In 2009, the Minnesota Legislature directed the Minnesota Board on Aging to establish the Alzheimer’s Disease Working Group. This group was directed to study the status of Alzheimer’s disease in Minnesota and to make recommendations to the Legislature for needed policy and program changes to prepare the state for the future impact of this specific disease and other forms of dementia. The report of the working group was released on January 15, 2011, for presentation to the governor and the 2011 Minnesota Legislature.
The report is titled: Preparing Minnesota for Alzheimer’s 2020: The Budgetary, Social and Personal Impact. The full report is available at www.alzworkinggroup.pbworks.com. What follows is an attempt to summarize the findings of the report, and to suggest its implications for attorneys.
The Facts of Alzheimer's
The report starts with some cold, hard facts. In 2011, the baby boom generation begins turning age 65. The report states that “for the next 40 years the aging of Minnesota’s population will dominate the demographic landscape.” Minnesota has the second highest life expectancy in the United States, behind only Hawaii, with life expectancy at birth standing at 80.5 years.
As the population ages, because of the age-related nature of the disease, the incidence of Alzheimer’s disease and related dementias also increases. Some studies indicate that the odds of acquiring Alzheimer’s disease are 50 percent by age 85. Each year thereafter, the odds increase by an additional 5 percent.
Over the next 40 years, the number of people with Alzheimer’s disease and other forms of dementias is expected to double for people ages 75 to 84 and triple for people over age 85. A separate report delivered to the Legislature in 2005, titled Financing Long-Term Care for Minnesota’s Baby Boomers, provides some statistics that put this in perspective. It is projected that in 2010 there would be approximately 125,000 persons age 85 or older. In 2020, the number will be approximately 210,000. By 2050, the number climbs to 300,000. The latest 2011 report projects 324,000 persons over age 85 by 2050. It concludes with the sobering thought that by 2050, Minnesota will have over 200,000 persons with Alzheimer’s disease.
Alzheimer’s disease is now the fifth-leading cause of death for persons over age 65. If we look at primary causes of death for the period 2000 to 2006, stroke as a cause of death decreased by 18.2 percent; prostate cancer by 8.7 percent; breast cancer by 2.8 percent; heart disease by 11.1 percent; and HIV by 18.3 percent. During the same period, Alzheimer’s as a cause of death increased by 46.1 percent. It turns out that modern medicine is able to cure more deadly illnesses. As a result, people live longer lives, and this longer life span in turn translates into a higher number of deaths from Alzheimer’s and related dementias.
Aside from the human toll this entails, why should we be concerned about these numbers? As the report notes, an estimated 10 million individuals in the United States provide unpaid care to persons with all forms of dementia. The majority of these caregivers are females between the ages of 45 and 65. In Minnesota, it is estimated that 200,000 family members serve as caregivers. These family caregivers are currently saving the state of Minnesota an estimated $2.6 billion per year.
However, the number of family caregivers is declining. According to the 2005 report, families provided 97 percent of care in 1988, 95 percent in 1995, and 91 percent in 2001. This decline can be traced to four primary factors: more women in the workforce; fewer women ages 45 to 65 as ration of the numbers over 65; the “baby bust” which followed the “baby boom;” and, an overall aging population. Where we were once looking at a 45-year-old caring for a 70-year-old, we are now looking at a 70-year-old trying to care for a 90-year-old.
Given the potential costs, both personal and governmental, solutions are much needed. The working group proposes a number of steps that could be taken to better prepare Minnesotans for the onslaught of dementia patients. Each is summarized below. In this discussion, for purposes of simplicity, the term “Alzheimer’s” will be used to denote all forms of dementia or cognitive impairment.
Identify Alzheimer's Early:
The report concludes that it is critical that Minnesotans with “mild cognitive impairment” be identified as early as possible. Currently, few patients with “cognitive impairment” are identified at the early stage.
There are several reasons for this fact. Many simply do not want to know, or admit, this reality. Many fear the repercussions of this diagnosis such as loss of driving privileges. Few understand the significant benefits of early intervention. However, the biggest barrier has been that physicians are not adequately trained or reimbursed for dementia care and diagnosis.
