Several family members have commented here about loved ones who began showing signs of Sundowners when hospitalized, or a loved one who had dementia and perhaps some Sundowning symptoms, which worsened significantly while in the hospital. Unfortunately, older adults in general often suffer negative effects when hospitalized. Numerous medical studies have documented the levels of functional decline in older adults (significant as early as day 2 of being in the hospital) due to limited mobility, medication side effects, infections and more. However, the cognitive and behavioral impacts are less often emphasized.
What are some of the factors that cause an elder with Alzheimer’s or other form of dementia to worsen in the hospital?
- Unfamiliar environment, change of routine, unfamiliar people, noises, etc.
- Medication side effects (as we age, it becomes harder to metabolize medication so the impacts are greater and some medications are very detrimental to people with dementia especially–unfortunately, sometimes the very “anti-psychotic” medications that are given when behavior problems arise)
- Effects of surgeries and procedures, pain and the body’s efforts to heal
- Infections (as patient advocates, we often ask the doctor to order a urinalyses when behavior changes rapidly, as this often indicates an underlying infection, commonly a Urinary Tract Infection)
Hospital delirium is one of the most common hospital complications for elders (read more in this New York Times article on Hospital Delirium), even in those without cognitive problems present beforehand. Now, imagine how this problem is magnified for someone who was already diagnosed with Alzheimer’s disease or suffering cognitive issues.
What can you do as your loved one’s advocate?
- Advanced Care Planning is one of the most important ways you can help your loved one. Work together with your loved one’s medical professionals on how different concerns can be addressed and when hospitalization makes sense or can be avoided. For example, is there a way to treat an issue as an outpatient? Why is a surgery being recommended and what are expected outcomes? When a loved one lives in a care facility, especially, it can be challenging to convince them not to send your loved one to the hospital for things that can often be managed without a call to 911.
- Do things to help ensure you are notified if your loved one goes to the hospital (if he or she lives with you this may not be a problem, but can be especially problematic if you live at a distance). Make sure he or she has a “File (or Vial) of Life” indicating your contact information and that you are listed as an emergency contact to all relevant parties. It will make a significant difference if you can get to the hospital quickly, or communicate with someone there so they understand your loved one’s situation.
- When a loved one is hospitalized, provide round the clock care. Can family members rotate shifts to be there all the time? This can be quite challenging, so you might also consider hired “sitters” or home health aide/certified nursing assistants to assist with some shifts. Make sure they have experience and training in dementia care.
- Ensure the hospital is using geriatric safety precautions in the way they handle your loved one’s care.
- Ask questions and advocate, advocate, and advocate some more. Understand what tests are being done, procedures being recommended, medications being changed and the expected outcomes and timeline. If you cannot be present, consider bringing in a geriatric care manager to be the local advocate. Even if you are present, having a professional patient advocate like a geriatric care manager to consult with may be helpful and many can be brought in for crisis management or one-time services to fit your needs and budget.
I will be posting more advice on this topic, as well as issues like discharge planning and Sundowners Caregiver tips. Please share your story and hints about hospitalization and how it affected your loved one or what you found helped!
You may also find these books helpful: Recommended Reading for Alzheimer’s and Dementia and this article that includes tips as well as a downloadable preparation/packing list Senior Care Advice: Managing a Hospitalization.