Wendy DeLucca slowly began to notice subtle changes in her mother’s behavior and actions. It progressively worsened over the course of two years, leaving her incapable of comprehensible speech.
“It was very scary,” said DeLucca, who helped care for her mother, who had Frontotemporal Dementia, commonly known as Pick’s Disease. Delucca began to notice “sharp changes in personality and behavior. She would interrupt rudely and didn’t catch on to social cues. She had never done this before.”
Through support groups and counseling sessions, DeLucca and her family were able to deal with the realization of her mother’s disease. “Having a loved one with dementia is like wearing a veil over your face everyday. The best way to cope with it is to reach out and get as much information as you can so you can be as caring and understanding as possible. They can’t help how they act,” said DeLucca.
DeLucca spoke as a part of the OneWorld Progressive Institute’s public-access television show called 21st Century Conversations, hosted by N’Zinga Shani. The show was recorded in the studio last week and will air on NHTV in November to coincide with National Alzheimer’s Awareness Month.
Joining the conversation were Dr. Rajesh Tampi, Maria Tomasetti, and Dianne Davis, who are “all intimately involved in the treatment, management, and interaction with patients, loved ones, and clients with the disease,” said Shani.
The Alzheimer’s discussion informed and clarified common misconceptions made about dementia, and Alzheimer’s in particular.
Dementia is “a rubric of cognitive problems,” said Tampi, associate clinical professor of psychiatry at Yale University and director of Masonicare Behavioral Health Services. Some 50-70 percent of people with dementia have Alzheimer’s, its most common form.
“5.4 million people live with dementia, as of 2012. That means that 1 in 8 people have dementia,” said Shani, who moderated the discussion.
Tomasetti, executive director of the Alzheimer’s Association of Southern Connecticut, precisely outlined the primary steps to tailoring a plan and diagnosis for people with dementia: “First, it’s important to get the history and examine their self-care, family structure, and financial status.” She emphasized the importance of “send[ing] the message to families that they’re not alone.”
Dementia can often times be in the genes and lineage of a family, so “people must decide if ‘I live in the moment, or I need to plan to know to plan ahead’. It’s just different ways of coping with the illness,” said Tampi. “As a physician, I recommend people know so they can plan ahead for their future, so they can make an informed decision.”
A family member’s dementia doesn’t have to be dealt with alone, Tomasetti emphasized. “We want families to know that we’re there for them. It affects caregivers as well as patients. People need the help and support.”
Davis, case manager at the Adler Geriatric Center at Yale-New Haven Hospital, had a similar message to Tomasetti’s: “Don’t go through it alone. Families need to take care of themselves if you’re going to survive as a caregiver.”
Informing patients and families of the disease is extremely important. As “more and more people are being diagnosed at a younger age, we’re coming up with educational programs to help them learn about the disease and the feelings that come from the disease,” said Tomasetti.