My Alzheimer's Archive of Articles and Memoranda

DRAFT FRAMEWORK FOR THE NATIONAL PLAN TO ADDRESS ALZHEIMER’S DISEASE

2012-01-23T15:37:00.000-08:00

PDF Version: http://aspe.hhs.gov/daltcp/napa/Framework-Draft.pdf (12PDF pages)

Goal 1: Prevent andEffectively Treat Alzheimer’s Disease by 2025

Researchcontinues to expand our understanding of the causes of, treatments for, andprevention of Alzheimer’s disease. Basic research elucidates the molecular andcellular process underlying AD, allowing the identification of potentialtargets for intervention. Through the drug development process and thetranslation of behavioral interventions, treatments are tested in preclinicalexperiments for their effectiveness. Promising interventions are furtherrefined and tested to ensure they are safe and effective for the public. Whilethe ultimate goals are to develop effective prevention and treatment modalitiesby 2025, ongoing research and clinical inquiry can inform our ability to delayonset of Alzheimer’s disease, minimize its symptoms, and delay its progression.Under this goal, HHS will prioritize and accelerate the pace of scientificresearch and ensure that as evidence-based solutions are identified they arequickly translated, put into practice, and brought to scale so that individualswith Alzheimer’s disease can benefit from increases in scientific knowledge.

Strategy 1.A: Identify Research Priorities and Milestones

Researchagencies undertake research planning processes on an ongoing basis, but aspecial effort is needed to identify the priorities and milestones to achieveGoal 1 and ensure that appropriate stakeholders are involved in the planningprocess. In May 2012, the National Institute on Aging (NIA) of the NationalInstitutes of Health will convene a research summit to provide expert inputinto identification of research priorities, to explore public and privateresearch collaborations, and to establish strategies and milestones for anambitious plan to slow progression, delay onset, and prevent Alzheimer’sdisease. The summit will include national and international experts inAlzheimer’s disease and dementia research, public and private stakeholders, andmembers of the Advisory Council on Alzheimer’s Research, Care, and Services.Summit proceedings will be open to the public.

Strategy 1.B: Enhance Scientific Research Aimed at Preventing andTreating Alzheimer’s Disease

HHSand its Federal partners will continue to aggressively conduct clinical trialson pharmacologic and non-pharmacologic ways to prevent Alzheimer’s disease andmanage and treat its symptoms. HHS will build on recent advances and expandresearch to identify molecular and cellular mechanisms and genetic research toidentify risk and protective factors. To achieve this strategy, newpartnerships and outreach efforts may be needed to ensure that enough peopleare enrolled in clinical trials to examine the effectiveness of promisinginterventions.

Strategy 1.C: Accelerate Efforts to Identify Early andPresymptomatic Stages of Alzheimer’s Disease

Significantadvances in the use of imaging and biomarkers in brain, blood, and spinalfluids have made it possible to detect the onset of Alzheimer’s disease, trackits progression and monitor the effects of treatment in people with thedisease. Without these advances, these neurodegenerative processes could onlybe evaluated in non-living tissues. Accelerated research will improve andexpand the application of biomarkers in research and practice. These advanceshave shown that the brain changes that lead to Alzheimer’s disease begin up to10 years before symptoms. Identifying imaging and other biomarkers inpresymptomatic people will facilitate earlier diagnoses in clinical settings,as well as aid in the development of more efficient interventions to slow ordelay progression.

Strategy 1.D: Coordinate Research with International Public andPrivate Entities

Tofacilitate communication and collaboration, build synergy, and leverageresources, it is imperative that research across nations and across funders becoordinated. All funders could benefit from a comprehensive inventory ofresearch investments to address AD. Similarly, better internationalcoordination may help leverage resources and expand the impact of researchfindings.

Strategy 1.E: Facilitate Translation of Findings into MedicalPractice and Public Health Programs

Currently,promising research and interventions are published in the research literature andpresented at scientific meetings. Additional steps are needed to highlightpromising findings and to facilitate dissemination and implementation ofeffective interventions to the general public, medical practitioners, industry,and public health systems quickly and accurately. This may require newpartnerships within the Federal Government and with the private sector, andoutreach through new mechanisms.

Goal 2: Enhance CareQuality and Efficiency

Providingall people with Alzheimer’s disease with the highest-quality care in the mostefficient manner requires a multi-tiered approach. High-quality care requiresan adequate supply of professionals with appropriate skills, ranging fromdirect-care workers to community health and social workers to primary careproviders and specialists. High-quality care should be provided from the pointof diagnosis through the end-of-life and in settings including people’s homes,doctor’s offices, hospitals, and nursing homes. Care quality should be measuredaccurately and coupled with quality improvement tools. Further, given thecomplex care needs of people with Alzheimer’s disease, high-quality andefficient care is dependent on smooth transitions between care settings andcoordination among health and long-term care service providers.

Strategy 2.A: Build a Workforce with the Skills to ProvideHigh-Quality Care

Theworkforce that cares for people with Alzheimer’s disease includes health andlong-term care providers such as primary care physicians; specialists such asneurologists, geriatricians, and psychiatrists; community health workers;social workers; and direct-care workers like home health aides and certifiednursing assistants, who provide care at home or in long-term care facilities.Major efforts by both VA and the Health Resources and Services Administration(HRSA), including expanded training opportunities created in the AffordableCare Act, support geriatric training for physicians, nurses, and other healthworkers.¹ Enhanced specialist training is alsoneeded to prepare these practitioners for the unique challenges faced bypatients with Alzheimer’s disease. Work is needed to expand the capacity of theprimary care community to care for patients with Alzheimer’s disease anddementia-specific capabilities within the direct-care workforce need to beexpanded and enhanced.

Strategy 2.B: Ensure Timely and Accurate Diagnosis

Fartoo many people with Alzheimer’s disease are not diagnosed until their symptomshave become severe.² Timely diagnosis gives people withthe condition and their families time to plan and prepare for the future,leading to more positive outcomes for both.^3, 4 For many, the inability to accesshealth care due to a lack of insurance is a major concern. This is particularlyimportant for individuals with younger-onset disease who may not yet beeligible for Medicare. Much of that insecurity will be alleviated as theAffordable Care Act, with its elimination of pre-existing conditionslimitations, is implemented. Even with access to affordable care forindividuals, the health care workforce needs tools that can help ensure timelyand accurate diagnoses. Research has helped identify some assessment tools thatcan be used to rapidly assess patients showing signs and symptoms ofAlzheimer’s disease and to help health care providers make a diagnosis or referfor further evaluation.⁵

Strategy 2.C: Educate and Support Patients and Families UponDiagnosis

Often,even though a physician has identified cognitive impairment, the patient andhis or her family are not told of the diagnosis.⁶ Further, once a diagnosis is madeand disclosed, as few as half of patients and families receive counseling,support, or information about next steps.⁷ This information is important,especially for early-stage patients who experience positive outcomes whenphysicians are involved in planning and advance care counseling.⁸

Strategy 2.D: Identify and Implement High-Quality Dementia CareGuidelines and Measures Across Care Settings

Guidelinesfor delivery of high-quality care and measures of quality are needed to ensurepeople with Alzheimer’s disease receive high-quality care in the many differentsettings where they are treated. These guidelines should be tailored to thestages of the disease and cover the myriad care settings in which care isdelivered, such as in the home, physician’s office, and long-term carefacility. These guidelines should also take into account how care might bemodified in the context of co-occurring chronic conditions in people withAlzheimer’s disease. Quality measures should be based on such guidelines andtrack whether recommended care is being provided.

Strategy 2.E: Ensure that People with Alzheimer’s DiseaseExperience Safe and Effective Transitions Between Care Settings and Systems

Atransition between providers and care settings is a complex time of caredelivery for all patients but especially for frail elders or other individualswith Alzheimer’s disease. Transitions include moves into acute care hospitals,from hospitals to post-acute settings such as skilled nursing facilities or thehome, or from nursing facilities to hospitals. People with Alzheimer’s diseaseare at high risk of adverse events due to poor communication and other careprocess deficiencies during their frequent transitions.⁹

Strategy 2.F: Advance Coordinated and Integrated Health andLong-Term Care Services and Supports for Individuals Living with Alzheimer’sDisease

Coordinatingthe care received by people with Alzheimer’s disease from different providerscan help reduce duplication and errors and improve outcomes.¹⁰ Despite a general consensus thatcare coordination is important, more research is needed to determine how bestto provide such care in a high-quality and cost-efficient manner. These answerswill help in the implementation of care coordination models for people withAlzheimer’s disease.

Strategy 2.G: Improve Care for Populations DisproportionallyAffected by Alzheimer’s Disease

Threegroups of people are unequally burdened by Alzheimer’s disease: People withyounger-onset Alzheimer’s disease, racial and ethnic minorities, and peoplewith intellectual disabilities. Approximately 200,000 Americans have younger-onsetAlzheimer’s disease, which is characterized by symptoms prior to age 60.Because Alzheimer’s disease primarily affects older adults, the youngerpopulation faces unique challenges with diagnosis, care, and stigma. Otherpopulations disproportionally burdened by Alzheimer’s disease are racial andethnic minorities who are at greater risk for developing Alzheimer’s diseaseand face barriers to care after onset. Finally, people with certainintellectual disabilities almost always develop Alzheimer’s disease as theyage.

Goal 3: Expand Patientand Family Support

Peoplewith Alzheimer’s disease and their families need supports that go beyond thecare provided in formal settings such as doctor’s offices, hospitals, ornursing homes. Families and other informal caregivers play a central role here.Supporting people with Alzheimer’s disease and their families and caregiversrequires giving them the tools that they need, helping to plan for futureneeds, and ensuring that safety and dignity are maintained.

Strategy 3.A: Ensure Receipt of Culturally Sensitive Education, Training,and Support Materials

Caregiversreport that they feel unprepared for some of the challenges of caring for aperson with Alzheimer’s disease--for example, caring for a loved one with sleepdisturbances, behavioral changes, or in need of physical assistance can be anenormous challenge.¹¹ Giving caregivers the informationand training that they need in a culturally sensitive manner helps them betterprepare for these and other challenges. Examples of potential actions underthis strategy include identifying the areas of training and educational needs,identifying and creating culturally-appropriate materials, distributing thesematerials to caregivers, and using information technology to support personswith Alzheimer’s disease and their caregivers.

Strategy 3.B: Enable Family Caregivers to Continue to Provide CareWhile Maintaining Their Own Health and Well-Being

Eventhough informal caregivers usually prefer to provide care to their loved onesin their home or other community settings, eventually the round-the-clock careneeds of the person with Alzheimer’s disease often necessitate nursing homeplacement. While they are providing care, supports for families and caregiverscan help lessen feelings of depression and burden and help delay nursing homeplacement.^12, 13, 14 Examples of actions to furthersupport informal caregivers are identifying their unmet support needs;developing, disseminating and expanding interventions; and highlightingsupports during crisis situations.

Strategy 3.C: Assist Families in Planning for Future Long-TermCare Needs

Thevast majority of people do not think about or plan for the long-term servicesand supports they will need until they experience a disability or Alzheimer’sdisease. Many Americans incorrectly believe that Medicare will cover most ofthe costs of these supportive services.^15, 16 Unfortunately, by the time care isneeded, it is difficult to get coverage in the private long-term care insurancemarket, and options are limited.¹⁷ Educating people about theirpotential need for long-term services and supports and the significantadvantages of planning ahead for these services encourages timely preparation.Planning ahead can help ensure that individuals with Alzheimer’s disease receivecare in the setting they prefer and that their dignity is maintained.

Strategy 3.D: Maintain the Dignity, Safety, and Rights of Peoplewith Alzheimer’s Disease

Peoplewith Alzheimer’s disease are particularly vulnerable to financial exploitation,physical or emotional abuse, and neglect both at home and in residential carefacilities.¹⁸ Reports of elder abuse are handledby state Adult Protective Services, which is charged with responding to andresolving alleged abuse. State survey and certification agencies investigateabuse in licensed facilities, which may include nursing homes, assisted livingfacilities, and board and care homes. AoA’s National Long-Term Care Ombudsmenare advocates for residents of nursing homes, board and care homes, assistedliving facilities, and similar adult care facilities and can help addressissues related to potential abuse or neglect.

Goal 4: Enhance PublicAwareness and Engagement

Mostof the public is aware of Alzheimer’s disease: more than 85 percent of peoplesurveyed can identify the disease and its symptoms. Alzheimer’s disease is alsoone of the most-feared health conditions. Yet there are widespread andsignificant public misperceptions about diagnosis and treatment.¹⁹ These misperceptions lead todelayed diagnosis and to people with the disease and their caregivers feelingisolated and stigmatized. Enhancing public awareness and engagement is animportant goal because it forms the basis for advancing the other goals of theNational Plan. A better understanding of Alzheimer’s disease will help engagestakeholders who can help address the challenges faced by people with thedisease and their families. These stakeholders include a range of groups suchas health care providers who care for people with Alzheimer’s disease and theircaregivers, employers whose employees request flexibility to care for a loved onewith the disease, women’s and other groups whose members are caregivers, andbroader aging organizations. The strategies under this goal are designed toeducate these and other groups about the disease.

Strategy 4.A: Educate the Public about Alzheimer’s Disease

Greaterpublic awareness of Alzheimer’s disease can encourage families to seekassessment, reduce isolation and misunderstanding felt by caregivers, and helplink people in need to accurate information, resources and services.

Strategy 4.B: Work with State and Local Governments to ImproveCoordination and Identify Model Initiatives to Advance Alzheimer’s DiseaseAwareness and Readiness Across the Government

Stateand local governments are working to help address challenges faced by peoplewith Alzheimer’s disease and their caregivers. Nineteen states and a handful oflocal entities have published plans to address Alzheimer’s disease that covermany of the same issues as the National Plan.²⁰ Leveraging the available resourcesand programs across these levels of government will aid in the success of theseefforts.

