By Errol Castens/NEMS Daily Journal Oxford Bureau
Alzheimer’s Disease is agonizing, embarrassing, exhausting and expensive.
There is no prevention.
There is no cure.
But people who deal with Alzheimer’s in both professional and personal roles say there is hope.
By the numbers:
• In 2008, there were 916 Alzheimer’s-related deaths in Mississippi.
• Currently, more than 53,000 Mississippians live with Alzheimer’s disease.
• By 2025, it is estimated that more than 65,000 Mississippians will have Alzheimer’s.
• In the U.S., an estimated 5.4 million people have Alzheimer’s disease.
• Eighty percent of care at home is provided by family caregivers.
One hopeful sign is that Alzheimer’s is less seldom seen in terms of “crazy Aunt Maud” and is better understood for the physical disease that it is.
“Dementia is not a normal part of the aging process,” said Dr. Lisa Byrd, a gerontologist and nurse practitioner from the Jackson area. “It is an organic disorder involving progressive loss of the capacity to think and remember.”
Early diagnosis is one key for extending quality of life and dealing with issues before the disease becomes disabling.
“The earlier someone can get a diagnosis, the better it is,” said Monica Moreno, director of early stage programs for the Alzheimer’s Association. “They can start planning for their future, and it also provides them a chance to get involved with resources that can help along the journey.”
Dr. Ron Grant of Chicago sought help when he started struggling with routine tasks at his job as a prison chaplain at age 55. His neurologist diagnosed younger-onset Alzheimer’s, and prompt medication has kept him functioning at a high level for five years since.
“It changes your life dramatically, but it isn’t the end of your life,” Grant said.
While some people may ignore symptoms and others may panic over every memory lapse, the 10 warning signs of Alzheimer’s can be a guide. (See fact box.)
Even if some symptoms match, however, that’s not the end of the story.
“Many times we are hesitant to seek a diagnosis because we’re afraid of what the result might be, when in actuality as many as 60 other things can cause memory loss,” said Kathy Van Cleave, director of the Mississippi Department of Mental Health’s Division of Alzheimer’s Disease and Other Dementia. Many, including malnutrition, dehydration, urinary tract infection and drug interaction, are readily reversed.
Another source of hope is that while caregiving for a person with Alzheimer’s still becomes an indescribably difficult job, there are more resources for caregivers than ever before. Oxford, for instance, has the nation’s longest-running dementia support group, offering both practical and emotional support.
“We laugh together, we cry together,” said Dr. Will St. Amand, a four-time Alzheimer’s caregiver and one of the group’s founding members. “A new visitor will describe something they’re dealing with and see the other heads nodding with understanding,” he said. “It dawns on them, ‘I’m not alone in this.’”
Home health agencies, paid and volunteer sitters and nursing homes that accept short-stay patients also offer caregivers direct help, and Area Agencies on Aging can provide connections with those and other resources.
Amory, Booneville and Oxford are among Northeast Mississippi towns that have day respite programs that give caregivers a break while giving people with dementia a chance to socialize and enjoy activities suited to their abilities.
“Nobody wants to go to daycare, but everybody wants to go to a party,” said founder Dianne Arnold of Oxford-based Memory Makers. Participants and volunteers sing, exercise, snack, dance, solve puzzles, do art projects and celebrate at every opportunity while caregivers get time to shop, rest, visit with friends or see after their own healthcare.
“Every community needs a respite day program. It can be started in a church and can be run on a shoestring budget,” Arnold said.
Dr. Daniel Potts, a Tuscaloosa, Ala., neurologist, promotes art therapy for people with dementia through Cognitive Dynamics, a nonprofit organization. Potts’ father, Lester Potts Jr., was a hard-working sawmill operator who started painting in the respite program Caring Days after being diagnosed with Alzheimer’s.
“He could not put a sentence together when he painted ‘Blue Collage,’” (see painting above), Dr. Potts said.
“Blue Collage” contains several elements – a boot, a hat, a fence and a birdhouse among them – that old family photos revealed were central parts of Lester’s childhood. His many works created at Caring Days led to a public art show and a book that combined his art and his son’s poems.
“These therapies support personhood. Humans need to creative, to be productive, to be independent, to be loved and to be in community with others who understand them,” Daniel Potts said. “When personhood is strengthened, Alzheimer’s is weakened.”
Research is yet another somewhat hopeful horizon. While several treatment trials have failed recently, many other promising studies are in various stages of proposal and progress.
The University of Mississippi Medical Center recently opened the Memory Impairment Neurodegenerative Dementia (MIND) Center.
“[T]he MIND Center brings together some of the largest neuro-epidemiologic studies ever conducted, state-of-the-art brain imaging and powerful new genetic technologies,” its website states. “The goal? Accelerating the pace of discovery in the search for treatments that may slow or prevent Alzheimer’s and other forms of cognitive decline.”
While the current five million Alzheimer’s cases in America are estimated to cost the U.S. economy some $200 billion per year in caregiving, lost productivity and other measures, some advocates say too little of that figure is being spent to find a cure, a preventive or both.
“Cancer gets $5 billion a year for research; heart disease gets $4 billion; AIDS and diabetes get $3 billion; Alzheimer’s gets $500 million,” said Joe Franco, associate director for public policy at the Alzheimer’s Association. “We’re not making the forward progress we need to, and that’s because the federal government isn’t making the research commitment that it needs to.”
The establishment of the National Action Plan on Alzheimer’s is calling for that half-billion dollars to be expanded to $2 billion to meet its 2025 goal for having a prevention and effective treatment for Alzheimer’s.
10 Warning Signs of Alzheimer’s:
• memory loss that disrupts daily life
• challenges in planning or solving problems
• difficulty completing familiar tasks at home, at work or at leisure
• confusion with time or place
• trouble understanding visual images and spatial relationships
• new problems with words in speaking or writing
• misplacing things and losing the ability to retrace steps
• decreased or poor judgment
• withdrawal from work or social activities
• changes in mood and personality
The National Plan to Address Alzheimer’s Disease establishes five goals to prevent future cases and to better meet the needs of American families currently facing this disease:
• prevent and effectively treat Alzheimer’s Disease by 2025
• optimize care quality and efficiency
• expand supports for people with Alzheimer’s Disease and their families
• enhance public awareness and engagement.
• track progress and drive improvement