Statement by Eric J. Hall, President and Chief Executive Officer
Alzheimer's Foundation of America
Hearing by the United States Senate Special Committee on Aging
“The Way Forward: An Update from the Alzheimer’s Study Group”
March 25, 2009
Chairman Kohl, Ranking Member Martinez and distinguished Committee members:
On behalf of the Alzheimer’s Foundation of America (AFA), thank you for holding this important hearing on “The Way Forward: An Update from the Alzheimer’s Study Group.” We are pleased to submit this statement in support of the Committee’s efforts to raise awareness about Alzheimer’s disease in general, as well as AFA’s efforts to promote early detection of memory problems and to serve as the national face of care for individuals and loved ones affected by the disease in particular.
Introduction: Our Shared Mission
According to the National Institute on Aging, an estimated 2.4 million to 4.5 million Americans have Alzheimer’s disease —a progressive, degenerative disorder that attacks the brain's nerve cells, resulting in loss of memory, thinking and language skills, behavioral changes, and, ultimately, death. Alzheimer’s disease recently surpassed diabetes as the sixth leading cause of death among American adults. Notably, mortality rates for Alzheimer’s disease are on the rise, unlike heart disease and cancer death rates which are continuing to decline. It is therefore critical that we all stand together for care as the incidence from this devastating disease continues to climb.
AFA ( www.alzfdn.org ) is a national, nonprofit 501(c)(3) organization that focuses on providing optimal care to individuals with Alzheimer’s disease and related illnesses, and their families. While we hope for a cure, with none on the horizon, our objective is to address the educational, emotional, medical, practical and financial needs of the millions of Americans dealing with the brain disorder on a daily basis, as well as to raise awareness of the disease and the needs of the dementia population through our own advocacy efforts and in collaboration with other organizations.
We achieve these goals through myriad programs and services available at our national headquarters in New York—such as a toll-free hotline, counseling by licensed social workers, bilingual educational materials, respite care grants and a free caregiver magazine—and groundbreaking national initiatives spearheaded by AFA, including the AFA Quilt to Remember, Dementia Care Professionals of America, and National Memory Screening Day as part of a wide-ranging campaign to promote early diagnosis and treatment. In addition, we unite nearly 1,000 member organizations nationwide that provide hands-on programs and services in local communities that help improve quality of life for those with the disease and their families; these organizations continue to operate independently while benefiting from being part of a larger network, including the opportunity for nonprofit members to apply to AFA for grants to develop or enhance programs and services in their local communities.
AFA believes that America needs a consumer-centered long-term care strategy for dementia that can serve the aging baby boomer population until hypothesized disease modifying interventions are available and widely deployed. Most long-term care is provided at home by family members—middle age and older women are the backbone of the caregiver work force. According to the Centers for Medicare and Medicaid Services ( CMS), an estimated 70 percent of nursing home residents have some degree of cognitive impairment, and studies show that at least half of all assisted living residents aged 65 and older have dementia or a related illness. Nursing home placement often results from hospital care of demented inpatients where hospital staff is often ill-equipped to mitigate functional decline during hospitalization. Optimal use of community resources such as faith-based organizations is sporadic.
AFA’s long-term care policy incorporates several basic concepts articulated by our members. First, the best long-term care option is the kind that you never use. Second, effective long-term care requires a combination of high tech and high touch. Third, quality assurance, transparency, and consumer empowerment are essential components to promote both cost efficiency and improvements in care.
I. Reducing the Burden of Chronic Disease
AFA considers the focus on chronic disease management of the Committee as an important effort at reducing the risk of dementia or lengthening the duration of time to onset of disease. To this end, AFA is engaged in a number of efforts:
- Aggressive management of cardiovascular risk factors, mental and physical activity, good nutrition, stress reduction and medication compliance are important components of the AFA prevention program, outlined on our new prevention Web site, www.alzprevention.org.
- AFA is the leading advocacy organization for promoting early detection of Alzheimer’s disease and related dementias through memory screening.
- AFA serves as a strong voice in support of a care coordination Medicare benefit.
The Importance of Early Detection
One of the main arguments in favor of memory screening is that there are serious deficiencies in the health care system’s ability to recognize dementia. A 2006 editorial in the Journal of the American Geriatric Society estimated that missed diagnoses are greater than 25 percent of the dementia cases and may be as high as 90 percent.1 Not surprisingly, individuals with mild dementia are more likely to go unrecognized by physicians than persons with moderate to severe dementia2; however, most researchers agree that most available medications are best given earlier in the disease when the individual has mild symptoms.3-4 In addition, while close friends and family can play an important role in detection of dementia, many elderly live alone and have limited contact with distant relatives or friends.
