Alzheimer's continues to be an increasing problem in the country. More than five million have Alzheimer's, while there are more than 15 million caregivers with more than 17 billion hours of unpaid care in 2012.
To help spread awareness of the disease and answer questions, the Alzheimer's Association held a town hall meeting in El Dorado Tuesday evening.
"Our founding fathers had a vision for an organization that provided support to caregivers in their time of need," said Marsha Hills, Alzheimer's Association executive director.
That is one of the goals of the organization today, in addition to providing funding for research.
"We offer a wide variety of programs and resources," Hills continued.
Those include training for professional staff and caregivers, a resource library, arts and inspiration center, peer to peer helpline for caregivers and respite grants, among other things.
"We work every day to improve the present and future life of senior citizens," she said.
Today, Alzheimer's costs the healthcare system more than $200 billion a year.
"We would like to invite each of you to contribute to the fight against Alzheimer's," Hills said.
To help educate people, there were four people on their panel to address several issues regarding healthcare. The panel consisted of Dr. Ryan Schroeder, a neuropsychologist with the University of Kansas School of Medicine; Jenna Huffman, family care coordinator with the Alzheimer's Association of Central and Western Kansas; Michael Steinberg, Home Instead senior care franchise owner and volunteer ambassador; and Barrick Wilson, family caregiver and volunteer speaker and ambassador, who's wife was diagnosed with Alzheimer's in 2008.
Wilson began the discussion by talking a little about himself.
He took early retirement and was a full-time caregiver for his wife.
He recalled reading in a book about loving someone with dementia, it said a person needs to find some kind of meaning to their loss experience. The meaning he has found is going out and talking with others, as well as trying to get funding for research.
He said Alzheimer's doesn't even get 2 cents from each American per week in research funding.
"We need to face up to the need," he said.
The panel went on to discuss several issues surrounding Alzheimer's.
The first issue was research.
"Research is very important and is widely underfunded, particularly for Alzheimer's-type dementia," Schroeder said.
He said the national plan focuses on looking at what the disease is, risk factors and protective factors, as well as how to treat it.
Another arm of the research looks at what to do to help those who already have Alzheimer's, something being done through clinical trials for new medications.
Page 2 of 3 - "The national plan really encourages this type of research," Schroeder said. "Research is going to be the biggest thing we can do to help those who currently have the disease and those who will get the disease in the future."
Huffman agreed with what he said.
She said she deals with a lot of care consultations, with people often asking if it is even worth being diagnosed.
"Yes," she said to that question, "because it will help to find a cure for future generations."
Steinberg said they also are able to use research to preserve dignity.
"Research for me is very important," Wilson added. "Alzheimer's is the sixth leading cause of death in America and it is the only cause that doesn't have something to slow it down."
Another area the panel discussed was the stigma associated with Alzheimer's.
"For many people with dementia, even their family is ashamed they have a cognitive disability," Schroeder said. "They think they are crazy. There really is a stigma attached."
This prevents a lot of people from getting an accurate diagnosis.
"Many patients hide their symptoms because people view them as crazy," he said. "We need to fight this by educating the public."
Huffman agreed the best way to fight the stigma is through education, which is why the association offers classes.
"We need to understand everybody is affected by this disease," she said.
Through that understanding there also is more care needed.
Steinberg said in 2007 there were about 8,300 seniors per geriatric specialist. Now there is one for every 11,000 and in 2025 it is projected to be one in 25,000.
He said there is a pretty wide support network and people need to take advantage of that.
Wilson said he sees the stigma every day.
"It is amazing the amount of misinformation that contributes to stigma," he said.
The third focus for the association discussed was the need to enhance quality of care and expand availability of resources.
"Education is really important," Schroeder said.
He said there are really two high-need areas in healthcare. The first is education of the primary care physician and the second is education in nursing homes.
"Some don't have as much knowledge," he said.
Huffman said they also need to educate physicians to work with caregivers.
Steinberg encouraged people to look at the number of care options available in Wichita because he did not think any of them were full.
"The resources are there but we need to educate people," he said.
Page 3 of 3 - Wilson said he has had some good experiences with the medical community.
"The area I am concerned about most is the misunderstanding about the grief caregivers go through on a daily basis," he said.
The final issue they discussed was public caregivers in the family and community.
"Caregivers are very important and most under appreciated," Schroeder said. "One in three caregivers have symptoms of depression."
The main concern is they fail to adequately care for themselves.
"There's no one educational outlet that is going to work for everyone," he said. "We need to take care of ourselves in order to take care of our loved ones."
Huffman said it is often difficult for caregivers, who have to be there 24/7. She said options were available to give them a break.
Steinberg also said they need to look at caregiver distress, which can result in a breakdown of the person providing care.
Following the panel discussion, the audience was invited to ask questions and share stories. Many questions centered on diet, tests and exercises. The consensus for most of it was there are a lot of different opinions.
There is a blood test but it is expensive and may not necessarily mean a person would get dementia. As for lifestyle, people were encourage to eat a well-rounded diet and get physical and cognitive exercise.