Goal 5: Improve Data ToTrack Progress

TheFederal Government is committed to better understanding Alzheimer’s disease andits impact on people with the disease, families, the health and long-term caresystems, and society as a whole. HHS will make efforts to expand and enhancedata infrastructure and make data easily accessible to federal agencies andother researchers. This data infrastructure will help HHS in its multi-levelmonitoring and evaluation of progress on the National Plan.

Strategy 5.A: Enhance HHS’ Ability to Track Progress

Toaddress policy questions and plan and evaluate new initiatives, the FederalGovernment needs improved data on people with Alzheimer’s disease, theircaregivers, and the care and supports that they use.

Strategy 5.B: Monitor Progress on the National Plan

TheNational Plan is intended to be a roadmap for accomplishing its five goals. Itis a document that is designed to be updated regularly. HHS is committed totracking progress and incorporating findings into an updated National Planannually.

Appendix: List ofParticipating Departments and Agencies

ACF	Administration for Children and Families
ADD	Administration on Developmental Disabilities
AoA	Administration on Aging
AHRQ	Agency for Healthcare Research and Quality
ASPA	Assistant Secretary of Public Affairs
ASPE	Assistant Secretary for Planning and Evaluation
CDC	Centers for Disease Control and Prevention
CMMI	Center for Medicare and Medicaid Innovation Center
CMS	Centers for Medicare and Medicaid Services
DoD	U.S. Department of Defense
FDA	Food and Drug Administration
HHS	U.S. Department of Health and Human Services
HRSA	Health Resources and Services Administration
IHS	Indian Health Service
NIA	National Institute on Aging
NIH	National Institutes of Health
NSF	National Science Foundation
OASH	Office of the Assistant Secretary for Health
ONC	Office of the National Coordinator of Health Information Technology
SAMHSA	Substance Abuse and Mental Health Services Administration
VA	Department of Veterans Affairs

References

1. Health Resources and Services Administration website. Geriatrics& allied health: Comprehensive geriatric education programs. Available at:http://bhpr.hrsa.gov/grants/geriatrics/.

2. Bradford A, Kunik ME, Schulz P, et al. Missed and delayed diagnosisof dementia in primary care: Prevalence and contributing factors. AlzheimerDis Assoc Disord, 2009; 23(4):306-314.

3. Gaugler JE, Kane RL, Kane RA, et al. Unmet care needs and keyoutcomes in dementia. J Am Geriatr Soc, 2005; 53:2098-2105.

4. Mittelman MS, Haley WE, Clay OJ, et al. Improving caregiver well-beingdelays nursing home placement of patients with Alzheimer disease. Neurology,2006; 67:1592-1599.

5. Jack CR Jr, Albert M, Knopman DS, et al. Introduction to revisedcriteria for the diagnosis of Alzheimer’s disease: National Institute on Agingand the Alzheimer’s Association workgroup. Alzheimers Dement, 2011;7:in press.

6. Johnson H, Bouman WP, Pinner G. On telling the truth in Alzheimer'sdisease: A pilot study of current practice and attitudes. IntPsychogeriatr, 2000; 12(2):221-229.

7. Chodosh J, Mittman BS, Connor KI. Caring for patients with dementia:How good is the quality of care? Results from three health systems. JAm Geriatr Soc, 2007; 55(8):1260-1268.

8. Cavalieri TA, Latif W, Cieselski J, Ciervo CA Jr, Forman LJ. How physiciansapproach advance care planning in patients with mild to moderate Alzheimer'sdisease. J Am Osteopath Assoc, 2002; 102(14):291-298.

9. Cohen CA, Pushkar D. Transitions in care: Lessons learned from alongitudinal study of dementia care. Am J Geriatr Psychiatr, 1999;7(2):139-146.

10. Callahan CM, Boustani MA, Unverzagt FW, et al. Effectiveness ofcollaborative care for older adults with Alzheimer disease in primary care: Arandomized controlled trial. JAMA, 2006; 295:2148-57.

11. DesRoches C, Blendon R, Young J, et al. Caregiving in thepost-hospitalization period: Findings from a national survey.Nurs Econ,2002; 20:216-221,224.

12. Mittelman MS, Roth DL, Haley WE, Zarit SH. Effects of a caregiverintervention on negative caregiver appraisals of behavior problems in patientswith Alzheimer’s disease: Results of a randomized trial. J Gerontol:PsycholSci, 2004; 59B: P27-P34.

13. Sörensen S, Pinquart M, Duberstein P. How effective are interventionswith caregivers? An updated meta-analysis. Gerontologist, 2002;42(3):356-72. Available at:http://www.ncbi.nlm.nih.gov/pubmed/12040138.

14. Mittelman MS, Haley WE, Clay OJ, Roth DL. Improving caregiverwell-being delays nursing home placement of patients with Alzheimer disease. Neurol,2006; 67(9):1592–1599.

15. Kemper P, Harriet LK, Alecxih L. Long-term care over an uncertainfuture: What can current retirees expect? Inquiry, December 2005;42(4):335-350.

16. MetLife Mature Market Institute. MetLife long-term care IQ: Removingmyths, reinforcing realities. September 2009.

17. Mathematica Policy Research, Inc. Shoring up the infrastructure forlong-term care: What do vulnerable adults know about their options? IssueBrief, July 2004.

18. Government Accountability Office. Elder justice: Stronger federalleadership could enhance national response to elder abuse. 2011.Available at:https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022385.Accessed November 15, 2011.

19. Blendon RJ. Georges J., et al. Key Findings from a five-countrysurvey of public attitudes about Alzheimer’s disease. Poster presented at AAIC,July 2011.

20. Alzheimer’s Association. State government Alzheimer’s disease plans.Available at: http://www.alz.org/join_the_cause_state_plans.asp.Accessed November 28, 2011.

Life Can Be Awful. Now It Has Gotten Worse! Richard Taylor

2012-01-23T15:32:00.001-08:00

SUNDAY,JANUARY 22, 2012

We cannot let these foxes be the spokespersonsfor us. We cannot let them spend all our money on bench/cure research andrelatively little on psychosocial research. We cannot let them decide for uswho should be the focus of their efforts and who can be ignored.

By Richard Taylor

Life can be awful. Now it has gotten worse! (Paraphrase of WoodyAllen’s words and view of life)

On Watching and Hearing the Wisdom of the new Federal Committee to write a planto plan to write a plan (now to write a draft of a plan to plan to write aplan) of how the Federal Government should lead/fund/Create the efforts of afew to “create a world without Alzheimer’s on or just before or after January1, 2025."

I spent the last few dayswatching the self-anointed leaders of the Alzheimer’s crisis take a stepbackwards from their own promise (a plan to write a plan) and produce aframework of a plan to write a plan). And then spend a day telling each otherthe framework is not enough.

Finally I had to turn it off. Enough was/is enough.

I commit to spend theremainder of my public life pointing out the fallacies, half-truths, myths, andstigmas these folks are creating and reinforcing out of one side of their mouths,while out of the other side comes their promise to undo what they persist increating. Of course they can still suck through a straw in the middle of theirmouths your support, donations, and prayers. And they can occasionally burp outa false hope or two every so often.

We cannot let these foxes be the spokespersons for us. We cannot let them spend all our money onbench/cure research and relatively little on psychosocial research. We cannotlet them decide for us who should be the focus of their efforts and who can beignored.

It's time for the chickens stand up and crow, to walk around a pick/peck. To beseen and heard.

Myths, half-truths, lies, and hoaxes are what we use as stand-ins to avoidthinking about specific individuals. True we demonize some, we lionize others.We take pity on some, and worship others. Yet everyone is someone, distinctlydifferent and fundamentally alike as you and I are with each other. But it iseasier, safer to think of classes of human beings - by sex, race, ethnicity,disease groups, etc.

If we continue to buy the lie that Alzheimer’s Disease is sole cause ofthe public health crisis we are dooming more than another generation to feel“left out” of the dementia discussion, of the dementia research, of thedementia support (such as it is) provided by organizations and governments.

This is wrong, wrong,wrong.

If we continue to but the hoaxes, half-truths and myths promoted byorganizations and researchers that all that is need is 13 more years, lots andlots more money spent quicker, and a committee or two to watch over the assuredprogress we are dooming the rest of the dementia community (those with adiagnosis of probably Alzheimer’s) to a life much emptier of quality, meaning,and joy while we wait for the clouds to part and the cure pill to come tumblingdown on January 1, 2025.

This is wrong, wrong,wrong.

What are we goanna dofor/about the increasingly bad state of life for 10 million Americans nowliving with some form of dementia, and 10 more millions of their care partners?What are the research priorities? Finding answers to today’s human problems, ormaking up a date when there will no longer be tomorrow’s problems.

Let us stop watching this happen. There is no plan, there is no science,and there is no growing consensus outside of a relatively small group ofresearchers, to find a cure on or near January 1, 2025.

Let us stand up and speak out.These emperors of Alzheimer’s are not the leaders who will address the dementiapublic health crisis.

They stand naked togetherand lacking little to no support from their scientific colleagues most of whomadmit we are not even close to understanding Alzheimer’s/Dementia. Remember thefindings of the NIH just last year?

Now comes a committee of the one eye (bench research) to proclaim “war onAlzheimer’s.” They eventell us the date the war will be over, if only we sacrifice the quality of lifeof those with it, so we can concentrate our energy, donations, money, prayersof finding a cure pill so no one else will ever get it and wecan finally after all who now have it die, live in a world without Alzheimer’s(but of course still filled with the other fifty or so forms of dementia).

This is wrong, wrong,wrong.

They are declaring war, tothe neglect of those who in whose name they want us to fight/donate. This war,as most wars comes down to power, influence, fame, and money. Though pure ofmotive in most of their minds and hearts, they have simply come to believetheir own hoaxes, lies, half-truths, and stigmas. These in their twisted mindsjustify the war.

They justify neglecting those in whose name the war is fraught, and write themoff as collateral and relatively inexpensive casualties. This war is aboutopening up nursing home beds, saving Medicare, reducing the federal deficit.For these are the reasons/evidence they advance to justify the war.

And, yes, there are occasionalwarnings of “this could happen to you if you don’t do and support what weask/need. And who is the enemy? What is the enemy? Dementia? Alzheimer’sDisease? Stigmas and hoaxes? The symptoms of the poor, suffering, soulless,dying twice barely human beings who are living with the symptoms?

Be careful not to wound them while you shoot at their symptoms. Be careful notto demonize them with your neglect of their humanity, your weapons of war whichmay or may not slow down, reverse, eliminate, and/or destroy the symptoms – butthen again the last 15 weapons (pills) we have developed have all failed,leaving broken hearts, broken half promises, crushed hopes in the minds andhearts of care partners and their partners
.
Please, please - For your own sake, the sakes of your family, and the rest ofthe world – stand up and speak out. We are quickly falling further and furtherbehind in the race they created to capture the hearts, minds, and money ofpoliticians and citizens.

They first redefine thedementia crises with the words “The Alzheimer’s Crises.” And then theyconvinced others with power that they are suddenly smart enough to this timefor sure truly claim the cure is just 13 years away with absolute certainty.

We all whispered to each other about how wrong this was. Wrote blogs, createdpetitions, made presentations to each other, fired off an occasional broad sidevia emails, and then we all went to bed.

They have stayed up all night, running focus groups, reinforcing fears andstigmas, lobbying for 20 years for something that was “soon to come, light atthe end of the tunnel, supported by breakthroughs. Claiming, now they know whatto do, how to do it, they just lack a few pennies to support their efforts.

Now they spread false hopes, reinforce stigmas, state wishes as facts – allwhile under the all-knowing eyes of the Executive and Legislative branches ofour government.

What is each of us goingto do about out this? What are some of us going to do about this? What shouldall of us do about this?

You decide. I have.

I Can! I Will!

Another way for you to stand up and speak out.

Alzheimer's in the Year 2025, or I Can't Believe Its Yogurt

2012-01-23T15:28:00.000-08:00

MONDAY,JANUARY 23, 2012

We need a real plan to keep persons livingwith Alzheimer's at home without bankrupting their spouses.

By Bob DeMarco
Alzheimer's ReadingRoom

It appears there is a great deal ofdissatisfaction with the recently released Draft Framework of the National Plan to AddressAlzheimer's Disease. The actual Plan should be forthcoming inMay.

The draft describes itself as a framework structured around fiveambitious goals:

· Prevent and Effectively Treat Alzheimer's Disease by 2025.

· Optimize Care Quality and Efficiency.

· Expand Patient and Family Support.

· Enhance Public Awareness and Engagement.

· Track Progress and Drive Improvement.

I have a first importantquestion. Where is the money coming from to finance this ambitious plan?

It is not unusual for a family to go brokewhile caring for a person living with Alzheimer's. This usually means Medicaid.Where is the money coming from to fund Medicaid for Alzheimer's patients?Correct me if I am wrong. Aren't we in the process of cutting funding forMedicare and Medicaid?

Does the committeeknow how many spouses exhaust all their savings, sell or lose their home, andend up "dead stone broke" themselves while caring for a person livingwith Alzheimer's?

Are we expecting them togo homeless and live under a bridge or in a tent city? Any actual plan toaddress this issue?

We need a real plan to keeppersons living with Alzheimer's at home without bankrupting their spouses orfamilies. Should we wait until 2025 to do this?

How did the committee arriveat the target date 2025 to "Prevent and Effectively TreatAlzheimer’s Disease"? Ouija board? Dart board? Where is the moneycoming from? If we can do it by 2025, what would it take to do it by 2020?

On Wednesday, January25, at 1:00 pm EST, the Cure Alzheimer's Fund is hosting anopen webinar, Two Sides of Abeta for the Layperson.

The webinar is open to readers of the Alzheimer'sReading Room, and anyone can attend via their computer.

If all goes well, you will be able to ask a question. Previously we published apodcast, The Plan to End Alzheimer's Disease by 2020.We obtained this podcast from Dr Rudy Tanzi. Rudy is a host of the webinar.

If you are little angry, and if you are looking for some answers, I suggest youattend the Cure Alzheimer's Fund webinar, and try to put in yourtwo cents in the form of a question about treatments and a cure for Alzheimer's

Go here to register now and reserve your place in thewebinar.

At the end of the day, it is going to be up to us to do something about this.I'll write more about that at another time.

