From planning activities to making a home comfortable and safe, a new guide from the Alzheimer's Foundation of America aims to support dementia caregivers.
Among its programs, AFA provides educational conferences to teach people about caregiving, Alzheimer's disease, brain health and advance planning. It also publishes a free magazine called Alzheimer's TODAY.
Drawing from those initiatives, the organization decided to create a comprehensive guide for caregivers, providing a resource they can refer back to throughout their experience, said Chris Schneider, the foundation's director of media relations.
"We wanted to compile this just as a one-stop resource that people could keep handy," Schneider said.
The guide, released earlier this year as a special edition of the AFA magazine, is available to read online or in hard copy by request.
Topics range from finding support after a diagnosis to formalizing legal and financial arrangements to handle the cost of care.
One section explains concepts such as durable power of attorney, in which a trusted person is appointed to handle financial affairs on someone’s behalf, and designating a healthcare proxy, which allows someone to make medical decisions for another person who can't on their own.
The guide also discusses managing changes in behavior and communication.
"They're tools of empowerment," Schneider said of the different sections. "The more you know, the better able you are to address any kind of challenges you would face along the way."
Launched in 2002, AFA is a national nonprofit that provides guidance and support for families. The group's founder and board chairman, Bert E. Brodsky, was a caregiver for his mother, and felt on his own without resources such as helplines and support groups.
Its caregiving guide provides resources to get more support, including the foundation's helpline, which is available seven days a week and staffed by licensed social workers trained in dementia care. The free service is available by phone, web chat and text, Schneider said.
"I think a very common challenge that we continually try to reinforce and provide information about is that you can't do this alone," he said. "You need help. You need support. You need a team in place, and that's a message we continually try to reinforce among caregivers."
It's common for people to view caregiving as their sole responsibility, he said. But taking on the challenge alone can lead to burnout, which leaves both the caregiver and their loved one in a more difficult position, he said. The foundation encourages caregivers to ask for and accept assistance from family, friends and neighbors, Schneider said.
"Self-care isn't selfish," he said. "It's essential."
