready.

ALZHEIMER’S/DEMENTIA EXPERT PANEL 

EDUCATION AND PREVENTION SUBCOMMITTEE 

FINDINGS AND RECOMMENDATIONS

The subcommittee’s charge was to con­sid­er how best to edu­cate the San Fran­cis­co com­mu­ni­ty about Alzheimer’s and relat­ed demen­tias to change atti­tudes, beliefs, behav­iors, stan­dards of prac­tice, and out­comes asso­ci­at­ed with the disease.

Spe­cif­ic top­ics addressed include:
· Pro­tec­tive fac­tors relat­ing to demen­tia, includ­ing risk fac­tors and brain health
· Ear­ly iden­ti­fi­ca­tion of dementia
· Ear­ly access to services
· Com­mu­ni­ty education
· Edu­ca­tion of pro­fes­sion­als and non­pro­fes­sion­als, includ­ing physi­cians, psy­chi­a­trists and psy­chol­o­gists, social work­ers, nurs­es, and oth­er care­givers, both paid care­givers and infor­mal care­givers such as fam­i­ly and friends
· Eth­i­cal issues
· Pol­i­cy issues

The dis­sem­i­na­tion of accu­rate infor­ma­tion about Alzheimer’s and relat­ed demen­tias can play an impor­tant role in delay­ing the onset of demen­tia, slow­ing dis­ease pro­gres­sion, and improv­ing the qual­i­ty of life for peo­ple with demen­tia and their care­givers and the oth­er peo­ple in their lives.

A great deal of infor­ma­tion about demen­tia is avail­able, but it is often frag­ment­ed, hard to find, or not deliv­ered to peo­ple when they need it. For exam­ple, the sub­com­mit­tee iden­ti­fied many good exam­ples of edu­ca­tion­al mate­ri­als appro­pri­ate for peo­ple who pro­vide infor­mal care­giv­ing ser­vices to peo­ple with demen­tia, but at the same time found that care­givers often receive no sup­port or infor­ma­tion about ear­ly symp­toms and lit­tle to no infor­ma­tion or refer­rals at the time their loved ones are diag­nosed. The oppo­site prob­lem is infor­ma­tion over­load, and the need to ensure that peo­ple receive infor­ma­tion when they need it and are able to han­dle it.

In addi­tion to ensur­ing that infor­ma­tion about demen­tia is orga­nized and avail­able, effec­tive edu­ca­tion and pre­ven­tion efforts will also require coun­ter­ing stig­ma asso­ci­at­ed with old­er adults and with dementia.

It is also impor­tant that edu­ca­tion and pre­ven­tion efforts be cul­tur­al­ly com­pe­tent, so as to address effec­tive­ly the needs of San Francisco’s diverse pop­u­la­tion. San Fran­cis­co is very eth­ni­cal­ly diverse with a large Asian Pacif­ic Islander pop­u­la­tion, a large His­pan­ic pop­u­la­tion, and a small­er African Amer­i­can pop­u­la­tion, with dif­fer­ent cul­tur­al atti­tudes toward demen­tia and the per­son who has it. Many peo­ple from dif­fer­ent racial and eth­nic com­mu­ni­ties, espe­cial­ly those who are mono-lin­gual, require assis­tance with deci­sion-mak­ing, and the paper­work required to estab­lish a Durable Pow­er of Attor­ney for Health Care.

Edu­ca­tion and pre­ven­tion ini­tia­tives must also account for dif­fer­ences in health lit­er­a­cy. This means that some infor­ma­tion must be designed for peo­ple with low lit­er­a­cy, some must be in lan­guages oth­er than Eng­lish, and mate­ri­als must be accessible—this may mean mak­ing mate­ri­als avail­able in Braille or large type, hav­ing audio ver­sions, and hav­ing mate­ri­als both online and in eas­i­ly-accessed neigh­bor­hood cen­ters. Final­ly, mate­ri­als should account for dif­fer­ences in learn­ing styles and pref­er­ences. One sub­com­mit­tee mem­ber sug­gest­ed that a video of a per­son with demen­tia could be a valu­able edu­ca­tion­al tool.

San Fran­cis­co also has a large les­bian, gay, bisex­u­al, and trans­gen­der (LGBT) pop­u­la­tion, many of whom are in their late six­ties, sev­en­ties, and eight­ies. While per­sons under age 50 tend to be more open about their sex­u­al iden­ti­ty, many of those in their lat­er years have remained clos­et­ed or return to the clos­et out of fear that their needs will not be met as they become unable to care for them­selves. Some have part­ners but are often alone when the part­ner dies. Many do not have a younger friend or rel­a­tive to serve as a care­giv­er should they devel­op dementia.

Demen­tia care is espe­cial­ly chal­leng­ing for old­er adults who live alone. While some have forged new famil­ial rela­tion­ships, many are alone, rely­ing on friends, neigh­bors, their land­lord, the cor­ner gro­cer, or their IHSS home care work­er for essen­tial care and support.

The work of edu­ca­tion and pre­ven­tion will involve a wide range of indi­vid­u­als and pub­lic and pri­vate enti­ties. As dis­cussed below, part­ner­ships with exist­ing pub­lic and pri­vate agen­cies will be need­ed to bet­ter dis­sem­i­nate high-qual­i­ty infor­ma­tion about demen­tia. Orga­ni­za­tions one doesn’t nor­mal­ly think of in con­nec­tion with health care or social ser­vices can play an impor­tant role. The Alzheimer’s Association’s Ear­ly Detec­tion Alliance with cor­po­rate employ­ers is a good exam­ple of an inno­v­a­tive pro­gram that lever­ages the pri­vate sec­tor in help­ing to raise aware­ness of the ear­ly signs of demen­tia and how to obtain a diag­nos­tic evaluation.

