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.
Our Alzheimer's 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.