A recent BrightFocus community event in Scranton PA brought together experts in Alzheimer’s treatment, caregiving, and clinical trials.
Alzheimer’s and Caregiving: An Evening with Kim Campbell featured the wife of the late country music legend Glen Campbell, whose public and private life with the disease was shown in the critically-acclaimed film, Glen Campbell: I’ll Be Me.
Ms. Campbell spoke of the toll of a “long and hard journey” for her family. She said that the blog she created, CareLiving.org, was named that because, “you’ve got to keep living your life” while caregiving. Her public awareness goals, she said, are to remove the stigma of Alzheimer’s and to create, “a culture of compassion… caregivers can’t do it by themselves, they need an entire community.” Ms. Campbell said that she and others in her family faced depression during this period, and spoke of the importance of support groups and other steps to help caregivers.
Mario Cornacchione, DO, MS, FAAFP, an Associate Professor at Geisinger School of Medicine and whose local medical practice runs several Alzheimer’s clinical trials, said his goal is to “raise the volume on the disease,” including greater participation in clinical trials. He encouraged families to learn more about early diagnosis of Mild Cognitive Impairment, signs of which can include repetition of speech, getting lost, and difficulty managing money and medicines. Dr. Cornacchione said this period is a key time to consider volunteering for clinical research, which he said is the only way for potentially-effective treatments to be evaluated for widespread use.
Janine Starinsky, Executive Director of Oakwood Terrace Memory Care, gave advice for families considering joining a memory care community. In educating families and raising awareness, she stresses that, “Alzheimer’s doesn’t take away dignity, our reaction to it does.” She said that for many, “the hardest thing is to let go of the responsibility” for daily care of a person with dementia. Her tips for families are, “accept it, expect it, and absorb it – plan ahead.” She urged friends and family members to get to know the nurses and other staff, and learn the best times of the day to visit.
Pennsylvania Secretary of Aging Teresa Osborne delivered opening remarks and presented Ms. Campbell with a letter of gratitude from Pennsylvania Governor Tom Wolf lauding her family’s courageous leadership on Alzheimer’s.
The event was moderated by Jim Coles, sportscaster for the local ABC television affiliate WNEP. Organized by BrightFocus, the evening was supported by the generosity of Premier Senior Living, Lilly, Oakwood Terrace Memory Care, and Commonwealth Health Emergency Medical Services.
BrightFocus’ Alzheimer’s Disease Research program supports innovative science worldwide, and shares research findings and best practices with families impacted by the disease. Speaking at the event, BrightFocus Senior Vice President for Strategic Partnerships Nancy Lynn noted that BrightFocus has funded $5.4 million in Alzheimer’s research at Pennsylvania institutions.
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