(This article appeared previously on Kaiser Health News.)
As the baby boomers age, the increasing number of patients with Alzheimer’s disease will take a serious toll on caregivers and families, and the costs associated with that care are expected to weigh heavily on the nation’s health care system. A new study projects that the disease will be responsible for 25 percent of all Medicare spending by 2040.
Alzheimer’s is the most common form of dementia, and the number of cases is expected to balloon as people live longer: Today 5.1 million people 65 and older have it. By 2025, the number will rise to 7.1 million, a nearly 40 percent increase, the Alzheimer’s Association estimates. The projections have sounded an alarm amid a tightening federal budget and concerns that there won’t be enough nursing facilities to take care of patients. Researchers and health policy experts met in Washington, D.C. last week at a major conference looking at the impact of the disease and efforts to combat it.
Dr. Maria Carrillo, Chief Scientific Officer at the Alzheimer’s Association, which paid for the research on Medicare projections that was released last week at the conference, talked with Kaiser Health News staff writer Lisa Gillespie about what the growth of Alzheimer’s will mean for the nation. The interview has been edited for length and clarity.
Why is there such an increase in Alzheimer’s disease?
We know that it is an older disease; it affects people mainly over 65. And it has been less than 100 years that we’ve lived to 65 plus. The average life expectancy is now is 83, and that’s why the baby boomer number is so critical. They’ll be living to 90, and that puts them at more risk for Alzheimer’s.
The other piece is that we’re more educated than we were 40 years ago, more people have high school diplomas and people are living older in professional settings. They are working until 70 with the full expectation that they will continue to have a sharp brain.
Other risk factors include a sedentary lifestyle (and) watching a lot of TV, which tells us what we do early in life does impact us late in life.
— Dr. Maria Carrillo, Alzheimer's Association
Compare this to someone who stays at home. My mother-in-law, who has Alzheimer’s, stayed at home to raise her family. Her early symptoms weren’t as apparent because she wasn’t doing anything that required her to make mistakes that were glaring. In a professional setting, if you can’t multitask, it’s more apparent.
Much research is going on right now to prevent or slow down Alzheimer’s. Where does the research stand? What would you hope to see in screening for Alzheimer’s?
The federal government is making investments in research today — $350 million has been included in an appropriations bill for the fall, and if it’s approved, it will improve NIH (National Institutes of Health) research dollars for Alzheimer’s by 50 percent. We’d also like to see things like saliva and blood screening tests that could be done in our primary care physician offices. It’s the first place where a loved one would go [if they started having symptoms]. If they could have something quick and dirty, like a finger prick that says things aren’t right, we could pass the patient on to do more extensive testing.
You’ve mentioned, though, that there is no cure for Alzheimer’s. Why would someone want to be screened with that kind of outlook?
The reality is that what we have to do today is develop screening and detection simultaneously with treatments and cures. We have medications that are approved for Alzheimer’s and dementia, but the effects don’t last as long as we’d like. We’re trying to develop screening tools in conjunction with therapeutics that can slow its progression or provide more symptomatic relief than are available today.
How do you think the health system is going to adapt to a larger population with Alzheimer’s?
We’re going to need more skilled nursing and home health aides, because we won’t have enough institutions to support people. And not everyone wants to put a loved one in an institution. Even today, many home health workers aren’t trained for dementia specifically.
Unless we change the trajectory of what’s happening today or delay or stop the disease, Medicare and our society will have to think about creating more support systems as these patients age. We’re talking about assisted living and transition living, and more training of professional caregivers. There are 13 million caregivers right now, and we’re going to have to quadruple that. And two-thirds of these caregivers are women that have to slow down their careers or stop work altogether [to provide help to family members].
Respite care [which is non-medical care for a patient to allow the caregiver rest and time away from the responsibilities of looking after the person with dementia] is not covered by Medicare. It is paid for by Medicaid. But that’s only available when families [have spent down nearly all their assets] and don’t have resources to pay.
What does current research show might help slow Alzheimer’s?
There won’t be a silver bullet, but a combination of therapeutics. What research is showing will be a mix of pharmacological, anti-inflammatory and psychological drugs, layered on with exercise.
We used to think it was just diabetes Type 1 that led to Alzheimer’s but we’re seeing that it’s also diabetes Type 2. The longer you live with diabetes, the greater risk you have. There’s an 80 percent increase [in the likelihood of getting] dementia, so we need to figure out what it is about Type 1 and 2 that makes them more vulnerable to cognitive decline.
Other risk factors include a sedentary lifestyle, watching a lot of TV, which tells us what we do early in life does impact us late in life and increases our risk. So there must be public messaging. We owe it to the public to let them know.
What is the experience of caring for someone with Alzheimer’s like?
My father-in-law has vascular dementia, and my mother-in-law has Alzheimer’s — both need 24-hour care. My father-in-law has had a slow decline over five years — he’ll be stable for a year and then his health will drop, usually spurred by a physical event like a stroke. He is mainly disoriented, but remembers who we are and how to do daily tasks.
My mother-in-law has a had a continuous and quick decline in a few years: she doesn’t recognize family, she’s forgotten how to get into a car — standing, turning and sitting down, so she crawls.
You can’t leave a loved one like this with a caregiver all the time, so my husband, sibling and I take turns being there, and we pay for the care out-of-pocket, which not everyone can do. My mother-in-law has forgotten how to walk, and she needs to be carried everywhere. She doesn’t recognize us or her grandchildren, and she has to be cared for like an infant. It’s a low quality of life.
At first our family tried to remind her of things, and it just caused anxiety in her and the family. You just kind of have to go with the flow, and stay even with emotions. I think it’s hard for me to see my children not having a grandmother that can care for them, and they’re instead caring for her. It makes me more committed to this cause.
I didn’t come into this work having this experience with my family. But now when I see this, it reinforces my passion to find an answer. It turns you into a champion for those that don’t have a voice.
Kaiser Health News (KHN) is a nonprofit national health policy news service.
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