A-I: What are some of the biggest challenges facing caregivers of individuals with Alzheimer’s today?
EH: First and foremost, getting the proper diagnosis - going to the doctor, finding someone who can give a proper diagnosis. Second, the behavioral issues that come with this disease – 60% of individuals with this disease wander, which brings a huge amount of safety issues and concerns. What to do with your loved one during the day – the day-to-day care issues are another major concern for caregivers. There’s also possibly legal issues – who has guardianship of the individual, if that’s an issue, who has control of funds. Finally, the greatest difficulty is the financial issue. This is a disease that, because of Medicare’s classification as a custodial disease, does not allow for all of the reimbursements of some other diseases. Families will spend $16,000 to $30,000 out of pocket to care for a loved one. It becomes a vicious cycle - there’s no respite, no break, no possibility of being reimbursed for those expenses. The caregivers then become worn down because they don’t get any breaks, and the quality of care ends up slipping because caregivers take better care of loved ones if they can take care of themselves.
A-I: What can caregivers do to relieve stress?
EH: Caregivers should also remember that it’s important to take care of themselves. They should allow themselves time away from their caregiving duties, time to step away to be revitalized – this empowers them to come back and continue their role as caregivers.
A-I: What role do online support groups play in providing support for caregivers?
EH: I firmly believe that any outlet that allows an individual who’s a caregiver or individual who has Alzheimer’s to communicate is critical. It’s important that people have the opportunity to express themselves in any medium, to allow them to let it out. If they could be supported, accepted, and not judged at the same time, then I think it would be a very healthy project.
A-I: Was there anything about the survey findings that surprised you?