Minding Our Second-Favorite Organ

2012-01-23T15:24:00.001-08:00

David Katz, M.D.

Director,Yale Prevention Research Center

GET UPDATES FROM DAVID KATZ,M.D.

Minding Our Second-FavoriteOrgan

Posted: 01/23/2012 8:39 am

As a preventive medicine physician who trulybelieves "if you don't have your health, you don't have anything,"our prevailing behaviors have always been hard to fathom.

The parent who simply can't find time to cook a family dinner can, always, findtime to take a kid to the ER or endocrinologist. People who can't afford mixedgreens can afford diabetes test strips.

People whocarefully and responsibly invest in the financial security of their retirement(although we know that's no guarantee of a good outcome!) routinely neglectaltogether any investment in their health. If money can be put aside for futurebenefit, why can't time be "put aside" -- invested in physicalactivity, eating well, getting enough sleep? It can be, of course -- but oursocial norms don't encourage it, and it doesn't happen. A standard-issue,responsible modern adult -- carefully tends their money, and neglects theirhealth. It's normal, and almost expected. But bizarre -- and often calamitouslycostly.

Manypeople reach retirement with the money they need, lacking the health they needto use that money for anything enjoyable. As a physician, it is excruciatingly painful to look into theimploring eyes of a retiree who has long anticipated their golden years -- andhas cultivated the bank account to underwrite it -- now disabled by progressivediabetes, lung disease, brain disease or heart disease that need not haveoccurred.

And it is all too common. I have seen, andcontinue to see, many such patients. Patients who reach retirement age withrobust good health and too few dollars come along, too, of course -- but farless often. And here's the news flash: Those with health but not much money are clearly ahappier group than those with money but not much health. I have met themon the intimate turf of clinical care, and they have told me so.

This isthe backstory for a careful consideration of the Alzheimer's disease crisis wenow face.

There hasbeen enormous attention of late to the grim and genuinely frightening problemof Alzheimer's disease. The problem is grim by its very nature -- there islittle we contemplate with greater dread than the loss of our minds, our veryselves. The problem is frightening at the personal level because we feelvulnerable to this increasingly common condition we don't know how to cure, andat the collective level, where estimates suggest it could cost the nation a trillion dollars annually by2050. There is also the terrible burden on family members, who must face thehigh demands of care, compounded by the heart-wrenching loss of a loved one whois still there, yet already gone.

It is inthis context that President Obama has declared a war of sorts on this scourge,calling for means of both prevention and treatment by2025, or even 2020. There is lively debate about how realistic the goal is-- although on that issue, I note that the best way to predict the future is to create it. You don'tget to the moon without committing to the trip.

To create the president's future,it will be important to develop new treatments, as it is for obesity and diabetes. But as withobesity and diabetes, it will be important not to let thehunt for breakthrough treatments become the tail that wags the dog.

Alzheimer'sis overwhelmingly a vascular disease, and thus overwhelmingly preventable.Estimates are less well established than for other chronic diseases, but itseems likely the risk can be trimmed by nearly 80 percent -- and perhapseliminated entirely but for the extremely genetically vulnerable -- by mindingour general health.

It is onlyfair and honest to concede that we do not have perfect defenses againstAlzheimer's. And, to some extent, we are hoisted on our own petard --vulnerable to this condition of advancing age because we are better at livinglonger than ever before.

But theevidence is strong, if not incontrovertible, that whatever the geneticunderpinnings, the epigenetics of Alzheimer's -- the exposures that influencehow genes behave -- are of profound importance. By and large, Alzheimer's is avascular disease. By and large, the practices that prevent cardiovasculardisease -- eating well, being active, avoiding tobacco -- slash the risk ofAlzheimer's.

Study after study after study after study that has shown an elimination of up to 80percent of all chronic disease with the application of lifestyle as medicinehas NOT carved out an exception for Alzheimer's. The evidence that we can alter gene expression with the powerof lifestyle almost certainly pertains to Alzheimer's as it does to cancer. Byminding our bodies, we can mind our minds, too. We can best mind both, byminding the short list of what matters most tohealth.

Available evidence suggests that controllingcardiac risk factors can lower dementia risk specifically by 50 percent ormore.

So see adoctor at regular intervals to have your blood pressure and cholesterolmonitored. High cholesterol can contribute to dementia by accelerating thedevelopment of atherosclerosis; controlling blood lipid levels with diet ormedication can protect against this. High blood pressure can damage the bloodsupply to the brain in several ways, and is the leading risk factor for stroke.At least one European study suggests that treatment of high blood pressure allby itself can cut dementia risk in half.

While thescientific evidence linking cigarettes to dementia per se is equivocal, the link between smoking andvascular disease is clear and strong. So avoid tobacco to protect your brain byprotecting the blood vessels that nourish it.

There is someevidence to support what most of us have heard about "brain foods."Fish consumption appears to protect brain function, most likely by contributingomega-3 fatty acids to the diet. An omega-3 oil supplement, one to two gramsdaily, is an alternative. Antioxidants in food appear to be protective as well,contributing to the reputations of blueberries, red wine and green tea.

But whilean inventory of potential brain foods can be assembled, the evidence is much strongerfor the importance of the overall dietary pattern.Eating well is as important to the brain as it is to the heart. Lower your riskof Alzheimer's with plenty of vegetables and fruits, whole grains, beans andlentils, olives and avocado, nuts and seeds. Limit consumption ofhighly-processed foods, fast foods, sugar, salt, saturated and trans fat.Physical activity, too, nurtures the health of body and mind alike.

There issome evidence that poorly controlled stress, lack of sleep and various nutrientdeficiencies -- vitamin E, vitamin C, and vitamins B12 and B6 in particular --may increase the risk of dementia.

Controllingstress, getting adequate sleep and a balanced diet with or without supplementsmay all confer protection.

Finally,population studies consistently suggest that those who exercise their brainsprotect their minds from dementia. Crossword puzzles and Sudoku are aerobicsfor your brain. Just as physical activity defends the body against aging andinfirmity, mental activity seems to help preserve the vitality of the brain. The Mayo Clinic andthe Alzheimer's Foundation,among others, provide nice summaries of prevention strategies online.

As we mind our mind by mindingour bodies, we can mind our business into the bargain. The price tag ofAlzheimer's -- and chronic disease in general -- threatens nothing less thanour national solvency. Only prevention can solve that problem. A breakthroughdrug for Alzheimer's would be wonderful -- but who is naïve enough to think thedrug would be dispensed for free? Serious chronic disease is bad financial newswhen we can't treat it, and still bad financial news when we can! The financialnews turns to the good only with prevention. Lifestyle is not only the bestmedicine we have -- it is the only medicine we have already available to all,at essentially no extra cost, and without a prescription.

A healthy brain needs clear arteries, a soundheart, clear lungs, fit kidneys, a robust liver. Even if your brain is your second-favorite organ, you can tend it best by lookingafter all the other less-favored organs on which it is co-dependent.

Altogether too many of our lovedones have Alzheimer's already; and too many more will get it. There is noquestion we need the government, and big Pharma, and the biomedical communityat large to wage the battle of treatment on our behalf.

But prevention is the greaterprize in the long run -- and is largely already within our grasp. There is noneed to wait for the government, or big Pharma. Take matters into your ownhands. Mind your mind and mind your body with the zeal and diligence youroutinely apply to minding your own business. Because, they are.

-fin

For more by David Katz, M.D., click here.

For more on Alzheimer's, click here.

Dr. David L. Katz; www.davidkatzmd.com
www.turnthetidefoundation.org

Alzheimer's and The Invisible Siblings

2011-12-10T19:00:00.001-08:00

Alzheimer's Reading Room
March, 2011

Are Alzheimer's Caregivers
the Forgotten?

Buried in the comments to Bob’ s article, In the Bunkhouse, Random Thoughts Edition, and in reference to the growing number of Alzheimer's caregivers (almost 15 million), I noticed this exchange:

Carole: "What I'd really like stats on, are those who have a close relative with Alzheimer's ... and they refuse to help. I want a stat on the deadbeats so they can see themselves officially identified. Right now they are invisible".

Nancy: “ Hear, Hear!!! I totally agree!! If everyone who identified themselves as a primary caregiver also indicated how many siblings they have who do not help … well, my conservative estimate is another 15 million!!!”

Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we've been abandoned to our mission by those with an equal stake in our loved one’ s care.

Reading the above exchange made me wonder about those invisible siblings and adult children.

How can they blithely carry on without realizing how important and meaningful a small act in support of the caring mission would be? Then, I began to identify all of the assumptions I made when I formulated the question.

I assumed that they are untroubled by their abdication of support responsibilities. I assumed that they know what to do in support. I assumed that they are capable of empathy, for their afflicted parent as well as for their burdened sibling.

Is it reasonable to assume any of this?

Why should it matter whether the invisible sibling is troubled by their inaction? Perhaps because we want to believe that eventually their consciences will prod them to action. Perhaps we cling to this hope despite months and years of evidence to the contrary simply because hope is part of the gravitational force that pulls us forward and through every day.

Maybe they don’t know what to do after all.

The last thing the caregiver needs is another task -- that of educating the absent ones on how to help. No primary caregiver can manufacture compassion and empathy in a person unfamiliar with these states of mind and heart. That Herculean task need not be added to our abundant responsibilities.

Everything we choose signifies something about us. We who have chosen to be the One need only consider the invisible ones to realize that another choice existed,and it’s a choice we rejected.

Spending our emotional capital lamenting the incomprehensible choice made by those who have turned a blind eye or hardened their hearts will only deplete us. We can’t afford that.

When I’m troubled by matters like these, I look for a way to frame an invisible sibling’s behavior that explains it. I’m just looking for some sort of rational context so that I can steel myself against future disappointments.

What can feel punitive usually isn’t intended in that way. Contextualizing it lets me put this burden aside for a while, if I’ m lucky.

If you’re burdened by a family member who is missing-in-action, what do you do?

How do you keep those feelings from intruding in the positive and caring environment you work so hard at maintaining?

Research Brief: Hippocampal Hyperactivity Tied to Early MCI Atrophy

2011-12-08T12:12:00.001-08:00

News Search

2 December 2011. Dying neurons typicallydisplay little activity, but Alzheimer’s disease researchers have puzzled overa strange surge of hippocampal firing in some seniors at the cusp of mentaldecline. A functional brain imaging study in the November 30 Journal ofNeuroscience links this paradoxical hyperactivity with an established marker ofneuro-degeneration—atrophyin a network of functionally connected AD brain areas. The correlation showedup not only in older people with mild cognitive impairment, but also in thosewho seemed cognitively normal. The research, led by Reisa Sperling at Brighamand Women’s Hospital in Boston, suggests that hippocampal hyperactivation in seniors with normal orslightly impaired cognition could be an early sign of AD-related neurodegeneration.

Functional and structural imagingevidence continues to push back the start of Alzheimer’s disease by years, evendecades, before memory problems emerge. Just before the steadydecline in hippocampal activation that occurs as dementia sets in, this brainregion shows a surprising frenzy of activity. With functionalmagnetic resonance imaging (fMRI), Sperling and others have seen hippocampal hyperactivation in seniorswith MCI (Dickerson et al., 2005; Hämäläinen et al., 2007; Kircher et al., 2007;Yassa et al., 2010) or mildly impaired memory (ARFrelated news story onMiller et al., 2008), people with familial or genetic AD risk (Bondi et al., 2005; Bassett et al., 2006), and even in young adults (ARFrelated news story on Filippini et al., 2009). Research presented at the recentSociety for Neuroscience meeting in Washington, DC, also suggests that brainchanges revealed by functional imaging could signal future dementia (seeARFrelated news story).

Meanwhile, structural MRI studies haveidentified a network of functionally connected cortical regions that thin outin MCI patients on the wane toward AD dementia (Bakkour et al., 2009; Dickerson et al., 2009), and in some cognitively normaladults (Dickerson et al., 2011). In the current study, firstauthor Deepti Putcha and colleagues wondered if hippocampal hyperactivity correlatedwith cortical thinning in these AD signature areas.

Theresearchers used functional and structural MRI to analyze 18 cognitively intactseniors and 16 with “early MCI.” The latter came from a cohort, recruited forthe second phase of the Alzheimer’s Disease Neuroimaging Initiative (ADNI),deemed not quite normal but not impaired enough to meet amnestic MCI criteria,Sperling told ARF. Compared to the control group, early MCI participants didworse on the Rey auditory verbal learning task and showed modest deficienciesin Clinical Dementia Rating (CDR) and Mini-Mental State Exam scores. And,consistent with previous work, the early MCI group showed hippocampalhyperactivity relative to controls during the fMRI memory task. The new piecein the present study was the connection to atrophy in AD signature areas shownby structural MRI. “The more the hippocampus showed this paradoxicalhyperactivity, the greater the cortical thinning in these functionallyconnected regions,” Sperling said of the early MCI group. The signature areasincluded the medial temporal lobe, the angular gyrus, and the inferior temporalgyrus. The association also appeared in the control group, albeit only in asubset of these cortical regions.

“I think this hyperactivity is aharbinger of imminent clinical decline. This study links it toneurodegeneration, not just in the hippocampus but in a distributed network ofAD signature regions,” Sperling said. Her findings seem to jibe with recent reports ofincreased neuronal excitotoxicity (ARFrelated news story on Palop et al., 2007) and abnormally highcalcium influx (ARF related news story) in the hippocampus andassociated cortical regions in AD mouse models.

Though she concedes that fMRI is anindirect measure of neuronal activity—“much removed” from the direct recordingsdone in animal studies—Sperling thinks excitotoxicity could be drivingthe paradoxical hyperactivity she andothers have observed in mildly impaired seniors, and even some who appearnormal. “One of the early things that may happen in AD beforecells die is that they have this aberrant increase in activity. When they’refiring in an abnormal way, that may be a sign that they are dying,” she said. Longitudinal studies areunderway to see if this hypothesis bears out.—Esther Landhuis.

