Officials from the South Carolina Chapter of the Alzheimer's Association gave a group of volunteers who help seniors enrich their social interactions and retain their physical and mental health some added tools on how to provide support for those who may be suffering from the sixth leading cause of death in the United States.
Taylor Wilson, director of communications and advocacy, and Sheila Lewis, the Midlands area program director, met on May 3 with members of a Senior Companion Program that the Orangeburg-Calhoun-Allendale-Bamberg Community Action Agency Inc. has administered since 1976.
"These companions do a great deal of work in the community, and one of the areas we kind of morphed into was the area dealing with Alzheimer's and those folk in respite care, to alleviate those caregivers for a period of time. ... We've been mindful of this in our community since '76 and are trying to impact it," OCAB Executive Director Calvin Wright said.
Brenda Jenkins Greene, program coordinator, said Wilson and Lewis were visiting to provide program participants with necessary in-service training.
"We serve a lot of clients that have dementia, Alzheimer's, and they're wanting to hear from the (Senior) Companions as to what's going on, how they're handling situations. They want to take that information back to (6th District) Congressman (Jim) Clyburn's office because a lot of times the voices of those in the rural areas that we serve are not heard," Greene said.
The state chapter of the Alzheimer's Association reports that dementia is not a specific disease but rather a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example.
Lewis said a community-needs assessment is currently being worked on for Orangeburg and Calhoun counties. It is slated to be completed by early next year. What is missing? What is needed? Are more support groups needed? These are among the questions the state chapter seeks to answer, she said.
"That will entail connecting with the gatekeepers here so they can help us determine or put together this community needs assessment. I know that we need more medical services because that's always an issue in the rural areas. What can we do to help you take care of your loved one? We will be planning that.
"We're also looking at our caregivers and constituents in Barnwell and Bamberg counties to do a needs assessment, but we're gonning to start with Orangeburg and Calhoun counties because we have a lot of caregivers who call into us who are needing help," Lewis said.
Caregiver stress is a reality for which the agency provides services. The association has its own support group that meets at 12:30 p.m. the third Tuesday of every month at Cornerstone Church at 1481 Chestnut St. in Orangeburg.
"There are also some small caregiver support groups, but they're not affiliated with the Alzheimer's Association. It doesn't matter. ... It's just a matter of making sure that we have some type of place where caregivers can come, relax, vent and network with others who are going through what they are going through," Lewis said.
In addition, the agency provides assistance in more than 140 different languages through its 24-hour helpline at 1-800-272-3900.
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"If they are in crisis at 2 o'clock in the a.m., I encourage caregivers to call that number. And them, in turn, that 24-hour helpline will make a follow up to our local office," Lewis said, noting that the website https://alz.org/ also providers information about Alzheimer's, the latest research and activities going on in communities across the state.
Helen Wilson, Stella Amaker and Leola Smith were among the Senior Companion program members who voiced their concerns.
Amaker said her mother had Alzheimer's and stressed the importance of caregiver support services. She said caregivers, in turn, need to be patient and develop a greater understanding of what a person with Alzheimer's is going through mentally and physically.
Lewis said she would be conducting a training on dementia care from 2 to 4 p.m. Thursday, May 16, at The Oaks at 1000 Methodist Oaks Drive in Orangeburg.
Adams said she became "stressed" in caring for a senior with dementia, but Greene said Senior Companion program participants could certainly be reassigned should their care giving experiences become too taxing for them.
Wilson said she checks in on a neighbor with dementia and sometime becomes worried about her well being and the potential of her being taken advantage of by others.
"Sometimes they forget that they eat already. It's a very serious problem that they need to work on right away," Wilson said.
Williams said there were several bills in Congress that sought to help in Alzheimer's care, including the HOPE for Alzheimer's Act, which would increase access to information on care and support for newly diagnosed individuals and their families -- providing essential support for those facing the debilitating disease.
Another was the Younger-Onset Alzheimer’s Disease Act, legislation which would amend the Older Americans Act to allow individuals under age 60 who are diagnosed with younger-onset Alzheimer’s disease to access the OAA’s support programs.
Wilson also gave eye-opening statistics, including that there are more than 5 million Americans living with Alzheimer's, with nearly 14 million to have the disease in 2050.
The cost of caring for those with Alzheimer's and other dementia is estimated to total $290 billion in 2019, increasing to $1.1 trillion in today's dollars by mid-century.
She also reported that more than 16 million American provide unpaid care for people with Alzheimer's or other dementia.
Bryanta B. Maxwell, executive assistant in Congressman Clyburn's Columbia office, was on hand to offer her support and take concerns back to the congressman.
"If there's anything you want me to take back to him, just let me know so we can get to work on that," said Maxwell, who can be contacted by phone at 803-799-1100 or email at firstname.lastname@example.org.
Lewis said, "We need to advocate more for those who we care for with Alzheimer's or any form of dementia. ...We're hoping that these wonderful Senior Companions will take note and be more proactive. I'm sure they are active, but be more active in terms of getting to our legislators, talking to them and letting them know, 'Look, I am a caregiver and we need to do more to help our caregivers as well as those who are suffering from the disease."