Awareness of Parkinson’s disease grows as nation’s population ages

These patients need home care services

Most Americans probably gave Parkinson’s disease little thought until popular actor Michael J. Fox announced late last year that he had struggled with the disease for more than seven years. Fox’s announcement was even more striking because of his relative youth. The actor is in his 30s, and Parkinson’s disease typically strikes the geriatric population. It’s rare for people under 40 to become afflicted. And while Parkinson’s disease has not been a common ailment among home care patients, some experts predict agencies will see increasing numbers of these patients.

In the 21st century, the population of people in their 80s and 90s will grow; therefore, health care providers will see more people with Parkinson’s disease, says Rosemary Regan, RN, Parkinson’s coordinator for the American Parkinson Disease Association (APDA) Referral and Information Center at Staten Island (NY) University Hospital.

The federal government predicts the number of Americans 65 or older will double to 69.4 million by 2030, and the number who are 85 or older will grow from 4 million to 8.4 million.

Parkinson’s patients are characterized by resting tremors, physical rigidity, a shuffling gait, and slow movement, says Bobbie Hurka, BSN, RN, CNRN, clinical coordinator for the Parkinson’s Disease and Movement Disorder Center at Crozer-Chester Medical Center in Upland, PA. With more than 400 beds, the medical center is part of the Crozer-Keystone Health System in Springfield, PA.

While the disease’s symptoms may lessen with medication, patients still worsen over time, Hurka adds. (See story on inservice, p. 19.) "Usually, home care gets involved because patients end up in a hospital after a fall or pneumonia," Hurka says, and they need help once they return home after treatment.

"Parkinson’s patients prefer home care, so they can have the privacy of their own homes," Regan notes.

The disease’s incidence rate has not changed so far. However, people are being diagnosed at earlier stages. This trend toward earlier diagnosis could affect home care and other health care providers, says Cynthia Holmes, PhD, program coordinator for the APDA Information and Referral Center at the University of Arizona in Tucson.

The problem is that Medicare and many managed care organizations do not provide reimbursement for the home care services these patients badly need, Holmes says. "Caring for someone with Parkinson’s disease can be very trying, and it’s important for caregivers to get a break now and then."

Besides providing aide services, home care agencies could provide these patients with nursing care, social services, physical therapy and speech therapy.

"Reimbursement is a problem," says Diane Gibson, RN, MMgtHCA, director of client services for HomeNurse in Wayne, PA. "If patients have an acute exacerbation of some kind of health problem associated with Parkinson’s disease, sometimes we can get reimbursement — but for Parkinson’s disease itself, there’s limited reimbursement." HomeNurse is a freestanding, private agency that serves several counties in the Philadelphia suburbs. The agency has a private-duty division, and physicians sometimes refer Parkinson’s disease patients to private-duty care.

Typically, managed care companies reimburse home care staff for one assessment visit. If the nurse finds potential safety dangers or other problems, the insurer’s case manager might approve a visit by a physical therapist, Gibson adds.

Medicare considers Parkinson’s disease a chronic condition that requires custodial care, so it pays only for acute conditions these patients have, Gibson says. For example, Parkinson’s patients are more susceptible to pneumonia and injuries from falling. Also, they can contract urinary tract infections that could lead, if untreated, to urosepsis, a life-threatening blood and total body infection.

Clinton proposes change

However, there may be a major change in the reimbursement problem if President Clinton’s proposal to fund a National Family Caregivers’ Support Program is passed, Regan says. Clinton announced in January that he would ask Congress for $625 million in grants over the next five years to help caregivers receive respite care, home care services, and information and referral. Parkinson’s disease patients certainly could be beneficiaries of such grants. Clinton’s plan also calls for a $1,000 per household tax credit for home health care.

Meantime, Regan suggests home care agencies make safety their chief issue when they’re referred a Parkinson’s patient. "Most of the time, you can get payers to cover it if there’s a safety issue in volved." For example, it’s very important that these patients’ homes are checked for furniture, rugs, stairs, and other obstacles that could cause falls because Parkinson’s disease patients typically have a shuffling gait and experience dizziness when they stand up suddenly. (See fall prevention guide, p. 22.) Also, Parkinson’s patients and caregivers need to learn how to prevent choking while eating, because swallowing can be slow and problematic for these patients. (See story on food safety, p. 21.)