Dementia’s toll

Costs, numbers of victims and caregivers soar

Alex Catchings, board member of the Alzheimer's Association of Northwest Ohio, left, speaking with Nick Vargas, development and communications coordinator of the organization.

Alex Catchings has far more insight into the subject of Alzheimer’s disease than many young adults his age.

The 25-year-old resident of southwest Toledo takes care of his grandfather, Will Catchings, 79, who was diagnosed with the disease several years ago.

“I am fortunate enough to do that. I love my grandfather. I believe in my giving back, and to be honest with you, I really appreciate what my grandparents have done. [My grandfather’s children] are unable to take care of him full time,” said Mr. Catchings, who sits on the board of directors of the Northwest Ohio Chapter of the Alzheimer’s Association.

“I know that Alzheimer’s is the next big epidemic that our country will face. We really need to get involved to be an advocate.”

According to the Alzheimer’s Association, more than 5 million people live with the disease and some 15 million people are caregivers — 15 percent of whom are long-distance caregivers whose out-of-pocket expenses are nearly twice as much as local caregivers — for patients with dementia.

Alzheimer’s, which affects a person’s cognitive abilities, is just one type of dementia. Toni Schindler, development and communications director for the local chapter, said that other forms include vascular and frontal temporal lobe dementia, Parkinson’s, and Creutzfeldt-Jakob disease.

Knowledge of Alzheimer’s is more than a century old. It was first identified in 1906 by German psychiatrist and neuropathologist Alois Alzheimer. Mrs. Schindler said it is more prevalent now because of a number of factors, including our increasingly aging population, better procedures for diagnosis, and increased comfort in talking about it.

“It has been around for more than 100 years. People had been living with it for quite some time, but it was kept quiet. It was called other things, and still has a stigma today,” she said, adding that 70 percent of those with Alzheimer’s live at home. Others are in long-term care, assisted living, or other facilities.

It’s estimated that this year Alzheimer’s will cost the nation $203 billion, a figure that is expected to skyrocket to $1.2 trillion by 2050. Additionally, a Washington Post report earlier this month on the Rand Corp. study of disease revealed that the annual financial toll of Alzheimer’s is from $157 billion to $215 billion, which surpasses the cost of cancer and heart disease.

Though some families have aides help, the responsibility of caring for someone with dementia can affect working caregivers’ level of productivity, Mrs. Schindler said. She added that some caregivers adjust their work schedules, and some simply retire.

In Lucas County, many families wrestle with those decisions.

“If you just look at Lucas County, we estimate there are 9,069 people with Alzheimer’s, with 27,207 caregivers,” said Nick Vargas, development and communications coordinator for the association.

In the 24 counties that make up the local Alzheimer’s chapter, there are 38,000 people with the disease and 114,000 caregivers, he said. Two Alzheimer’s day centers in Toledo are available for patients and their families. One is at the same site as the association, at 2500 N. Reynolds Rd., while the other is at 131 N. Wheeling St., Suite 2.

Mr. Catchings has lived with his grandfather for more than a year. Though he owns his own company, AltFuel, and works from home, he takes his grandfather to the day center so he can interact with other patients and engage in a variety of activities. He said his family wants to keep his grandfather out of a nursing home as long as they are able to manage to care for him.

“The center keeps [Alzheimer’s patients] stimulated and active and he’s around like-minded people,” said Mr. Catchings, adding that the center helps keep life normal for the elder Mr. Catchings. “They play games, do artwork, listen to music, dance, and keep physically active. He loves the center. He looks forward to it every single day.

“That’s generally [true for] the majority of the people. The caregivers really know how to work with a person; you have to keep the integrity of the person who has the disease, and they do a really good job at that.”

While Mrs. Schindler said the day center can be costly, the association works with families, Veteran’s Administration, the state PASSPORT program, and insurance companies.

According to the Alzheimer’s association, the number of deaths from the disease since 2000 has increased 68 percent, while deaths from other major diseases have decreased. It is now the sixth leading cause of death, and this year nearly half a million people are expected to die from the disease. Additionally, one in three senior citizens dies from some form of dementia.

The association helps families learn how to deal with someone with Alzheimer’s. A 24-hour help line is available for relatives to call with questions: 1-800-272-3900. More information is available on the association’s Web site, alz.org/nwohio.

“We spend a lot of time on the telephone with people guiding them,” Mrs. Schindler said.

The association’s third annual An Affair to Remember: Spring Gala at the Heather Downs Country Club is set for Saturday. For more details about the event with the Kentucky Derby theme and to participate in live “horse races,” contact Beth Wong at the 800 telephone number listed above or at bwong@alz.org.

Contact Rose Russell at: rrussell@theblade.com or 419-724-6178.