More than 5 million Americans now suffer from Alzheimer’s disease and related dementias in the United States, and that number could easily triple by 2050 as the population grays. If the latest projections hold true, that will mean the U.S. will spend $1.2 trillion on care for Americans with the disease — up from $203 billion today.
The numbers are especially startling given that — like most other Americans — most of those who will eventually develop the disease have done little to no planning for their future. To profile what long-term care will look like for many of these Americans, PBS NewsHour correspondent Ray Suarez introduced viewers to Mary Wyant, an artist who slowly lost her ability to paint and the ability to take care of herself due to Alzheimer’s, and her daughter Rebecca, who is now her mother’s legal guardian and primary caretaker.
After the segment aired, the NewsHour received dozens of follow-up questions about the disease from viewers. Below, Carol Steinberg, the president of the Alzheimer’s Foundation of America, answers many of them.
But first, brush up on the basics with Steinberg’s Top 10 Things You Should Know About Alzheimer’s Disease, and watch the NewsHour’s full broadcast segment here:
Viewer Question 1: My grandfather and aunt (his daughter) both passed from Alzheimer’s. I’m concerned I may get this disease. Is this hereditary and does it skip a generation or does it affect each generation? Is there a test for predisposition? And if so, who would I see for such a test?
Carol Steinberg, Alzheimer’s Foundation of America president: Having an immediate relative with Alzheimer’s disease does not necessarily mean that you will develop the disease. But it is yet another risk factor.
The general thinking about Alzheimer’s disease at this time is that there are two distinct types of the illness. The first is typically referred to as “late-onset” Alzheimer’s disease, which accounts for nearly 95 percent of all cases of the brain disorder and affects adults after age 65. Studies suggest a two- to four-fold greater risk for Alzheimer’s disease in individuals with a first-degree relative who has late-onset.
The other and rarer type is known as “young-onset” or “early-onset” Alzheimer’s disease, and affects people under 65 and even as young as the late-30s. Family history appears to play a stronger role here. This type of young-onset, familial, accounts for only about 2 to 3 percent of all cases. Current evidence does not suggest that the disease necessarily skips a generation.
Genetics is a major focus of Alzheimer’s disease research. Scientists have identified several common gene variants that may contribute to either young-onset or late-onset Alzheimer’s disease, but there are also still many unknowns related to heritability.
As for genetic testing for Alzheimer’s disease, it’s a very personal decision. Tests have about a 50 percent predictability factor. Many people without the genetic markers can develop Alzheimer’s disease, and many people with the genetic markers will not. Should you opt for this route, albeit inconclusive, your doctor can refer you to a geneticist for genetic counseling and testing. Another option is to enroll in a clinical trial related to family history and Alzheimer’s disease; visit www.clinicaltrials.gov.
Viewer Question 2: Is Alzheimer’s preventable — or is it possible to at least delay its onset? If so, how?
Steinberg: Unfortunately, at present, Alzheimer’s disease cannot be prevented, reversed or cured. The hopeful news is that one of the main goals of the federal government’s historic “National Plan to Address Alzheimer’s Disease” is to “prevent and effectively treat Alzheimer’s disease by 2025.” Achieving this objective requires substantially increased funding for Alzheimer’s disease research so that scientists can continue and expand their efforts on this front.
While people cannot control genetic predisposition for Alzheimer’s disease, individuals can take control of their overall lifestyle choices. Researchers have found that basic lifestyle changes may help reduce or eliminate multiple risk factors for Alzheimer’s disease. Risks include smoking, drinking alcohol, high blood pressure, diabetes, poor cholesterol levels, depression and stress.
In 2010, an independent panel convened by the National Institutes of Health concluded that inadequate data exists to absolutely define the impact of successful aging strategies on cognition. But it found no evidence to suggest that Americans should quit good health habits. A rule of thumb: what’s good for the heart is good for the brain. This includes maintaining a healthy diet, exercising, doing mental stimulation activities, socializing, and managing hypertension and stress. For additional tips, visit www.alzprevention.org.
Viewer Question 3: Do you have advice for those looking for a local doctor who specializes in Alzheimer’s treatment?
