The job of caregiver is one of endless struggle, and those who work with Alzheimer's caregivers say it is a struggle that is too often ignored by policy-makers.
Now, with experts predicting a surge in the number of Alzheimer's cases in the coming decades, advocates worry that the needs of patients and caregivers could overwhelm the health care system.
"We don't have enough infrastructure right now to handle what we have," said Eric Hall, president and chief executive of the Alzheimer's Foundation of America. "If we're not ready for what we've got ... when do we start building an infrastructure for what we know is coming?"
The six families profiled in Newsday's recent Alzheimer's series represent only a tiny fraction of those struggling against the disease while grappling with government services and the health care system.
There are about 5.3 million Americans with Alzheimer's - 55,000 on Long Island - and nearly 10 million caregivers. Estimates are that by 2050, Alzheimer's cases will surge to as much as 16 million.
Alzheimer's is a degenerative, fatal disease and the most common cause of dementia. It is most prevalent in those over 85 - where it may strike 1 out of 2 people - but 5 percent to 10 percent of all cases occur in those under 65 in what is called early- or young-onset Alzheimer's.
There is no cure but researchers hope in the next 10 to 15 years to find new ways to stave off the disease's progression.
"What are we going to do for the next 15 years or more?" asked Hall. "How do we support those people?"
Change from ground up
Those in the field want to see change from the ground up, starting with physicians.
"The field has now reached about 7,000 certified geriatricians for a country that needs at least 14,000 and will need in excess of 30,000 within the next two or three decades," said Dr. Gisele Wolf-Klein, director of geriatric education for the North Shore-LIJ health system.
To that end, Wolf-Klein said many geriatricians are acting as mentors to other doctors, teaching them about elder care. Hall said his group is also creating an advisory board to make curriculum recommendations to medical schools.
Mary Ann Malack-Ragona, head of the Long Island chapter of the Alzheimer's Association in Ronkonkoma, is working with the New York State Department of Health to examine a possible additional level of care for dementia patients. Right now, hospitals and facilities such as nursing homes are unable to care for a dementia patient who exhibits aggression. Instead they are often sent to psychiatric wards.
Malack-Ragona is also part of the state's Alzheimer's disease coordinating council. The council was formed in response to town-hall forums held by the state Department of Health last year to assess caregivers' needs. Some issues they are looking into include: increased home health care training, mandated cognitive testing as part of a physical exam, and streamlining the process of Medicaid assistance.
The Alzheimer's Association estimates 9.9 million people in the United States are unpaid caregivers providing care valued at $94 billion. For families, the cost of caregiving can be devastating. Assisted living and nursing facilities cost $6,000 to $14,000 a month on Long Island.
Keeping a patient at home can run tens of thousands of dollars a year. Medicare pays for limited home services after hospitalization, and many families earn too much to qualify for Medicaid coverage.
Slow response so far
Advocates say response to the Alzheimer's crisis on both federal and state levels has been slow. Long-term care and cognitive issues were largely absent from the debates over health care reform, experts say. One of the more ambitious bills that has not been acted on would create an Office of National Alzheimer's Project within the White House, coordinating research and care.
On Long Island, Malack-Ragona is trying to raise money to create an Alzheimer's resource center. The center would include a cafe, recreation area and classroom space for training programs. She hopes to have doctors, lawyers and social workers available. Malack-Ragona said the association has raised $1 million but still needs another $2.5 million.
The eldercare network is still extremely fragmented, said Fred Jenny, executive director of the Long Island Alzheimer's Foundation in Port Washington. Caregivers remain isolated, he said, and often wait for a crisis before reaching out for help.
"What ultimately happens is the family member can't cope and the person needs to be placed," Jenny said. "We don't have enough nursing home beds and assisted-living beds to take care of everyone who's going to need that care. So we're going to have to put a lot more emphasis on being supportive of the family caregiver and giving them assistance in maintaining their loved one in the community."
TO READ Newsday's series on Alzheimer's disease and caregivers, and to see photographs and video of the six families profiled in the series, go to newsday.com/alzheimers. The Web site also contains nearly two dozen articles on various aspects of the disease, a comments section, a link to our Facebook page where people can leave tributes to loved ones and a searchable database of hundreds of local resources and links to Web sites containing more information about Alzheimer's.
TO FIND help locally, call the Long Island Alzheimer's Foundation at 516-767-6856; the Long Island chapter of the Alzheimer's Association 631-580-5100, or its 24-hour helpline at 800-272-3900; or the Alzheimer's Foundation of America 866-232-8484.
TO TAKE PART in the Nov. 22 C.A.R.E Day Symposium at the Sid Jacobson Jewish Community Center in East Hills - an all-day educational program for professionals in the field of aging and those who are caring for a loved one with dementia - call 516-484-1545.