Editor’s Note: This is a sponsored article and was not written by Haitian Times’ staff.
More than half of the 4.5 million people living with Alzheimer’s Disease in the U.S. identify a family member as their primary caregiver, according to the Alzheimer’s Association.
Typically, most or all caregiving work falls to one family member, usually someone in the immediate family, such as a sibling or child. But given the considerable burden of caring for someone with Alzheimer’s, how can the extended family better support the person who has taken on the role of primary caregiver?
Andy Moise, a social worker at Sunnyside Community Services who works in their CARE NYC program, has seen firsthand how families are changed by the diagnosis of a loved one. The CARE NYC program specializes in caregiver support for those whose loved ones have Alzheimer’s and dementia, and Moise has helped many caregivers who struggle to find support, even in their own families. “The extended family often has difficulty understanding the severity of the disease, and more distant family members like nephews and nieces may be reluctant to get involved,” he says.
Moise shared his top four ways extended family can better support the primary caregiver.
One: Don’t minimize the situation
“Suppose a sister is the primary caretaker for her mom with Alzheimer’s. Her cousin may come over for lunch on Sundays, and for that hour or two, the caregiver’s mother seems fine. The cousin may remark, ‘Your mom is such a perfect angel,’ or even say, ‘I don’t see why you’re having such a hard time!’”
These comments diminish the reality of Alzheimer’s. People living with Alzheimer’s may act differently from day to day. Diminishing the severity or difficulty of the work makes caregivers feel that their work is undervalued, says Moise, adding emotional pain to the physical stress of caregiving.
Two: Encourage the caregiver to seek out support
Encourage the caregiver, and encourage them to find help. Many times, caregivers feel guilt when they realize they cannot manage all of the daily needs of their loved one alone. Let them know that by seeking help, you, as a family member and peer, will see them as stronger, not weaker.
Three: Spend a day in the primary caregiver’s shoes
Another piece of advice Moise gives to the families of caregivers is to spend an entire day caring for the person with Alzheimer’s or dementia, not just a few hours. “Spend a day in their place,” he says. “It will be easier to see what is really going on with your loved one if you do.” Moise says another wonderful benefit of family members taking over for a day is that it gives the primary caregiver a day off.
When Moise started working with Alzheimer’s patients and their families, he would sometimes be in disbelief that a person he met had Alzheimer’s “It seems remarkable. They can tell you a story with lots of details, but over time, you realize they forget what you’ve just told them a few minutes ago, and may ask your name many times.”
Four: Seek out education about Alzheimer’s or other forms of dementia
Moise suggests the entire extended family take time to learn about the condition of Alzheimer’s and other forms of dementia. “CARE NYC offers education for primary caregivers, but also for their families,” he says, “These sessions help family members better understand the disease and support one another. They identify the process, progression, and unique traits of Alzheimer’s.”
To learn more about Sunnyside Community Services’ CARE NYC program, and the support services it offers, visit https://www.scsny.org/care-nyc or call 1-877-577-9337.