Reference:
Putcha D, Brickhouse M, O’Keefe K, Sullivan C, Rentz D, Marshall G, DickersonB, Sperling R. Hippocampal Hyperactivation Associated with Cortical Thinning inAlzheimer’s in Non-demented Elderly Adults. J Neurosci. 2011 Nov30;31(48):17680-17688. Abstract

The Bupa Health Foundation And Alzheimer’s Australia Have Announce The UK Launch Of A World-First Brain App. The Latest Digital Tool To Help In The Fight Against Dementia.

2011-12-08T12:09:00.001-08:00

06 Dec 2011

The Bupa HealthFoundation and Alzheimer’s Australia have announced the UK launch of aworld-first brain health app, the latest digital tool to help in the fightagainst dementia.

Based on latestresearch that links brain health and a reduced risk of dementia, to a healthyheart and cardiovascular system, 'BrainyApp' is the first dementia riskreduction iPhone app designed to help people monitor and improve theirbrain-heart health.

The new app, which wasdesigned by Alzheimer's Australia and Bupa Health Foundation, has alreadyknocked Facebook off the number one spot in the Australia and New Zealand TopFree Apps list and has clocked up more than 130,000 downloads down under.

Now available topeople in the UK, 'BrainyApp' helps users monitor and improve the physical,mental, dietary and social aspects of their lifestyle.

There are currently750,000 people living with dementia in the UK and this is predicted to rise toover a million by 2021. Delaying the onset of dementia by just five years wouldreduce deaths directly attributable to dementia by 30,000 a year.

Jeremy Hughes, ChiefExecutive, Alzheimer's Society, said: "Most people know how to reducetheir risk of heart disease, diabetes and stroke but they don't realise thatthe same healthy lifestyle choices may also lower the risk of developing Alzheimer's diseaseand other kinds ofdementia. The idea is that what is good for the heart is also good forthe brain."

'BrainyApp' allowsusers to take a brain-heart health survey about their diet, exercise patternsand lifestyle. It then provides suggestions and ideas about how to makeimprovements to each. It also includes all-new brain games, and encouragesusers to build brain-heart points by staying physically and mentally active,socialising with friends and family, and sharing their progress on Facebook.

One of the brain games- 'Word Tennis' - requires players to unscramble anagrams in order to move apaddle and hit a ball back to their opponent.

Director of dementia care for Bupa Care Services, DrGraham Stokes, said: "There is evidence to show that keeping the mindexercised can stave off the onset of dementia but 'BrainyApp' highlights thatgood physical health also has a part to play. Best of all it’s good fun."

'BrainyApp' is available as a free download for users of iPhone, iPod and iPaddevices from the App Store. There are plans to develop an Android version inearly 2012.

More information aboutBrainyApp is available at www.bupa.co.uk/brainy-app.

-ENDS-

About Bupa Group:
Bupa’s purpose is to help people lead longer, healthier, happier lives.

A leadinginternational healthcare group, Bupa offers personaland company health insurance, runs carehomes for older people and hospitals, and provides workplacehealth services, health assessments and chronic disease management services,including health coaching, and home healthcare.

For more information,visit www.bupa.com

About Alzheimer'sSociety:
One in three people over 65 will die with dementia. Alzheimer’s Societyresearch shows that 750,000 people in the UK have a form of dementia, more thanhalf have Alzheimer's disease. In just ten years a million people will beliving with dementia. This will soar to 1.7 million people by 2051. Alzheimer’sSociety champions the rights of people living with dementia and the millions ofpeople who care for them.

About Alzheimer'sAustralia:
Alzheimer's Australia is the charity for people with dementia and theirfamilies and their carers. As the peak body, it provides advocacy, supportservices, education and information.

About the Bupa HealthFoundation:
The Bupa Health Foundation helps build a healthier Australian community throughits support of important health research, health education and other healthyliving programs.

PR Contact
Kevin Mochrie, Bupa Group Press Office, Bupa House, 15-19 Bloomsbury Way,London, WC1A 2BA, +44 (0)207 656 2454, www.bupa.co.uk

It’s Mild Cognitive Impairment. Now What?

2011-12-05T10:31:00.001-08:00

November 23, 2011, 12:18PM

By PAULA SPAN

Howwould you react to a diagnosis of mild cognitive impairment — memory problemsthat allow you to continue normal daily activities, but presage an increasedlikelihood of developing Alzheimer’s disease within a few years?

If a genetics counselor were to sit down withyou and a person you’re close to, someone who might become your caregiver whenand if you need one, and to explain that within five years roughly half of those given a diagnosisof mild cognitive impairment develop Alzheimer’s — would you sink intodepression? Would you change your behavior to try to lower your risk? What ifyou were told a genetic test for your apolipoprotein E (APOE) status,associated with Alzheimer’s disease, could provide a more specific estimate ofyour risk?

Mildcognitive impairment is a relatively recent term, first used by a Mayo Clinic team publishing in 1999. Itacquired an official diagnostic code, allowing doctors to bill insurers forreimbursement, only a few years ago.

There’sstill a lot the experts don’t know. Few studies have followed subjects withM.C.I. beyond five years, for instance. Some never progress to Alzheimer’s, butwe don’t know how many. We do know that a lot of people are going to confrontthis issue in coming years as the population ages. In a recent Mayo Clinicstudy, 16 percent of almost 2,000 adults ages 70 to 89 in one Minnesota countywere found to have mild cognitive impairment.

“We’re trying to understand how people respondto this information,” Scott Roberts, a public health specialist at theUniversity of Michigan, told me in an interview. The university is one of fourresearch sites (along with Harvard University, Howard University and theUniversity of Pennsylvania) that will each follow 45 patients and theirpartners for a year to measure the effects of health education and genetictesting on those who are told they have M.C.I.

There’s a lot the investigators want to know.“Do people grasp the information we’re trying to give them?” Dr. Roberts asked.Will people at risk start taking vitamin E or doing crossword puzzles, eventhough there’s no evidence that either will help?

“We’re interested in the psychologicaladjustment of both the person and the partner,” Dr. Roberts said. “What are thelikely benefits and harms of providing this information?”

Benefits? Possibly. “People might want to knowin terms of planning for the future,” he suggested. “And in the future, theremight be medications for mild cognitive impairment, so APOE could be a markerof whether to treat.”

The researchers may also find plenty of peoplewho don’t want to talk about, hear about or know about where mild cognitiveimpairment might lead. But this study, called Reveal, is enrolling onlypatients and caregivers who volunteer — they’re probably already inclined towant more information.

As it happens, a previous study by thisresearch team showed no significant increase in psychological risk whenadults whose parents had Alzheimer’s disease received the results of APOEgenotyping, compared with a control group of those with similar family historywho didn’t learn their results.

“Not to say it’s completely benign, but wedidn’t see an elevation in anxiety or depression” in those who learned theirtest results, Dr. Roberts said. That wasn’t what lots of medical people hadexpected.

So who knows what other unexpected resultsReveal will turn up? Millions of people — patients, families and friends,health care providers — are going to be hearing this diagnosis in coming years.It makes sense to find out.Paula Span is the author of “When theTime Comes: Families With Aging Parents Share Their Struggles and Solutions.”

MAKS: Drug-Free Prevention of Dementia Decline

2011-12-03T17:35:00.001-08:00

ScienceDaily (Nov. 30, 2011) —There are many differentcauses of dementia and, although its progression can be fast or slow, it isalways degenerative. Symptoms of dementia include confusion, loss of memory,and problems with speech and understanding. It can be upsetting for both theaffected person and their relatives and carers. New research published inBioMed Central's open access journal BMC Medicine shows that a regimeof behavioral and mental exercises was able to halt the progression ofdementia.

Researchers led by Prof. Graessel, fromFriedrich-Alexander-Universität Erlangen, included in their study patients withdementia from five nursing homes in Bavaria. After random selection, half thepatients were included on the year-long MAKS 'intervention' consisting of twohours of group therapy, six days a week. In addition all patients maintainedtheir normal treatment and regular activities provided by the nursing home.

The MAKSsystem consists of motor stimulation(M), including games such as bowling,croquet, and balancing exercises; cognitive stimulation (K), in the form ofindividual and group puzzles; and practicing 'daily living' activities (A),including preparing snacks, gardening and crafts. The therapy session beganwith a ten minute introduction, which the researchers termed a 'spiritualelement' (S), where the participants discussed topics like 'happiness', or sanga song or hymn.

After12 months of therapy the MAKS group maintained their level on the Alzheimer'sDisease Assessment Scale (ADAS) and, even more importantly maintained theirability to carry out activities of daily living, while the control group allshowed a decrease in cognitive and functional ability.

Prof. Graessel explained, "While we observed a betterresult for patients with mild to moderate dementia, the result of MAKS therapyon ADAS (cognitive function) was at least as good as treatment withcholinesterase inhibitors. Additionally we found that the effect on thepatients' ability to perform daily living tasks (as measured by the Erlanger Test of Daily Living(E-ADL)) was twice as high as achieved by medication. This means that MAKStherapy is able to extend the quality of, and participation in, life for peoplewith dementia within a nursing home environment. We are currently in theprocess of extending these preliminary results to see if this prevention ofdementia decline can be maintained over a longer time period."

The Alzheimer's Generation: What We've Learned in 30 Years

2011-12-03T10:11:00.001-08:00

Posted: 12/ 2/11 08:18 AM ET

In theearly 1980s, mostpeople with Alzheimer's disease would have simply been labeled as"senile." Spouses and adult children would take on theresponsibility of providing care until it was time for a nursing home, wherethey received care in an institutional setting.

Since then, there have been remarkable stridesforward in the diagnosis, understanding and care for those with Alzheimer'sdisease and other forms of memory loss. Reflecting on the progress we've madein the last 30 years helps us to prioritize new advances in the decades ahead.

Diagnosis, Treatment and Education

Every 69 seconds, someone develops Alzheimer's disease and one outof every eight seniors over the age of 65 has the disease. Yet 30 years ago, no oneknew its name. If you search the New York Timesarchives from 1850 through 1977 for "Alzheimer'sdisease," only one story refers to the disease, although it was firstdiagnosed back in 1907.

TheAlzheimer's Association, whose resources are invaluable to so many today, wasnot even founded until 1980, and it was not until 1982 that Ronald Reagandeclared an official "Alzheimer's Awareness" week. Many people regarded the symptoms of confusion and memory loss as just areality of getting older. The result was that little attention was given totreatment, diagnosis, and more importantly, care and caregivers.

While a definitive cure for Alzheimer's is stillelusive, there are five FDA-approveddrug treatments that help relieve the symptoms of the disease. These have allbeen developed in the past few decades and there are numerous new therapies in the research pipeline.

Care Settings

Prior to the1970s, resources and services for people with memory loss were virtuallynon-existent, and care was given either at home or in nursing homes.Fortunately, a major shift occurred in the1980s when the institutionalized medical model of care provided in nursinghomes transitioned to the resident-centered social model provided in assistedliving communities.

It was duringthis period in time that assisted living pioneers Paul and Terry Klaassen,founders of Sunrise Senior Living, designed the type of care andservices that would always put the resident first, whether or not they havememory loss. This approach not only champions quality of life, but also honorsthe residents' wishes and promotes identity, independence and dignity.

As the assisted living industry grew, dedicatedwings or free-standing buildings were built specially for residents with memoryimpairment. These homelike neighborhoods provided a secure, non-restrictingenvironment and promoted a sense of community. Architects then began to focus onthe design elements which give residents with memory loss a sense oforientation through built-in environmental cues that helped them find their wayand reduce feelings of insecurity. Design innovations included automatic sensorlights and contrasting colors in bathrooms, tableware designed to be bright andcontrasting -- all of which further promote dignity and independence.

By the early 2000s, a fewassisted living companies identified a need for specialized programs andservices specifically designed for residents with Mild Cognitive Impairment(MCI) or early stages of Alzheimer's disease. These programs were designed to assistseniors with early signs of memory loss to engage in activities that promotecognitive stimulation, social engagement, mutual support and stress reductionwith a goal of delaying memory loss. Not until recently did studies suggestthat lifelong learning, mental and physical exercise, continuing socialengagement, stress reduction and proper nutrition may be important factors inpromoting cognitive vitality.

Care Provision

Thirty years ago, there was little consensusabout how best to help those who were disoriented and seemed to live in adifferent time and place because of Alzheimer's or other forms of memory loss.

Thatchanged in 1982, when internationally renowned socialworker Naomi Feil published her seminal work, "Validation: The Feil Method, "whichintroduced caregivers to an empathetic way of communicating with disorientedseniors. Today, thousands of professional caregivers are trained to use validation techniques,through which they are able to tune into the inner reality of the person withdementia. This method helps build trust and restore the person's dignity.

Activities in memory care have also transitioned awayfrom the large group, one-size-fits-all approach to more intimate small groupsthat focus on shared interests and promoting a sense of purpose and belonging.Most care also now centers around social engagement with well-designedactivities to increase quality of life.

The Future

As progressive as the last 30 years has been toimprove care for those with Alzheimer's and other forms of memory loss, thefuture looks even more promising, especially in the area of technology.

The safety-oriented devices such as motionsensor alerting and GPS shoes will continue to proliferate and enablegreater independence. Scientists are also testing brain imaging tools and bloodtests that may allow for earlier interventions. Computer-based brain fitnessproducts and remote communication with family members are also promisingto flourish and help keep those with memory loss connected socially.

Everyoneis hopeful that this generation will be the one where a cure is found. While the search continues,there will be even more emphasis on prevention and controlling contributingrisk factors. Untilthen, one of the most important advances we can make is to continue educating,training and supporting everyone who is touched by Alzheimer's disease and otherforms of memory loss.

Follow Rita Altman, R.N. on Twitter: www.twitter.com/sunrisesrliving

2011-11-21T17:17:00.001-08:00

Alzheimer's: What ifthere's no cure?

In astudy in the Journal of Alzheimer's Disease, a research group led by Dr. MingChen suggests that 'tremendous social pressures' have pushed scientists to seekan Alzheimer's cure that may not exist.

