A wife had been caring for her husband with dementia at home for four years. She had come to McLean’s geriatric outpatient clinic to find out where to get more help for him. But it soon became apparent that she needed help herself. She was lonely and struggling with making decisions on her own. Her friendships had withered, and hobbies were a thing of the past.
“The goal of our services is to help caregivers build resilience instead of burning out,” said Marie Clouqueur, LICSW, geriatric social worker, who has helped many caregivers like this woman reclaim their lives. “Burnout can manifest as exhaustion, irritability, persistent worrying, depression, or difficulty sleeping and often leads to a decline in one’s overall health and outlook on life.”
When the caregiver is emotionally and physically exhausted, there are implications for the patient as well. “The well-being of the caregiver is fundamental to the care of the person with dementia,” said Ipsit Vahia, MD, interim chief of McLean’s Division of Geriatric Psychiatry. “We are now designing clinical programs where this understanding is foundational. We treat caregivers as independent care recipients rather than ancillary parts of dementia care.”
Expanding Services for Caregivers
For more than four years, McLean’s geriatric outpatient clinic has offered support services to caregivers with the help of philanthropy because these services traditionally have not been reimbursed by insurers. Through the clinic, Clouqueur runs weekly caregiver therapy groups, with participants matched based on common needs.
“Where the overwhelming demands of caregiving often bring up feelings of isolation, inadequacy, and guilt, the groups provide sustaining connections that, in turn, help restore confidence and competence,” said Clouqueur. “Group provides a space to hold the innumerable losses of dementia.”
She also provides individual therapy to caregivers, delivers workshops to professional and family caregivers, and maintains relationships with organizations like home care agencies and assisted living facilities.
Frederica Cushman was caring for her husband, Steve, at home when she joined Clouqueur’s support group three years ago. He passed away in 2023, but Cushman continues to attend the meetings and still gets a lot out of them.
“The experience of caring for a loved one with dementia is something you can’t understand if you’re not going through it,” said Cushman. “Having the chance to talk about your week and process your feelings is absolutely critical.”
According to Cushman, there is a remarkable combination of closeness and anonymity built among group members—they can talk about things they wouldn’t feel comfortable sharing with friends and family, and Marie’s leadership is a critical component of the group’s success.
“Marie is always able to frame our experiences in a different light—help us find a new perspective,” added Cushman. “She’s incredibly insightful and handles us all beautifully. We trust her completely.” Cushman also supports the program philanthropically to show her gratitude for all that she’s received.
Thanks to new sources of funding, McLean will offer more robust caregiver services beginning this summer.
One revenue stream comes through a new approach to dementia care called GUIDE (Guiding an Improved Dementia Experience), developed by the Centers for Medicare & Medicaid Services.
McLean was recently chosen to participate in GUIDE, which seeks to improve quality of life for people living with dementia, reduce the burden on unpaid caregivers, and help people remain in their homes.
“It’s a clear before-and-after moment for how dementia care will be provided in the United States,” said Vahia.
“Rather than looking at dementia as just a medical condition, it acknowledges the breadth and depth of the impact that the disease can have. GUIDE incorporates aspects of care that were not previously reimbursed, such as geriatric care management, home care services, and caregiver support.”
In addition to the expanded services of GUIDE, McLean received funding to continue leveraging technology in dementia care, such as wearable sensor technology and artificial intelligence-based tools.
McLean researchers are investigating how sensors can be used for early detection of problematic sleep-wake cycles in patients with dementia.
They are also exploring the feasibility of using AI-based tools like chatbots to dispense information and provide decision-making and emotional support to caregivers.
“We want to create a clinical service that is in some ways a living lab for innovation in caregiving through partnerships with technology companies, but also by potentially building technologies in-house as needed,” said Vahia.
Demand for caregiver services will only grow as the number of people with the disease increases. Today, about seven million Americans struggle with dementia, and by 2060, that number is expected to double to 14 million.
Approximately 65-75% of people with dementia are cared for at home by a family member, usually a spouse or adult child, and about two-thirds of those caregivers are women.
McLean is leading the effort to ensure that both patients and caregivers get the support and treatment they need during some of the most difficult times of their lives.
Support on a Lonely Journey
Susan Woskie and Debby Rosenkrantz were first introduced to McLean when Debby was diagnosed with Alzheimer’s, and she enrolled in a clinical trial for a new medication used to manage and treat the disease.
When the trial was discontinued, the couple felt discouraged at the loss of both their routine and the connections and relationships they’d built with the team in McLean’s Division of Geriatric Psychiatry.
Enter Marie Clouqueur, LICSW, who recognized a need and began running support groups—for both patients and caregivers. This, shared Susan, was a game-changer for both women.
Susan had participated in other groups prior to McLean, but having a knowledgeable social worker facilitating the discussions made all the difference—particularly during the isolation of the COVID pandemic.
“It’s crucial for me to have a place where I can openly share my feelings,” said Susan. “With Marie’s group, I get social-emotional support, peppered with a lot of practical help from both her and others who are having a similar experience.”
Clouqueur believes that it’s critical to consider the needs of both patients and their caregivers. “There are more than 60 million people in the U.S. who are caring for a friend, family member, or loved one,” she said.
“This role disproportionately falls to women, most of whom are over 50 and often managing careers and their own children.”
It is not uncommon for caregivers to burn out, which can manifest itself as physical, emotional, and mental exhaustion. The peer connection of support groups helps reduce the isolation felt by both patients and their caregivers.
Debby receives ongoing care at McLean and both women regularly attend their respective support groups. “Being a person struggling with dementia is a frightening and lonely path,” said Susan. “It’s important for both of us to have a community of people who are on the same journey.”
The couple also make annual contributions to McLean’s Division of Geriatric Psychiatry. According to Susan, philanthropy is their way of expressing their gratitude for the support and care they’ve received at the hospital.
If you would like to support McLean’s Division of Geriatric Psychiatry, contact Jen Meyers.
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