Carmen Torres used the simplest of words, but the way she had to stop and steady herself before she could speak - the way her voice shook when she finally spoke of her Alzheimer's disease - gave them an emotional richness that cut to the heart of why she and a group of politicians, advocates, caregivers, and researchers had come to a hearing at the University of Pennsylvania on Thursday.
The Pennsylvania Alzheimer's Disease Planning Committee has been traveling around the state gathering information about the state of dementia care in Pennsylvania in preparation for producing a plan in February. On Thursday, the committee, made up of legislators and dementia experts, heard more than three hours of testimony in Penn's Biomedical Research Building.
Torres, 52, has been diagnosed with early onset Alzheimer's disease. She had to retire from her job as a Philadelphia police officer. "I have learned to live in the moment," she said. "I know I'm sick, but I also know what's going on."
She said she hopes for a cure but fears for when she'll have to ask her young family for help.
"I've been self-sufficient for a long time, so becoming dependent on others makes me sad," she said.
Torres then made a plea echoed by others at the event: "Please address the issues of people who are younger with Alzheimer's." She got a standing ovation.
Secretary of Aging Brian Duke, who chairs the committee, said the group was looking at the gamut of dementia issues, including prevention, education, health-care delivery, the quality of the caregiving workforce, and research.
"We must first understand the enormity of the crisis before us in order to chart our course ahead," he said.
According to the Alzheimer's Association, more than five million Americans have Alzheimer's, the best-known of the memory-robbing conditions. It accounts for 50 percent to 70 percent of cases of dementia, said Steven Arnold, who directs the Penn Memory Center. Other common types are vascular, frontotemporal, and Lewy body dementia. People with Parkinson's disease often develop a form of dementia.
There were some common themes. One was the need for more education and support for caregivers - both family members and pros - as well as for other people who might need to know how to cope with those with cognitive problems, such as police and firefighters, financial services workers, even retail and restaurant workers.
Other themes were the possibility of using school-loan forgiveness to induce people to work with the elderly, improving transportation, and assuring that the elderly take only medications they really need because some can interfere with thinking.
Heshie Zinman, chair of the LGBT Elder Initiative, urged the group to consider the special needs of aging gays, who may face discrimination in institutions and often have less family support than straight peers.
Arnold emphasized that a host of risk factors for dementia - poor education, head injuries, smoking, alcoholism, obesity, heart disease - are preventable and would be good targets for public health campaigns.
Jason Karlawish, another Penn dementia expert, focused on the financial problems of older people with cognitive problems, since they are easy targets for fraud and abuse. He said that the state should strengthen laws meant to protect adults from exploitation and that the financial services industry knows it is on the "front lines" of identifying people with dementia. "They're bothered about this and they want guidance," he said.
Contact Stacey Burling at 215-854-4944 or sburling@phillynews.com[1] .
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