People living with dementia (PLWD) visit hospitals more frequently than their non-cognitively impaired peers. Surprisingly, however, the vast majority of
hospital staff are not educated about the unique needs of PLWD.
Common symptoms often go unrecognized. Systems are not yet in place to effectively cope with the challenging situations that accompany the diagnoses The Wristband Project, highlighted in this journal, is one innovative way people are working to solve this problem.
Let's say your mother or father, spouse or sibling has mild dementia. They have pneumonia or a bladder infection. Maybe they've become dehydrated or they've fallen and broken a bone. These conditions are the top reasons people with dementia end up in the hospital. But instead of getting better there, a majority of PLWD lose ground, develop new problems, and require more help or new care settings before they are discharged.
Such was the situation with Mary*, who wrote to me last month:
"My 90 year old mother who has Alzheimer's has just moved into a nursing home following a fall four months ago. She is now a wheelchair user and lost a significant amount of weight while in hospital (10kg). While we anticipated the worse, Mum seemed to pick up. She was eating red grapes and this seemed to satisfy her thirst. Combined with Maltesers, Mum got her appetite back, began eating again, and feeding herself using a fork or spoon!
"After five days of being at the nursing home (Mum showing an improvement cognitively), we were told that Risperidone had been prescribed to relieve the hallucinations and modify her behavior as she lashed out during intimate care routines. Since then, we have noticed a great change in our mum. She appears to be distant, cannot hold a fork or spoon, and today she struggled to drink. The nursing staff report that she is sleeping during the night and is more compliant during care however I am concerned for my mum's well-being. Can you offer any advice or reassurance in this matter please?"
Mary's story is all too common.
In one study, PLWD who were in the hospital for a hip fracture repair, were given only a quarter of the pain medication given to their counterparts without a dementia diagnosis, but three times the antipsychotic medication.
The problem? Most hospital staff don't know how to accurately identify and manage the pain behaviors of PLWD, so they conclude that patients are delirious or psychotic and try to manage those symptoms.
Here's an excerpt of my reply to Mary:
"I am so sorry to hear about the negative changes with your mom after the bright and positive change that followed the hospitalization.
The culprit is very likely the Risperidone. It is not recommended for elders with dementia because of the very side effect you are noticing.
It has extrapyramidal toxicity for many people. It can actually cause somnolence, inability to move, problems with swallowing, and even responding to any stimuli, if it gets bad enough. It is one of the atypical anti-psychotics.
It is not a good idea to use it to control her distress behaviors during care, unless all other means of interacting, helping and offering other support are tried first and documented.
You can ask to have the medication decreased or stopped. There has been great effort at the federal and national level to help reduce the overmedication of PLWD but it is still a big problem. Hospital staff need more education and support to know how to help without the use of medications!"
What can you do if you find yourself in a similar situation to Mary's?
- Plan for the future now.
- Gather information early. I recommend this article: Hospitalization Happens -- A Guide to Hospital Visits for Individuals with Memory Loss.
- Have frank discussions while the dementia is still mild. Talk about advance care directives and desires. What treatment options does the person want to consider? For example, when should curative medical treatment be replaced by palliative care?
- Decide in advance what to bring to the hospital.
- Upon arrival at the hospital, provide information to the emergency department and admitting staff on the history and current status of the patient. An assessment to determine their background and their current abilities is critical. Hospital staff should seek information from multiple sources about any recent changes in abilities and circumstances. Use this information to implement a plan for the hospital stay, and include discharge options that provide support and care.
- In the hospital, see that special accommodations are made. For example, patients will need support, based on their abilities, with personal care and meals. Due to limits in communication and comprehension ability they may need help with call systems or with filling their free time. Surprises should be minimized and comfort measures tailored to the individual. People living with later stages of dementia often engage in repetitive activities such as clapping, calling out, getting up and down to both express pain or distress and to calm themselves. Each person should have a plan of care developed to address these issues.
Mary remains involved in her mother's care. She sent this follow up:
"We (my sister and I) met with the senior nurse who tried to reassure us that the drug was having a positive effect with regards to sleep at night. We were told the swallowing concern was ultimately going to happen so there was no way of preventing that in the long term. We insisted with a review and, today I met with a doctor who listened to my concerns. She has agreed to stop the Risperidone and to try a sleeping tablet to help with sleep."
As I told Mary, it is hard standing up to authority figures who maintain, "This is for the best." I'm so proud she and her sister stuck to their point. They caught this quickly, pushed for change, and found a doctor willing to listen and respond.
By preparing in advance and remaining involved, family members can improve hospital care for PLWD.
Additional Resources:
*Positive Approach has permission to use this correspondence. "Mary" is a pseudonym.
