As South Florida enters the heart of storm season, a new statewide report has found Alzheimer's[1] caregivers are ill-prepared in the event of a natural disaster.
The main concern: Alzheimer's patients are among the most vulnerable if a storm hits. They can become extremely agitated if their routines are disrupted (if they need to evacuate, for example) and are also at risk for wandering.
The Purple Ribbon Task Force, created by state law last year to make recommendations on how to best deal with the disease's enormous impact on Florida, said in its final report released this month that disaster preparation is "critical" for Alzheimer's patients and coordinators and called for new emergency policies targeting their needs.
"When disaster hits those communities, it's going to be a disaster," said Mary Barnes, president and CEO of Alzheimer's Community Care, a West Palm Beach[2] -based social service agency. Barnes is one of 18 members on the task force.
The majority of the 84,000 Broward and Palm Beach county Alzheimer's patients are being cared for at home, many living in retirement complexes but isolated from neighbors because of the debilitating neurological disorder. So they'd have no safety net if they or their caregivers haven't made advance evacuation plans, or at least registered with social service or public safety agencies that can check in with them after a storm passes.
Almost half of 840 Alzheimer's family caregivers surveyed statewide by Florida Department of Elder Affairs for the report said they had no emergency plan — and only 7 percent had registered with "special needs" shelters, designed to house evacuees with complicated medical conditions.
Emergency management was one of four key areas explored by the task force, which also looked at research, caregiver and support resources, and law enforcement training. Families dealing with the disease agreed it was an important topic, with 47 percent of those polled for the report saying it was a "critical" issue — ranking it ahead of transportation.
Yet that perception hasn't equaled action. In Palm Beach County[3] , where there are almost 46,000 residents with Alzheimer's, between 600 and 700 people have registered for the county's two special needs shelters, county officials.
And Broward, with about 38,000 Alzheimer's patients, have 959 people signed up for its five special needs shelters.
Another 2,485 put their names on the county's "vulnerable population" registry, indicating they plan to hunker down at home but want police or social service workers to check on them after the winds die down. It's not known how many of those registered have Alzheimer's.
But Bill Bradley, emergency management coordinator for Broward County[4] 's Human Services Department, said comparing South Florida Alzheimer's population to the registration numbers was "pretty frightening."
"And we do outreach and emergency management presentations, trying to make sure the community is aware these services exist," he said.
Rep. Matt Hudson, R-Naples, one of two legislators behind the bill that created the task force, was so startled by the report's disaster preparation findings that he asked his staff to check the emergency planning and shelter location information on every Florida county website. He figured that is where out-of-state adult children might go for help for their aging parents.
"It was different for every county," Hudson said. "Some counties were very good, others didn't address hurricane planning at all. Some didn't have current information up."
He plans to introduce an Alzheimer's bill this next legislative session that would include emergency management measures, perhaps requiring minimum online information standards.
There are 450,000 Floridians with Alzheimer's, a fatal disorder with no cure, with the numbers expected to swell to almost 600,000 by 2025, according to the Alzheimer's Association[5] .
County offices of the Florida Department of Health handle the special needs shelters throughout the state; places staffed by medical professionals and where those with serious medical conditions or who need life-supporting equipment like oxygen can go during the storm. Alzheimer's patients and their caregivers are eligible for these shelters although some, if their condition is not too advanced, can go to the more numerous community shelters run by the Red Cross[6] .
State health officials agreed that the ability to handle seriously ill evacuees, including Alzheimer's patients, varies from county to county. But beginning in 2011, the state began creating mobile caches of medical equipment that could be quickly moved into hurricane zones, allowing more medically frail people to get care even at community shelters.
Palm Beach County[7] also has developed one of the most comprehensive sheltering and emergency management systems for Alzheimer's in the state. One of its two special needs shelters is designated for dementia patients, with staff members from the Alzheimer's Community Care social service agency stationed there.
While special needs shelters require advance registration, South Florida emergency management shelters say they never turn anyone away in an emergency.
And during every hurricane, "we do get inundated at the last minute," said Vince Bonvento, Palm Beach County[8] 's assistant county administrator and director of public safety. "We've had storms where people show up in ambulances. It's really discouraging that people don't make a plan."
The reason families may be neglecting hurricane preparations is they are too overwhelmed with daily caregiving tasks, said Beth Allen, executive director of the Joseph Meyerhoff Senior Center in Hollywood. Or they may be afraid to take their loved one to a chaotic and unfamiliar place, as such an environment could make them extremely agitated.
"We do spend time with them in the spring, trying to educate them about hurricane preparedness," said Allen, whose center runs an Alzheimer's day program and offers respite services to relieve caregivers. "August and September is not the time to start your planning."
dlade@tribune.com[9] or 954-356-4295
References
- ^ Alzheimer's Disease (www.sun-sentinel.com)
- ^ West Palm Beach (www.sun-sentinel.com)
- ^ Palm Beach County (www.sun-sentinel.com)
- ^ Broward County (www.sun-sentinel.com)
- ^ Alzheimer's Association (www.sun-sentinel.com)
- ^ American Red Cross (www.sun-sentinel.com)
- ^ Palm Beach County (www.sun-sentinel.com)
- ^ Palm Beach County (www.sun-sentinel.com)
- ^ dlade@tribune.com (www.sun-sentinel.com)
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