Steinberg: A good place to start is with your primary care physician — a family practitioner or internist. You’ll find that some primary care physicians are more knowledgeable about or focused on Alzheimer’s disease than others. For example, a primary care physician trained in geriatrics — a sub-specialty that focuses on the special needs of older adults — might be more familiar with Alzheimer’s disease since the brain disorder primarily affects people aged 65 or older.
Typically, a group of specialists are part of the evaluation process. While our regular doctor might run initial tests, ultimately, the doctor may refer to a geriatrician, neurologist, neuropsychiatrist or neuropsychologist.
To find local doctors, it would be advisable to first call your insurance carrier to find a clinician covered by your plan. Many websites can also help with a search, including www.medicare.gov, the federal government’s website for Medicare beneficiaries; and www.healthinaging.org, created by the American Geriatrics Society Foundation for Health in Aging. As well, tap local Alzheimer’s agencies, adult day programs or senior centers for referral sources — to both doctors and support services to assist with diagnosis and treatment as well as care.
Viewer Question 4: What is the importance of early diagnosis if there is no cure? Creating more years of anxiety, or what?
Steinberg: Early detection of Alzheimer’s disease has its benefits — benefits that may outweigh any potential increase in anxiety. According to one study, disclosure of a diagnosis of dementia does not prompt a “catastrophic emotional reaction” in most people, even those mildly impaired. In fact, it may provide some relief once the person has an explanation for symptoms and embarks on a treatment plan. As well, a recent study of women currently caring for loved ones with Alzheimer’s disease found that an overwhelming majority would want to be diagnosed early.
Why know? While there is no cure for the brain disorder, there are several FDA-approved drugs that may help slow the progression of symptoms — enabling individuals to remain independent and have a better quality of life for a longer period.
Moreover, early diagnosis is heavily linked to individual rights. It offers diagnosed individuals the opportunity to be actively involved in making decisions about their future — finances, long-term care, end-of-life care and other personal wishes — and getting legal and financial affairs in order before the disease strips them of their communication skills, judgment and other intellectual functions. This takes the heavy responsibility of decision-making off a family member’s shoulders.
The domino effect is that family members can benefit as well, giving both the diagnosed individual and family members an opportunity to get educated about the disease; set up care networks; access local and national resources that can ease the emotional, practical and financial toll of the disease; consider enrolling in clinical trials; and take steps to safeguard the person’s safety, such as home modifications to reduce falls and curb wandering. The sooner a person is accurately diagnosed, the sooner families can embrace available resources.
Viewer Question 5: How do you approach someone you love and ask them to take an Alzheimer’s diagnostic test? I love someone who is diabetic and at risk. He is losing capacity (I think), but I am too close to make this judgment. Is there a dialogue to get this started?
Steinberg: Starting a conversation sooner rather than later may be one of the best things you could do for a loved one with symptoms — and for yourself.
There is no doubt that broaching the subject can be uncomfortable and challenging. So much fear, denial and misconceptions continue to surround Alzheimer’s disease. These concerns often stop people who notice symptoms in themselves from talking about them; others are unable to participate in this conversation because the illness has already significantly impaired their memory and judgment. So how you approach the topic is very dependent on the person’s symptoms.
If your loved one’s rational thinking remains intact, explain that a diagnosis is critical to pinpoint the exact cause of memory loss. The knowledge that a number of potentially treatable medical conditions can mimic the symptoms of Alzheimer’s disease, such as thyroid imbalances, vitamin deficiencies, dehydration and depression, can be just the information that facilitates a doctor’s visit. Also point out the benefits of receiving a diagnosis — even if it ends up being Alzheimer’s disease.
If you can no longer rationalize with the person, try reassurance instead. Start by saying, “I noticed you had some forgetfulness in the last few weeks. I care so much about you and want to make sure that you are well. How about we go to the doctor just to get it checked out? I will be by your side the whole time.” Also consider pairing the appointment with a pleasurable activity, such as going to lunch or visiting a museum. Associating a doctor’s visit with a more pleasurable event can be helpful in reducing resistance.
