Personal Blog #13 ... Dementia Patients in Hospital Emergency Departments

I have written several articles describing how poorly my late wife, a victim of early onset Alzheimer’s disease (AD), was treated whenever she was in a hospital Emergency Department (ED).  My ED experiences as her AD spouse caregiver were uniformly poor.  I always found nurses to be extremely competent and empathetic.  However, I almost always found doctors to be ignorant about how to communicate with her effectively, let alone how to diagnose and treat her effectively.  In addition, many times her doctors, and technicians, routinely refused my offers to provide information that would help them diagnose and treat her more effectively.  As a result, my wife suffered needlessly during each visit.

In my March/April 2018 article in Annals of Long-Term Care, I wrote a response to an article published in that journal’s previous issue about the American Geriatrics Society’s formation of the Geriatrics Emergency Department Collaborative (GEDC), a consortium of some of our country’s leading health systems and medical societies, “to help improve emergency care for our nation’s older adults.”  I expressed my appreciation for this initiative, but I also noted that there was no mention of the GEDC seeking input from the caregivers of dementia patients … the very people who could offer firsthand observations of patient care, and who could suggest possible recommendations for improved practice based upon their experiences.

The GEDC’s stated goal is to improve “healthcare outcomes” for older people in EDs. 

Their website (https://gedcollaborative.com/about/) states, “We are committed to making change through the education of individuals, and hospital-wide initiatives that create sustainable improvements in practice at all levels.”  The GEDC has now applied for a five year grant through the NIH (National Institutes of Health) and NIA (National Institute of Aging) “to support the development of a collaborative research and resource network to synergize the expertise, skills, and resources of investigators within the geriatric emergency medicine and Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) research communities, to identify and address research gaps towards optimizing recognition and emergency care of older adults with AD/ADRD.”

Last month I was honored to be asked to serve on the Geriatric Emergency care Applied Research (GEAR 2.0) Task Force that will implement this grant if it is funded.  In my role as a former AD spouse caregiver, I will be able to provide a voice for dementia caregivers and their loved ones, and to describe what it’s like for dementia patients and their caregivers in an ED.  I will also serve as a dementia patient advocate to provide a voice for recommending improved medical training for ED personnel, and improved ED practices and procedures.

Should you have suggestions for improving patient care in hospital EDs, please email them to me at acvann@optonline.net and I will try to include them in my recommendations to the Task Force.  Meanwhile, I will provide periodic updates of the status of this grant proposal on this website.  It’s been almost four years since I was in an ED with my wife, and I would like to think that doctors have made some progress in learning how to communicate effectively with patients experiencing moderate or severe stages of AD or some other form of dementia.  I would also like to think that doctors have made some progress in learning how to effectively examine and diagnose dementia patients brought to their ED.  Sadly, dementia caregivers tell me this is still not happening. 

Please let me know if you have suggestions for ED improvement based upon your own personal experiences as a dementia caregiver.  This grant may be a genuine opportunity for caregivers to make a difference … to really affect the training of current and future ED doctors and improve the procedures followed in EDs across the country.  Let’s make the most of it!