November 21, 2011

There's one thing that all Alzheimer's researchers agree on: Themind-robbing illness is heartbreaking. But after three decades of study thathave produced neither cure nor medications that significantly slow itsprogress, some researchers are asking: What if it's not a disease with a cure?What if it's just an unfortunate but inevitable part of aging, along withwrinkly skin, osteoporosis and heart disease?

In a study in the December issue of the Journal of Alzheimer's Disease, aresearch group led by Dr.Ming Chen at theUniversity of South Florida suggeststhat "tremendous social pressures" have pushed scientists to targetAlzheimer's as a curable disease. Despite all the research, however, they saythe cause of the condition remains unknown and "there seems no majorprogress expected any time soon." The researchers are notproposing giving up on treating Alzheimer's. In fact, just the opposite: Theybelieve scientists should refocus efforts from searching for an underlyingvillainous pathogen to manipulating neurotransmission in the brain.

Inother words, to deemphasize the quest for a cure and to look instead foreffective prevention and treatment that focus on dementia as part of the agingprocess. They stress the importance of controlling risk factors, suchas diabetes and hypertension, that are believed to make peoplemore vulnerable to developing Alzheimer's, and energizing the aging brainthrough social activities.

As the baby boomgeneration ages, dementia will become a larger social and healthcare problem.

Scientistswould be remiss if they weren't constantly reevaluating their mission anddirection and reconsidering funding priorities. They should certainly seek moreeffective treatments for Alzheimer's, and there's every indication that theyare. Some leading researchers believe they are, indeed, closeto slowing the molecular process at the heart of Alzheimer's. Othersnote that multiple factors cause the condition, making it "a tough nut tocrack," according to Ronald Petersen, director of the Mayo Clinic's Alzheimer's Disease Research Center inMinnesota.

Chen, the new study's lead author, says that for years Alzheimer'sresearchers have been driven by fear of the societal devastation that will bewrought by increasing numbers of dementia sufferers, and that it has ledscientists down a path for a cure that doesn't exist. But fear is apowerful and often a rational motivator. It's fine to reexamine priorities. Thelast thing we want is for researchers to be distracted by the debate or toclose off options that let them dare to pursue either a cure or apreventive strategy.

Even the authors of this study say it's reasonable to seek something bold:"Man has landed on the moon; numerous once-incurable diseases have beencured." But they note that none has been a disease that causes senility.

Not yet, anyway.

Is Alzheimer's disease really curable?

2011-11-21T17:09:00.001-08:00

By Shari Roan, Los Angeles Times / For the Booster Shotsblog

November 11, 2011, 9:44 a.m.

The decision by health experts toseparate Alzheimer's disease from age-related dementiaand deem it potentially curable "opened a Pandora's box" andmay have misdirected research for decades, a team of scientists suggests in anew analysis of the field.

Despite great efforts tofind treatments to stop or slow progression of the disease, there are only afew medications for Alzheimer's disease and they only help mitigate symptoms,not the disease process.

In their paper, published in the December issue of the Journal of Alzheimer's Disease, researchersfrom the University of South Florida proposethat senile dementia, which includes Alzheimer's, is not a distinct disease butcan be explained by simple aging along with other risk factors. Rather thanlook for specific elements of disease that cause dementia, researchers should turn theirattention to how to extend the life of neurons.

"The model implies that senile dementia is, by and large, a lifestyledisease," said the lead author of the study, Ming Chen, a researchbiochemist and director of the Aging Research Laboratory, Bay Pines VAHealthcare System, in a news release. "This view . . . contrasts sharplywith current dominant theories in the Alzheimer research field, which assume alinear and 'cause and effect' mechanism."

The view that Alzheimer'sis an age-related type of dementia suggests that the condition is incurable.But, Chen said: "Our research, if guided by correct theories, will producemedications to help delay dementia to a certain extent -- similar to the drugsthat delay or ameliorate atherosclerosis and osteoporosis today."

The paper is sure togenerate controversy since most of the scientific research community has notgiven up on ways to prevent or arrest Alzheimer's disease. In recent years,Alzheimer's researchers have acknowledged the need to redirect their attention.However, the major focus of research now is on how to intervene early in thedisease process to slow or halt brain damage.

Broader Definition of Alzheimer's Could Help Doctors Diagnose it Earlier

2011-11-21T17:07:00.001-08:00

The change reflects increased knowledge about the disorder.For now, though, treatment options, and limits among them, remain the same.

By Thomas H. Maugh II, Los Angeles Times

April 25, 2011

For thefirst time in 27 years, health authorities have expanded the definition of Alzheimer's disease.

The change, announced lastweek by the National Institutes of Health andthe Alzheimer's Assn., is intended to help doctors diagnose patients in thevery early stages of the neurological disorder, including those who have yet todevelop any outward symptoms. The new approach could ultimately help millionsof older Americans spend more years with their mental faculties intact.

By thetime a patient becomes demented, it is "too late" for medications tobe of any help, says William H. Thies, chiefscientific and medical officer of the Alzheimer's Assn. in Chicago. Soresearchers are trying to develop drugs that could slow the progression of thedisease, for which there is no cure.

"If we start 10 yearsearlier and could push off the appearance of dementia by, say, five years …that could cut the number of demented people in the U.S. by half,"Thies says. "That would be an amazing public health accomplishment."

But it won't happenimmediately. Two large clinical trials of compounds intended to stave off theworst stages of the disease both failed.

For now, expertsacknowledge, the new diagnostic criteria will probably mean that more peoplewill receive the grim news that Alzheimer's is in their future — and therewon't be anything they can do about it.

"There is nothing that can be done for them, not yet," says CreightonH. Phelps, director of the National Institute on Aging's Alzheimer's Disease Centers Program.

For now, agrees Dr. John M. Ringman, interim director of UCLA's Easton Center for Alzheimer'sDisease Research, "itdoesn't change how we treat patients."

Alzheimer's ischaracterized by severe memory loss, as well as impaired reasoning andjudgment, personality changes, loss of problem-solving ability and a host ofother mental problems. Thirty years ago, the condition was diagnosed primarilyby excluding all other forms of mental disorders. A definitive diagnosis couldbe made only after death, when an autopsy of the brain would reveal the abnormal amounts of amyloidproteins forming plaques and tau proteins forming tangles.

By that criteria, there are anestimated 5.4 million Americans with Alzheimer's disease now, and that numberis expected to grow to 16 million by the middle of the century as increasingnumbers of baby boomers mature into the over-65 age group that is mostvulnerable to the disease.

Unlike the old guidelines,which recognized only full-blown Alzheimer's, the new ones recognize twoearlier stages of the disease: mild cognitive impairment, which means somesymptoms of the disorder have begun to appear; and preclinical Alzheimer's, inwhich biochemical and physiological changes linked to the disease have begunbut symptoms have yet to appear.

The changes reflect thesharply increased knowledge about the disorder that scientists have accumulatedover the last two decades and the development of new tools that allow diagnosisof the disease to be made much earlier in the course of its development.

In the last 10 years inparticular, researchers have made remarkable progress in identifying biologicalchanges that accompany Alzheimer's disease. These include imaging studies with MRI scans that show shrinkage in specific areasof the brain associated with Alzheimer's and the appearance of characteristicproteins, called biomarkers, in the spinal fluid of patients with the disease.Researchers have also found genes that are associated with increasedsusceptibility.

These studies showed that Alzheimer's is a slowly progressing disease thatbegins as much as 20 years before full-blown symptoms develop.

Some very limited studiessuggest that there are at least 1½ times as many patients with mild cognitiveimpairment as there are with end-stage Alzheimer's, and perhaps two to threetimes as many, Thies says.

"The scary part of this whole thing is the idea of preclinical Alzheimer'sdisease. That really got my phone buzzing" with calls from concernedpatients, said Dr. Peter Davies, director of the Litwin Zucker Research Centerfor the Study of Alzheimer's Disease at the Feinstein Institute for MedicalResearch in Manhasset, N.Y.

Even though these patients are identified, there is little that can be done forthem.

There are two families ofdrugs that are now used to treat end-stage Alzheimer's: acetylcholinesteraseinhibitors, including Aricept, Razadyne and Exelon, and another drug,memantine, that blocks certain receptors in the brain. "All only addresssymptoms and don't interrupt the course of the disease," Phelps says.

Researchers have completed two randomized placebo-controlled clinical trials of medicines that lookedlike they might be able to block progression of the disease if caught early.One of the trials tested ginkgo biloba — a popular herbal extract thatmany people take for its supposed ability to enhance cognitive function — andfound that it provided no benefit. The other trial involved non-steroidalanti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen, but it wasstopped early because of side effects from the drugs.

Researchers are now attempting to figure out how to organize clinical trials ofboth the existing drugs — which might prove more useful when the disease hasnot progressed very far — and new ones in people with preclinical Alzheimer'sand mild cognitive impairment.

Meanwhile, the new tests and criteria should help prepare patients for theworst, Ringman says.

"People want to know what they should tell their children, whether theyshould take that world cruise they've been planning all their lives right nowor wait five years," he says. "This will be helpful in counselingthem."

thomas.maugh@latimes.com

Quality of Life IS Possible After a Diagnosis of Dementia

2011-11-20T07:14:00.001-08:00

SUNDAY,NOVEMBER 20, 2011

As a long-term caregiver for my own mother, Iabsolutely understand the tremendous disbelief, denial, frustration, fear, andanger associated with being a caregiver.

By Judy Berry

Critical to assuring the highest quality of life possible to aloved one with dementia is understanding how the disease progresses; achievingacceptance by family members and caregivers; learning communication techniques;and validating ALL the feelings of the dementia sufferer.

Understanding dementia--its various causes and likely progression andconsultation with a physician about early pharmacological interventions--areessential to maintaining the highest possible quality of life for both theperson diagnosed with dementia, their primary caregiver, and the entire family.

Dementia is a general term used to describe the symptoms of short-term memoryloss; confusion about time and place; inability to perform tasks that werepreviously easy to carry out; and eventually the inability to perform everydayactivities of daily living.

Types of dementia. There are many causes of dementia of whichAlzheimer’s disease is the most well known and one of the primary causes.Vascular or multi-infarct dementia is probably the next largest cause ofdementia; often persons are diagnosed with both. The person suffers the loss ofshort term memory and becomes confused when trying to complete common tasks.The major difference between these types of dementia is that decline tends tobe slower and with a steadier pace with Alzheimer’s disease, while those withvascular dementia experience more sudden declines characterized by longerperiods with no decline and then additional sudden declines.

Importance of earlydiagnosis. Itis EXTREMELY important for anyone experiencing any of the symptoms of dementia,for example, memory loss, confusion, personality changes--to seek anappropriate medical diagnosis. Some diseases--uncontrolled diabetes, somethyroid conditions, medication side effects and many others--mimic symptoms ofdementia, yet are completely curable and reversible.

Moreover, the early diagnosis ofAlzheimer’s disease, vascular dementia or other types of dementia facilitatesearly interventions that can maintain the highest possible quality of life andconsiderably delay the onset of debilitating symptoms.

Dementia as a familydisease. As along-term caregiver for my own mother, I absolutely understand the tremendousdisbelief, denial, frustration, fear, and anger associated with being acaregiver for someone with a disease that appears to rob us of the person wehave known and loved because they lose the ability to communicate in a way weunderstand. I know first-hand how hearts are torn and emotions worn thin tryingto deal with feelings of helplessness and hopelessness. Dementia is a familydisease: as a caregiver or family member you MUST take care of yourself. Do notbe ashamed to ask for help!!!

Suggestions for caregiving. Here are some suggestions that willhelp make your journey with your love one the best it can be.

As dementia progresses a time will come when it is no longer helpful to try tohelp the person’s memory. Indeed, attempts to do so often reinforce their fearand anxiety and provoke their anger. They may believe that you are questioningtheir ability to remember or they can become introverted as they realize theirinability to respond appropriately and become too embarrassed to participate inconversations.

· Learn as much as youcan about the disease and its progression so you can recognize and acceptchanges in behavior. Deterioration is the progression of the disease--and it’snot personal.

· Always validate theirfeelings! People with dementia have the same feelings and emotions as we do,right up until the time death. However, they can no longer communicate theirfeelings in a way we can understand. Often they are scared to death and don’t understandwhat is happening to them. They become frustrated and act out when they cannotbe understood.

There is always an unspoken need, feeling or fear behind an inappropriate oraggressive behavior! We have to become detectives to discover the need.

· Learn to live in their world.Wherever they think they are and whatever they perceive is happening is real tothem; any attempt to bring them to our reality is frustrating. They feel asthough you are telling them their thoughts are wrong. During the early stagesof the disease this also reminds them that there is something very wrong withtheir memory, which is scary--and they will almost always react negatively.

· Learn to read theirnon-verbal communication and VALIDATE the person they are and the feelings andemotions that they are displaying in the moment. After listening to manyresidents with this disease it has become obvious that they ARE very much stillin there, with the same feelings and emotions they have always had. You need torecognize those feelings and always validate them. They deserve to have ALLtheir needs met and often emotional needs go unrecognized and unmet as thecaregiver perception is that the person with dementia no longer is the sameperson or doesn’t understand anything, therefore the emotional and spiritualneeds are gone or we as the caregiver are not comfortable affirming them. Tothe contrary we see emotional needs escalate with the progression of thedisease as they lose the ability to communicate and they become more scared andconfused.

· Always ask yourselfthis question: “Does it really matter?” Does it really matter when a loved onewith dementia does something that we deem inappropriate or evidences a definitedislike of or disinterest in a particular activity you want them to do—forexample, taking a bath right now! No one ever died as a result of not bathing,or failing to eat or sleep according to a specific schedule. Be respectful oftheir choices, as long as they are possible and not dangerous.

· Always treat theperson with dementia with the dignity and respect due to an adult. Althoughtheir behaviors may seem childlike, they are still an adult. Involve them in asmany activities as they can do without becoming frustrated. Invite them toparticipate, at their pace, and encourage them to share the talents they stillhave. Surprisingly, many people with middle-stage dementia can still playinstruments they have played all their lives. They won’t remember they canplay, but if you hand them the instrument and encourage them, often they beginto play right away--which is an incredible self-esteem builder.