There are additional barriers to early detection6 of dementia:
- Individuals are often unaware, deny or minimize the severity of symptoms, or are concerned about stigma.
- Access to quality care is a key issue for all individuals with dementia and for those of minority racial and ethnic backgrounds in particular.
- Clinician evaluation may be time consuming and not well reimbursed.
- Many, especially minority populations, believe that memory loss and cognitive decline are a normal part of aging.
Also, most people are not inclined to discuss memory concerns with their doctors. A survey conducted during AFA’s 2007 National Memory Screening Day found that 68 percent of respondents had concerns about their memory. However, while more than 80 percent had visited their primary care physician within the last six months, fewer than one in four of those with self-identified memory problems had discussed the issue with their physician.7
A memory screening is a simple and safe evaluation tool that assesses memory and other intellectual functions and indicates whether additional testing is necessary. Memory screening can be done in a medical environment (e.g. dementia clinic, physician’s office) or in a community setting (e.g. senior center, pharmacy).
Several screens have adequate sensitivity and specificity to serve as routine, cost-worthy evaluations. In fact, validated memory screening instruments demonstrate 80 percent to 90 percent or higher sensitivity and specificity in reviewed studies 8 —similar to other established screening tests such as a mammography9 and Pap smear.10
Age is the biggest risk factor for Alzheimer’s disease. Based on the fact that the incidence of dementia doubles every five years between 65 and 95, some experts recommend that annual memory screening is beneficial for everyone 75 and older, and for people 65 and older with a family history or other risk factors.11 Other important risk factors are genotype and concurrent medical conditions.
The main arguments against memory screening are the unsubstantiated assertions that there are many potential adverse consequences.12 However, screening is neither a diagnostic or case finding process.
Screening tests in general simply help determine whether diagnostic tests should be considered. A “positive” result from a memory screening should never be interpreted as a diagnosis of Alzheimer’s disease or a related illness or other illnesses—no more than a “positive” mammogram means an individual has breast cancer.
National Memory Screening Day
Memory screenings are one of the major focal points of the AFA’s national initiatives. For the past six years, AFA has sponsored National Memory Screening Day (NMSD), www.nationalmemoryscreening.org, annually in collaboration with community organizations to promote early detection of memory problems as well as Alzheimer's disease and related illnesses, and encourage appropriate intervention. AFA is particularly grateful for Chairman Kohl's efforts to encourage Americans to be screened and to increase public awareness of National Memory Screening Day in 2008.
In November 2008, qualified health care professionals at more than 2,200 sites nationwide offered free educational materials about dementia and successful aging to an estimated 54,000 participants. The goal of NMSD is to steer individuals toward proper diagnosis and treatment in order to improve quality of life for themselves and their families.
Qualified health care professionals—including social workers, pharmacists, physician assistants, nurse practitioners, and doctors—provide the screenings. The face-to-face screening takes place in a private setting in such venues as Alzheimer's agencies, senior centers, long-term care facilities, doctors' offices and pharmacies; only the individual being tested and the clinician are present. The screening usually takes less than 15 minutes on average and consists of a series of questions and/or tasks designed to test memory, language skills, thinking ability, and other intellectual functions.
A memory screening is not used to diagnose any particular illness and does not replace consultation with a qualified physician or other health care professional. The person who administers the screening reviews the results with the person screened, and suggests whether follow up with a physician or other health care professional for more extensive testing is necessary. Those with abnormal scores and those who still have concerns are encouraged to pursue further evaluation. The person who was screened will receive the screening results to bring to their health care professional. Screening sites also provide information about successful aging, including the benefits of proper diet, physical exercise, mental stimulation, socialization, and stress management.
Highlights from National Memory Screening Day 2008:
- Nearly 2,200sites in all 50 states, Washington, DC, Guam, Puerto Rico and the Virgin Islands held confidential face-to-face memory screenings at no charge as part of 2008 NMSD. The record number of participating sites represented a 10 percent increase over 2008; for the first time, screenings were held in all 50 states.
