Caregivers at a town hall forum Tuesday told of the financial, physical and emotional toll taken by Alzheimer’s disease.

“The emotional loss is the hardest — seeing a loved one in that progression,” said John Baker, 71, of Waterloo, who was diagnosed with early-onset Alzheimer’s disease in 2010 and worries about what his wife and family will experience.

More than 50 people heard Baker and other panelists speak at the meeting at Mercy Medical Center; several audience members also told their stories.

Sandy Hargreaves, 72, of Shellsburg, whose husband spent weeks in a hospital psychiatric ward, asked why there is no place for Alzheimer’s patients who become combative.

“It was a very bad place for him to be,” she said, her voice breaking.

Many spouses face financial hardships because government programs do not cover the cost of nursing home care unless the family’s finances are completely depleted.

Lou Stepanek, a retired Cedar Rapids police captain, has been a caregiver for his wife since she was diagnosed with Alzheimer’s disease 22 years ago.

“Something’s got to be done to address this,” he said, noting that he has spent more than $500,000 for nursing home care for his wife in the past eight years. “Please do something for people who can get no help.”

Congress passed a national plan to address Alzheimer’s disease this year, which includes a goal to treat and prevent it by 2025. Advocates asked that legislators back up the plan with an additional $100 million in funding for research, education and support.

Bill Theis, chief medical and scientific officer for the National Alzheimer’s Association, said the current Alzheimer’s funding of $450 million in federal funds pales in comparison to the $6 billion for cancer research, $4 billion for heart disease and $3 billion for HIV/AIDS. Funding to fight those diseases has resulted in considerable progress, said Theis, who is based in Chicago.

Debbie Jones of Cedar Rapids, who is on the association’s national board of directors, said deaths from Alzheimer’s — the sixth leading cause of death in the United States — have increased while those from the other causes have decreased.

An estimated 5 million Americans live with Alzheimer’s, though not all are diagnosed, she said. That number is expected to increase to 16 million by 2050.

The cost of caring for people with Alzheimer’s and other dementias is $200 billion this year and is expected to increase to $1.1 trillion annually by midcentury.

For more information, see www.alz.org

Claire Russell looks at her husband Bernie Russell as Claire along with family discuss dealing with Bernie's Alzheimer's on Friday, September 11, 2009. (Crystal LoGiudice/The Gazette).