Viewer Question 6: I know there are facilities for patients with Alzheimer’s, in which Medicare helps cover the costs, but what about help for those who want to care for their spouse at home until the end of life?
Steinberg: The costs of Alzheimer’s disease care are skyrocketing — in whatever setting: the average cost per dementia case was between $41,000 and $56,000 in 2010, according to a new study by the Rand Corporation. The dollars and cents become all that more relevant when they’re out of pocket — a typical scenario for families given limited government funds for in-home assistance for people with Alzheimer’s disease.
If your desire is for your loved one to remain home, it’s important to plan ahead and to be resourceful. Consider speaking with a financial planner and/or elder law attorney, and consider buying long-term care insurance before a pre-existing medical condition, such as Alzheimer’s disease, or addiction may result in denial of coverage or stricter terms.
While Medicare may cover some services, such as skilled nursing or physical therapy, it does not cover in-home custodial care — daily activities like eating, dressing, bathing and using the bathroom. For this, look to the state-run Medicaid program; eligibility criteria include low income, few assets, and the need for medical care and assistance with daily activities.
Less widely known, an increasing number of Medicaid-waiver programs, some more liberal than others, offer recipients the option to “self-direct” or “participant-direct” the funds they receive for their own care, thus allowing family members to get paid for caregiving in certain instances.
In addition, veterans who qualify for a veteran’s pension may also qualify for the U.S. Department of Veterans Affairs’ Aid and Attendance program. This offers a monetary benefit for in-home assistance with activities of daily living above the monthly pension allotment.
Beside government funding, some nonprofit organizations can help offset costs. For example, the Alzheimer’s Foundation of America provides grants to its member organizations so they can offer scholarships for adult day programs, home health care aides or other respite care to clients in need.
Viewer Question 7: What is the current research on dealing with the plaque found in brains of people with Alzheimer’s? Some studies say it is a symptom of the disease and needs to be prevented. Other studies say it is the brain’s defense mechanism against the disease. Which is it and how does that impact development of treatments?
Steinberg: Your question illustrates the complexity and uncertainty surrounding Alzheimer’s disease.
What we do know is that people with Alzheimer’s disease have two types of abnormal lesions in their brains: beta-amyloid plaques — sticky clumps of protein fragments that form around neurons; and neurofibrillary tangles — insoluble twisted fibers of the protein tau that build up inside nerve cells. Although these structures are hallmarks of the disease, scientists are unclear whether they cause it or are a byproduct of it.
The mystery of Alzheimer’s disease is so overwhelming at a time when the incidence is reaching crisis proportions. This dichotomy points to the critical need for increased funding for research and greater participation in clinical trials so scientists can obtain answers that one day lead to effective treatments and a cure.
Earlier this year, President Obama proposed the BRAIN initiative, a new research effort to revolutionize our understanding of the human mind and uncover new ways to treat, prevent and cure brain disorders like Alzheimer’s disease. This project, like others, is dependent on funding.
Viewer Question 8: I would like to know what are the main causes of Alzheimer’s disease?
Steinberg: Currently, researchers do not know the exact causes of Alzheimer’s disease. It is believed that this disease is caused by complex and intricate events in the brain over a long period of time. Changes in the brain are at work a decade or more before symptoms appear.
Advanced age is the greatest known risk factor. Although Alzheimer’s disease is not a normal part of aging, the risk of developing the disorder rises as people get older. Current research from the National Institute on Aging indicates that the prevalence of Alzheimer’s disease doubles every five years beyond age 65.
Beyond age, Alzheimer’s disease may be triggered by other factors, such as family history, genetic makeup, oxidative damage to neurons from the overproduction of toxic free radicals, serious head injuries, brain inflammation, Down syndrome and environmental factors.
Viewer Question 9: Why don’t experts or scientists talk about the personality changes that occur in patients, and how caregivers or families can best deal with aspects of changes? Why do some patients become very suspicious about money and finances to the point not of not trusting anyone?