· Don’t ask directquestions. Instead of “What are your children’s names?” you might say, “Tell meabout your children.” When a person with dementia says they want to go home,ask them to tell you about home. You’ll find that what they are actuallyseeking is their home as a child or even just a place where they werecomfortable and well.

· It’s essential tounderstand that the person had a daily routine that has been now totallydisrupted by their dementia. Learning about what they did and keeping themactive during those times, assuring them that things are being taken care of orasking them to help with some familiar chores can help to reduce or eliminatethe agitation, commonly known as “sundowning.” Sundowning usually occurs at thetime of the day that most people are moving about--coming home from work,fixing dinner, and performing chores. Recognizing these activities andvalidating their feelings can reduce the frustration and anxiety of the personwith dementia and their caregiver.

I hope these few will suggestions will be helpful as your carefor your loved one. The person with dementia cannot change the progress oftheir disease and have little control over their responses to unmet needs. Yourattitude of acceptance and commitment to learn, as a family member andcaregiver, can greatly improve the trust and relationship you have with yourloved one, reduce frustration for both your family and your loved one, and mostimportant, provide an opportunity to share some special quality times as youshare in their final journey.

For more information contact Judy Berry, CEO, Lakeview Ranch SpecializedDementia Care at 800-546-5175 or at our websites Lakeview Ranch and DementiaCare Foundation.

New Study Challenges Accepted Approaches to Research in Senile Dementia (Alzheimer’s Disease)

2011-11-19T10:41:00.001-08:00

Amsterdam, NL – Impacting millions of families and devouring billions of dollarsglobally, Alzheimer’s disease is the focus of exhaustive research to find acure.

Althoughintensely investigated over the last three decades using cutting-edgetechnologies, the “pathogenic cause” of Alzheimer’s disease has not been found.While many research “breakthroughs” have been claimed and high-profile drugstrials carried out, why does the promised “cure” still seem to eludescientists?

In aneffort to address this question, Ming Chen, PhD, Huey T.Nguyen, BS, and Darrell R. Sawmiller, PhD, Aging Research Laboratory, R&DService, Bay Pines VA Healthcare System and University of South Florida, undertook an independent andsystematic analysis of the underlying research assumptions against theestablished scientific principles. This analysis led them to hypothesizethat perhaps the main problem is the research community’s perception of thedisease.

In an article scheduled forpublication in the December issue of the Journal of Alzheimer’s Disease theauthors suggest that when the National Institutes of Health separated outdementia from other senile conditions and redefined it as a distinct and“curable” disease — Alzheimer’s – in the 1970s, it opened a Pandora’s box andmay have misdirected research for decades. It triggered the search forpathogenic factors and cures, and disregarded the role of demographic changeand its diverse end results in the elderly.

Theauthors argue that senile disorders – diseases occurring after age 60 andeventually affecting the majority of the elderly, such as tooth, hearing ormemory loss – are caused by aging, thus differ fundamentally from distinctdiseases by origin, study paradigm and intervention strategy.

Moreover, the authors contend that a central regulator incognition − the Ca2+ signaling system − has been misconceived byinstitutional thinking that favors a “cure” for senile dementia. Thedominant hypothesis, although unproven, is that Ca2+ levels risethroughout the aging process, leading to cell death, and thus research hasfocused on calcium antagonists to lower those levels. This viewpoint hasbeen promoted by policy makers, and the subject of a number of high profileclinical trials, but to date no positive results have emerged.

In contrast, the authors propose that decliningfunctionality of Ca2+ signaling as a result of the aging process,among a myriad of other age-related changes, leads to cognitive decline.

Calcium (Ca²⁺) plays a pivotal role in the physiology and biochemistry of organisms and the cell. It plays an important role in signal transductionpathways, where it acts as a second messenger, in neurotransmitter release from neurons, contraction of all muscle cell types, and fertilization. Many enzymes require calcium ions as a cofactor, those of the blood-clotting cascade being notable examples. Extracellular calcium is alsoimportant for maintaining the potential difference across excitable cell membranes, as well as proper bone formation. [http://en.wikipedia.org/wiki/Calcium_in_biology])

Therefore interventions for senile dementia could activate Ca2+ functionby promoting energy metabolism and also by Ca2+ agonists such as caffeineand nicotine. At the same time, risk factors play a keyrole. “Aging and Ca2+deficits set the stage for senile dementia, but do not always lead to seniledementia in real life,” explains Dr. Chen. “Lifestyles and other riskfactors are the key. So we think that senile dementia may be explained by‘advanced aging plus risk factors.’ This model points to a new directionfor prevention. This means we must support the elderly in healthylifestyles. And we should develop medications to extend the lifespanof old neurons, rather than looking for ways to inhibit far-fetched‘pathogenic’ factors.”

“The modelimplies that senile dementia is, by and large, a lifestyle disease,” says Dr.Chen. “This view, in fact, has been shared by many in themedical and clinical community, but contrasts sharply with current dominanttheories in the Alzheimer research field, which assume a linear and ‘cause andeffect’ mechanism. Since they have not taken into account the fundamentalroles of aging and risk factors, it is clear that these theories, though highlyappealing to the public and researchers alike, are of little relevance to thescientific nature of senile dementia.”

“The twooverwhelming concepts, senile dementia as a distinct disease and the Ca2+ overloadhypothesis, have effectively blocked any meaningful progress in senile dementiaresearch, and have inhibited the self-correcting mechanism of science,”concludes Dr. Chen. “An independent scrutiny on the field may behelpful.”

“Although incurable”, Dr. Chen is optimistic. “Our research,if guided by correct theories, will produce medications to help delaydementia to a certain extent − similar to the drugs that delay or ameliorateatherosclerosis and osteoporosis today.”

# # #

NOTES FOR EDITORS

Full text of the article is available to credentialedjournalists upon request. Contact Daphne Watrin, IOS Press at +31 20 688 3355, d.watrin@iospress.nl. To interview theauthor contact Ming Chen, PhD at 727-398-6661 ext 4049 or Ming.Chen@va.gov.

Source:

Chen, M.; Nguyen, HT, Sawmiller, DR. What to Look forBeyond ‘Pathogenic’ Factors in Senile Dementia? A Functional Deficiencyof Ca2+ Signaling. J Alzheimer’s Dis. 2011, 27(4). DOI10.3233/JAD-2011-111142.

Chen, M.; Maleski, JJ. Sawmiller, DR. Scientific truth orfalse hope? Understanding Alzheimer’s disease from an aging perspective. J.Alzheimer’s Dis.2011, 24, 3-10.

ABOUT THE JOURNALOF ALZHEIMER’S DISEASE (JAD)

The Journal of Alzheimer’s Disease (http://www.j-alz.com) is an internationalmultidisciplinary journal to facilitate progress in understanding the etiology,pathogenesis, epidemiology, genetics, behavior, treatment and psychology ofAlzheimer’s disease. The journal publishes research reports, reviews, short communications,book reviews, and letters-to-the-editor. Groundbreaking research that hasappeared in the journal includes novel therapeutic targets, mechanisms ofdisease and clinical trial outcomes. The Journal of Alzheimer’s Disease has anImpact Factor of 4.261 according to Thomson Reuters’ 2011 edition of JournalCitation Reports. It is ranked #19 on the Index Copernicus Top 100 JournalList. The Journal is published by IOS Press (www.iospress.com).

ABOUT IOS PRESS

Commencing its publishing activities in 1987, IOS Press (www.iospress.nl) serves the informationneeds of scientific and medical communities worldwide. IOS Press now publishesover 100 international journals and about 130 book titles each year on subjectsranging from computer sciences and mathematics to medicine and thenatural sciences.

IOS Press continues its rapid growth, embracing newtechnologies for the timely dissemination of information. All journals areavailable electronically and an e-book platform was launched in 2005.

Headquartered in Amsterdam with satellite offices in the USA, Germany, Indiaand China, IOS Press has established several strategic co-publishinginitiatives. Notable acquisitions included Delft University Press in 2005 andMillpress Science Publishers in 2008.

Contacts:

George Perry, PhD
Editor-in-Chief, Journal of Alzheimer’s Disease
Tel: +1 210 458 4450
Fax:+1 210 458 4445
Email: george.perry@utsa.edu

Daphne Watrin
IOS Press
Tel: +31 20 688 3355
Fax: +31 20 687 0019
Email: d.watrin@iospress.nl

Alzheimer's Disease: How to Face Fear With Knowledge (Part 1)

2011-11-17T10:16:00.001-08:00

Deepak Chopra

Posted: 11/15/11 07:00 AM ET

By Deepak Chopra, M.D., FACP and Rudolph Tanzi, Ph.D., The JosephP and Rose F. Kennedy, Professor of Neurology, Harvard Medical School, Directorof Genetics and Aging, Massachusetts General Hospital

Fewpeople feel comfortable thinking about the aging process, but discomfort turnsto fear when it comes to the brain. Medically, everyone's brain slows down insome way as they age. This doesn't have to be a source of fear -- to be olderis often to be calmer, wiser, more at peace. Those desirable states are mental.The brain is secondary. But the brain is primary when it comes to disease, andthe most feared disease is Alzheimer's.

In this first post we'll try to bring some lightto this dark subject by asking what Alzheimer's is and what we know about it.In the second post we'll move on to diagnosis and treatment. Advances in thoseareas are also being made, but medical science is just on the verge ofdiscovering how Alzheimer's might possibly be prevented and slowed down. So thiswill be an interim report, shedding hope where hope is real but facing thefacts as squarely as possible. My hope is that having full knowledge is a goodway to dispel anxiety.

Nervecells in the brain need to be in constant communication with their neighboringcells in order for the brain to function properly. The effects of aging involveslower or lessened communication. In Alzheimer's disease this is drasticallyworsened by the presence of senile plaques and tangles inside of nerve cellsthat disrupt communication between nerve cells and breakdown of the neuralnetwork. The free flow of information is physically blocked, like a telephonesystem wrecked by a devastating hurricane.

As peoplegrow older, what they fear the most isn't mortality but becoming a burden ontheir children. That burden is worst when a parent becomes senile (today themedically-preferred term is dementia), entering what was traditionally calledby the euphemism of second childhood. Senility takes many forms, and the mostcommon form of dementia in the elderly is Alzheimer's disease, which accountsfor 70-80 percent of cases. In the past few decades people are becomingincreasingly aware of the impact Alzheimer'shas on society. About 5.4 million Americans have some stage of Alzheimer's, andalmost 15 million are caregivers for them and for patients suffering from otherforms of dementia. Alzheimer's is also the sixth leading cause of death in theU.S., and that figure isn't going down: In keeping with the graying of America,deaths from Alzheimer's have risen 66 percent since 2000. Every 72 seconds, anew case of Alzheimer's is diagnosed in the U.S., and this will only get worsein coming years with 71 million aging baby boomers.

While the pathology and clinical symptoms arebasically the same for all cases of Alzheimer's disease, cases are generallydivided into two categories: "early-onset," striking before the ageof 65, and the more common "late-onset" form. Twin studies revealthat inherited factors play a role in at least 80 percent of all cases, earlyor late. However, genetic factors are particularly strong in the early-onsetfamilial forms of Alzheimer's disease. People who develop this form ofAlzheimer's usually start showing symptoms of memory loss before age 65. In themost acute cases people have been affected as early as age 20. This type ofAlzheimer's can be caused by any of more than 200 defects in three differentgenes, all of which guarantee disease, usually before the age of 60, wheninherited. In the late-onset form of the disease, gene defects tend toinfluence susceptibility without necessarily guaranteeing the disease within anormal lifetime.

The far more common form of Alzheimer's affectspeople over the age of 65. Risk of developing it doubles every five years afterthat, until the highest risk, when up to 40 percent of Americans aged 85or over may be suffering from Alzheimer's in some stage. After the age of 85the incidence of Alzheimer's continues to increase, and many today believe thatvirtually all of us would have Alzheimer's if we lived to 120 years old.

One complication is that it can be difficult todifferentiate memory loss due to Alzheimer's from other causes. This again iscomforting since these other causes are sometimes preventable and treatable.(Dehydration, vitamin deficiencies, poor diet, adverse events of multipleprescriptions, for example, make almost every symptom of old age worse,including the mental ones. These two conditions should be monitored closely aswe age.) As we age, our short-term memory and ability to learn and register newinformation begins to decline, while long-term memory is retained for muchlonger periods into old age.

Sometimes, mild memory loss is accompanied by achange in personality as well: Someone who is normally outgoing and gregariousmay become moody and withdrawn, for example. In other cases of dementia, suchas frontal-temporal lobe dementia, a patient may become disinhibited and unableto control inappropriate outbursts. These can also be signs of something morethan normal brain aging. Yet once again there are causes that aren'tnecessarily related to Alzheimer's, such a depression, a common condition thatneeds to be monitored and treated. We shouldn't be victimized by a sense of hopelessness and anxiety. Theattitude to take is that we live in the era of "the new old age"where we can reasonably expect to retain healthy functioning for many decades.

Theearliest stage of Alzheimer's disease is termed mild cognitive impairment (MCI). Although most of usstart to have a harder time remembering names and numbers as we age, someonewith MCI may start to forget recent conversations and events or have difficultyperforming tasks that were once easy for them. Memory loss and other brain changes start to interfere with theperson's daily life and make it difficult or even unsafe for them to work orcontinue with their usual activities. However, these changes aren't profoundenough to affect the person's ability to function socially. Mild impairment,unfortunately, doesn't stabilize at that level. In a given year, about 15percent of those newly diagnosed with MCI will progress to dementia, most to Alzheimer's disease.Within eight years, 80 percent will have progressed.

For adiagnosis of dementia, problems must be present in at least one other area ofcognitive function besides memory loss: The areasare language, attention, problem solving, spatial skills, judgment, planning ororganization. In the early stages of Alzheimer's,the person may typically have difficulty with remembering information andevents and with learning new things. They may get lost easily, even on familiarroutes near their home. They may also start to have trouble reading, speakingor writing as their vocabulary shrinks.

In themoderate stages of Alzheimer's, gaps in memory and thinking are noticeable. Forinstance, someone with moderate-stage Alzheimer's might be unable to rememberhis/her phone number or address. Assistance isn't yet needed for eating orusing the toilet.

