A huge and growing portion of Americans – 43.5 million according to a recent article in the Journal of the American Medical Association – are caring for aging family members, many while also raising children and holding down jobs. As more people become aware of the widespread exhaustion and burnout experienced by these family members, the medical profession has begun to identify family caregivers as “silent patients” at risk for sleep deprivation, depression, social isolation and other health-robbing conditions.
At Independence Care System, a big part of our job involves working closely with family caregivers to safeguard the health and welfare of our members. Often, helping a family member caring for someone with Alzheimer’s or another form of dementia is one of the most effective things we can do for the caregiver, and the member.
This assistance can take many forms, but communication is always the key.
Tacha Fletcher is a senior social worker on the ICS Interdisciplinary Team that specializes in dementia and other cognitive impairments. She says, “On our team, 98 percent of the time when you are reaching out to a member, you are really reaching out to the family caregiver.
“I had a case where the caregiver, who relies on email to communicate, was struggling because he often needs to make irregular adjustments to his mother’s home care hours so that he can attend to his own medical appointments and other needs. But irregular hours are difficult to schedule with a home care agency and the situation was made worse by the fact that his emails were going to just one person, a social worker who was often out in the field and couldn’t promptly deal with the scheduling requests.
“This man would be left up in the air, not knowing if his mother would have home care in place when he needed to leave her, which, of course, made him frantic. So stabilizing the communication became my priority.
“We were able to solve the problem by giving him three team members to send each email to. Now there is always someone who is able to respond, to reach out to the home care agency and get the hours he needs scheduled for his mom. In addition, we decided to stop using two agencies for his mom’s home care and use just one, which also helps streamline the process and ensures that the member is getting services from an aide she is familiar with, which is especially important when it comes to members with dementia, who often have trouble dealing with a new face.”
Helping caregivers get a much-needed break
All caregivers need breaks in order to stay sane, take care of themselves, or just get some rest. Earlier this month, Rudelania Gutierrez-Vargas (pictured above), a social worker on the ICS dementia-specialty team, was able to help make this possible for one family member.
“One of our members has a granddaughter who lives with her, manages her in-home aides and oversees her care. The grandmother is a hundred years old and needs a lot of assistance. This month the granddaughter wanted to place her grandmother for a week in a facility so that she could travel out of town.
“The facility that the granddaughter wanted to send her grandmother to is not in the ICS provider network, so we would not normally place a member there. But in this case the caregiver really wanted her grandmother in this particular setting, where there were people working who she had known for many years.
“We realized that if we could accommodate the granddaughter’s request, she would be able to leave and travel for that week with peace of mind, feeling confident that her grandmother was in good hands. So we decided to see if we could make that happen. Working with the ICS provider relations department, we were able to get authorization for the out-of-network facility and work with them to take in the grandmother for that week.
“It meant a lot to the caregiver to know she could go and get the respite she needs without worrying because she felt good about who would be caring for her grandmother. And we were happy to be able to help her get what she needed.”
“Another thing that comes up for caregivers is the inability to get any sleep,” Rudelania says. “I have a member with late stage Alzheimer’s who we have enrolled in a night program at the Hebrew Home. He doesn’t sleep at night and so, of course, his wife could not sleep. Now, her husband enjoys the program, which is from seven in the evening until seven the next morning, and it allows her to sleep at night so that she can take care of him during the day.
“She told me that before we enrolled him in the night program she was getting sick all the time. Now, having that respite, and being well rested during the day while she is caring for her husband, it makes such a difference to her.
We want to know what you need
Early next year ICS will survey family caregivers of our members with Alzheimer’s or another form of dementia. We want to learn what services we may be able to offer to further ease the caregiver burden.
Meanwhile, during National Family Caregiver Month and with Thanksgiving fast approaching, we are truly thankful for opportunity to partner with the hundreds of family caregivers we work with every day.