Alzheimer’s disease is known as ‘the long goodbye.’ The progressive brain disease is irreversible with no known cure, slowly stealing the patient’s mind and leaving their loved ones to witness them slowly fading away.
There are millions of Americans living with Alzheimer’s or other dementias. The number of those affected by dementia will continue to grow as the U.S. population aged 65 and older continues to grow. The Alzheimer’s Association estimates that there will be 91,000 people affected in Connecticut by 2025.
From the earliest stage through the most severe, dementia can last anywhere from five to 15 years. Those with Alzheimer’s disease and related dementias are usually cared for by family members or friends. These caregivers provide care for a longer duration than caregivers of people with other types of conditions.
The demands of caregiving can limit a caregiver’s ability to take care of themselves. Family caregivers of people with Alzheimer’s and related dementias are at greater risk for anxiety, depression, and lesser equality of life than caregivers of people with other conditions. In 2021, Connecticut had 143,000 caregivers of people with Alzheimer’s and other dementias providing 158 million hours of care according to the Alzheimer’s Association.
Co-Directors of the Memory Program at the Center on Aging at UConn Health, Dr. Yazeed S. Maghaydah, assistant professor of Medicine, and Dr. Kristina F. Zdanys, associate professor of Psychiatry, were observing caregiver burnout among the families of their patients. Recognizing a need to support those who were caring for loved ones with memory issues, they had the perfect solution. Both Maghaydah and Zdanys are mentors to third-year medical students Victoria (Tia) Kozar and Emma Mastrobattista and approached them with the idea of a caregiver support group at the UConn Center on Aging.
Kozar and Mastrobattista, both interested in geriatric psychiatry, loved the idea of creating a caregiver support group and earned their certifications in dementia practice support group training. After being trained and earning their Dementia Support Group Facilitator certificates through the National Council of Certified Dementia Practitioners, Kozar and Mastrobattista sought mentorship from Dr. Breno Diniz, a geriatric psychiatrist by training and researcher at the UConn Center on Aging. Dr. Diniz is an expert in biomarker development in neurodegenerative and late-life psychiatric disorders, and studies the links between aging, psychiatric disorders, Alzheimer’s disease, and vascular dementia. Together they built the support group structure and program, recruited caregivers and developed a curriculum and a newsletter. The support group has been together for several months supporting spouses and children of those in all different stages of the disease.
Kozar, while in her third year as a medical student has spent the past six years working in dementia and memory care. As an undergraduate student at Quinnipiac University, she participated in Quinnipiac’s Students-In-Residence Program actually living at a Masonicare residential community as part of a collaboration between the two. Her neighbor at Masonicare started displaying signs of cognitive lapse and she struggled with how to help her. Kozar reached out to the Alzheimer’s Association Connecticut Chapter for assistance and soon after became an active volunteer of the organization, advocating and serving with her mentor Zdanys on the Medical Scientific Advisory Council.
Connecticut is a quickly aging state. When it came to choosing a medical school, Kozar knew she wanted to study at the UConn School of Medicine where the UConn Center of Aging is the epicenter of important outcomes for older adults.
Mastrobattista was matched with Maghaydah during her first year of medical school through the Clinical Longitudinal Immersion in the Community (CLIC) Program. The CLIC program is part of the curriculum that allows medical students to work with doctors in the real world from the beginning of their medical school career.
The early exposure to memory disorders and older adults sparked an interest in Mastrobattista who feels there is a healthcare gap in providing mental health treatment to older adults and decided to follow a growing passion in geriatric psychiatry and the treatment of memory disorders.
It’s often hard to ask for help or tell others of their loved one’s diagnosis for fear of stigma and how they may be treated. They also want to preserve the dignity of the people they love. The group gives the caregiver a place to step out of their role and be part of a community of others who understand what they may be going through.
“Often after a diagnosis of Alzheimer’s people don’t know where to turn for help,” says Kozar. “We have the resources to help loved ones and guide them in the right direction, they don’t have to do this alone.
The group meets once a month and due to the COVID-19 pandemic turned to virtual meetings that currently are still run virtually. The members discuss a variety of issues including self-care, managing difficult behavior, how to work through challenges the caregivers face, or anything someone brings to the group they are struggling with and can use support.
While Kozar and Mastrobattista lead the meetings Maghaydah and Zdanys attend to provide insight as appropriate.
“We are helping them be the best caregiver, but also teaching them to take care of themselves,” says Mastrobattista.
It can feel uncomfortable to put oneself out there in a group, but the team at UConn Center on Aging is still a resource for help for those not comfortable with the group setting.
The meetings are open to anyone who is in need of support as a caregiver to someone with Alzheimer’s or a related dementia or learners interested in dementia care. The next meeting will be held virtually on November 17th and those interested in more information can email alzcaregivers.uc@gmail.com