Advanced-stagesymptoms of Alzheimer's are the most difficult, especially for caregivers,because dependence on them becomes complete. Speech isreduced to simple phrases, then single words. Eventually there may be no speechat all. The person becomes extremely fatigued and apathetic, but can still bevery aggressive or paranoid at times. Assistance is needed with dressing andbasic bodily functions, in time leading for many to complete loss of mentalabilities.

These are hard facts to face, surely, butdespair is not inevitable by any means. Not every cause of dementia is untreatable.Some, such as those caused by thyroid disorders or vitamin deficiencies, can bereversed. But most dementia is caused by degeneration in the brain that takesplace over time and progresses insidiously. Besides Alzheimer's, examplesinclude multi-infarct dementia (dementia caused by multiple tiny strokes) ordementia caused by repeated trauma -- concussions suffered in sports, forexample.

It is now recognized that Alzheimer's is themost common form of dementia, afflicting about 70 percent to 80 percent ofelderly individuals who are afflicted. (Researchers now believe thatAlzheimer's begins a long time, possibly even decades, before the firstsymptoms of memory loss are seen.) In Alzheimer's nerve cells and theirconnections, call synapses, deteriorate mostly in the cerebral cortex andhippocampus. The cerebral cortex is an extremely convoluted structure that'sassociated with higher mental functions: thought, reasoning, sensation andmotion. The hippocampus plays a crucial role in learning and in processingvarious forms of information, such as long-term memory and spatial memory. Boththe cerebral cortex and the hippocampus lose mass and shrink as the diseaseadvances.

Several key proteins are deposited in the brainduring the course of Alzheimer's disease, including beta amyloid protein andtau protein. The pathology of Alzheimer's begins with the accumulation of betaamyloid deposited outside of brain nerve cells in senile plaques and on brainblood vessels. Excessive beta-amyloid then triggers the aberrant aggregation ofthe tau protein in neurofibrillary tangles, which choke the inside of nervecells. The buildup of both deposits leads to nerve cell dysfunction anddegeneration, eventually causing Alzheimer's-type dementia. All four of the knownAlzheimer's genes carry defects that lead to excessive accumulation ofbeta-amyloid in the brain. Most Alzheimer's scientists believe that it's theexcessive accumulation of beta amyloid proteins that initiates the nerve celltangles to form, which then leads to neurodegeneration and dementia.

We'vegiven only a sketch of a disorder that is occupying a vast force of researcherswho advance our knowledge every year. In Alzheimer's knowledge is power, andit's fair to say that a shift of power is occurring. Medical science is nolonger bewildered by this disorder, and real hope for better diagnosis isalready bright, while sure signs of hope are also growing in terms of treatmentand prevention. The reality we will be talking about in the next post is far lessgrim than it was even a few years ago.

The Green House Project

2011-11-11T10:36:00.001-08:00

organizational structure

THE GREEN HOUSE® Project creates small, intentional communities for groups of elders and staff to focus on living full and vibrant lives. This Model is a radical departure from traditional nursing homes and assisted living facilities – altering facility size, interior design, organizational structure, staffing patterns, and methods of delivering skilled professional services.

Each Green House home is unique, but all are intimate spaces, with warm interior designs and staff that help elders live better and with more independence. In a Green House home, elders receive a high level of personalized and professional medical care and support with daily living, without feeling that their lives are being disrupted or overtaken.

The Green House model replaces large, impersonal, nursing facilities with inviting, comfortable, social living spaces that research shows help elders to live happier, more satisfying lives. To experience an on line Green House model general overview webinar 24/7 click here.

Architecture: Warm, Smart and Green

Green House homes look and feel like homes – because that’s exactly what they are.

Each Green House residence is designed to be a home for six to ten elders (twelve with a financial hardship exception), blending architecturally with neighboring homes. The Green House homes are characterized by their vibrant outdoor spaces and pleasing aesthetics both inside and out. Each elder has a private room with a private bathroom. The elders’ rooms allow ample sunlight and are clustered around a shared living room with a hearth, an open kitchen and dining area. The homes are relatively small, allowing many elders to get around without wheelchairs. Safety features are carefully built into each home.

The Green House homes all have three common elements:

Warm: The warmth one feels when walking into a Green House home comes from a floor plan that encourages social interaction, as well as comforting decor, furnishings and people.
Smart: Green House homes are created to use cost-effective, smarttechnology, such as wireless pagers and electronic ceiling lifts.
Green: “Green” in The Green house model means growth. The intentionally designed environment, from the open kitchen to the yard, promotes opportunities for elders to live to their fullest potential. Green House homes are designed to let in the natural world, through plenty of sunlight, plants and garden areas, and outdoor access.

The Green House Life: It’s a Home

The Green House homes encourage elders to make themselves at home. Elders can decorate their private room and bath with their own belongings. They have easy access to all areas of the house, including the kitchen, laundry, outdoor garden and patio. They are free from schedules and can eat, sleep and entertain themselves when and where they choose. Meals are prepared in the open kitchen and served at a large, well-set dining table where staff, elders and visitors all gather and socialize.

The Green House model was developed by Dr. William Thomas and is rooted in the Eden Alternative, a model for cultural change within nursing facilities. Dr. Thomas’ vision is to build a new type of residence that will be a real home to the elders who live there, while meeting regulatory requirements.

Two New Green House Stories

2011-11-11T09:35:00.001-08:00

Posted in Aging in Community, Dementia | Tagged intentional communities, St. Johns | Leave a comment

Posted on October 11, 2011 by Allen

Everyonewho is building Green Houses® is delighted by the stories their predecessorstell about people rediscovering old capabilities in the new living environment.But we all hope to see it for ourselves with our own elders.

AtSt. John’s new Green Houses, we haven’t even opened yet, but we have alreadyseen our first such example of the power of this model.

Lastweek, as the staff were undergoing in-house culinary training, they invited oneor two elders and their families each day to come by and have lunch. OnWednesday, I was meeting with some design expert friends, and our Guide,Rebecca Priest, invited us to come out and join Don and his family for lunch.

Don,formerly of MIT, now lives with moderately advanced dementia. At the nursinghome, he needs the fairly heavy assistance of two staff members to move fromone chair to another. As such, he came out to the Green House in a wheelchair van and after a tour, hewas transferred with a fair amount of effort into a chair at the dining roomtable.

Allof us joined Don and his family for the better part of an hour, enjoying soup,sandwiches and good company.

Whenthe time came to leave, Don’s wheelchair was brought over and he quickly stood,and with minimal help from one staff member, transferred back to hiswheelchair. Rebecca said, “Hey Don, what’s the deal? It takes two people tohelp you transfer at the home!”

Don slowly replied, “Well…I guess I’msupposed to be sick over there.”

A humorous postlude to the story isthat later that day, the mattresses arrived. We have broken another barrier by buying afull-sized bed for every elder in the Green Houses. We couldn’t find a singlevendor in the country that would make us one, so Rebecca just went to the localmattress store and purchased 10 Tempurpedic-style residential beds for eachhouse.

The doorbell rang, and there was a truck withtwo puzzled looking men at the door. One said, “We’re supposed to deliver a bunch of mattresses to somenursing home around here.”

He was assured that he was inthe right place. As hewalked into the living room, his jaw dropped, and he said, “This doesn’t looklike any nursing home I’ve ever seen before!”

Posted in UncategorizedEdenAlternativeGreen House

Restoring Memories Through Movies

2011-11-11T08:31:00.001-08:00

A theater program isigniting the minds of dementia patients

by: Sally Abrahms |from: AARP Bulletin | October 17, 2011

Four times a year, therestored 1933 Coolidge Corner Theatre in Brookline, Mass., outside Boston, isfilled with walkers and canes belonging to people with Alzheimer's and other forms of dementia, as well as their adult children, spousesand paid caregivers. The tailor-made programs are helping improve the mentaland physical conditions of the patients.

Related

· Diagnosing Alzheimer's early.Read

· Treating Alzheimer's disease with an insulinspray. Read

· New science on Alzheimer's disease, cause andcure. Read

What it is

During these specialquarterly programs, silence is not golden. The audience is expected to singalong to movie musicals — On the Good Ship Lollipop, for example — and pipe up when theyrecognize famous lines, such as Humphrey Bogart's never-to-be-forgotten,"Here's looking at you, kid." As they wait for the program to begin,photos of Hollywood movie stars and comedians from their era — Cab Calloway,Clark Gable, Abbott and Costello, Cary Grant, Greta Garbo — flash on the giantscreen while music popular in the '30s, '40s and '50s wafts through speakers.

"WhenI watched, I got a little choked up," says Betty Smith, 73, who came froman assisted living facility. "I may not have sung out loud, but I sang inmy heart!"

Afacilitator engages the audience, with interactive guessing games about a staror movie, followed by an explanation of the five-minute segment they will see.Afterward, questions draw them out about their life, past and present.

The effect

Peggy Cahill, programcoordinator at Artists for Alzheimer's (ARTZ), a nonprofit based inWoburn, Mass., that creates cultural opportunities for people with dementia andtheir caregivers and that developed the Coolidge program, noticed somethinginteresting on the feedback forms she received from nursing staff and familymembers: Many noted dementia participants came away with more positive moodsthan usual and a greater attention span that lasted beyond the theaterexperience.

They were also morecommunicative and engaged with staff and peers, and reminisced about theirpast.

Caregiversreported a reduction of symptoms often associated with Alzheimer's, includinganxiety, aggression, apathy and agitation. "Surveys showed that even aweek after the event they were still talking about it, asked to go again andencouraged others to join them. That dispels the belief that people withAlzheimer's can't look toward the future and only live in the present,"says Cahill.

PattyMarquis, a social worker, has brought her parents, Bob and Elaine, to theprogram twice. "My father knows all the actors and names them the way heused to when he was younger," says Marquis, 61. "We are laughingtogether. Usually I go to their assisted living place and just sit with themfor lunch. This is an outing!"

Families give up on these people anddon't do anything to stimulate them, says Elizabeth Taylor-Mead, the formerassociate director of the Coolidge who worked there for 10 years. "Ourprogram isn't going to cure them of Alzheimer's, but it opens doorways to theirmemory. They are totally present in the moment and answer questionscorrectly."

The program has another surprisingbenefit. During the sessions, "you can't tell who's the caretaker andwho's the person with dementia," says Taylor-Mead.

"Carepartners get to see that their mother, father, husband or wife can still beengaged in arts and cultural programs and have their own personalities and lifestories and not be defined by their diagnosis," says Sean Caulfield, acofounder of ARTZ.

The program also gives adult children the chance to learnnew things about their parents. After watching Paul Robeson sing "Old Man River"inShow Boat, onewoman volunteers that she once saw him perform and that "my parents werevery happy that a black man at that time had become such a successfulsinger." Asked what sacrifices they have had to make in life, like Bogielying to Bergman to save her from the Nazis, another answers, "Having togive up my 4 1/2 pound mini-Yorkie to move to assisted living."

SaysCaulfied, "It allowsfamily members to simply be spouses and children without exclusively beingcaregivers."

Next: Lessisolation, more socializing at the Coolidge. >>

Tailoringto Caregivers' Concerns

Thestaff of ARTZ and the Coolidge know that people with dementia can be anxious in new situations,and work hard to make them feel comfortable and safe. Caregivers can alsosoothe dementia sufferers in other ways:

· Physical touch, such as massage, can helpthe person relax. Reiki, the Japanese healing practice using energy, is anotheroption gaining interest. The Administration on Aging has awarded a grant totrain nursing home aides and other health care professionals in how to doreiki. Finda reiki practitioner in your area.

· Listen to favorite music — whether it's a tape, CDor iPod loaded with songs the person loved — or reminisce together over oldphoto albums.

· Continuetrying to engage him orher in activities enjoyed before dementia, such as art appreciation orart-making or gardening.

· Ifthere's too much stimulation or noise, move to a quieter place.

· Change an activity or create a newenvironment,whether it's going for a drive or a walk, or reading out loud

For more suggestions, check out the Alzheimer'sAssociation

A social thing

Beingat the Coolidge also tackles anotherstruggle dementia patients and their caregivers have: isolation. Bothsides can see others struggling with similar challenges, and can socialize withpeers.

RobertBaker, 74, a Cambridge, Mass., real estate owner and manager recently geared upfor his third silver screen trip to the Coolidge. "I don't openly admit tohaving dementia," says Baker, "and part of me is in denial, but theseare my people and I want to be with them. I realize I'm not alone outthere."

SusanForster, an art appraiser, brings her mother to the Coolidge faithfully."People are very important to my mother," says Forster, who moved hermother from New York to Boston last year so she could live with her. "Thisis a wonderful way for her to be social."

Perhapssoon there will be similar programs across the country. Not only does theCoolidge plan to offer events again in 2012, next January the theater and ARTZwill propose replicating the program at the annual conference of independenttheaters around the country, and offer training sessions to help them create theirown version of "Meet Me at the Coolidge."

Sally Abrahms writes on aging and boomers fornational magazines, newspapers and websites. She is based in Boston.

PlayThese Clips and See What Memories They Spark

Films like the Wizard of Oz can encourage discussion in dementia patients. — Photo by Stock

Wizard of Oz. Go

Ask:

· Ifyou could travel anywhere in the world, where would you go?

· Whatdo you think is really at the end of rainbows?

Casablanca. Go

Ask:

· Whatis your love story?

· Whatdo you love?

· Howdid the war affect your family?

· Haveyou ever sacrificed for a cause?

I Love Lucy. Go

Ask:

· Whatwas the best job you ever had?

· Whatwas the worst job you ever had?

· Ifyou could have any job in the world, what would it be?

Fiddler on the Roof. Go

Ask:

· Whatwould you do if you had all the money in the world?

· Isthere any specific cause that you would support?

· Wouldyou give money to your family?

Stormy Weather. Go

Ask:

· Didyou ever go to a dance club? If yes, which one(s)?

· Whodid you dance with when you were there?

· Whatwere the popular dances of that period?

