Alzheimer's management from diagnosis to late stage

With the aging of the population, the incidence and prevalence of Alzheimer's disease (AD), already the most common type of dementia, are projected to rise. A diagnosis of AD has implications for ongoing care across all settings and providers—whether you are the primary-care provider (PCP) and made the diagnosis, assuming the care of a new patient with AD, or a consultant asked to provide input for a chronic problem of someone with AD. A diagnosis of AD adds to the complexity and cost of care. This article focuses on post-diagnostic care and is based on the 2008 report from the California Workgroup on Guidelines for Alzheimer's Disease Management.1


Because it is a slowly progressive neurodegenerative condition that may continue for a decade or more after diagnosis, management of AD must change over time. The majority of patients with AD (and their caregivers) receive their medical care from PCPs.2 PCPs are key to ensuring the care provided is appropriate to the patient's needs and situation. 

Assessment


Appropriate treatment plans and goals that meet all of a patient's needs require ongoing comprehensive assessment of the patient, the family, and the living situation. This assessment should include daily functioning, cognitive status, comorbid medical conditions, behavioral symptoms, medications (prescription and OTC), living arrangement and safety, and need for palliative and/or end-of-life care. The use of standardized instruments to assess function, cognition (Table 1), and behavior (Table 2) can help the PCP monitor changes.

Longitudinal monitoring of disease progression and response to therapy, along with regular health maintenance examinations, are essential.3,4 The frequency of visits depends on a number of factors, including the patient's clinical status, likely rate of change, current treatment plan, need for any specific monitoring of treatment effects, and the reliability and skills of the patient's caregivers and support system. Assessment should occur at least every six months or any time there is a sudden change in behavior or increase in the rate of decline. 


It is essential that assessment also include identification of the primary caregiver and the adequacy of family and other support systems. Assessment of the caregiver should include knowledge, social support, health status (including psychiatric symptomatology), and ethnic and cultural issues.5 Family caregivers are central to the PCP's assessment and care of the person with AD.6 Therefore, establishing and maintaining a relationship with caregivers is crucial in the ongoing care of patients with AD.7 This relationship is most important as the disease progresses into the moderate and severe stages, at which time family members who oversee day-to-day care and implement and monitor treatment become the real managers.8 





Beginning at the time of diagnosis and continuing throughout the course of the disease, ongoing assessment of a patient's decision-making capacity is essential. Capacity assessment is decision-specific, with more complex decisions requiring higher cognitive function than simpler decisions.9 Since patients with AD experience decreasing cognition and will eventually lose all decision-making ability, identification of a surrogate decision maker early in the course of the disease is important. In the beginning stages of AD, patients typically retain their decision-making capacity and are able to appoint a surrogate decision-maker for the time in the future when they will no longer retain this capacity.10 In addition, identification of the patient's and family's culture, values, primary language, and literacy level is necessary to assure that an appropriate treatment plan is developed and can be carried out.


Treatment


In addition to monitoring function and cognitive decline, ongoing regular management of general health and other medical conditions is essential to the care of the patient with AD. Management goals and interventions need to be appropriate to the patient's (if capable) and family's preferences and modified as the disease progresses. When prescribing medications (whether for AD, associated behaviors, or other comorbid conditions), it is important to assess the ability of the patient and family member or caregiver to adhere to the regimen. Medications should be reviewed with attention to discontinuing nonessential medication, simplifying the dosing schedule, and using aids (e.g., pillboxes). 


Appropriate treatment of comorbid medical conditions is crucial and may require extra vigilance and adjustment depending on where the AD patient is in the course of the illness. The degree of cognitive impairment impacts the ability to manage other chronic and acute medical conditions, and the appropriate management of these other conditions can impact both cognition and function in AD. Whenever a new treatment or intervention is considered or a change in the current treatment is anticipated, the health-care provider must assess the patient's and the caregiver's ability to understand and participate in the decision-making process.11 


Schedule a meeting with every patient and his or her family about the use of FDA-approved medications for the treatment of cognitive decline. The currently available cholinesterase inhibitors (i.e., donepezil, galantamine, rivastigmine) all work by blocking acetylcholinesterase. These medications have similar efficacy and side effects. Patients and family members must be given realistic expectations about the medications, which are aimed at slowing—not reversing—cognitive decline. 




Reports from clinical trials and meta-analyses of individual agents and the class of acetylcholinesterase inhibitors demonstrate a small, statistically significant benefit in cognition, activities of daily living, and behavior over a period of six to 18 months.12-15 GI side effects, primarily nausea or diarrhea, occur in 10%-15% of patients and may require discontinuation of the treatment. Rivastigmine is available in a patch form, which makes it more tolerable. Patients with bradycardia or bradyarrhythmias have an increased risk for syncope or dizziness with cholinesterase inhibitors.12 Treatment with one of these agents should be started on diagnosis or after six months' duration of AD symptoms. Evaluation for adverse drug reaction should occur after two to four weeks of treatment. Reassess effectiveness every six months. 


