LITTLE ROCK, Ark – An Arkansas pilot program providing financial support for families caring for those with Alzheimer’s disease or dementia is being well received in the state, according to testimony given to lawmakers.

Members of the Alzheimer’s Disease and Dementia Advisory Council heard in testimony in the state capitol July 12. The pilot program was funded by the legislative council with a $200,000 grant to the state Department of Humans Services in the most recent legislative session.

The council is co-chaired by Arkansas Rep. Julie Mayberry and Sen. Ricky Hill.

Caregivers may apply for a $500 grant twice a year, six months apart, to fund an out-of-home caregiver providing respite care for someone suffering Alzheimer’s or Dementia.

“Our phones have been ringing off the hook,” Carolyn Berry, Alzheimer’s Arkansas executive director told the committee.

Respite care is the process of providing a break for a primary caregiver by providing funding for a caregiver to assist while a primary caregiver takes some time away to recharge or attend to other family affairs.

Berry told the committee that since the program launched on July 1, 33 grant requests have been received, with nine $500 grants awarded. Six have been denied, she added, explaining to the council that the applications were not filled out completely or were from outside Arkansas.

Of the remaining pending applications, 12 have been approved with payments expected to go out July 15. Payments are expected to go out to approved applicants each Friday, Berry said.

She expressed surprise that applications were coming from outside the state, saying it was a matter for caregivers from outside the state looking for support.

Others working in the support field also applauded the initial rollout of the program.

“Initial response has been amazing,” David Cook, Alzheimer’s Association, Arkansas Chapter public policy manager said in a post-meeting interview. “This pilot program will help us show the need for respite care.”

Cook testified to the council that the respite care could take several forms, with the $500 grants being applied to such things as adult daycare, assisted living, a home visit or anything which provides short-term care, he said.

While money may have been the primary challenge the program is tackling, the council heard that a secondary issue is finding qualified individuals to provide respite care.

“I’ve got the money, but now I just can’t find anybody to provide the service,” Sarah Schmidt, deputy director of Arkansas DHS Division of Provider Services, said.

DHS has begun a program providing online training for caregivers, as well as made initial steps to have a list of caregivers online which can be searched by county, fees, payment options and other information. A caregiver would have to request being placed on the list, which was originally only for licensed providers, but is being expanded to include those trained to provide respite care. UAMS also offers a free training for caregivers, the council heard.

One request made to the council was for legislation that would allow an online list, similar to the list of caregivers, of a maltreatment registry of those who should not be used for care due to a history of abuse or maltreatment.

Mayberry indicated willingness to undertake legislation to provide a law to create the registry.

The council concluded with discussion as to how the pilot program structure would need to be updated.

Cook said one need was to update the program to reflect health care changes in the post-COVID world. This included public education programs to inform about Alzheimer’s treatment and its impact on families, education of first responders including law enforcement on what to expect when interacting with Alzheimer or dementia sufferers and increased access to quality of care for patients and families.

A sub-committee was formed to update the pilot program legislation to reflect the needs Cook outlined.

Mayberry also spoke of the need to update the allowance for those in nursing homes, currently set at $40 per month, a rate set 15 years ago. She learned about this form a phone call from a constituent just prior to the council meeting, she said.

“They [the caller] begged me to have that increased,” Mayberry said.

Sen. Hill said after the council meeting that his hope was for the public to be aware of two points. The first was that people may apply for the $500 respite care grant twice per year.

The second was the importance of self-care for those caring for a loved one suffering from Alzheimer’s or dementia.

“It allows them to take some time off,” he said. “It gives them time to take care of themselves.”