Alzheimer's Disease -- The Front Row

2011-11-08T11:25:00.000-08:00

Alzheimer's Reading Room

The Alzheimer's Reading Room is the number one source of lifenews for the entire Alzheimer's community. The site focuses onAlzheimers, medical science, wellness, and the art of Alzheimers caregiving.

· HOMESUNDAY, NOVEMBER 6,2011

Knowing that the day is coming when your lovedone -- won't know you-- is the most horrific feeling of them all for anAlzheimer's caregiver.

By Bob DeMarco
Alzheimer's ReadingRoom
September, 2010

Are Alzheimer's Caregivers
the Forgotten?

I often use the term "living Alzheimer's from the frontrow". This term describes caregivers that watch Alzheimer's take itscourse 24 hours a day, seven days a week.

Once Alzheimer's disease strikes, Alzheimer's caregivers get to witness thecraziness that comes with Alzheimer's day in and day out.

If you think it is disconcerting to see someone suffering from Alzheimer's fora few hours, a few days, or a week, think about what it might be like -- forevery hour of every day for years.

Most people give up trying to understand Alzheimer's disease. Why? BecauseAlzheimer's is difficult to think about. Most people sitting in the back rowsdon't want to think about Alzheimer's. It is too painful. They'll leave thethinking and doing to the person sitting in the front row. Feeling?

___________________________________

On one hand, you have the person that has Alzheimer's disease; on the otherhand, you have the person responsible for caring for that person -- theAlzheimer's caregiver.

The caregiver is responsible for the safety and care of the Alzheimer'ssufferer. They are also responsible for their own emotional and psychologicalwell being. A dual burden.

Alzheimer's kills the brain of the person suffering from Alzheimer's. It will alsotry and kill the brain of the Alzheimer's caregiver. I doubt that many peopleknow or understand this burden. If they knew or understood they would move up acouple of rows. Get out of the back row -- maybe.

Did you ever sit in the back row at a play? Every sit in the front row at aplay? The view is very different.

___________________________________

Unless you are an Alzheimer's caregiver it is difficult to understand orcomprehend what it is like living in the front row. The behavior. The illness.The death sentence. Why are their so many empty seats?

Until you sit in the front row you won't beable to comprehend what it is like living in the "front row".

___________________________________

In the early days of caring the caregiver deals with a disease that isdifficult, sometimes impossible, to understand.

Alzheimer's disease turns the world of the caregiver upside down. Imagine aperson you know all or most of your life and their behavior changes-- suddenly-- and for the worse. This person, your loved one, begins to act out behaviorsthat you have never seen or experienced. You are forced to try and deal withthese behaviors. It is not easy.

When a person hears something that is mean or nasty they usually react inanger. This is a normal behavior -- the "norm". Using these behaviorshelp you cope. This is the way you have been coping your entire life. No onewants to be treated harshly.

The typical Alzheimer's caregiver is bombarded with mean spirited behavior overand over. Since they are made of flesh and blood they often feel angry,frustrated, and sad when it happens. There is nothing wrong with these kinds offeelings.

When an Alzheimer's caregivers decides to strike back in the form of anargument, or an equally harsh behavior they soon learn that not only does thismake matters worse, the Alzheimer's sufferer often goes into a shell.

Alzheimer's sufferers, as the disease progresses, lose the ability to forgive,apologize, or make-up. The words, actions and behaviors of the Alzheimer'ssufferer are often a product of the disease, rarely a product of intentionalthought.

Alzheimer's caregivers need to learn to understand that Alzheimer'sbehaviors are a product of the disease. The typical responses thatcaregivers have been making over the course of their life -- coping, the"norm" -- won't accomplish anything other than worsening thesituation in Alzheimer's world. Caregivers need to work on new copingstrategies, and developing new "norms" of behavior.

When Alzheimer's caregivers "fight back" they usually ends upsuffering from another array of negative feelings -- guilt, blame, inadequacy,and the ultimate worst -- depression.

___________________________________

Alzheimer's caregivers when pushed to the edge often feel like screaming.

Caregivers soon learn that this behavior won't work. Caregivers gradually cometo the realization that this only makes matters worse -- much worse.

You cannot reason with a person suffering from Alzheimer's disease. Theybelieve what they say to be true and nothing you say will can change it. Itusually takes a long time before caregivers learn this lesson.

The lesson -- it is up to the caregiver to make the necessary changes. Tochange the dynamic. It's all on you caregiver. Sooner is better than later.

Cure, Hope, Recovery, Survival

2011-11-08T11:15:00.000-08:00

Alzheimer's Reading Room

MONDAY,NOVEMBER 7, 2011

I envision a time inthe future when patients and their families would know they aren’t doomed.

By Mary Gazetas
Alzheimer's ReadingRoom

After the initial scare, (and shock) she proceeded with a biopsyand got the news it was cancer. A small tumor - but cancer nevertheless. Iincreased my visits to be with her during some important steps she had to take.

I was spending less timein the Alzheimer’s world where my husband lives to begin to enter into herworld in terms of what would happen next and her feelings. We wentcamping and did several nice day trips in her boat, going slow, drifting down ariver that had coloured maple leaves floating on the water with us, whilewatching salmon return to spawn.

It didn’t take her long to take the high road. She didn’t waste anytime byasking herself, “Why me?”

She believed she could hit it hard and began to surround herself with a team offriends who sent love and prayers.

Last week I was with herfor a few days when she had a mastectomy done.

I’m amazed and impressed by the health care team who’re helping her. She hasdoctors, coaches, mentors, physiotherapists and best of all, a team of “navigators.”

The other thing I could not help be aware of is the stark reality, thecontrast, of a language used compared to what we hear, or don’t hear, for thosewith Alzheimer’s.

I heard the words “CURE,HOPE, RECOVERY, SURVIVAL” spoken often.

Words I never hear in conversations with families and caregivers for peopleliving with severe dementia.

When Bob posts articles related to an urgent need for a cure for Alzheimer’s Icouldn’t agree more. Won’tit be a miracle when this hideous disease can be prevented and or stopped inits tracks.

One day there will be words like “cure and recovery” for those stuck in theworld of Alzheimer’s - a world my husband once described to me as being in astate of “less than minus.”

I envision a time in the future when patients and their families would knowthey aren’t doomed.

Instead, it would be a time similar to the many brave women who develop abreast cancer that is curable.

Alzheimer’s survivors won’t be wearing the colour pink. I don’t what colourthey could wear – maybe red, purple? Whatever – but a symbol that says to theworld – we finally have a cure. We can win this one.

How can nutrition help prevent Alzheimer's?

2011-11-06T10:51:00.000-08:00

How can nutrition affect your health, as far as risk ofAlzheimer's disease? I have a strong family history and want to do everythingthat I can to avoid getting Alzheimer's.

Diet and Fitness Expert Dr. Melina JampolisPhysician Nutrition Specialist

Expert answer

Since November is Alzheimer's disease awareness month, Ithought this was a great time to answer this question.

According to the Alzheimer's Association, 5.4 million Americans are living withAlzheimer's disease, and it is the sixth-leading cause of death in the United States and the fifth-leadingcause of death in those aged 65 and older.

Age and family history/genetics are major risk factors, but emerging research issuggesting that lifestyle factors including diet and exercise can also plan animportant role in prevention.

Eatinga heart healthy diet like the DASH diet or the Mediterranean diet is essential,as brain health and heart health are very closely related.

Here are a few other things you should consider.

Up your E. Vitamin E is a very potent anti-oxidant andappears to play a role in staving off Alzheimer's. Research shows that those with the highest amounts intheir diet (from food, not supplements), have a significantly lower risk ofAlzheimer's disease.

Top foodsources: include sunflower and safflower oil, nuts and seeds (almonds,sunflower seeds, peanuts, hazelnuts) and green vegetables including broccoliand spinach. Make sure to consume green vegetables with a little healthy fat tomaximize the absorption of vitamin E.

Go for fish. Gettingadequate amounts of poly-unsaturated omega 3 fatty acids found in fish isassociated with a lower risk of Alzheimer's disease. DHA (docosahexaenoicacid), which is present in larger amounts in the brain, appears to beparticularly important.

Low levels of DHA in the blood have been associated withworsening mental function. Try to eat at least two 4-ounce servings of fish perweek. Fatty fish like salmon, tuna, lake trout and sardines are highest inomega 3s. If you don't have access to fresh fish, canned is a good alternative,just look for low sodium options whenever possible.

If you don't eat fish, take a fish oil capsule daily or tryout some of the new foods fortified with DHA including soy milk, yogurt andnutrition bars.

Move more. Moderate to heavy exercise can decrease your risk of Alzheimer's by up to45%. Moderate exercise includes house and yard work, climbing stairs,and sports like bowling and golf. And start early -- exercising in your teenscan protect you later in life.

Being fithas been shown to decrease brain shrinkage, a common finding indementia, and may help fight depression, which also commonly occurs inAlzheimer's disease patients. Aim for an hour per day, but every little bitadds up.

Spicethings up. India has a much lower incidence of Alzheimer's disease,and many researchers believe it may be due in part to their extensive use ofturmeric (a component of curry) in their cooking.

Turmericcontains a powerful phytonutrient called curcumin which may help protect thebrain from Alzheimer's disease in several ways. Research is currentlyunderway to determine the optimal intake (very little taken by mouth actuallygets to the brain) but consuming curry regularly along with a little healthyfat may help and certainly can't hurt.

Makechanges to your lifestyle today, and be consistent, to decrease your risk ofAlzheimer's disease. All of the things that I mentioned work much better forprevention than for slowing of progression or treatment.

Antidote for the Alzheimer's Epidemic

2011-11-04T19:03:00.000-07:00

TUESDAY, NOVEMBER 1, 2011

Contributed by: Dennis Fortier,President, MedicalCare Corporation

Surely, you’ve all readthe grim reports about Alzheimer’s disease. The advancing age of the USpopulation will usher forth an Alzheimer’s epidemic in the coming decade. Theemotional toll of this epidemic will be immeasurable, and the financial impactcould bankrupt the Medicare system.

Thatdire version of the story might sell newspapers, but it doesn’t really reflectthe available options to a nation with a will to fight back. The good news is: we can manage this problem. And no elusive scientific discoveriesare required to do so. We merely need to implement the medical knowledgethat is already in hand.

To beclear, scientific advances yielding better treatments and more accuratediagnostic approaches will greatly improve our prospects in this battle. We need to aggressively fund research and push forward on that front. However,it is important to recognize the sizeable gap between the high standard ofcare that is achievable based on the current state of medical knowledge, andthe lagging standard of care that is routinely implemented in a primary careclinic.

Pragmatism: Closing the Gap

Closingthe gap in the Alzheimer’s field could yield tremendous benefits. It willtake some effort, but we can achieve such a goal through pure effort and publicwill. Compared to solutions based on the hope of new scientificdiscoveries, this has the appeal of greater certainty.

Toclose the clinical gap, we must address three key areas where “commonpractices” are significantly lagging behind “best practices”.

1) Education: We need to promote public education and awareness aboutthe many, common medical conditions that impair memory (depression, anxiety,sleep disorders, thyroid malfunction, vitamin deficiency, medications,etc). This will reduce stigma associated with memory loss and encouragepatients to be more proactive in expressing early concerns to their physicians.

2) Proven Clinical Standards: We need to help primary care physicians adopt provenstandards for differentiating between signs of normal aging and subtle symptomscaused by medical conditions that impair memory. Out-dated assessments foridentifying dementia are aiming too late in the process; we need to facilitateeffective intervention at an earlier, subtler stage of impairment. Newerclinical assessment tools can ensure that emerging problems are addressed in atimely manner, prior to unnecessary disease progression and declining health.

3) Effective Treatment: We need to ensure that patients,physicians, and caregivers can recognize what effective treatment looks like;doing so will aid ongoing compliance with a prescribed regimen of care.Compared to treatments for other causes of memory loss, expectations fortreating Alzheimer’s disease are often unrealistic. For AD, effectivetreatment is not a complete reversal of symptoms, but rather, a slowing offunctional decline. Importantly, everyone must appreciate that propertreatment for AD involves more than just drugs; it also encompasses properdiet, regular physical exercise, and tight control of other chronicconditions.

Concretesteps in these three areas will narrow the gap between “current practices” and“best practices”. Doing so will mitigate the impact from two of the most destructivecomponents of the Alzheimer’s disease problem: under-diagnosis andunder-treatment.

Under-Diagnosis

Accordingto the World Alzheimer’s Report 2011, published byAlzheimer’s Disease International, there may be 36 million demented people inthe world and 28 million of them are undiagnosed. That is, no doctor has diagnosed the underlying cause ofthe dementia and prescribed treatment to resolve the problem. Accordingto well-accepted prevalence data, a large percentage of these people aredemented due to Alzheimer’s disease (AD). For all of those people, theirdisease is progressing unabated, their symptoms are progressing, and theongoing costs of their care are moving irreversibly upward.

Under-Treatment

As of today, AD cannot be cured, but a timelyintervention including careful management of diabetes and hypertension, aproper diet, physical activity, and poly-therapy with approved Alzheimer’sdrugs, can significantly slow progression for a meaningful percentage of those28 million people who have been neither diagnosed nor treated. Additionally,many other conditions that cause memory loss are both common and completelytreatable. If no diagnostic work-up is performed, these conditions gountreated at the ongoing peril of the patient’s health, which ultimately drivesthe cost of care higher.

Certainly, a better-educated public, timelierdiagnosis of medical conditions that impair memory, and robust treatment areall central facets of a solution to the Alzheimer’s epidemic. Each hasdeep economic implications underscoring the importance of addressing them. Asshown by examples like the Orange County Vital Aging Program*, all ofthese can be achieved through pragmatic, community-based efforts to improveknowledge and raise standards of care among primary care physicians.

Overall, the looming threat of an Alzheimer’sepidemic is a real problem that may well have painful consequences. We would all like more certaintythat scientific efforts will soon thwart the disease, but we cannot yet counton that with high confidence. In the meantime, a concerted effort topragmatically implement the scientific advances from the past decade ofresearch will significantly reduce its likely impact.