Memantine, an N-methyl D-aspartate receptor antagonist widely used in Europe, is currently approved for use in the United States for moderate AD. Memantine has also been shown to have a small effect on cognition, function, and behavior.16 Use this medication either alone or in conjunction with an acetylcholinesterase agent. 


At this time there is insufficient evidence to support the recommendation of other pharmacologic treatments for patients with AD. Studies of antioxidant therapy with vitamin E,17,18 ginkgo biloba,19 estrogen,20,21 and nonsteroidal anti-inflammatory agents22 have failed to demonstrate any clear benefit in preventing or postponing cognitive decline or affecting function or behavior.


Behavioral symptoms and mood disorders are common in people with AD as well as their caregivers, affecting up to 90% of patients at some time during the illness.23 These include a broad spectrum of symptoms (e.g., apathy, wandering, agitation, verbal and physical aggression, and psychosis) that can vary from intermittent and mildly annoying to life-threatening. Behavioral symptoms in AD patients are among the most difficult aspects of care for patients, caregivers, and health-care providers. There is agreement that except in emergency situations, nonpharmacologic strategies are the preferred treatment approach for behavioral problems.24,25 This should include such approaches as environmental modification, task simplification, appropriate activities, and physical exercise. Consider psychotropic medication only when nonpharmacologic approaches have been exhausted and have failed to reduce agitation or improve behavioral symptoms. The use of psychotropic medications is controversial, and no agents are currently approved by the FDA for use in people with AD or other dementias. If used, medication should be targeted to a specific behavior, for narrowly specified and predetermined goals, with close monitoring for side effects and drug interactions.26,27 Start with a low dose, and increase slowly until the behavior improves or adverse effects emerge.3


Education and support


Education and support services for AD patients and their families are critical for effective long-term management of this progressive disease. Medical care must be integrated with education that connects patients and caregivers to support organizations. Patients and caregivers should be provided with linguistically and culturally appropriate educational materials and referrals to community resources, including support groups, legal counseling, financial resources, respite care and counseling, and consultation on care needs and options. 


Discuss the diagnosis, progression, treatment choices, and goals of AD care in a manner that is consistent with the patient's and family's values, preferences, culture, education, and ability. This discussion should occur at the time of initial diagnosis and recur periodically throughout the course of the disease. If feasible, encourage patients to complete an advance directive with identification of surrogates for making medical and legal decisions along with statements of their care preferences. 


Caregiver assessment, education, and community referral have been shown to lead to improved well-being and enhanced quality of life for the caregiver as well as the recipient.28,29 This counseling is often beyond the scope and time of a routine office visit and may require an additional appointment. At a minimum, providers should be familiar with agencies and services in their community that can provide assistance and routinely and repeatedly refer families and caregivers.


Legal considerations


Since cognitive decline over time will deprive the patient with AD of the ability to think clearly, major legal and financial decisions should be addressed early in the course of the disease, while the patient is still capable. Health-care providers occupy a unique position of trust and influence that provides an ideal opportunity to discuss the importance of basic legal and financial planning. 


A capacity evaluation may be required before a patient's chosen surrogate or substitute decision-maker can be authorized to act on his or her behalf. Utilize a structured approach to the assessment of capacity with attention to the relevant criteria for the kind of decisions being required of the patient. Depending on the state, a capacity declaration is usually required when one or more clinicians consider conservatorship of a patient with AD. 


AD patients are at increased risk for abuse and neglect.30 Because of their cognitive and functional decline, it is particularly challenging to obtain information about potential abuse from these patients. Providers need to actively monitor for evidence and report all suspicions of abuse to the proper authorities. Abuse can take many forms, including physical, sexual, and financial. Abuse may also involve neglect, isolation, abandonment, or abduction. Monitoring requires that the provider be alert to both the patient's and the caregiver's circumstances. In addition, be aware that the patient's behavior may be a reaction to a disturbing or dangerous situation in his or her environment.31 


The cognitive, visuospatial, and other impairments associated with AD increase the risks associated with driving. In some states, the diagnosis of dementia in a licensed driver requires automatic reporting. Patients with moderate or severe AD should not drive.32 In patients with mild or early disease, careful consideration of the ability to safely operate a motor vehicle is required.22





SPECIAL CONSIDERATIONS


Early-stage AD


Improved recognition of signs of cognitive decline has led to earlier diagnosis of AD. This is resulting in a growing population of early-stage individuals who are able to benefit from active involvement, education, and support interventions. Patients in the early stages of AD have unique concerns that need to be recognized and addressed. These individuals should be involved in planning their own care. Discussions about the implications of the diagnosis with respect to work and family may require more frequent medical visits and/or referral to community resources. Clinicians need to be able to provide patients in early-stage AD with recommendations that promote continued functioning, assist with independence, and maintain cognitive health (including physical exercise, stimulation, and social support). Support groups specifically for individuals with early-stage AD and their caregivers are being developed in many communities to address the special concerns and needs of this population.


