Alzheimer’s and dementia patients might respond better to simpler strategies.
The Geriatric Emergency Department Collaborative (GEDC) (https://gedcollaborative.com/about/) and the Geriatric Emergency Department Accreditation Program (GEDA) (https://www.acep.org/geda/) are two major national efforts to help Emergency Departments provide better care for all geriatric patients, including those with Alzheimer’s disease (AD) and other forms of dementia.
While these initiatives are very positive steps, it will take many years before most hospitals implement GEDC and/or GEDA protocols.
There are two changes in medical practice that can be implemented immediately in most if not all hospital EDs that would greatly improve care for patients with Alzheimer’s or other forms of dementia. I have given a lot of thought to this recommendation, which is based upon my own years of experience as an AD spouse caregiver, and years of interaction with many other AD caregivers.
My first recommendation is to train all ED clinicians to approach patients in late stages of AD/other forms of dementia as they already approach infant patients. I probably should have realized that years ago, but it didn’t occur to me until I recently watched a TV program in which a mother brought her infant into a hospital ED.
Physicians appropriately peppered the mother with questions seeking helpful information, knowing that parents can often provide an accurate health history, medications and events around the reason for presentation. Asking parents for such information is standard medical practice, not just in a TV show, but also in the real world.
Yet this TV scene contrasted sharply with my experiences whenever my wife, in late stages of AD, presented to an ED. Even though her level of cognition and verbal communication was comparable to that of the child in the aforementioned TV episode, Emergency medicine physicians routinely acted dismissively towards me, even asking me on more than one occasion to “please wait outside” while they examined my wife.
After watching that TV program I am now firmly convinced that we need to train emergency physicians to approach AD/dementia patients as they do infant patients. A physician would never ask an infant to describe the type of pain he/she is feeling, or to describe exactly where it hurts, or for how long that pain has persisted, or to describe the pain intensity on a scale of 1 to 10.
Yet EM physicians asked my wife these questions when she was in late stages of AD. They asked questions that my wife could not possibly understand, let alone answer and were unwilling to let me provide them with helpful information.
EM physicians should know better, especially after my wife couldn’t respond coherently to questions about her name, or date of birth, or where she lives or her location. Physicians should have realized that asking additional questions about her pain or why she was brought to the ED would be fruitless. They should have wanted to listen to what I could say to possibly help them diagnose and treat my wife effectively. But this never happened when my wife was brought into the ED … not even once.
I am not just speaking of my own personal experiences. As a former member of an AD spouse support group, a former facilitator of two AD spouse support groups for the Alzheimer’s Association, and as the recipient of many emails in response to articles I’ve written about AD, caregivers repeatedly tell me that they felt that EM physicians did not want input from them even while these physicians seemed lost about how to communicate with their loved ones.
Attempts to communicate with late stage AD/dementia patients will be no more successful than attempts to communicate with infants. EM physicians should seek helpful information from caregivers of their AD/dementia patients in the same way they seek helpful information from parents of infants.
A second step to immediately improve medical care for AD/dementia patients is to require all EDs to have at least one physician and nurse on each shift that has received specific training in techniques to communicate effectively with AD/dementia patients. This step is especially important for those times when caregivers of these AD/dementia patients are not present.
Granted, implementation of this step would be very costly, and possibly even impossible in some settings, such as in small rural hospitals. If so, then this staffing recommendation can be viewed as an aspirational goal by those hospital EDs where it just can’t happen.
However, those hospitals can still seek new ways to communicate more effectively with AD/dementia patients. Just as COVID-19 is now changing the ways some doctors treat patients at home, perhaps ED doctors can use technology to communicate with knowledgeable doctors in other hospital EDs who can advise them how to more effectively communicate with their AD/dementia patients.
Our country’s aging population, with its growing number of people diagnosed with AD and other forms of dementia, suggest increasing numbers of hospital ED visits by AD/dementia patients in coming years. EDs are scary enough for late stage AD/dementia patients … strange faces, unfamiliar surroundings, bright lights, loud sounds, hard gurneys, painful needles and IV infusions, and all the rest.
We can at least consider new proposals to allow EM physicians and nurses to communicate more effectively with their AD/dementia patients and caregivers.
If these two steps were eventually implemented care for late stage AD/dementia patients in EDs would improve dramatically.
Even if implementation of that second step will take more time, let’s at least immediately start training doctors to view AD/dementia patients and their caregivers as they already view infants and their parents, while continue trying to incorporate the broader elements of the GEDC and GEDA initiatives.