Congressman Peter Roskam

Representing the 6th District of Illinois

Share Your #ALZstory

Share Your HIPAA Story as an Alzheimer's Caregiver

What’s the problem with HIPAA?
The 1996 Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule set the national standard for how doctors can access, use, and share your personal health information. This kind of peace of mind is paramount when it comes to how your health records are handled, and the HIPAA Privacy Rule is considered by many experts to be a well-functioning provision. However, an increasing number of real-world applications of the law are showing that health care providers often misinterpret HIPAA, causing access issues for caregivers. The HIPAA Privacy Rule expressly permits sharing with caregivers at the doctor's discretion; however, some providers may not be well-trained in communicating with families, and insisting that HIPAA prevents a certain level of access to a caregiver may be used as an excuse.

What does this have to do with Alzheimer’s Disease?
The progression of Alzheimer’s and other dementias pose a unique challenge with respect to the Privacy Rule, as early-stage patients may not understand to disclose – or may not choose to disclose – diagnosis or treatment information with their families, and transmittal continues to be delayed the more the disease progresses.  Unfortunately, this means any possible opportunity for early treatment and preparation (such as drawing up Power of Attorney, Guardianship, and other documents) will be missed, and this may cause a speedier progression of the disease, as well as additional hardship for the patient’s family.

How can I help as a caregiver to an Alzheimer’s patient?

First, share your story!
Please fill out the form at the bottom of this page to confidentially relay your experience encountering HIPAA as a caregiver. Should I or my staff like to share your story to help bring awareness about the HIPAA hurdles that caregivers experience, we will reach out to obtain your permission -- you may also decline to provide such permission at that time.

Next, take action!
As a caregiver, chances are you know others whom have been affected. Help the word about this effort on social media by using the hashtag #ALZstory and Tweeting @PeterRoskam. Here are some suggested posts to get you started:

  • Join me in sharing your #ALZstory with @PeterRoskam by visiting
  • Check out to share your #ALZstory with @PeterRoskam.

Finally, learn your rights as a caregiver!
Read more about the rights you have to obtain information regarding a patient in your care in these Department of Health and Human Services documents: “A Patient’s Guide to the HIPAA Privacy Rule” and “A Provider’s Guide to the HIPAA Privacy Rule”.

If you have any questions, comments, or concerns, please contact