End-of-life care


The course of AD is one of slow, gradual decline. As the dementia worsens and the ability to understand treatment options and participate in decision making declines, care should shift to a focus on relief of discomfort. The advisability of routine screening tests, hospitalization, and invasive procedures should be made based on a previously discussed care plan, patient wishes, and severity of the dementia. As the end of the patient's life nears, emphasize options that maximize comfort and avoid futile treatments that may not provide relief and could prolong the dying process. Generally, tube feeding is not recommended for patients with severe dementia.33 Consider referral to hospice sooner rather than later to provide the patient and family optimal support. 


A diagnosis of AD is often the beginning of a long period of decline in cognition and function that is frequently accompanied by behavioral changes. These changes can be challenging for everyone, including health-care providers. Evidence-based recommendations for ongoing assessment, treatment, education, support, and legal considerations enable clinicians to better meet the needs of patients and assist families and caregivers over the course of the disease.

Dr. Segal-Gidan is director of the Rancho/University of Southern California Alzheimer's Disease Research Center in Los Angeles. She has no relationships to disclose relating to the content of this article.


References


1. California Workgroup on Guidelines for Alzheimer's Disease Management. Guideline for Alzheimer's Disease Management. Available at www.caalz.org/PDF_files/Guideline-FullReport-CA.pdf.


2. Landefield CS, Callahan CM, Woolard N. General internal medicine and geriatrics: building a foundation to improve the training of general intern­ists in the care of older adults. Ann Intern Med. 2003;139:609-614.


3. APA Work Group on Alzheimer's Disease and Other Dementias, Rabins PV, Blacker D, et al. American Psychiatric Association practice guideline for the treatment of patients with Alzheimer's disease and other dementias. Second edition. Am J Psychiatry. 2007;164(12 Suppl):5-56.


4. Hogan DB, Bailey P, Carswell A, et al. Management of mild to moderate Alzheimer's disease and dementia. Alzheimers Dement. 2007;3:355-384. 


5. Dunkin JJ, Anderson-Hanley C. Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology. 1998;51:S53-S60.


6. National Institute for Health and Clinical Excellence (2006). Dementia: supporting people with dementia and their carers. Available at www.nice.org.uk/nicemedia/live/10998/30321/30321.pdf.


7. Bultman DC, Svarstad BI. Effects of physician communication style on client medication beliefs and adherence with antidepressant treatment. Patient Educ Couns. 2000;40:173-185.


8. Barrett JJ, Haley WE, Powers RE. Alzheimer's disease patients and their caregivers. Medical care issues for the primary care physician. South Med J. 1996;89:1-9. 


9. Karalwish J. Measuring decision-making capacity in cognitively impaired individuals. Neurosignals. 2008;16:91-98. Available at www.ncbi.nlm.nih.gov/pmc/articles/PMC2717553/.


10. KL Braun KL, JH Pietsch JH, PL Blanchette, eds. Cultural Issues in End-of-Life Decision Making, Thousand Oaks, Calif.: Sage Publications; 2000:31.


11. Larson EB. Management of Alzheimer's disease in a primary care setting. Am J Geriatr Psychiatry. 1998;6(2 Suppl 1):S34-40.


12. Birks J, Harvey RJ. Donepezil for dementia due to Alzheimer's disease. Cochrane Database Syst Rev. 2006;1:CD001190. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001190/frame.html.


13. Birks J. Cholinesterase inhibitors for Alzheimer's disease. Cochrane Database Syst Rev. 2006;1:CD005593. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD005593/frame.html.


14. Winblad B, Cummings J, Andreasen N, et al. A six-month double-blind, randomized, placebo-controlled study of a transdermal patch in Alzheimer's disease - rivastigmine patch versus capsule. Int J Geriatr Psychiatry. 2007;22:456-467.


15. Loy C, Schneider L. Galantamine for Alzheimer's disease and mild cognitive impairment. Cochrane Database Syst Rev. 2006;1:CD001747. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001747/frame.html.


16. McShane R, Areosa Sastre A, Minakaran N. Memantine for dementia. Cochrane Database Syst Rev. 2006;2:CD003154. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003154/frame.html.


17. Sano M, Ernesto C, Thomas RG, et al. A controlled trial of selegiline, alpha-tocopherol, or both as treatment for Alzheimer's disease. The Alzheimer's Disease Cooperative Study. N Engl J Med. 1997;336:1216-1222. 


