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The Side of Dementia No One Talks About: The Toll on Caregivers

Dementia caregivers need support but aren't always ready to ask for it.

By Elyse Notarianni



Alzheimer's is unimaginably difficult for those who suffer from the disease. But what's not as often discussed is how difficult it can be for everyone who cares about the person with dementia.


"The disease affects the caregivers and the rest of the family,” says Cynthia Epstein, a licensed clinical social worker at NYU Langone Medical Center. "It affects friends. It affects everyone. But that's the reality that often gets overlooked – and it shouldn’t."


Epstein began helping dementia caregivers more than 25 years ago while working as a social worker on the NYU Caregiving Intervention study. The 400-participant study showed that people who received the full NYU Caregiver Intervention, which included family counseling, were more satisfied with the support they got from family members. As a result, their mental and physical health was better and they were able to keep the person with dementia at home a year and a half longer on average than people who received usual care.


"This study showed what so many had felt for so long – it's an emotionally taxing disease for everyone involved, and people need help and emotional support," says Epstein. "But what still holds today is that people are so willing to give care but don't feel like they can ask for care themselves.”


The results of the original NYU Caregiver Intervention led to NYU's Family Support Program, funded by a New York State grant, which serves caregivers and family members of people with dementia. The program’s services are at no cost to families.


When a family member develops dementia, caregivers often go through a process of adjustment along the journey, says Epstein.

"It often starts with denial," she says. "People may brush off the signs, saying it is just a senior moment. But as the disease progresses, these moments become more obvious. They have difficulty managing finances. They suddenly miss appointments they've faithfully kept for years. They put themselves in danger by forgetting the burner on the stove was on. But there are moments when things are normal, and everyone convinces themselves that nothing has really changed, and that’s how he always was."


But eventually, the reality sinks in. Caregivers can experience disappointment, sadness, anxiety and anger as they try to come to terms with their loved one's condition. The emotional toll of caring for someone with dementia can be isolating and lead to burnout, which can cause feelings of depression, irritability, fatigue, and withdrawal.


"Caregivers often take better care of their loved ones than they do of themselves," says Epstein. "They tend to neglect their own medical, emotional, and physical needs without realizing it. Then, suddenly, someone points out that they haven't gone to their doctor for years or haven't gotten their hair done in months. And it finally hits."


But it doesn't have to be this way, says Epstein. Finding support can significantly affect mental health and quality of life.


"I run four support groups that allow people to get together and say things to other caregivers they could never say elsewhere," she says. "It's not socially appropriate to say you resent your parent for needing your care. In a support group, these feelings are understood, not judged.”

Without the outlet to express these thoughts, people are left hurting in two ways: They're stuck in these feelings they can't control, and they feel ashamed for having the feeling at all.


“It's an unhealthy cycle,” says Epstein, “and no one wins.”


In spite of being overwhelmed, they can find joyful moments in the caregiving process.


"There are light moments when you laugh and smile and can connect with your loved one," she says. "There are beautiful moments when they seem themselves again in between the difficult moments, which keep a caregiver going. With the right support, those moments are easier to find."


The effects of caregiving may linger long after the person with dementia passes away.


"They mourn the loss of the future they planned to share, the loss of their loved one, even time they spent together when their loved one was impaired," says Epstein. "Feelings about caregiving are complicated, and people need support to live with the contradictions."


Dementia caregiving is hard enough at every stage, and there's nothing to gain from going through it alone.


"If you're caring for someone with dementia, remember: you're important too," says Epstein. "Do not forget to care for yourself, and do not hesitate to ask for help."



NYU Langone's Family Support Program provides resources to maintain your well-being while taking care of your family member with dementia.


Comprehensive services include care consultation, resources, education, and cultural experiences free of charge, online and in person, for family caregivers in Manhattan, Brooklyn, and Staten Island.

*Programs are offered in English and Spanish, with remote phone/Zoom options available.


Programs:

Care Consultation: Licensed clinical social workers will meet with you individually or with other family members to help you address changes in your daily life and relationships


Programs for Caregivers:

  • Caregiver workshops and lectures on how to provide good care, obtain support for yourself, identify and access resources, implement legal and financial planning, and respond to the challenges of dementia.

  • Support groups for family members of people with dementia

  • "Kaffeeklatches": Informal gatherings for family caregivers to get together and chat.

  • Workshops with museum educators to discuss and create art in a supportive environment.

  • Seminars on using art and music to create positive experiences for the person with dementia.


Special Programs for People with Memory Loss

Caregivers can enjoy free time while their relatives engage in these stimulating programs.

• The Buddy Program™ pairs an adult in the early stage of dementia with an NYU student for intergenerational friendship and a learning experience.

• A Place for Us is a recreation group that provides opportunities for people living with memory loss to meet and engage creatively with others through art, music and dance therapy


Programs for Caregivers and their Relatives with Memory Loss to Enjoy Together

• Museum and garden tours, dance and musical performances specially designed for caregivers and their family members with dementia.

• Memory Cafés for caregivers and their family members living with dementia provide opportunities to socialize and enjoy performances by visiting singers and musicians.

• Referral to affiliated programs such as the Unforgettables, a chorus for family caregivers and people with memory loss.




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