- In addition, the entire chain of Kmart pharmacies—1,100—in the U.S. and territories participated. Based on its success with memory screenings on NMSD in past years and at other times of the year, Kmart changed its Gold K Day to coincide this year with NMSD.
- States that had the largest number of participating sites were Florida (189); Michigan (132); California (124); Pennsylvania (121); and Ohio (115).
- Some sites reported very large turnouts. For example, Oaklawn, Goshen, IN, 106 participants; Senior Day Services of El Dorado County, Placerville, CA, 104; Suma Health System, Cuyahoga Falls, OH, 103; Mercy Ridge Retirement Community, Timonium, MD, 91; Inter Valley Health Plan at Ontario Senior Center, Pomona, CA, 84; Brevard Alzheimer’s Foundation, Melbourne, FL, 80 (site: Cocoa Beach Public Library); Riverglen House of Littleton, NH, 79; Princeton Senior Resource Center, Princeton, NJ, 73; Humboldt Senior Resource Center, Eureka, CA, 75.
- The majority of people screened were 65+, fairly evenly split between 65 to 74 and 75 to 84.
- Venues included local Alzheimer’s organizations, long-term care facilities, senior centers, private doctors’ offices, universities, hospitals, research labs, hospice, government agencies, churches, councils on aging, and pharmacies.
- In a partnership with Center for Medicare & Medicaid Services, several State Health Insurance and Assistance Programs SHIPs (funded by CMS) participated in NMSD, viewing it as a vehicle to reach hundreds of prospective Medicare beneficiaries to inform them about Medicare, open enrollments for Medicare Part D and Low-Income Subsidy, and Prescription Advantage. Three SHIPs supported by the Boston Regional Office — Connecticut, Massachusetts and New Hampshire — participated in NMSD with representatives at 18 sites.
- More than 20 national organizations supported the event, including: Alliance for Aging Research, American Academy of Nurse Practitioners, American Geriatrics Society, AGS Foundation for Health in Aging, American Medical Women’s Association, American Pharmacists Association, American Psychiatric Association, American Public Health Association, Geriatric Mental Health Foundation, Mental Health America, National Asian Pacific Center on Aging, National Association of Chain Drug Stores Foundation, National Association of Social Workers, National Conference of Gerontological Nurse Practitioners, National Council on Aging, National Gerontological Nursing Association, National Hispanic Council on Aging, National Hispanic Medical Association, SEIU Healthcare, The Gerontological Society of America, and The National Caucus and Center on Black Aged, Inc.
Beginning in January 2009, AFA began listing year-round memory screenings on its www.nationalmemoryscreening.org Web site. AFA will hold National Memory Screening Day 2009 on November 19.
“Memory Matters” Study
In early December, building on the momentum of National Memory Screening Day, AFA released “Memory Matters,” a report that shatters unsubstantiated criticism related to memory screenings and instead emphasizes the safety and cost-effectiveness of these tools and calls on Congress to develop a national dementia screening policy. The Associated Press devoted its health column to the study release. I have attached the study and AP column for your reference.
Once an individual is diagnosed, geriatric assessment and care coordination services are essential to care and cost savings. According to CMS, 95 percent of Medicare beneficiaries with Alzheimer’s disease have one or more other chronic conditions, such as coronary heart disease, congestive heart failure, diabetes, and COPD. Outpatient and inpatient medical care must be adjusted to meet the special needs of persons with cognitive disabilities. Studies have shown that healthcare expenditures for this population can be reduced, quality of care improved, and health outcomes enhanced when care is delivered in a coordinated fashion. Geriatric assessment and care coordination services are essential to the care of these older adults. When a comprehensive geriatric assessment is combined with coordinated care, studies have shown improved or stabilized function, reduced mortality, and changed patterns of healthcare utilization.
Unfortunately, the current Medicare program does not pay healthcare providers for care coordination. Instead, physicians are paid only for episodic face-to-face care, not the continuous care, occurring both during and between visits that is required to effectively manage multiple chronic conditions. Passage of the Geriatric Assessment and Chronic Care Coordination Act, sponsored by Senator Blanche Lincoln and Senator Susan Collins, and the Independence at Home Act, sponsored by Senator Ron Wyden, will create a patient-centered approach under Medicare that will benefit patients with multiple chronic conditions and lower their healthcare utilization rates and we thank them all for their leadership.