18. Doody RS, Stevens JC, Beck C, et al. Practice parameter: management of dementia (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2001;56:1154-1166. Available at www.neurology.org/cgi/content/full/56/9/1154.


19. Birks J, Grimley EV, Van Dongen M. Ginkgo biloba for cognitive impairment and dementia. Cochrane Database Syst Rev. 2007;2:CD003120. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles
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20. Hogervorst E, Yaffe K, Richards M, Huppert FA. Hormone replacement therapy to maintain cognitive function in women with dementia. Cochrane Database Syst Rev. 2009;1:CD003799. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003799/frame.html.


21. Shumaker SA, Legault C, Rapp SR, et al. Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: the Women's Health Initiative Memory Study: a randomized controlled trial. JAMA. 2003;289:2651-2662. Available at jama.ama-assn.org/cgi/content/full/289/20/2651.


22. Tabet N, Feldmand H. Ibuprofen for Alzheimer's disease. Cochrane Database Syst Rev. 2003;2:CD004031. Available at mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004031/frame.html.


23. De Deyn PP, Katz IR, Brodaty H, at al. Management of agitation, aggression, and psychosis associated with dementia: a pooled analysis including three randomized, placebo-controlled double-blind trials in nursing home residents treated with risperidone. Clin Neurol Neurosurg. 2005;107:497-508.


24. Ayalon L, Gum AM, Feliciano L, Areán PA. Effectiveness of nonpharmacological interventions for the management of neuropsychiatric symptoms in patients with dementia: a systematic review. Arch Intern Med. 2006;166:2182-2188. Available at archinte.ama-assn.org/cgi/content/full/166/20/2182.


25. Cohen-Mansfield J. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. Am J Geriatr Psychiatry. 2001;9:361-381.


26. Lyketsos CG, Colenda CC, Beck C, et al. Position statement of the American Association for Geriatric Psychiatry regarding principles of care for patients with dementia resulting from Alzheimer disease. Am J Geriatr Psychiatry. 2006;14:561-572.


27. Gambert SR. Alzheimer's disease for the primary care physician. Compr Ther. 1997;23:174-178.


28. Feil DG, MacLean C, Sultzer D. Quality indicators for the care of dementia in vulnerable elders. J Am Geriatr Soc. 2007;55 Suppl 2:S293-301.


29. Logsdon RG, McCurry SM, Teri L. Evidence-based psychological treatments for disruptive behaviors in individuals with dementia. Psychol Aging. 2007;22:28-36.


30. Dyer CB, Pavlik VN, Murphy KP, Hyman DJ. The high prevalence of depression and dementia in elder abuse or neglect. J Am Geriatr Soc. 2000;48:205-208.


31. Warshaw G, Gwyther L, Phillip L, Koff T. Alzheimer's Disease: An Overview of Primary Care. Tucson, Ariz.: University of Arizona Health Sciences Center Press; 1995.


32. Dubinsky RM, Stein AC, Lyons K. Practice parameter: risk of driving and Alzheimer's disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology. 2000;54:2205-2211. Available at www.neurology.org/cgi/content/full/54/12/2205.


33. Volicer L. Medical issues in late-stage dementia. Alzheimers Care Q. 2005;6:29-34.


By Freddi Segal-Gidan, PA, PhD

Changing the Trajectory of Alzheimer's Disease - News Release

ALZHEIMER’S DISEASE TO COST UNITED STATES

$20 TRILLION OVER NEXT 40 YEARS

Washington, D.C., May 19, 2010 – A new report from the Alzheimer’s Association, “Changing the Trajectory of Alzheimer’s Disease: A National Imperative” shows that in the absence of disease-modifying treatments, the cumulative costs of care for people with Alzheimer’s from 2010 to 2050 will exceed $20 trillion, in today’s dollars. The report, which examines the current trajectory of Alzheimer’s based on a model developed by the Lewin Group for the Alzheimer’s Association, also shows that the number of Americans age 65 and older who have this condition will increase from the 5.1 million today to 13.5 million by mid-century.

“We know that Alzheimer’s disease is not just ‘a little memory loss’- it is a national crisis that grows worse by the day,” said Harry Johns, President and CEO of the Alzheimer’s Association. “Alzheimer’s not only poses a significant threat to millions of families, but also drives tremendous costs for government programs like Medicare and Medicaid.”

Total costs of care for individuals with Alzheimer’s disease by all payers will soar from $172 billion in 2010 to more than $1 trillion in 2050, with Medicare costs increasing more than 600 percent, from $88 billion today to $627 billion in 2050. During the same time period, Medicaid costs will soar 400 percent, from $34 billion to $178 billion. One factor driving the exploding costs by 2050 is that nearly half (48 percent) of the projected 13.5 million people with Alzheimer’s will be in the severe stage of the disease – when more expensive, intensive around-the-clock care is often necessary.

