A Caregiver’s Wish List for a National Alzheimer’s Agenda

Abstract

When panels are convened to discuss the best way to deal with Alzheimer’s disease (AD), the panels often consist of representatives from government agencies, national Alzheimer’s organizations, medicine, research, and pharmaceutical companies. Although each of these stakeholder groups has much to contribute to such discussions, too often the voices of caregivers are not heard. Even the National Alzheimer’s Project Act (NAPA) Advisory Council has only one full-time 24/7 caregiver as a member. Of 26 voices heard at the NAPA meetings, only 1 can speak for what life is like for a 24/7 caregiver of a loved one having AD. This article provides 10 items that I would raise at such a meeting based upon my own personal experience and what I have learned from others in my weekly spouse caregiver support group and in my online support groups. Some items suggest funding priorities, some suggest changes in how doctors currently diagnose and treat people with AD and their caregivers, and some suggest the need for more caregiver voices to be heard by government panels and politicians who have the power to effect change.

Our federal government continues to provide a comparatively low level of federal funding through National Institutes of Health (NIH) grants for Alzheimer’s disease (AD) research. Combined spending by NIH in 2012 and 2013 for AD research is less than US$1.05 billion, yet during this same 2-year period, NIH will fund US$1.68 billion for research on eye disease and disorders of vision. ¹ Eye disease and disorders of vision are not listed among the top 10 causes of death in this country according to the most recent data from the Centers for Disease Control (CDC). However, AD is listed as the sixth leading cause of death. ² Alzheimer’s disease is also the only cause of death among the top 10 killers with no effective means of prevention, treatment, or cure. The survival rate is 0. The mortality rate is 100%, and deaths due to AD have increased 68% during the past decade. ³ And yet, research on many diseases not on the CDC list of major causes of death routinely continues to receive more NIH funding than for AD.

In a June 2013 proposal for more state funding for AD research, New York Congressman Steve Israel noted that “Alzheimer’s is the most expensive malady in the United States but federal investments in researching the disease are at an all-time low.” With current yearly costs for caring for people with AD at US$203 billion…costs projected to rise to US$1.2 trillion by 2050. Representative Steve Israel further noted that “researching the disease is not just a matter of compassion for a cure; it is a public policy imperative.” ⁴

My wife was diagnosed with AD in 2009 at the age of 63. Here is my “wish list” for a National Alzheimer’s Agenda.”

Wish List Items Requiring More Funding

The federal government must greatly increase funding for basic research into the causes of AD, and to do that NIH must change its funding priorities. Federal grants should also be given to states to disburse to local research laboratories working on neurodegenerative diseases.

We also need increased federal funding to subsidize clinical trials for potentially new AD medications. Trials should last at least 1 year and require follow-up study to be sure there are no long-term side effects. Food and Drug Administration (FDA)-approved AD medication should be required to have a label indicating its effectiveness has only been proven for some people for the period of time of the clinical trials. Current FDA-approved AD medications found “effective” for “some” participants in clinical trials lasting only 26 weeks are often prescribed for many years with no evidence to indicate that they remain effective. Labels would alert caregivers and patients that their doctors are prescribing costly medication that may no longer be effective, and such money may be better spent on other patient or caregiver needs. ⁵

There is a movement by some to “fast track” the approval process for new AD medications. However, briefer clinical trials can result in medications having unintended consequences, such as unanticipated side effects that may only present when a patient receives that medication for a longer period of time. In addition, “effectiveness” in a brief trial of a few weeks or months may not be demonstrated after 12 months or longer. Unless fast track approval is requested for a medication that may potentially stop or reverse AD declines immediately, the wiser course of action is to let clinical trials proceed for at least a year. It is neither fair nor wise to drain money from patients and caregivers for medication that may be shown to be ineffective or harmful only months after usage begins.

States must provide money to local AD organizations, assisted-living facilities, nonprofit social organizations, hospitals, and nursing homes to create more special focus on AD caregiver support groups. Such groups not only educate caregivers about how to deal effectively with loved ones with AD but just as important they can provide caregivers the emotional support they need. No one “gets it” like a fellow AD caregiver. Although each caregiver’s situation is different…if you know 1 person with AD, then you know 1 person with AD…and all caregivers are paddling in different boats…all of those boats are paddling in Lake Alzheimer’s.

States must similarly provide more money for AD day care programs, respite programs, companion services, and home health aide services. At some point, many people with AD will need to be placed in assisted living or nursing home facilities but access to less costly programs would allow some caregivers to keep their loved ones at home for a longer period of time. If not poor enough to qualify for Medicaid and not fortunate enough to have long-term health care insurance or sufficient funds to pay skyrocketing monthly placement costs, assisted living or nursing home costs can easily consume the caregiver’s entire retirement nest egg.

