This year advocates for people with Alzheimer’s disease and dementia are hoping to secure $21 million in state funding for caregivers and their loved ones.
The funds would add to existing programs that fall under Medicare already set up by the state.
Alzheimer’s and dementia affect about 110,000 Marylanders, but that number is expected to grow to 130,000 by 2025, according to the Maryland Department of Health.
Alzheimer’s and related diseases are deteriorations of the brain, which lead to memory loss and can degrade a person’s quality of life to the point where they are unable to complete daily tasks.
In February, about 100 people clad in purple clothing descended on Annapolis. They are members of the Greater Maryland Alzheimer’s Association, purple is the color for Alzheimer’s and dementia awareness, and they planned to lobby their politicians for a handful of new benefits.
First, is $21 million to help people with dementia-related diseases age in place. The money would get rid waitlists for senior care, help in medication management and give caregivers respite care.
The advocates also want to pass abill that will establish a dementia care navigation program to help caregivers find the right resources they need in their community.
Finally, the advocates are pushing for an increase of $3.5 million per year for dementia-related programs in the Department of Aging Budget.
“This legislation provides gap filling services to caregivers whose loved ones are at risk of going into more costly nursing homes,” said Eric Colchamiro, the director of government affairs for the Greater Maryland Alzheimer's Association. “It allows them to age in place. It allows them to give them funds to age in place. And they age in place for on average, four years to seven years longer than people who don't receive those funds.”
People with dementia generally live better lives when they are around their families, according toJohns Hopkins Medicine.
However, there are somebenefits to nursing home care like better access to doctors, less chance of falling and better pain management.
For caregivers that want to keep their loved ones at home, options can be bleak. Drugs treating dementia are in the early stages and are not very effective.
“Alzheimer's research is where cancer research was in the 1960s and 1970s,” said Beth Matcham-Sheperd, an advocate whose husband is in the early stages of Alzheimer's disease. “These new drugs, these monoclonal antibodies, they're not accessible. They're very expensive. Medicare is not covering them. And they do have some side effects. They're saying the cost is $26,000 a year. So, then it becomes inequitable too.”
But, nursing homes are expensive too and caregiving can put enormous stress on people’s lives.
Jean Parker, an advocate and resident of Howard County, cared for her husband, who suffered from vascular dementia, for 15 years.
“I wanted to keep him at home with me,” Parker said. “With the type of insurance that we had, I could not keep him at home. He needed 24-hour care. The care that was offered to me was four hours, two times a week.”
Parker felt that if she had the kind of resources she’s advocating for she could have given her husband a better end of life.
“Had I had the chance to keep him with me,” she said. “He would have remembered how to brush his teeth for a longer period of time. When I went to the nursing home, and I gave him a toothbrush that morning, and he didn't know what to do with it, it broke my heart. Such a simple thing. And when you're not there with them all day long, because I couldn't be there all day, you miss some of the things that they're going through. But if they're at home with you, you can gauge what's going on, you know how to handle them.”