Changing the Current Trajectory

The new report is not all bad news, however, as it shows that Medicare and Medicaid can achieve dramatic savings – and lives could be significantly improved – with even incremental treatment improvements. Based on the same Lewin Group model, the report explores two alternate scenarios: one in which a disease-modifying treatment could delay the onset of Alzheimer’s by five years, and another in which a hypothetical treatment could slow the progression of this condition.

“Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s disease,” said Johns. “While the ultimate goal is a treatment that can completely prevent or cure Alzheimer’s, we can now see that even modest improvements can have a huge impact.”

Impact of a Hypothetical Treatment Delaying Onset: A treatment breakthrough that delays the onset

of Alzheimer’s by five years – similar, perhaps, to the effect of anti-cholesterol drugs on preventing heart disease – would result in an immediate and long-lasting reduction in the number of Americans with this condition and the cost of their care. A breakthrough that delays onset by five years and begins to show its effect in 2015 would decrease the total number of Americans age 65 and older with Alzheimer’s from 5.6 million to 4 million in 2020.

-more-

Assuming the breakthrough occurred in 2015:

• The number of people age 65 and older with Alzheimer’s would be reduced by 5.8 million in 2050 – 43% of the 13.5 million Americans who would have been expected to have the condition in that year would be free of the conditions.

• In 2050, the number of people in the severe stage would also be much smaller with the treatment breakthrough – 3.5 million instead of the expected 6.5 million.

• Annual Medicare savings compared to current trends would be $33 billion in 2020 and climb to $283 billion by mid-century, while annual Medicaid savings would increase from $9 billion in 2020 to $79 billion in 2050.

Impact of Hypothetical Treatment Slowing Progression: A treatment breakthrough that slowed disease progression – much as we have managed to do with HIV/AIDS and several cancers – would result in far fewer people with Alzheimer’s disease in 2050 in the severe stage when care demands and costs are greatest. Assuming the breakthrough occurred in 2015:

• In 2020, the number of people age 65 and older with Alzheimer’s disease in the severe stage would drop from 2.4 million to 1.1 million. In 2050, the number of people in the severe stage would decline from an expected 6.5 million to 1.2 million.

• Annual Medicare savings compared to current trends would be $20 billion in 2020 and jump to $118 billion in 2050, while Medicaid savings would be $14 billion in 2020 and $62 billion in 2050.

Addressing the Chronic Underinvestment in Research

Ultimately solving the Alzheimer crisis will mean addressing the chronic underinvestment in research. This forecast of a rapidly aging population and dramatic rise in the number of Alzheimer cases in the coming years should catapult the government into action.

“Given the magnitude and the impact of this disease, the government’s response to this burgeoning crisis has been stunningly neglectful,” said Johns. “Alzheimer’s is an unfolding natural disaster. The federal government has sent a token response and has no plan. Immediate and substantial research investments are required to avoid an even more disastrous future for American families and already overwhelmed state and federal budgets,” continued Johns. “For the human effects and the country’s fiscal future, we must change the trajectory of the Alzheimer crisis.”

“The impact of Alzheimer’s disease - both in terms of lives affected and costs of care – is staggering. As government leaders contend with the best approaches to rein in Medicare and Medicaid costs, we know Alzheimer’s will place a massive strain on an already overburdened health care system,” said Robert J. Egge, Vice President of Public Policy for the Alzheimer’s Association. “This report highlights that while we strive for the ideal – a treatment that completely prevents or cures Alzheimer’s disease – even more modest, disease-modifying treatments would provide substantial benefits to families and contribute to the solvency of Medicare and Medicaid.”

The Association is working to enact critical legislation to address these issues. The National Alzheimer’s Project Act creates a National Alzheimer’s Project Office and an inter-agency Advisory Council responsible for developing a national plan to overcome the Alzheimer crisis. Drawing on the expertise residing in various government agencies as well as individuals living with the disease, caregivers, providers and other stakeholders, this office would provide strategic planning and coordination for the fight against Alzheimer’s across the federal government as a whole, touching on a broad array of issues from research to care to support.

After the embargo lifts, the full text of the Alzheimer’s Association’s “Changing the Trajectory of Alzheimer’s Disease: A National Imperative” can be viewed at www.alz.org/trajectory.

By Alzheimer’s Association

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s.

RELEASED MAY 19 AT 10AM ET.

CONTACT: Toni Williams, 202.638.8666; toni.williams@alz.org

Alzheimer’s Memory Problems Originate with Protein Clumps Floating in the Brain, Not Amyloid Plaques

Researchers at Mount Sinai School of Medicine have found that Alzheimer’s is not caused by amyloid plaques, as previously thought by many researchers......

