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Maine facilities lack space for those with dementia

The elderly man was brought to the emergency room late at night, agitated, confused and angry. He swore loudly at his distressed wife and other family members. He grabbed and hit at the nurses, his old hands still strong and capable of inflicting pain.

His aggressive behavior had been getting worse over recent days and weeks, his wife said. Doctors had ruled out mental illness, stroke and other treatable causes, leaving a diagnosis of age-related dementia. Family members had been trying to arrange for a home care agency to come and help out. But the man’s behavior had changed too quickly, too dramatically. Now he was a danger to himself and a threat to his family.

“They bring them to the ER. Where else do you go?” asked Dr. Joseph Babbitt, an emergency room physician at Blue Hill Memorial Hospital. Babbitt has seen too many of these cases recently – families in despair, anger, frustration, handing over their unmanageable elderly relatives to the professional staff at the nearest hospital.

And, too often, that’s where they stay. Because finding a nursing home that has the appropriate facilities, staff and space to care for someone with dementia is close to impossible in Maine.

It’s not just family members who reluctantly throw in the towel, Babbitt said. Even nursing homes and assisted living facilities may find themselves unable to cope with the aggression that can be associated with Alzheimer’s disease and other forms of dementia. When a resident’s behavior tests the limits of the staff’s patience, when adjusting medications doesn’t help, when the person becomes a threat to other residents, too often there’s nowhere to turn except the emergency room at the nearest hospital.

Babbitt quoted the poet Robert Frost: “‘Home is the place where when you have to go there, they have to take you in.’ Now, that’s the emergency room.”

Rick Erb, executive director of the Maine Health Care Association, which represents nursing homes in Maine, confirmed in a recent interview that the shortage of places for Mainers with difficult behavior has been a serious problem for several years and is likely to get worse as the population ages. Only three Maine nursing homes offer specialized long-term psychiatric units, he said, with higher levels of trained staff to handle aggressive patients and locked units to prevent residents from wandering. None of the three is north of Waterville or west of Gorham.

Erb said it’s up to the state to fund more of these high-level programs for Mainers with dementia.

“But right now, there is no movement toward creating more special units to deal with these psychological issues,” he said.

According to Diana Scully, director of the Office of Elder Services at the Maine Department of Health and Human Services, the state is well aware of the problem.

“There are long waiting lists” for admission to the three nursing homes with specialized psychiatric units, she said in a recent interview. “It’s hard for the existing facilities to address the need.”

But looking ahead, she said, state officials have yet to tackle the problem of ensuring that appropriate – and expensive – nursing home care is available for Maine baby boomers who develop difficult behavior related to dementia. Instead, the current focus is on increasing space for aging individuals in less-restrictive settings such as assisted living programs and boarding homes, as well as developing community-based support for families caring for their elderly relatives at home.

Scully acknowledged that it is not enough. “There will be more Alzheimer’s and other age-related dementias. We know we are going to need more options as people age,” she said.

Until those options are developed, waiting lists will continue to grow and hospitals will bear the burden.

One Maine hospital is doing something different. At Maine Medical Center in Portland there is a special geriatric psychiatric unit known as P-6.

The staff on P-6 specializes in untangling the complex factors that can turn a beloved family member into an unmanageable bully. Environmental issues such as bright lights or loud noises can be part of the equation, as can diet, constipation, frustration, boredom, and the interactions of certain medications. Age-related problems such as Alzheimer’s disease and other forms of dementia are part of the picture, along with clinical diagnoses of depression, psychosis and other forms of mental illness.

According to Dr. John Campbell, medical director of inpatient services at the hospital, the 21-bed unit is always full, although the average length of stay is just 11.5 days.

“There’s been a wait list for five years,” he said – ever since the unit opened in August 2003.

Campbell said every member of the P-6 staff goes through special training, ensuring that patients are treated with consistency, compassion and professionalism. In addition to recommending specific changes in an elderly patient’s environment or in the approach used by family and professional caregivers, Campbell said medications are often adjusted to improve a patient’s interactions with caregivers and others.

Psychoactive medication, when it’s needed, should never be used to sedate patients, Campbell said, but instead “to help the patient tolerate frustration, to feel pleasant, to be alert, to be able to interact with others and sleep well.”

Patients come to P-6 from all over the state, typically waiting 10 to 20 weeks to be admitted. They come from nursing homes and other institutional settings as well as from their homes.

“We expect facilities that refer us their patients to accept them back” when they’re stable, Campbell said.

The P-6 program is unique in Maine. Babbitt at the Blue Hill hospital said the availability of more such specialized programs would ease the burden on small hospitals and nursing homes and provide better care to patients and their families.

At Eastern Maine Medical Center in Bangor, Vice President and Chief Nursing Officer Lorraine Rodgerson said small hospitals are not alone in grappling with the challenge of placing difficult patients. Only recently, she said, EMMC found a spot at an out-of-state nursing home for a patient with dementia who had been at the hospital for more than 200 days.

While EMMC has no plans to develop a geriatric psychiatric program similar to P-6 at Maine Medical Center, Rodgerson said the hospital has decided to set up a six-bed locked unit for medical patients who also have dementia-related behavior. Nurses in the unit will be trained to manage the challenging behavior of these patients, she said, although the focus will be on treating their medical needs, not on stabilizing their psychological conditions.

mhaskell@bangordailynews.net

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Correction: 08/28/2008

A story on Page A1 of the Aug. 19 paper about the difficulty of finding nursing home placement for elderly individuals with dementia incorrectly stated that a new medical unit for patients with aggressive behavior, currently in the planning phase at Eastern Maine Medical Center in Bangor, would be a locked unit. The new six-bed unit will not be locked, hospital officials said this week.


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