Alzheimer’s patients need special care, but providers aren’t ready to give it

Originally published on Healthcare Dive.

Diagnoses of Alzheimer’s disease have been increasing and are expected to skyrocket, but the health system has been slow to respond. Death rates are going up and there are still no prevention methods or long-term treatments.

The neurological disease is the leading cause of dementia and is one of the most feared conditions. It also leads to twice as many hospital stays and has an overall high cost of treatment.

“I think America, in general, is waking up to the fact that we haven’t done enough,” Rob Egge, chief public policy officer at the Alzheimer’s Association, told Healthcare Dive.

People are living longer and there is better recognition of the disease. Now, 1 in 10 Americans 65 and older has Alzheimer’s disease. Diagnoses will increase as more Baby Boomers reach their elderly years. Alzheimer’s is now the sixth leading cause of death in the U.S. and kills more than breast cancer and prostate cancer combined.

Alzheimer’s disease diagnoses and deaths have increased over the past 20 years —  and those numbers are expected to skyrocket over the next 30 years.

The Centers for Disease Control and Prevention recently released a study showing death rates from Alzheimer’s increased 55% from 1999 to 2014. About 5.5 million Americans are living with Alzheimer’s and that’s expected to reach 16 million by 2050.

It’s not just the elderly. About 200,000 Americans under 65 have younger-onset Alzheimer’s. “That alone would be a major health problem,” Egge said.

There doesn’t appear to be much immediate help either. While fatality rates have decreased for other diseases thanks to medical breakthroughs and treatments, there is still no prevention, cure or even a way to slow Alzheimer’s. Healthcare can only offer Alzheimer’s and dementia patients short-term symptom relief. Egge said that might help for six months, but much more is needed to improve patients’ lives.

Some health systems are taking steps toward better preparation, however. Experts recommend using staff training and interdisciplinary physician teams as well as simpler measures like adjusting patient visiting hours.

Alzheimer’s and healthcare costs

Healthcare costs skyrocket when someone has dementia. More than 85% of people with Alzheimer’s have one or more other chronic conditions, which increases healthcare costs. People with Alzheimer’s often can’t manage their co-morbidities, which leads to more health problems, hospitalizations and costs.

Alzheimer’s is expected to cost $259 billion in 2017 with $175 billion directly from Medicare and Medicaid. That’s expected to reach $1.1 trillion by 2050. Twenty-four states will see Medicaid spending for people with Alzheimer’s disease increase at least 40% before inflation by 2025, according to the Alzheimer’s Association.

Nearly one dollar of every five Medicare dollars is spent on dementia care. Within 20 years, that’s expected to rise to one in three.

Hospitalizing Alzheimer’s patients

People with Alzheimer’s and other dementias are more likely to have co-morbidities and staff may not even know about other health issues because of a patient’s communication limitations.

Older people with Alzheimer’s have twice as many hospital stays per year as other older Americans. They also have four times longer hospital stays and nearly three times more emergency department visits.

Caring for someone with Alzheimer’s is complicated and can take more nurse and doctor resources, which can put a strain on staff. Hospitalization can often raise anxiety and confuse people with Alzheimer’s. They’re in a different environment and might not know what’s happening. That anxiety is increased and is often coupled with pain. Often they’re hospitalized for issues not related to the disease, such as heart disease or a hip fracture.

“People with Alzheimer’s really need a lot of care,” Dr. Kostas Lyketsos, professor of psychiatry and behavioral sciences at Johns Hopkins Medicine, told Healthcare Dive.

The Alzheimer’s Association suggests avoiding unnecessary hospitalizations and says doctors should perform procedures, tests and treatments in an outpatient client whenever possible.

How hospitals are facing the crisis

Demands will increase on doctors, hospitals, payers, Medicare and Medicaid as the number of people with Alzheimer’s increases.

Hospitals and health systems do have options for improving their ability to care for people with Alzheimer’s.

Lyketsos said an important first step is to make sure hospitals are evaluating patients with the disease. Johns Hopkins started the Memory and Alzheimer’s Treatment Center, which is a partnership between the departments of psychiatry, neurology and geriatric medicine, and sees close to 1,000 new patients annually. The center performs a patient assessment, diagnosis and comprehensive treatment that includes counseling, education and guidance for family caregivers.

The center developed a program called Maximizing Independence (MIND) at Home, which is a home-based coordination program for people with Alzheimer’s and other dementias. The program lets people stay in their homes, while receiving care through care coordination with community-based agencies, medical and mental healthcare providers and community resources.

The interdisciplinary team uses six basic care strategies: resource referrals, attention to environmental safety, dementia care education, behavior management skills training, informal counseling and problem-solving.

The program’s main tenets are to assist family caregivers and allow people to live safely and with dignity in the community.

Johns Hopkins is in the research phase of the program and is testing whether MIND at Home is an “effective and cost-efficient approval to providing community-based dementia care to a diverse population.”

So far, program leaders have found that MIND at Home reduces a caregiver’s burden and that Alzheimer’s patients need a whole package of services to meet their myriad needs, including making sure they’re complying with medications and setting up a proper home environment for the Alzheimer’s patients.

Lyketsos said the program can delay Alzheimer’s patients from being forced out of their home and into a nursing home. Lyketsos said Johns Hopkins hopes to expand the program to a larger audience after the project’s research phase.

What hospitals can do better

Egge said the most important thing hospitals and health systems can do to tackle the influx of Alzheimer’s patients is to track the patient’s cognitive impairments from admissions to post-discharge. Hospital staff should be aware of a patient’s Alzheimer’s and deliver care accordingly.

Lyketsos said hospitals need to improve Alzheimer’s detection. Treating someone with Alzheimer’s in the hospital and post-discharge is more complicated than other patients.

Only 30-40% of Alzheimer’s patients are recognized by hospitals. So, knowing at the time of admission of a person’s Alzheimer’s diagnosis is key to the rest of the patient’s hospital stay and post-discharge.

Another issue is that doctors and nurses might not recognize symptoms of younger people with early onset Alzheimer’s. “That, too often, is a fumble,” said Egge.

In addition to better detection, hospitals need to plan carefully for a patient’s post-discharge care to reduce rehospitalizations. Transitioning a patient back to the home with caregiver support can help keep an Alzheimer’s patient from returning to the hospital.

Beyond care, Egge said hospitals should create policies that help Alzheimer’s patients. For instance, don’t enforce visiting hours strictly for caregivers. Sundowning is a time of confusion and restlessness for patients. Having a caregiver there during those times can calm the patient, but strictly enforcing visiting hours may limit when a caregiver is with the patient.

Lyketsos said the CMS also needs to do a better job reimbursing doctors who are caring for Medicare patients. Paying doctors for half-hour visits for older people, especially those with complicated conditions like Alzheimer’s, is often not enough.

CMS recently took a positive step by implementing a Medicare billing code G0505 that is for cognitive assessment and care planning for patients with cognitive impairment. The services can include cognition-focused evaluation, functional assessment, review of high-risk medications, evaluating neuropsychiatric and behavioral symptoms, safety evaluations and creating a care plan.

Egge said G0505 will lead to “more holistic reimbursements for care planning services.” He said he hopes the CMS will apply the code broadly to include other offerings, such as Medicare Advantage.

Looking ahead, Egge said the explosion of Alzheimer’s patients over the next 30 years is going to cause serious issues in healthcare. “It’s going to be tremendously profound and difficult for the healthcare system,” said Egge.

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