Hospital Experiences for People with Dementia: We Can Do Better

I recently spent a few days in the hospital caring for a relative who had surgery. I could not help but reflect on the impact that the impersonal, noisy, hectic environment would have on an older person with dementia. Just a few of our experiences:
• A lot of “hurry and wait” episodes before and after surgery
• Repetitive questions from many staff members even I could not identify
• Hospital employees discussing expectations for what was to come regarding pain, therapy, tubes, medications, diet and preparation for transfer to home, all in one sentence
• Repeated requests for assistance left unanswered for long periods of time
• Promises of meetings at specific times with therapists, doctors, nurses, discharge personnel – all of which never seemed to happen as scheduled.

Despite weeks of planning before the surgery, discharge arrangements fell apart an hour before discharge. Suddenly, the therapy company was not approved, the pharmacy did not have the medication in stock and the “patient” was left to fend for herself.

It took both of us – younger, cognitively intact, and both experienced health care executives – to execute this discharge, and still we found a need to rely on my relative’s friends and colleagues to assist us.

So, what happens to people with dementia who go through this?

Folks with dementia, sick and hospitalized, don’t understand what is being said, can’t answer questions, and will not be able to describe their level of pain on a scale of “1-10.” Those with cognitive impairment cannot follow directions, arrange for discharge, or follow up with all that is necessary after surgery. Even if they have a caregiver, the task of making the many additional arrangements for a successful transition out of the hospital environment is overwhelming and exhausting.

Patients with dementia or Alzheimer’s disease will probably be in a great deal of pain and hence act out, which is time consuming and complicates the care provided by the medical professionals. This patient will likely be discharged quickly and leave having lost weight, on more medications, in need of therapy…and unfortunately, odds are they will end up in an Emergency Room.

A few times I took the initiative to ask hospital personnel, “What would you do if this person had dementia?” The response in all cases was, “I don’t know, get them a sitter at the hospital and hope for the best.”

We must think about the impact of this difficult situation for individuals with dementia and their families. Hospitalization is difficult enough when you have no voice; it can be catastrophic and costly. We can do better, if only we took the time to try.

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