II. Strengthening the Workforce
AFA encourages the Committee to continue its groundbreaking focus on workforce availability and competency issues that impact long-term care. The impending national health care manpower shortage has been a focus of the Committee and most studies that examine challenges to long-term care. AFA is involved in a number of activities to strengthen the geriatric workforce:
- AFA is proud to be a new member of the Eldercare Workforce Alliance and strongly supports the Retooling the Health Care Workforce for an Aging America Act , sponsored by Senator Herb Kohl and co-sponsored by Senators Lincoln, Wyden and Casey.
- AFA has begun to address workforce competency for care settings through its Excellence in Care evaluation program and training programs for family caregivers and long-term care staff via its division, Dementia Care Professionals of America (DCPA).
The Value of Dementia Training
Long-term services and support quality and accountability is particularly important to AFA and to individuals with Alzheimer’s disease and related dementias, and their loved ones, because they make up the majority of consumers who use such services. According to the Centers for Medicare and Medicaid Services ( CMS), an estimated 70 percent of nursing home residents have some degree of cognitive impairment, and studies show that at least half of all assisted living residents aged 65 and older have dementia or a related illness. Nursing home placement often results from hospital care of demented inpatients where hospital staff is often ill-equipped to mitigate functional decline during hospitalization.
AFA believes strongly that the healthcare system could improve their dementia care through pre-employment initial training as well as ongoing in-service training. AFA offers two national training programs that are specifically designed to raise the bar on dementia care in the United States:
- AFA developed Excellence in Care, www.excellenceincare.org , to partner with care settings in the establishment of a nationwide standard of excellence in care for individuals with Alzheimer’s disease or related dementias. Excellence in Care offers the opportunity for facilities to ensure that their dementia care settings meet the optimal care needs of their residents/clients. The program, created with the Avila Institute of Gerontology and other industry experts, consists of a comprehensive on-site evaluation and consultation on strategies to achieve the established standards for quality of care and to sustain performance. Key areas of review include: environment, education, staff-client interaction and programming. Care settings that successfully reach the standards established by this initiative will earn the status of Alzheimer's Foundation of America Excellence in Care Dementia Program of Distinction.
- Dementia Care Professionals of America (DCPA) is a division of AFA, www.careprofessionals.org , and offers membership, training, qualification and other benefits to individual healthcare professionals involved in dementia care such as: physicians; psychiatrists; geriatric professionals; nurses and nursing home, assisted living, and adult day program staff; physician assistants; dentists and pharmacists; home health and personal care aides; physical, recreational, and occupational therapists; nutritionists, dieticians, social workers, and case managers; and owners, directors, presidents and administrators from long-term care, home health, hospital, adult day, and counseling industries. DCPA provides practical training to healthcare professionals, sets standards of excellence through our AFA qualification program, keeps professionals abreast of emerging breakthroughs in treatment and care, and supports professionals as they support those in need.
As a practical matter, we believe key areas for improvement in dementia care training include the following:
- Individuals with dementia have intellectual and psychiatric symptoms produced by damage to the brain. It is crucial that professional care providers understand these basic elements of dementia, as well as the impact of dementia on functioning, thought and behavior.
- Dementia also causes the loss of many functions, including the skills involved in activities of daily living. Correct care during these daily activities can increase the quality of life for individuals and reduce risks to care providers during these close interactions.
- Individuals with dementia commonly experience behavioral problems, including aggression, hostility, nighttime wandering, and sexually inappropriate behavior. Effective management of these problems can improve the individual’s comfort, the safety of professional care providers and the environment of the residence.
- Older individuals typically have other health problems in addition to dementia, making them vulnerable to health emergencies, injuries, abuse, and neglect. Understanding these principles can help ensure a person's safety and reduce stress on the health care professional.
III. Investing in Technology
AFA also believes in the value of investing in long-term care technology. Simple devices can be very cost-effective and widely utilized. For example, 60 percent of individuals with Alzheimer's disease and related illnesses are likely to wander from their homes, and up to half will become seriously injured or die if they are not found within 24 hours. The average search and rescue time for a missing person with dementia is 9 hours and costs law enforcement agencies $1,500/hour. Project Lifesaver International, www.projectlifesaver.org , places personalized radio transmitters on the wrist or ankle of identified persons. These transmitters are waterproof and cannot be removed. Average search and rescue time on more than 1,850 recoveries is less than 30 minutes. Project Lifesaver is available in 915 agencies (Law enforcement, Fire, Emergency Services and more) in 45 states, the District of Columbia and Canada.
