In most cases of dementia, there are two people in need – the person with the disease and their caregiver. Adrianne DeVivo, the new dementia specialist at the Hartford HealthCare Center for Healthy Aging at Windham Hospital, cares for both of them.
DeVivo conducts assessments with dementia patients and their caregivers in person, over the phone and in the home. The goal is to provide practical tips for living with dementia, and connect people with any needed community services.
“I try to meet the caregivers wherever they are in their journey and walk with them,” she explains. “It’s a particularly lonely situation, especially when you consider that dementia is something you can’t see so people forget there is a problem these families are dealing with.”
Joe Zuzel, resource coordinator with the Center for Healthy Aging at Windham, said the new position is designed to help increase communication with those struggling with dementia and, in the process, help them manage difficult emotions to lower their stress level.
“Caregivers are the gatekeepers to the world in which the Alzheimer’s patients live. Adrianne is helping them reconnect with skills they have always had but maybe are not used to using with their parents. She’s helping them flip their perspective,” Zuzel explains.
Janlyn Neri of Colchester reached out for help caring for her mother who has Alzheimer’s.
“The challenges of caring for a parent with dementia/Alzheimer’s are overwhelming and far-reaching,” Neri says. “I needed guidance for medical and legal issues and strategies for dealing with the day-to-day challenges.”
The help, she adds, has been “comforting, educational, affirming and life-saving.”
“Knowing that Adrianne is available to give me informed, wise and thoughtful advice means I can attend meetings on mom’s behalf and advocate for her with facts, confidence and the right priorities.”
Working with Alzheimer’s patients and their caregivers is a passion for DeVivo, who previously worked as the coordinator of family-centered care at Windham, as well as an advocacy manager and behavioral specialist within Hartford HealthCare, a community resource specialist for the state, and a transitions coach and unit director for Alzheimer’s care for other facilities. She earned a bachelor’s degree in sociology from Eastern Connecticut State University.
“I fell in love with the opportunity to see people through this chapter of their lives. The patient’s brain is dying but I’m helping others see the light that person is,” she says. “I tell them the patient responds to their emotions and I help them access the tools to be happy, open and compassionate with their loved one. It opens up a whole new relationship opportunity for them.”
Helpful advice
Many of the tips she offers are simple but drawn from her experience with the disease. Dementia, for example, narrows and lowers a person’s visual field so she’ll suggest a caregiver place things on eye level in a cabinet so the patient can find them. Another tip, DeVivo continues, is to use a black mat outside a door the caregiver does not want the patient to go through.
“With their narrowed view, they see the mat as a large, gaping black hole and they won’t walk on it,” she notes.
She also stresses with caregivers that they can only help the person with dementia remember things they know, not learn new tasks.
“One man wanted to buy his mother a Keurig coffee pot so it would be easier and safer for her to make coffee. I told him it was unlikely that she could learn how to operate the machine. He’d be better off picking up an old-fashioned pot like one she used to use,” DeVivo said.
Neri says some of the best suggestions have been how to answer her mother’s often heart-wrenching questions.
“Adrianne has a gift for giving me words and phrases to use in responding to mom’s questions about wanting to go home – ‘What’s wrong with me,’ ‘Why can’t I live with you,’ ‘Where am I staying tonight’ and ‘Why do I live here,’” she says of her mother’s new home in a memory care facility. “Each response is designed to validate mom’s reality and leave her feeling relaxed and loved.”
Ongoing connection
Once she makes contact with a family, DeVivo phones regularly to check on them. As the disease progresses, she may schedule a reassessment. Patients and caregivers can also call her with questions or concerns. The service also helps connect families to what Zuzel calls “wraparound services” in the community such as homecare, physicians, the Healthy Minds Program, etc.
“We help individuals navigate the complex medical and resource world so that they can get the help they need and deserve,” he says. “Our goal is to assist people in living independently and safely while helping to reduce the rate of hospital readmissions.”
“There’s no judgment,” DeVivo stresses. “I’m here to help you write this chapter as best you can, and to show you that there’s still joy here, it just looks different. We’re going to help you find the joy.”
Referrals for access personalized dementia services can be made by calling the Center for Healthy Aging at Windham Hospital at 860.456.6877.