A Wisconsin study found that early diagnosis can save approximately $10,000 per patient even when the state paid all of the program costs. Other cost-saving studies are being conducted by the Minneapolis Veterans Medical Center and by Mayo Clinic.
As a part of the Patient Protection and Affordable Care Act of 2010, an annual wellness visit is now a benefit covered by Medicare. Cognitive screening is a mandated part of this “wellness” visit. It is hoped that this will result in early identification. However, the hoped for early identification faces two barriers. First, as will be discussed in detail later, is the lack of training for medical professionals regarding identification of dementias.
However, more critical may be patient resistance. Some of my elderly clients, when informed of this new “benefit,” indicate that they will avoid any “wellness visit” because they do not want anyone telling them whether or not they have cognitive deficiencies. People do not want to know because they fear the repercussions of having this information in their medical files.
Use “Health Care Home” for Alzheimer's Care:
Alzheimer’s disease affects both overall health and cognition. The report cites growing evidence that effective management of all chronic conditions requires a commitment to a team approach to care. Research has shown that this can result in better outcomes. The report states:
For example, two of the most disabling conditions—Alzheimer’s disease and falls—are often not managed well, and result in high levels of health care utilization and nursing home placement. Under the health care home model, the providers would use the team members to more successfully manage the patient’s care, resulting in lower medical and long-term care costs and fewer hospital readmission rates.
The historic barrier to this team approach has been that Medicare would not reimburse the extra costs involved. However, starting January 2011, Medicare may pay for “risk adjusted care coordination fees.” Elder law attorneys should be aware of this new Medicare benefit, a part of the Patient Protection and Affordable Care Act. If that act is found to be unconstitutional, or is not fully funded, there will be no funding for this model of care.
Achieve Quality and Competence in Dementia Care:
There are currently few, if any, generally recognized and accepted quality standards or performance measures for physicians, nurses, and other health care professionals who provide care to dementia patients and their families. Similarly, long-term care facilities and their staffs, even though licensed or certified, have no specific standards for dementia care.
Beyond these problems, family caregivers are not receiving the “right kind of help at the right time” according to the report. The state must do a better job of providing easy access to information about options and services across all stages of this disease.
Prepare Our Communities and the Public:
The Minnesota Board on Aging already has an initiative to create “Communities for a Lifetime.” This initiative needs to be expanded with dementia in mind when it comes to designing physical infrastructures, social and volunteer opportunities, and service infrastructure. What is lacking is a common definition of the features of a community which is prepared for Alzheimer’s.
In addition, it is vital that public safety officers and respite caregivers receive stronger training. I personally watched in disbelief as a sheriff’s deputy, accompanying an ambulance called by the nursing home to transfer my late-stage Alzheimer’s father-in-law to the hospital, attempted to question him, rather than his caregivers, about his situation. (In the process the deputy leaned close enough for my father-in-law to attempt to grab his service weapon.) This particular deputy had no training regarding what to expect from a person residing in the memory care unit of a nursing home or of the potential dangers he might face in dealing with a “harmless” old man.
Train Medical Providers in Dementia Care:
The report notes that the curriculum used to train physicians, nurses, and other allied health professionals in Minnesota does not adequately address Alzheimer’s disease and other dementias. For example, the University of Minnesota Medical School, in its four-year curriculum for future physicians provides two hours of teaching on dementia. Elder law attorneys should be aware of this fact as we rely upon physicians to assess the mental capacity of our clients or proposed wards.
One can appropriately wonder how doctors and nurses who are now mandated by Medicare to conduct tests for cognitive impairment will perform given so little teaching on the subject. Will the screening be adequate to truly assess which patients have “mild cognitive impairment”? If it is critical that we identify patients with mild cognitive impairment, we must have training, standardized tests, and a willingness to make the diagnosis where appropriate.
Pursue Cost-Saving Policies:
The report notes that the total annual cost to care for those with Alzheimer’s disease could reach $1 trillion by 2050, nationally, and $20 billion at the state level. Costs of this magnitude are not sustainable.
