U.S. House Representatives Sander Levin and Brenda Lawrence, as well as Congressional staff from Debbie Dingell, recently met with the Alzheimer’s Association — Greater Michigan Chapter’s CEO Jennifer Lepard and senior managers of the organization, along with caregivers and individuals living with Alzheimer’s disease, to discuss improving care in Michigan and federal funding of research.
At the roundtable discussion at the organization’s Southfield headquarters, more than a dozen leaders, individuals living with the disease and caregivers shared personal stories about how Alzheimer’s has devastated them. One by one, attendees, including the members of Congress, expressed grave concerns about access to quality care, treatment and tangible support for caregivers whose physical and emotional stresses are often overlooked.
“There are so many challenges when you have a loved one who has Alzheimer’s disease,” Representative Lawrence, who was the caregiver to her grandmother, said. “I don’t care how wealthy or poor you are, your ethnicity or cultural beliefs…this disease can rip a family apart. It’s personal for me and I am now in a position to advocate…What I am really concerned about is care. I don’t think we have a good arm around how we care for our patients who have memory challenges.”
“In order to provide better care and treatments to those with Alzheimer’s, we must ensure there are sufficient resources to conduct research,” added Levin. “That is why we must increase federal funding for the National Institutes of Health so that we can learn more about this disease.”
Individuals diagnosed with the early stages of Alzheimer’s disease said they attended the coffee because they are determined to make an impact for change in Michigan.
Farzin Ghodsi, of Oakland Township, and a member of the Association’s Early Stage Advisory Group, suffers from mild cognitive impairment and said he wants to see increased federal funding for medical research, as well as help for caregivers.
The physical and emotional toll of caregivers needs to be addressed nationwide, the roundtable agreed. Topics need to be discussed range from the financial loss suffered when caregivers must leave jobs to take care of family members to the stress and years-long grieving as their loved ones’ memories slowly slip away. Levin noted that elected officials need to work together for great change.
Roger Bushnell, of Allen Park is the caregiver for his mother. He explained, “What many don’t understand is that with this disease, you grieve over and over. Every time the memory slips away further, I grieve that new loss. I miss my mother the most when I’m with her. There is not a glimpse of who she was. Caregivers grieve also for their lives that are no longer being lived to the fullest, and then they feel guilty about it – it is a cycle of stress.”
Detroit resident Dan Hale lost his wife to the disease and said when an afflicted individual passes away, the caregiver needs help as well.
“This disease. It’s life altering,” Hale said. “It wasn’t until about six months after my wife died that I realized how severely traumatized I was by it all. Then speaking with other caregivers, through the Alzheimer’s Association – Greater Michigan Chapter, I realized there are many of us all going through the same thing. We are in silos.”
Despite the time-consuming reality of caregiving, each attendee said they were determined to make change in Michigan.
“We need to begin to think about the families of those with Alzheimer’s and create a dementia-friendly society,” Caregiver Debra Smith-Dawson, of Harper Woods, said. “The numbers of individuals with Alzheimer’s and dementia are only going to continue to increase as the population increases. Not everyone even has family to help them care-take. I myself am a family of one. ”
About the Alzheimer’s Association – Greater Michigan Chapter
Founded in 1981, the Alzheimer’s Association – Greater Michigan Chapter is a private, nonprofit, voluntary health organization and one of more than 80 chapters across the United States. The Greater Michigan Chapter is headquartered in Southfield, with regional offices in Alpena, Grand Rapids, Marquette, Midland and Traverse City. Covering 60 counties, its services are available to more than 138,000 individuals and their families who have Alzheimer’s disease or related dementias.
The vision of the organization is to create a world without Alzheimer’s disease while optimizing the quality of living for individuals and their families affected by dementia-related disorders. For more information, visit www.alz.org/gmc or call 248-351-0280.