Using a new mouse model of Alzheimer's disease, researchers at Mount Sinai School of Medicine have found that Alzheimer's pathology originates in Amyloid-Beta (Abeta) oligomers in the brain, rather than the amyloid plaques previously thought by many researchers to cause the disease.

The study, which was supported by the "Oligomer Research Consortium" of the Cure Alzheimer Fund and a MERIT Award from the Veterans Administration, appears in the journal Annals of Neurology.

"The buildup of amyloid plaques was described over 100 years ago and has received the bulk of the attention in Alzheimer's pathology," said lead author Sam Gandy, MD, PhD, Professor of Neurology and Psychiatry, and Associate Director of the Alzheimer's Disease Research Center, Mount Sinai School of Medicine. "But there has been a longstanding debate over whether plaques are toxic, protective, or inert."

Several research groups had previously proposed that rather than plaques, floating clumps of amyloid (called oligomers) are the key components that impede brain cell function in Alzheimer's patients. To study this, the Mount Sinai team developed a mouse that forms only these oligomers, and never any plaques, throughout their lives.

The researchers found that the mice that never develop plaques were just as impaired by the disease as mice with both plaques and oligomers. Moreover, when a gene that converted oligomers into plaques was added to the mice, the mice were no more impaired than they had been before.

"These findings may enable the development of neuroimaging agents and drugs that visualize or detoxify oligomers," said Dr. Gandy. "New neuroimaging agents that could monitor changes in Abeta oligomer presence would be a major advance. Innovative neuroimaging agents that will allow visualization of brain oligomer accumulation, in tandem with careful clinical observations, could lead to breakthroughs in managing, slowing, stopping or even preventing Alzheimer's.

"This is especially important in light of research reported in March showing that 70 weeks of infusion of the Abeta immunotherapeutic Bapineuzumab® cleared away 25 percent of the Abeta plaque, yet no clinical benefit was evident."

The Mount Sinai team included Michelle Ehrlich, MD, Professor of Pediatrics, Neurology, and Genetics and Genomic Sciences, and John Steele, a Mount Sinai graduate student, who performed the key analyses of the behavioral data. Dr. Charles Glabe, an oligomer expert and a member of the Cure Alzheimer Fund research consortium, is also a co-author of the paper. Dr Gandy is also a neurologist at the James J Peters Veterans Affairs Medical Center, an affiliate of Mount Sinai School of Medicine.

About The Mount Sinai Medical Center

The Mount Sinai Medical Center encompasses both The Mount Sinai Hospital and Mount Sinai School of Medicine. Established in 1968, Mount Sinai School of Medicine is one of few medical schools embedded in a hospital in the United States. It has more than 3,400 faculty in 32 departments and 15 institutes, and ranks among the top 20 medical schools both in National Institute of Health funding and by U.S. News & World Report. The school received the 2009 Spencer Foreman Award for Outstanding Community Service from the Association of American Medical Colleges.

The Mount Sinai Hospital, founded in 1852, is a 1,171-bed tertiary- and quaternary-care teaching facility and one of the nation’s oldest, largest and most-respected voluntary hospitals. In 2009, U.S. News & World Report ranked The Mount Sinai Hospital among the nation’s top 20 hospitals based on reputation, patient safety, and other patient-care factors. Nearly 60,000 people were treated at Mount Sinai as inpatients last year, and approximately 530,000 outpatient visits took place.

For more information, visit http://www.mountsinai.org/.

By Bob DeMarco
Alzheimer's Reading Room

Should Mom Still Be Driving?

By Heather Frenette, RN, MSN, CMC

Whether or not an elderly person should be driving is a question I am frequently asked. It is a very touchy subject and most children do not want to force the issue with their parents. Getting a drivers license is a rite of passage that most teenagers look forward to. Having to give up that license can be very difficult. It affects a person’s independence. When a person has to surrender their driver’s license, they suddenly are dependent on others to get around. Going to the grocery store, going to the doctor and even going out with friends can become difficult without transportation.


There are several warning signs to look if you are concerned about a loved one’s safety behind the wheel. If you notice any of the following 17 warning signs, it is time to evaluate whether your loved one should continue driving.

1. signaling incorrectly

2. trouble making turns

3. changing lanes improperly

4. confusion at highway exits

5. difficulty parking

6. stopping inappropriately in traffic

7. confusing the brake and gas pedals

8. driving too fast or slow

9. hitting curbs

10. failing to notice stop signs or traffic lights

11. reacting slowly to traffic situations

12. failing to anticipate potential dangers

13. getting lost in familiar places

14. scrapes or dents on car, house, garage, etc.