The suggested solutions include cost savings realized as a result of early identification. A caregiver counseling model developed by New York University has proven to increase the duration of family caregiving and delay nursing home placement by 18 months on average. (At $10,000 per month this would represent a savings of $180,000.)
What this underscores is a general approach that seeks to transfer more of the caregiving burden to families. As stated earlier, however, as the population ages, this strategy may prove unworkable. Is it realistic to expect a 75-year-old woman to care for her 95-year-old mother? How do we implement this policy if individuals are going to need to extend their working careers to age 75? In addition, the pool of eligible caregivers may simply be too small to provide family care.
Intensify Research and Surveillance:
The report cites a general lack of adequate information regarding the prevalence of Alzheimer’s and other dementias. This stems, in part, from the failure of physicians to adequately recognize cognitive impairment, but also from individual’s unwillingness to admit, or recognize, cognitive impairment as an issue. It is believed that studies yielding good data on the prevalence of dementia will lead to a better idea of the conversion rate from “mild cognitive impairment” to Alzheimer’s and other dementias.
Implications for Attorneys:
What does all of this mean for attorneys in general and for elder law attorneys in particular? In my opinion, there will be a fundamental change in the practice of elder law from a focus on Medicaid planning and eligibility standards to the protection of the individual rights of our clients. Attorneys who have never dealt with elder law cases will be needed for their experience. I see a number of areas where these battles will be fought.
Older Americans Act:
The Older Americans Act was originally enacted in 1965. It is currently up for re-authorization.
The preamble to the Older Americans Act states, in part, that the elderly are entitled to “the best possible physical and mental health which science can make available….” As ethicist Daniel Callahan has observed, “The health that science can conceivably make available is unlimited in scope, as is the possibility of spending money in its pursuit.” Callahan, Daniel, Setting Limits; Medical Goals in an Aging Society, Simon & Schuster, Inc., 1987.
Does the Older Americans Act provide the basis for a private cause of action? If a client has been diagnosed with “mild cognitive impairment” and is then denied aggressive treatment for his cancer, is he entitled to the best possible medical care science can provide? Should a drug costing $100,000 be administered to a late-stage prostate cancer patient if it will extend his life an average of four months?
Like it or not, our system already engages in the rationing of health care. In fact, the report suggests that one of the benefits to early identification of mild cognitive impairment would be the cost savings realized by less aggressive treatment of other underlying health conditions.
Age Discrimination Laws:
Age discrimination laws were passed in 1967 and again in 1975. These prohibit discrimination on the basis of age in hiring and firing decisions and the denial of benefits to older employees. As our clients are forced to extend their working careers, we are likely to see far more incidents of age discrimination.
Americans with Disabilities Act (ADA):
An underlying assumption of the efforts to save social security, and a consequence of the baby bust coupled with the recent recession, is an expectation that older workers will stay in the workforce. This will inevitably lead to the need for reasonable accommodations in the workplace. What do we do with workers who cannot continue jobs requiring strength and balance? How do we accommodate those with arthritis or hearing loss? What about those with mild cognitive impairment? The ADA clearly includes disabilities acquired through the normal process of aging.
14th Amendment Guarantee of Equal Protection and Due Process of Law:
We as lawyers are familiar with these constitutional protections when applied to race or sex. However, the same protections apply when it comes to age. For example, can a state impose driving restrictions on persons of a given age, whether teenagers or older adults?
The Equal Protection Clause mandates that states treat similarly situated people in a similar way. Is age by itself a legitimate category for discrimination? Is age coupled with “mild cognitive impairment” a legitimate category?
The Due Process Clause limits a state’s ability to interfere with an individual’s rights. Does one have a right to the best health care that science can deliver? If so, does the rationing of care based upon age or cognitive impairment interfere with that right?
These are the types of questions that need to be brought to the table as we move forward to prepare Minnesota for the impact of Alzheimer’s disease. As attorneys, we need to be in the forefront to protect individual rights, even as we recognize that financial resources are not unlimited.
I encourage each of you to read the report. I suspect that you will identify other areas in which attorneys can contribute their knowledge and expertise to the ongoing dialogue. Who else will speak for those who cannot speak for themselves?