Other monitoring, assistive, or information technologies for home based care, long term facility based care and caregiver support may improve care and avoid accidents. For example, on-line caregivers may work with impaired patients who live at home alone using sophisticated monitoring and sensing devices.
Appropriate oversight and funding depends on quality assurance. State by state and regional variations requires a bottom-up strategy for quality measures based on a broad framework set at the national level. Consumer and family input is essential to assure that the “customer” has a voice in this process. CMS should expand consumer input into regulations at the national level. All state regulatory agencies supported by CMS must have direct consumer input. CMS regional offices must expand or solicit opinions from the citizens in their region.
IV. Improving Quality
The nursing home industry has changed dramatically in the 21 years since the enactment of the landmark Nursing Home Reform Act of 1987 (OBRA ’87). According to a September 23, 2007New York Times investigation, “Byzantine” structures, such as those employed by global private equity investors and large chains, have frustrated the efforts of state regulators to hold long-term care facilities accountable for the quality of care they provide.
The next Administration should support passage of the Nursing Home Transparency and Improvement Act—sponsored by Senator Herb Kohl and Senator Charles Grassley—a good-government, no-cost bill that would increase public transparency and accountability of nursing home owners and operators by requiring them to disclose the corporate entities that own nursing homes and the affiliated entities that operate, manage or control them. Even CMS has testified it does not know who owns all nursing homes in this country—despite the fact that the industry receives $75 billion a year in public Medicare and Medicaid funding. Through additional reporting requirements on nursing staffing levels, turnover and retention patterns, and the amount of Medicare dollars spent on direct care, the bill will provide American families and policymakers critical new information in evaluating the quality of services that are provided in nursing homes across the country.
The measure also calls for establishment of a national independent monitoring program to look closely at the performance of multi-state nursing home companies, allowing state and federal regulators to take timely action to effect corrections in those chains that have a pattern of poor care, and/or that abuse public funds. Additionally, the bill requires facilities of all sizes to include dementia management and abuse prevention training as part of pre-employment training, which is critical because individuals with dementia make up the majority of consumers who use such facilities.
V. The Biggest Hurdle: Cost
We must ensure that all Americans have access to long-term care financing in their time of need. Public and private financing should work together to enhance individual choice about care options and settings, improve quality, reward innovation, and demonstrate fiscal responsibility.
One of the greatest fears of aging is the loss of independence. With help, many long-term care patients can thrive at home. But , Medicare doesn't cover most long-term care expenses and Medicaid only helps after patients exhaust their financial resources. The existing assortment of public and private options to pay for long-term care is nearly impossible for most people to understand, let alone navigate. Private long-term care insurance exists, but premiums are too expensive for most families. Affordable financing options for long-term care are a necessity.
The cost of nursing homes and assisted-living facilities and lack of community-based options means that many older Americans must rely on family and friends to provide care at home. Most long-term care
(about 80%) is provided in the home by unpaid family members and friends. Family caregivers are the backbone of long-term care in the U.S, providing unpaid care at an estimated value to the U.S. economy of $350 billion in 2006.
Caregivers, particularly women and members of low-income families, are faced with tremendous stress. Families and friends who provide this unpaid care often do so at the expense of their own health and financial well being. U.S. business productivity losses related to family caregiving have been estimated as high as $33.6 billion per year. Many get caught in a difficult spiral. They are forced to take time off from work, forgo promotions, and maybe even drop out of the workforce altogether to care for elderly relatives. Consequently, they work less and earn less, which reduces the Social Security and pension benefits they receive. And women, who generally live longer than men, must stretch their meager resources much further.
We need to work on multiple solutions to help family caregivers aid the ones they love:
- Family friendly workplace polices
- Tax credits for individuals with substantial long-term care needs or for their caregivers
- Parity for home and community based care with the eligibility levels for nursing home care
- Full funding for the Lifespan Respite Care Act
- Adequate funding for the National Family Caregiver Support Program
Our nation faces a looming crisis in long-term care, which must be addressed before it spirals out of control. The crushing burden of an epidemic of chronic disease is falling squarely on the shoulders of family caregivers, who lack the resources to effectively manage it. Federal leadership is desperately needed to support investments in training, technology and quality improvement in partnership with the grassroots efforts of family caregivers and patient advocates at the state and local level.
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Alzheimer's Foundation of America 866.AFA.8484