Government and private efforts to find proven ways to treat or cure Alzheimer's patients have accomplished less than anyone hoped thus far, with success on those goals now deemed -- at best -- to be years away.
A succession of speakers at a forum in Oakland last week focused instead on potential help that could be more realistically achieved for someone else: the patients' caregivers.
The state needs to find ways to provide more relief and education and training to support the family members shouldering the burden of keeping some 400,000 Pennsylvanians with dementia out of nursing homes, various individuals told the state's Alzheimer's Disease Planning Committee on Tuesday at the University of Pittsburgh.
The committee, created by Gov. Tom Corbett early this year with a one-year timetable to recommend ways to address the growing devastation of the disease, held the last of six sessions around the state to hear concerns from the public. Some two dozen speakers from local social services, medical and research fields made presentations during the three-hour meeting, with the most evocative coming from close relatives of Alzheimer's patients.
"It's the longest grieving process that I know about," said Gwen Ogle, a longtime volunteer involved with aging services of the Valley Care Association in Sewickley, who had to learn care strategies and issues firsthand when her husband was diagnosed with dementia at age 60.
Even with her own knowledge and support from friends and family, she said, "I really was totally unprepared to become a caregiver. ... I learned the hard way."
Thomas Lauritzen of McMurray said he and his wife have spent the past six years caring for her mother, whom he described as lacking any motivation to do things for herself as a person with moderate Alzheimer's. Their use of an adult day care center helps relieve the strain, but their options are limited if they need to get away from home for a couple of days.
"If respite care were available for a short time, a weekend even, it would be very valuable, but it is cost-prohibitive," Mr. Lauritzen said. "We need to do something about that for caregivers."
Leslie Grenfell, executive director of the Southwestern Pennsylvania Area Agency on Aging, which covers Washington, Fayette and Greene counties, described a Bentleyville family that was receiving $200 in monthly caregiver support from the state. The money could have helped pay for respite services, thus allowing a night or two away from the stress of family duties, but the family had to use it to cover incontinence supplies instead.
The cost of either in-home or in-facility respite care to provide a temporary break usually exceeds any financial assistance the state provides, and many households don't qualify anyway because of income restrictions, Ms. Grenfell said. There is no such assistance specifically for families caring for a person with Alzheimer's or a related dementia.
University of Pittsburgh researchers and other speakers spoke of multiple studies that have shown increased illness, depression and mortality among caregivers who wear down under the strain of caring for spouses or parents who have lost the ability to care for themselves, interact socially or respond with love and appreciation for their caregivers.
Brian Duke, the state secretary of aging who heads the governor's Alzheimer's committee, acknowledged the need for respite aid and other family caregiver services has been a theme throughout the public forums held this summer. Direct state spending on Alzheimer's at present amounts to just $250,000 annually given to two Alzheimer's Association chapters for outreach efforts, and it's unclear if the state has any resources to increase that, Mr. Duke said.
He said he expects the committee's recommendations, which are to be delivered to the governor by February, will include a focus on improved state links with agencies and institutions that serve or interact with individuals and caregivers affected by dementia.
"The state can be a catalyst," even if it is limited in what it can do to solve such a broad disease itself, Mr. Duke said. "We're learning about the gaps that exist between existing programs and funding and what may be achieved in the community with some new community partnerships."
Gary Rotstein: firstname.lastname@example.org or 412-263-1255.