15. traffic violations

16. near-misses

17. accidents

There are several options for driving evaluation. One option is to have an evaluation through a driving evaluation center. Although there are companies that offer these services, many of these programs are offered through larger rehabilitation centers as well. Another option is to have a physician write a letter to the Department of Motor Vehicles (DMV) expressing their concern about their patient’s driving ability. Once the DMV receives this letter, they will send out a letter to your loved one either revoking their license or requesting them to come in for a written test and/or an on the road driving test. Successful completion of the testing is necessary for the license to remain valid.

It can be hard for family members to address the topic of driving safety with their loved one. Involving the primary care physician in this process can be helpful because it takes the role away from the family. Another option is to consult with a Geriatric Care Manager. Care Managers are typically well versed in the resources to evaluate driving and can facilitate not only the testing, but also put a plan in place to address the need for transportation once the person stops driving. Again, involving an independent third party takes the pressure off the family and takes some of the emotion out of the situation.

Addressing driving concerns with your loved one can be stressful and very difficult. It is an emotional topic with significant consequences. Having a plan to both evaluate your loved one’s driving and to accommodate their transportation needs if they stop driving will help make this difficult task somewhat easier.

Alzheimer's, Sleep, and Patterns

"With Alzheimer's disease it is all about establishing patterns of behavior. Whether it is the pee pee war, poop war, or sleeping you have to get into a pattern. You have to establish a pattern of behavior that is conducive to accomplishing a mission...."

Every so often I receive an email asking for advice on the Alzheimer's patient and sleeping. Some dememtia sufferers get up frequently at night, and others stay up all night.

When I receive these emails, I am immediately concerned. There is a very high correlation between sleep deprivation and depression. In the case of the Alzheimer's caregiver, the combination of stress and not getting a good night's sleep can lead to depression. This helps explain, in part, why 40 percent of Alzheimer's caregivers suffer from depression.

In this most recent email, our reader explains that his mother is staying up all night. The first solution the doctor offered was to put his mother on antipsychotic drugs. Yikes. Fortunately, our reader has his eye on the ball and has learned that the combination of Alzheimer's and antipsychotic drugs in not only a bad idea -- its dangerous.

See...Antipsychotics, Aricept, and a Good Point Guard

I am not a doctor, and I don't pretend to be a doctor. The potential solution I am offering here is as a fellow Alzheimer's caregiver.

The first question I always ask is, is the Alzheimer's patient sleeping during the day. Usually the answer is Yes. Well, you can only sleep so much in any 24 hour day. If you get 3 or more hours of sleep during the day, it is likely that you won't sleep much at night or that you will wake up in the very early AM. In order to sleep 6 hours or more, through the night, this pattern needs to be changed.

With my mother the question I have learned to ask myself in every situation is -- what is the pattern? What is the pattern of behavior?

In the pee pee war, I finally realized I had to get my mother into the bathroom every two hours. I learned by simple observation that when my mother said those magic words -- I have to pee -- it was too late. She is older and she can't hold it in. Her pee pee muscle is weak. I'll interject here. I learned how to make my own pee pee muscle stronger through a couple of simple exercises.

Our reader explained that his mother does sleep during the day. Maybe most of the day. At night, when it is time to sleep, he puts his mother in bed and then turns on the TV. He know she is up and watching TV all night because he hears her talking to the television via the baby monitor he installed in her room.

Baby monitor, excellent idea. TV on, bad idea. Awake at night hearing mother talk and the TV on, very bad.

I don't watch television in the bedroom. I believe it is a bad idea. The bed is for sleeping. If you use the bed for sleeping you are establishing the correct pattern of behavior. If you use the bed to watch TV you are diluting the correct pattern of behavior. I will interject another tidbit here, I believe television in the bedroom is a bad idea if you are married. You can decide that one for yourself. Bed equals sleep.

After our reader told the doctor that he would not give his mother antipsychotic drugs, the doctor came up with another solution -- valium. So it now appears our reader will try the combination of Ambien and Valium. Double yikes.

First off, if Ambien doesn't work from the get go then it doesn't work. If it doesn't work, jettison the drug. Get rid of it. All drugs are designed to accomplish a mission. Sometimes they work very well for a person. Sometimes they don't work at all for a person. This is a simple fact of life. You are wasting your time, money, and maybe even hurting yourself when you try kicking a dead horse. A dead horse is not going to get up and starting running. Put the bubble up above your head. Imagine yourself kicking a dead horse. Let me know.

For some reason I will never fully understand, I wonder why doctors are addicted to writing prescriptions? You would think an experienced doctor would be asking the same questions I am asking here. What is the pattern of behavior?

Wouldn't it make more sense to first change the pattern of behavior before working your way through the PDR? The Physicians Desk Reference contains all the FDA approved drugs, a description of the drugs, and a picture of the drugs. Rather than trying all the drugs, how about this? Try reading the PDR when you get in bed. Sleep is on the horizon, trust me.

I am confident that changing the pattern of behavior is the best potential solution. Is if fool proof? Will it work every time? No. But I know that it can work because I suggested it to some readers and they told me it did work.