Wish List Items Requiring Changes in Protocols for Many Doctors

5. Doctors must pay more attention to what caregivers tell them during office visits! Too often, caregiver observations of AD symptoms in their loved ones are ignored by doctors if AD symptoms are not demonstrated on tests or observed during office visits. Frustrated caregivers too often watch their loved ones initially treated for stress, anxiety, depression, or a variety of other issues instead of being treated for the worsening AD symptoms that they routinely observe on a daily basis. We already have research supporting the effectiveness of brief caregiver questionnaires to screen for AD. Doctors should administer a screening questionnaire to any caregivers expressing concerns about a loved one. The AD8 questionnaire only takes about 2 minutes to administer. Even the most time-pressured doctor can find 2 minutes to follow-up on caregiver concerns about a loved one’s symptoms that may very well be early signs of AD. ⁶

6. Doctors must inform patients and their caregivers about support groups and helpful programs when issuing an AD diagnosis. Too many caregivers must learn by themselves about available support programs for themselves and those with AD. Doctors must do a much better job of empowering patients and caregivers with such information, and providing a simple handout would be very helpful. ⁷

7. Doctors who issue AD diagnoses should provide a brief handout explaining the stages of the degenerative progression of AD over time. Either at or shortly after diagnosis, doctors must level with their patients and caregivers about treatment options and disease progression so they can plan accordingly. Patients and caregivers must receive accurate information about their disease to allow them time to make sure certain documents are in order…will or trust, living will, health care proxy, durable power of attorney…and time to meet with an eldercare attorney and/or a financial advisor to properly prepare for their futures. ⁸

8. Doctors should be required to report every AD diagnosis to their state Department of Motor Vehicles, which in turn should mandate surrender of driver’s licenses as soon as possible…but no later than 1 year after diagnosis. Some people with AD will be able to drive safely for more than 1 year but many won’t. By definition, an AD diagnosis implies mental impairment that will, eventually, impact one’s ability to drive a vehicle safely. One year is more than enough time for someone with AD to arrange for other means of travel, if necessary. A person with AD who continues to drive after diagnosis potentially places that person, anyone else inside that person’s vehicle, people in other vehicles, and innocent bystanders in harm’s way. ⁹

Wish List Items Requiring Caregiver Voices and the Political Will to Change

9. Local, state, and national AD advisory panels must seek more input directly from 24/7 caregivers. All too often, advisory panels are limited to members of government agencies, research facilities, lobbying groups, and caregivers representing widely known AD organizations. Although such panel members definitely have much to contribute, 24/7 caregivers unaffiliated with any AD organizations also have much to contribute. Wouldn’t insights gained from daily caregiver experiences be helpful in shaping local, state, and national AD polices? Unless someone lives 24/7 with a loved one who has AD, one cannot possibly have even the remotest idea of what an AD caregiver’s life is like.

I was pleased when President Obama signed the Federal National Alzheimer’s Project Act (NAPA) into law in 2011, but the 26-member NAPA Advisory Council has only 1 member who is a 24/7 AD caregiver. ¹⁰ The NAPA must add more 24/7 caregiver voices to their Advisory Council to hear firsthand about how unavailable services affect caregivers and their loved ones and how available services are often beyond a caregiver’s ability to pay. Without hearing such caregiver voices, NAPA is not as inclusive as it should be when making recommendations for action.

10. In 1983, when fewer than 2 million Americans were having AD, President Reagan, who, ironically, was later diagnosed with and died from AD complications, signed a proclamation declaring November as National Alzheimer’s Disease Awareness month. He cited the need for more research, noting “the emotional, financial and social consequences of Alzheimer’s are so devastating that it deserves special attention.” ¹¹

Thirty years later, more than 5 million people are now suffering with AD…a number expected to reach 14 million by 2050. ¹² In his Vision Statement for the 2013 update to the NAPA goal statement, President Obama wrote, “For millions of Americans, the heartbreak of watching a loved one struggling with Alzheimer’s disease is a pain they know all too well. Alzheimer’s disease burdens an increasing number of our Nation’s elders and their families, and it is essential that we confront the challenge it poses to our public health.” ¹³

The President’s reference to our “Nation’s elders” reflects a lack of knowledge that more than 200 000 people with AD are less than the age of 60, some still in their 30s or 40s. More importantly, when will we start to “confront the challenges” posed by AD? It’s now more than 2 years since NAPA’s creation but NIH is continuing to fund AD research near the same relatively low levels and I see no legislation indicating that we are confronting those challenges.

We as a nation must have the political will to make tough choices now during these difficult economic times. The president knows this. Congress knows this. And yet, it seems that another president 30 years from now will echo Presidents Reagan and Obama to say that AD “deserves special attention” or that we must “confront the challenge.” Thirty more years is too long to wait. The time for our country to deal with the human and economic burdens of AD is now.