Steinberg: Alzheimer’s disease, as you point out, extends well beyond memory problems. As it attacks brain cells, people progressively lose myriad intellectual functions, as well as experience behavioral problems, personality changes and a breakdown in bodily functions. Ultimately, it is the sixth leading cause of death in the United States.
Just like many people incorrectly believe memory loss is a fact of life in growing older, results from a survey released in 2012 by the Alzheimer’s Foundation of America revealed that many caregivers also mistakenly interpret various behaviors as a normal part of aging — rather than as symptoms of Alzheimer’s disease or another dementia. And as a result, they now believe those false impressions delayed their loved one’s diagnosis. The most common behavioral symptoms are irritability, sundowning or late-day confusion, anxiety and sleeplessness; other ones include hallucinations, paranoia, aggression and inappropriate sexual behavior.
Behavioral issues can be some of the most disturbing consequences of Alzheimer’s disease, and can cause enormous stress for caregivers. In fact, the survey, “Alzheimer’s Caregivers: Behavioral vs. Cognitive Challenges,” found that only 14 percent of caregivers feel they are managing the person’s behavioral symptoms better than cognitive symptoms.
While the treatment approach is not one size fits all, health care professionals typically suggest a multi-pronged strategy: environmental changes, such as reducing noise and clutter; behavioral modifications, such as communication techniques, sticking to routines, making sure a person’s needs are met, such as using the bathroom and eating; participating in support groups and engaging the person in activities like music and artwork; and medications, either specifically approved for Alzheimer’s disease or, albeit controversial, those to treat specific behaviors, such as anti-depressants, anti-anxiety medications, antipsychotics and mood stabilizers. Above all else, it’s vital to take appropriate actions that prevent self-harm or harm to others.
To deal with suspicion about finances, it helps to understand what might be prompting this behavior. Individuals with Alzheimer’s disease often have trouble with complex mental tasks, so suspiciousness about money may stem from an inability to make sense of why they can’t understand their finances. Additionally, for many adults, having control over one’s finances symbolizes independence. As symptoms chip away at independence, people with Alzheimer’s disease may “act out” their feelings of loss. Therefore, it would help to find ways to encourage your loved one to make choices about safer things, such as what foods to eat, what clothing to wear or what activities to participate in.
A caregiver’s attitude and response also go a long way. Try not to take behaviors personally. Since individuals with Alzheimer’s disease are often highly attuned to a caregiver’s tone of voice, facial expressions and body language, they may mirror back a caregiver’s frustration and anxiety in the form of aggressive behaviors. As difficult as it may be, caregivers should attempt to remain calm and supportive. In order to maintain this calm, caregivers should attempt as much as possible to invest in their own self-care.
Viewer Question 10: Are there tests you can take in the privacy of your home that let you know if you should seek further evaluation by a physician?
Steinberg: While an increasing number of self-administered memory tests are being marketed to consumers, these are not diagnostic tools and should not be used for self-diagnosis or treatment.
Individuals who are concerned about their memory or are noticing warning signs should take this up with a health care professional. When you are potentially facing a chronic disease like Alzheimer’s, the value of a one-on-one interaction with a qualified health care professional should not be minimized.
Memory problems can result from multiple causes, some of which can be readily treated and others that might result from causes that are not currently reversible, such as Alzheimer’s disease. A clinician will perform a full evaluation, which may include a comprehensive medical history, cognitive screen, blood/urine test, and brain scan to determine probable Alzheimer’s disease.
Viewer Question 11: Does Aricept work or is it just a placebo?
Steinberg: Aricept is not a placebo. It is the brand name for donepezil hydrochloride, one of four medications approved by the U.S. Food and Drug Administration to treat the symptoms of Alzheimer’s disease. Aricept belongs to a group of drugs called cholinesterase inhibitors, which delay the breakdown of acetylcholine, a chemical messenger, in the brain. It has been approved for individuals in all stages of Alzheimer’s disease, from mild to severe.
This medication can be used alone or in combination with other drugs, and may help slow the progression of symptoms. Response to the FDA-approved medications for Alzheimer’s disease can vary from individual to individual. But as a general rule, the earlier that treatment begins, the more likely the medication will be effective.
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