James Appleby, RPh, MPHOn today's Health AGEnda, we once again highlight dementia and its impact on older adults and their families, as we did recently with Chris Langston's post on the global burden of Alzheimer's disease. Now, we are thankful for the opportunity to share a personal account by James Appleby, Executive Director and CEO of the Gerontological Society of America, about his own family's experience with another form of dementia, Lewy Body Disease. James uses this difficult situation to issue a call for better communication by clinicians when delivering a devastating dementia diagnosis.
We are also thankful to be working in partnership with James and the GSA in our new Change AGEnts initiative, which will support a network of experts who will tackle issues faced by caregivers of older adults with dementia. We look forward to sharing more about that work as it develops. In the meanwhile, please share this story and help GSA and the Hartford Foundation advocate for better person-centered communication between clinicians, patients, and families.
It’s a scene that plays out daily in exam rooms across the country. The aging patient, accompanied by a caregiver, is seeing his or her physician and a discussion starts regarding the patient’s memory. My family is now among the growing number of Americans who are watching their loved ones age and have participated in this sad and uncomfortable drama with a parent’s physician.
My mom was recently diagnosed with one of the many forms of dementia GSA members study and that families wrestle with every day. The physician performed physical assessments and conducted multiple cognitive challenges with my mom for over 30 minutes before reaching his diagnosis of Lewy Body Disease. As painful as it is to learn this, my family doesn’t dispute the diagnosis; there are clearly cognitive changes underway. Having a name for the condition is oddly validating and comforting. Now we can work on making the most of the time left and ensuring my mom gets all of the supports possible to help her continue to enjoy her early 80s.
However, I do have a concern about how the diagnosis was communicated. After making his decision, the physician matter-of-factly informed my mom that she had Lewy Body Disease before also tersely informing her that she could not drive any more (an especially pragmatic issue for older adults in rural settings) and that she could not live alone (not an issue for her since my sister lives with her). There was no discussion of what the diagnosis means (and what it does not mean), no explanation of what the future trajectory of the disease may (or may not) be, no explanation of what the prescription he provided to her would do (or what side effects to look out for), no discussion of how to tap available community resources, and no guidance to the caregiver about prudent next steps.
I’m heartened knowing there are pockets of excellence nationally in which new chronic care integration and coordination models are improving the care of dementia patients so their experience is nothing like this. However, given the legions of older adults that will receive a similar diagnosis over the next 20 years, we need to find a way to improve the process in every exam room so that every patient has a “dignified diagnosis” as described by the Alzheimer’s Association.
In some respects, this situation reminds me of the 1980s HIV/AIDS epidemic. Healthcare professionals were challenged in communicating with patients, families, and loved ones due to a sense that little could be done, a lack of clarity about the future trajectory, and the absence of a clear communications protocol. It was a time early in the disease before the discovery of highly effective medicines to treat the infection and interventions to prevent the disease.
To address this need, processes and protocols to systematize HIV screening and the diagnosis of AIDS were developed. Those patients testing positive were educated about what a positive test result meant (and what it did not mean) as well as what a negative result meant (and what it did not mean). During this period, having consistent guidance about how and what to communicate to those being screened was helpful to all involved.
For clinicians, patients, caregivers, and families confronting a dementia diagnosis, we need to find way to get a more consistent process into the exam room to make this devastating but necessary dialog more useful. Developing and implementing a systematic process to increase the likelihood of clear, complete communication as a part of early screening and throughout the determination of a dementia diagnosis would be a good start.
Reprinted from the September 2013 issue of Gerontology News.