WESTERLY — With an estimated 23,000 Rhode Island residents currently suffering from Alzheimer's disease and more diagnoses expected, the state must respond to the growing public health need.
That was one of the primary messages Thursday during a community conversation on cognitive health at the Westerly Library sponsored by the Alzheimer’s Association, Rhode Island Chapter. The meeting, which was attended by about 15 people, was the first in a series the chapter is planning for locations throughout the state to gather input from residents whose lives have been affected by the disease.
Eric Creamer, director of public policy and media relations for the association's state chapter, encouraged those in attendance to share their stories publicly and to speak with state legislators to help ensure continued and increased funding to respond to the disease.
"The conversations that you have as individuals here, locally, working with local legislators and reaching out to the federal delegation to really continue to put in their mind's eye how important this is," Creamer said.
Barbara Capalbo, a member of the Hopkinton Town Council, asked that Creamer and his colleagues continue to push the state General Assembly for funding for respite care. Respite care allows primary caregivers time to be away from their loved one. Legislators made $185,000 available for respite care in the new state budget and Creamer said residents must advocate for continuing the funding in the future.
The General Assembly also passed legislation that calls for an update to the state's plan for responding to Alzheimer's disease and advocates that a director level position be established in the state Department of Health to coordinate the implementation of action in the plan, efforts to promote Alzheimer’s and dementia research in Rhode Island, and the inclusion of brain health in publicly-funded health promotion and chronic disease management activities.
A separate bill that was adopted calls for establishment of an advisory council to provide policy recommendations, evaluate state-funded efforts for care and research, and provide guidance to state officials on advancements in treatment, prevention and diagnosis. The bill also requires training for medical professionals.
Creamer called the bills "massive steps in the right direction."
The association plans to work for legislation in 2020 that would expand community care services for those under 65 to assist people with early onset Alzheimer's. Capalbo asked that the association continue to seek funding for older residents as well.
Annie Murphy, program manager for the state chapter, reviewed signs that point to Alzheimer's and encouraged annual cognitive testing for anyone 55 or older. She also reviewed the association's services, which include a 24-hour help line and support groups for families and individuals who receive the diagnosis.
Westerly Police Officer Anthony Alicchio, the department's elderly affairs officer, described a voluntary system that the department uses for families of people with dementia or special needs. The families can register their at-risk loved ones, providing a photograph to assist police in the event that the person goes missing or is need of services. Families are also encouraged to have an item that would assist a police dog track the scent of a missing loved one, Alicchio said.
Richmond Police Chief Elwood M. Johnson Jr. said his department uses a similar system. "It makes it a lot easier for us to disseminate information if police have it from the start," he said.
Johnson and Alicchio both addressed what they said can be a very difficult issue for families — convincing loved ones that it is no longer safe for them to drive. Alicchio said his department contacts the state Division of Motor vehicles to report individuals who show signs of no longer having the capacity to drive.
The DMV can require licensed drivers to take new driving tests, including an evaluation of their driving skills. Failing the test or refusing to take it results in license revocation, Alicchio said.
"It can take some of the pressure off of the family and puts it on us. I'll be the bad guy," Alicchio said.
Johnson estimated that as many 10 percent of the reports his department receives for potential DUI cases during the day turn out to be people struggling with mental impairment.
Julie Dowd Schaub, director of residency at The Elms, an independent assisted living and memory care center on Elm Street, described some of the facility's services as well as monthly support groups it offers at the Westerly Senior Citizens Center and the municipal human services office in Stonington.
Colin Burns, a nurse practitioner who works at Westerly Hospital, formerly volunteered as a group leader for the state chapter of the Alzheimer’s Association. He said he was pleased to see additional services being made available in the Westerly area. Previously, he said, local families often had to drive to Providence for services.
Burns said he will serve as lead nurse practitioner at the geriatric psychiatry wing that is currently under development at Westerly Hospital. The wing will initially consist of 12 beds and then expand to 18 beds.
"It's so great to see so many more local resources starting to grow," Burns said.