My advice is simple and straight forward. Start doing things during the day that engage the person suffering from Alzheimer's disease. Keep them up and moving to the degree possible. Involve them in normal every day activities like going to the store. If they have trouble walking try what I did, I get my mother to drive around in the motorized cart with me in Walmart while we shop.

Try and remember, what did the person suffering from Alzheimer's like to do before Alzheimer's? Puzzles, crossword puzzles, read the comics, art, music, going to the mall for no good reason? Try to engage them in these activities during the day.

Key word here day -- get them into some bright light. Sun is good. A well lit store is good.

Here are some simple activities. Take them to McDonald's for a cup of coffee. Ask for the senior discount. Take them for a ride in the car. Library anyone? Let them sit over near the kids section. This works wonderfully well. If they are not a wanderer, my mother isn't, this really works well on several levels.
If you want a person to sleep at night, you can't let them sleep all day. Alzheimer's or not, you sleep all day, you won't sleep at night. Simple observation.

With Alzheimer's disease it is all about establishing patterns of behavior. Whether it is the pee pee war, poop war, or sleeping you have to get into a pattern. You have to establish a pattern of behavior that is conducive to accomplishing a mission.

Whether it is pee pee, poop, or sleep in won't happen in a New York minute. You have to work on it. It takes time to establish a pattern of behavior. Here is the good news. Once you establish a good pattern of behavior it will stick if you keep reinforcing the pattern.

If you fall into a bad pattern of behavior guess what? It will persist. It will persist until you decide to change the pattern. To change a pattern of behavior to have to be committed to change. You have to be goal oriented. You have to be working toward that goal each day.

Or, you can keep kicking a dead horse.
By Bob DeMarco, Alzheimer's Reading Room

Should Dad Still Be Driving?

Most people remember learning to drive and the feeling of independence it gave them. This is much of the reason it is so hard for an older adult to give up driving. When addressing the issues of driving with a parent, it is important to understand why driving is important to them. Is it an independence issue? Is it because they need transportation to appointments and errands? Is it an issue of control over their life? If transportation is the concern, then having alternative options to assist them in getting to appointments, the grocery store and other errands will be critical. If independence or control is the issue, it may be helpful to point out that this is not about taking away their independence or control, it is about their safety and equally important, the safety of others on the road. Many times older adults are less concerned about their own safety and well being than they are of the safety and well being of others, especially children.

This issue may be better received if presented by a person in a position of respect, such as a physician or an attorney. Another option is for a comprehensive assessment by a Certified Care Manager. In addition to assessing and making recommendations about the client’s current functional level, the appropriateness of their living environment and their overall safety, the Care Manager can assess driving safety and alternatives to driving. Many times information which will not be well received by the older adult is better delivered by a neutral third party than it is from a family member, especially a child.

By Heather Frenette, RN, MSN, CMC

Holidays and Alzheimer's

The holidays are typically a joyous time, a time for friends and family to come together, a time for food and festivities. Holidays with a person coping with Alzheimer’s disease can be a challenge. The activity and noise can be confusing, the gatherings of people can be disruptive, and the lights and sounds can be upsetting. There are things you can do to help make the holidays more manageable.

1. Minimize the loud noises that we often associate with the holidays. A football game on television, holiday music and multiple conversations around a person with Alzheimer’s can be confusing. A calm, quite gathering is usually best. Limiting the number of people at a gathering can also help with the noise factor.

2. Keep decorations simple. Blinking lights and decorative displays can be confusing. Avoid artificial fruits, which can be mistaken for real food. In addition, do not use candles or decorations with an open flame.

3. Keep the day short so that it is not over-stimulating or over-tiring. The same is true for travel.

4. Whenever possible, hold events in familiar places. This will help minimize confusion for a person with memory loss.

5. Engage the person with Alzheimer’s but keep it simple and familiar. Putting ornaments on a tree, decorating cookies or singing familiar holiday songs can be enjoyable options.

6. If the person lives in a facility, try bringing them home for a short visit once or twice beforehand. If the home visit seems too stressful, consider visiting the facility instead. This will help minimize confusion and agitation.

7. Schedule festivities and visits for the best time of day for the person with Alzheimer’s. Typically morning or early afternoon is better than later in the day.

8. Consult a Geriatric Care Manager to assess your loved one and develop a plan of care to help you manage the holiday season.

Celebrating the holidays with a person coping with Alzheimer’s disease requires some planning and may require a change to the prior year’s routine. Following these steps will help make the holiday joyous and less confusing for the person with memory loss. Remember, although Alzheimer’s disease affects a person’s ability to remember, they can still enjoy the holidays in the moment.

By Heather Frenette, RN, MSN, CMC

Chief Operating Officer- Arizona Care Management