The Alzheimer’s Foundation of America (AFA) released the findings of their I CAN: Investigating Caregivers’ Attitudes and Needs survey. The survey uncovered significant trends among caregivers of Alzheimer’s patients, including a link between the stigma associated with the disease and dramatic delays in Alzheimer’s diagnosis. The AFA found that caregivers are in dire need of support and educational resources, and that despite the burdens of this tragic disease, caregivers often felt they came out stronger and more compassionate as a result of caring for a loved one.
We spoke with Eric Hall, the president of the AFA, to hear more about the survey, what the AFA learned about caregivers, and what we can do to improve the quality of Alzheimer’s care in this country.
A-I: Why did the AFA embark on this project of surveying the caregivers of Alzheimer’s patients?
EH: The Alzheimer’s Foundation of America (AFA), as the nation’s leading Alzheimer’s advocacy group, felt it was critical that we reach out and get a deeper understanding of the hearts and minds of Alzheimer’s caregivers. We really felt it was a great opportunity for the Foundation to hear directly from caregivers some of their concerns as the Foundation tries to address them and determine where to put our resources, and where we can be the most help.
A-I: Tell me more about the stigma associated with Alzheimer’s disease - what causes it, and what does it mean for individuals with Alzheimer’s disease?
We knew before we conducted the survey that the stigma existed. We heard it from families all over the country, that people would treat them differently once their loved one ended up with a diagnosis or when they themselves were diagnosed. It’s due to the nature of the disease - there’s not enough public education, there’s not a strong enough public awareness campaign about what Alzheimer’s disease is, and what exactly can be done.
I think most people believe that this disease is an immediate death sentence, but we know that there are treatments - for the early stages and later stages. These are treatments - not a cure - but what it does is sustain the quality of life for an individual with Alzheimer’s for years.
We’re all afraid of getting old. I think as a nation we are terrified that we would end up with Alzheimer’s - and because there’s no cure, we believe it’s the most hideous thing. And that’s true. But the problem with that stigma is that it delays diagnosis. The individual that begins experiencing some symptoms of Alzheimer’s often waits a number of years before he talks to his primary care physician about this. Spouses often take even longer before they take their loved one to get help, and they’ve all admitted it’s because of stigma.
A-I: Why is it so important that individuals with Alzheimer’s get diagnosed so quickly?
EH: Early diagnosis of the disease is important because you can get treatment early, but equally important is that without that early start, families have no chance to put together a plan for caring for their loved one. It’s almost twice as hard on families [if they wait] than if they had more time to construct a plan and also connect themselves to an organization like AFA - we might be able to alleviate some of the burden.
A-I: What can we do to turn this trend in delayed diagnosis around - to help individuals and caregivers feel comfortable and confident seeking help?
EH: I think the one thing that’s important and necessary, that the AFA is looking at, is a nation-wide campaign equal to that of breast cancer, or cardiovascular disease - these initiatives have been very effective in lowering the rates of those diseases because they get individuals to go see their doctors. For Alzheimer’s disease, it’s time. I think we could eradicate the stigma by getting information out.
Because the stigma exists, caregivers are not as likely to reach out for help, but there are resources available to help with all of the issues covered in the journey from diagnosis all the way through the end stages of Alzheimer’s.
There are specific issues related to this disease state that are unique to it. This disease eradicates the person’ memory, and thereby eliminates the person, and so that type of behavior and what comes from that type of deterioration are profound, and training and education are important, as well as support. Caregivers need to be willing to lean on other people.
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?
EH: When you deal with Alzheimer’s disease, and the outcome is so bleak and the burden is so enormous and the outcome so tragic, I’m always looking for the silver lining, the signs of hope, the one piece that shines clear that can motivate caregivers.
The last piece of information that we got out of the survey - that two-thirds of caregivers reported that they’d become more compassionate through caring for a loved one with Alzheimer’s, and 75 percent reported that they felt stronger through caring for an individual with Alzheimer’s disease - these people hold me in awe. Perhaps these are the blessings that come with the burden of caregiving.
To learn more about Alzheimer’s disease, management, and treatment, read our guide to Understanding Alzheimers.
To read a full report of the AFA survey findings, visit www.alzfdn.org.