Hospitalization and Dementia: The Role of the Caregiver

Inevitable as the progression of the disease itself, hospitalization will happen to a person with Alzheimer's disease or related dementia. Physical problems increase with age; studies show that one-third of the people discharged from the hospital are 65 or older.

With a diagnosis of Alzheimer's disease, the chance of hospitalization increases dramatically. Older individuals are more likely to have multiple conditions and weak immune systems. Whether a planned stay or the result of an emergency, the caregiver needs to be prepared to manage a stay in the hospital. Hospitalization is disruptive and frightening for everyone; for someone with Alzheimer’s, the hospital is, indeed, a scary place.

You might assume that a hospital staffed by healthcare professionals is a safe environment. Unexpectedly, the hospital requires more vigilance and special skills by the caregiver. The very nature of a hospital and the needs of a person with dementia are not highly compatible.

Hospitalization requires even more care than normal from the family; the following guidelines should help you to prepare for and survive a hospital stay. They are derived from my personal experience during 14 years of caregiving for my husband that included three hospitalizations, two stays in rehab nursing homes and seven trips to the emergency room. My experience is supplemented with that of my Alzheimer’s support group and the current literature.

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.

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.

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.

Fortunately, this situation is starting to change. An article in the American Journal of Nursing described how to recognize dementia in the hospital setting and the impact it has on treatment. “Hospital patients with dementia as compared with other hospital patients experience higher rates of delirium, falls, new incontinence, pressure ulcers, untreated pain...inadequate food and fluid intake, and sleep disturbances.”

Keep a written record of all medical information.

The hospital thrives on records; be ready to provide all the information they need – repeatedly. Keep a list of medications, dosage levels, doctors’ names and phone numbers, past hospitalizations, and current conditions. Your documents help to insure that accurate information is in the records. Realize that each time medical information is transferred, the possibility for error increases. When going from the emergency room to a regular bed, coming from a nursing home to the hospital, whatever the route, verify each time that the medical record is correct. After an illness that involved three transfers and several doctors, I found five errors in my husband’s medication records. One of the advantages of an advocate is that you are there 24x7, so it is likely you will be there when the doctors make rounds. Take notes with each visit, as most likely you will need to coordinate issues among various specialists. This is a critical aspect of the caregiver-advocate role. Keep track of questions as they arise and have your notes available when the doctor arrives, which may be at 7 a.m. or 10 p.m. or anytime in between.

Personalize and manage the hospital environment.

Routine and familiar surroundings are essential to a person with dementia struggling to make sense out of a strange place. The first request should be for a private room; another patient in the room will be incredibly distracting and difficult. Look for ways to personalize the space and provide comfort to your loved one. Bring in a favorite coverlet or pillow, tape large photos on the wall or cabinet; ask if you may provide a drink or food that Mom especially likes. With hospitalization, families may find an outpouring of concern which may result in a lot of visitors. Given the already confusing surroundings, experts recommend limiting visitors. Let people know that your loved one will rest and heal best with quiet and calm.    

Since you are staying in the hospital for possibly days or weeks, pack your own bag with maintenance and comfort items which may include: lots of change for the vending machines, toothbrush, reading material, comfortable pillow, change of clothes, water, and snacks. Do remember that hospitals limit the use of cell phones to areas where they will not interfere with equipment.

Take time to get to know the nursing staff. 

Many hospitals will be grateful for your ongoing presence as it can make their job easier. Help the staff to understand your loved one's preferences—limits as well as capabilities. Be direct about the person’s abilities and limitations and identify any specific needs.     

“Dad will try to remove the IV, so please put extra tape over the needle.” 

“My uncle likes cranberry juice rather than apple juice."

"Mom will need to eat more than applesauce before she takes her meds."  

Be respectful of the times for bathing, medication, and other hospital routines. Of course, just as you get one nurse familiar with your situation, the shift for the week will change and you start all over. Bring a treat or flowers now and then for the nursing station. Show your appreciation and acknowledge the job they are doing.

As a caregiver for a person with Alzheimer's disease, recognize that a trip to the hospital is highly likely. Prepare in advance as much as possible; have the medical records up to date, be ready with a family member or back-up caregiver who can be an advocate, and pack your bag as you are the constant in your loved one’s care.

Highly Recommended Reading: Acute Hospitalization and Alzheimer's Disease: A Special Kind of Care,