Alzheimer’s Association stages forum at URI

SOUTH KINGSTOWN – On Jan. 24, The Alzheimer’s Association Rhode Island Chapter participated in an open discussion at the University of Rhode Island about navigating the world of Alzheimer’s disease.

Guest speakers recounted their journey from caregiver to research volunteer, career changes, and the eventual diagnosis. Professionals provided tips on how to communicate concerns, plan for care, share available community resources and new research approaches to disease modification.

Speakers included Annie Murphy, the Alzheimer’s Association Rhode Island Chapter’s program manager; Jenny Miller, president and owner of Senior Care Concepts; David Creamer, Alzheimer’s Association volunteer, caregiver, study volunteer and Alzheimer’s/dementia care specialist; Marc Archambault, patient, study volunteer and caregiver; and Christine Getter, coordinator of clinical Programming for the University of Rhode Island’s George and Anne Ryan Institute for Neoroscience, who spoke about the university’s new clinical trial.

Miller, who works with and provides support to those affected by the disease daily, profoundly provided the mantra for the evening.

“One of my clients declared that ‘I have Alzheimer’s, but Alzheimer’s doesn’t have me,” she said. “This disease does not define you.”

She said that should be the approach and positive attitude to addressing the disease. Friends and relatives should not leave the lives affected by Alzheimer’s, including the caregivers.

Creamer, a longtime member of the Pawtucket School Department and an Alzheimer’s practitioner, explained the need for clinical trials as well as providing advice.

“There won’t be a world without Alzheimer’s disease if there are no clinical trials,” he said. “Without them we will never find a cure.”

He shared a story about his father throwing his credit cards in the trash, which spurned thoughts on making plans for those affected and if they were clear on their end of life wishes.

“Caregivers need a plan to transition their loved one through the disease,” he said. “Where are the insurance policies, how about bank statements, wills, car titles, deeds?”

He stressed that people should pick up the warning signs of dementia and Alzheimer’s and take them seriously. And he asked if people trust the neighbors of patients.

“Make sure your loved ones are safe, and make sure the neighborhood they live in is safe.”

Murphy stressed the need to support caregivers and patients, including through support groups and community events. Caregivers can suffer from burnout, so providing them the resources they need is vital. Those looking for appropriate clinical trials can use Trialmatch.alz.org.

Archambault, a University of Rhode Island graduate, who has Alzheimer’s, said that his approach was to take the disease head on and used those friends and family around him as resources and as a support, including those who worked with him and for him at the business he runs. He explained that his father also had Alzheimer’s, and its effect his mother and his family deeply.

“There are various stages in Alzheimer’s and for those of us who are in the early stage (people) may not be aware of the disease, so when you hear about someone with it please do not assume that that person is in the last stage,” said Archambault. “People need to know that there are many people like me are walking around who are still working and adding their good work to the community.”

He stressed that people should continue to be friends to those with the disease and to caregivers.

“61% of caregivers pass away before the patient,” he said. “It is a very tough and done mostly by family.”

Archambault recommended that friends ask caregivers how they are doing and for those with the disease, he suggested to say ‘I am sorry this is happening to you.’ He also said a hug or putting a hand on a shoulder goes a long way. \

“It is ok to ask them how they are doing, and it is worse if they never mentioned it,” said Archambault. “It makes it seem like you don’t care.”

He also explained that many people don’t disclose they have the disease.