If your loved one with dementia has to be hospitalized, whole new problems present themselves. The home-like environment they have known either with you or in a memory care community has no equal in the world of hospital care. Often the very problem your loved one is admitted for is magnified by the emergency itself. Whether you drive them, or they are transported the experience is not one they can process. From gurneys to men in uniform, to people in white coats—all of these things and images can be interpreted with a fight or flight response.
Most of us have had few experiences with hospitals and those who have, may not have fond memories. Add brain failure to this, and the situation easily becomes unmanageable. Common responses to hospitalization are delusions, defined as the belief that something is occurring that is contradicted by reality. Often delusions are the impetus for fight or flight, with an individual convinced that someone is out to harm them with common procedures like intravenous medications, bedrails and even hospital gowns. Delusions are in fact common for individuals hospitalized regardless of a dementia diagnosis. One study termed the range of delusions as Cognitive Spectrum Disorder (CSD).1 CSD was present in 38.5% of all patients regardless of dementia diagnosis. Of the sample, 16.7% had delirium with no cognitive impairment. Because this study was retrospective, it was shown that individuals with dementia had the longest length of stay and a higher mortality rate one-year post-hospitalization. Sobering realities.
Additional research looking at behaviors related to healthcare utilization adds an interesting perspective. The study links the informant’s distress to an increase in negative behavior from their loved one with dementia which in turn resulted in an increase in healthcare utilization and costs.2 The take-home is that it is our distress as caregivers that magnifies their negative behaviors including delusions.
So how do we navigate hospitalizations? First, we prepare for one before it occurs.
A Hospitalization Supply List:
• Have an up-to-date medication list prepared and accessible.
• Along with this, have a list of those friends, family members and professionals that are a part of your care constellation. These are your go-to people who you can turn to for support, service, direction. If you have a smart phone, mark these as favorites, so that they populate your phone screen quickly in case of emergency.
• Reassuring objects like a favorite book, mp3 with favorite music, favorite puzzle book—anything that will give your loved one comfort
• Snack, paper and pencil, extra cash,
• An extra set of clothes, depends, wipes
Second, and most importantly, your loved one when hospitalized needs 24/7 personalized care. That might be you, might be a paid caregiver, and it might be provided by the hospital. Remember your loved one is already compromised by health changes that are precipitating a hospital visit. The environment, the procedures, the noise, the light all add up to a hostile environment. Which translates to fight or flight for any one of us regardless of brain failure. Your preparedness can cut the stay short and limit the impact.