Nine key con­tent areas were iden­ti­fied that should be part of com­pre­hen­sive edu­ca­tion and pre­ven­tion efforts. Fol­low­ing are these areas with the cor­re­spond­ing key rec­om­men­da­tions. More detail is pro­vid­ed in the fol­low­ing sec­tion. These con­tent areas and rec­om­men­da­tions are not list­ed in pri­or­i­ty order.

o Risk Reduc­tion – Key rec­om­men­da­tion: Pro­mote cog­ni­tive health and cre­ate a cul­ture of “brain fit­ness” through men­tal stim­u­la­tion, social engage­ment, phys­i­cal exer­cise, and diet.

o Ear­ly Iden­ti­fi­ca­tion of Demen­tia – Key rec­om­men­da­tion: Edu­cate peo­ple about the signs of demen­tia, how they dif­fer from nor­mal aging, and when and where to seek a diagnosis.

o What To Expect as the Dis­ease Pro­gress­es – Key rec­om­men­da­tion: Offer diag­nosed indi­vid­u­als, care­givers, and health care providers infor­ma­tion about what to expect through­out the course of Alzheimer’s and relat­ed dis­or­ders, which will help with future planning.

o Ser­vices and Resources – Key rec­om­men­da­tion: Ensure that care­givers are aware of and have access to com­mu­ni­ty resources, train­ing and support.

o Care­giv­er Well­ness and Sup­port – Key rec­om­men­da­tion: Help care­givers under­stand the stress­es inher­ent in car­ing for a per­son with demen­tia and pro­vide resources for self-care.

o Dis­ease Man­age­ment for Mild, Mod­er­ate, & Advanced Demen­tia, Includ­ing End-of-Life Issues – Key rec­om­men­da­tion: Effec­tive man­age­ment of ear­ly to mod­er­ate demen­tia can slow the advance of cog­ni­tive impair­ment, reduce the impact of co-mor­bid­i­ty, and delay entrance into insti­tu­tion­al care. Informed med­ical man­age­ment of late stage and end-of-life co-mor­bidi­ties will decrease unnec­es­sary treat­ment and ease the bur­den and suf­fer­ing of the per­son with demen­tia and care­giv­er at the end of life.

o Advanced Care Plan­ning – Key rec­om­men­da­tion: Advance care plan­ning can help fos­ter greater patient and care­giv­er under­stand­ing of the patient’s med­ical con­di­tion, pro­mote more patient-cen­tered care, and ensure that a person’s pref­er­ences are hon­ored at the end of life.

o Eth­i­cal Issues – Key rec­om­men­da­tion: Cre­ate an ethics review committee/group to con­sult on dif­fi­cult eth­i­cal sit­u­a­tions involv­ing per­sons with dementia.

o Emer­gency Pre­pared­ness and Safe­ty – Key rec­om­men­da­tion: Pro­mote aware­ness of steps to take to pre­pare for an emer­gency and to address com­mon dan­ger­ous behav­iors preva­lent in per­sons with demen­tia so as to avoid cat­a­stroph­ic outcomes.

Edu­ca­tion and pre­ven­tion efforts should tar­get the San Fran­cis­co pop­u­la­tion, though cer­tain inter­ven­tions will need to focus on spe­cif­ic seg­ments. For exam­ple, detailed infor­ma­tion about dis­ease man­age­ment is most appro­pri­ate for pro­fes­sion­al and fam­i­ly care­givers. The gen­er­al pub­lic should under­stand that demen­tia is a con­di­tion caused by dis­eases, how to rec­og­nize the signs of demen­tia, and ide­al­ly should have some infor­ma­tion about avail­able resources.

The sub­com­mit­tee iden­ti­fied spe­cif­ic infor­ma­tion needs for:
· Per­sons with dementia
· Infor­mal care­givers as well as oth­er fam­i­ly, friends, and neighbors
· Physicians
· Allied health care professionals
· Oth­er pro­fes­sion­al care­givers, includ­ing those work­ing in home care, assist­ed liv­ing, and nurs­ing home settings
· Care managers
· Social work­ers and oth­er social ser­vice providers
· Elder law attorneys
· Adult Pro­tec­tive Services
· Emer­gency and safe­ty offi­cers, includ­ing police, fire, and EMTs
· Gate­keep­ers such as postal work­ers and meal deliv­ery services

In a lim­it­ed fund­ing envi­ron­ment, edu­ca­tion and pre­ven­tion strate­gies will have to be pri­or­i­tized. Detailed find­ings and rec­om­men­da­tions for each of these con­tent areas follow.

—

- New Alzheimer’s report Here

- The Alzheimer’s Asso­ci­a­tion is orga­niz­ing mul­ti­ple Mem­o­ry Walks. Learn more and join Here. (Per­haps a good oppor­tu­ni­ty to orga­nize a “walk­ing book group” as Arthur Kramer sug­gest­ed in the Sharp­Brains Guide?)
— The City of San Fran­cis­co inter­im doc­u­ment: 2020 Fore­sight-Strat­e­gy For Excel­lence in Demen­tia Care (pdf)