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Hospitalization and Dementia:
The Role of the Caregiver
By Sandra O’Connell

(Page 2 of 4)

1.  Provide coverage 24x7; do not leave the person alone, even (especially) at night. 
The hospital routine runs 24x7, and as anyone who has ever been hospitalized knows--does not respect sleep or night time hours.  Ask for the rules for overnight visitors and if needed, have the doctor write an order that allows you to have someone with the patient at all times.  Some families hire a caregiver to cover the night shift for them; others rotate the responsibility among siblings or a few close friends.  I planned coverage for the early evening so that I could go home to eat dinner, nap and shower; then I was prepared to sleep in the hospital room right next to his bed.  Remember the patient is already in a world he or she cannot manage; now he or she is in an alien environment with strangely garbed creatures who glide in and out of the room at all hours. 
2.  The person with Alzheimer’s Disease or related dementia needs an advocate at all times.  
Every common hospital routine such as drawing blood, hooking up an IV, going to the bathroom, or being transferred to go for an X-ray is bewildering to the person with dementia and may result in anxiety driven behavior.  Pulling out the IV, getting out of bed with a catheter inserted, or refusal to cooperate with treatment may result. Toileting is a challenge in the hospital as there may be a catheter or an IV that involves special care.  A person with Alzheimer’s is not going to remember that he or she needs help to get out of bed. This can result in falls, torn IVs, and urinary tract infections. During one hospitalization, a technician insisted on doing a test that I had not discussed with my husband’s doctors.  Only my staunch refusal persuaded the person to leave.  As it turned out, she was in the wrong room.  Incidents like these may happen during a hospital stay. An advocate who is able to talk with staff and solve problems should be ever-present.  If you are fortunate enough to have others helping you as a patient advocate, be sure to leave the records and doctors’ names with them.
3.  Do not assume that the staff understands the realities of caring for someone with dementia, much less the specifics of your loved one.
The call button, the device that alerts the staff to come to the room, is useless to a person with dementia.  A nurse carefully explained to my husband how to use the call button if he needed anything. He smiled his charming smile and nodded, but did not understand.  When I used the button to ask for help to take him to the bathroom, a disembodied voice came from the headboard asking what he needed. I realized then that he would not be able to connect the need for help with the voice, much less articulate that he had to go to the bathroom. Learning to use a call button is typically beyond the learning of anyone with dementia, except in the earliest stage.  An advocate has to be there to interpret your loved one’s needs and to actively get help.


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