Managing a Difficult Hospital Stay

For many people, a visit to the hospital is stressful. For someone with Alzheimer’s disease, it can be frightening. It’s important that families know how they can make hospital stays less daunting for loved ones who have the illness.

The main cause of this problem is the drastic change in environment. Alzheimer’s symptoms often worsen with such a change, so when someone with the disease spends time in the hospital—a busy place with monitors, hallway noises, paging systems, electronic alarms, and unfamiliar people—they can become confused, restless, combative, or withdrawn.

“In this situation, you’re suddenly taking the person out of a very familiar environment and putting them in a place where almost everything is unfamiliar,” says Cindy Barton, RN, MSN, GNP, General Nurse Practitioner at the University of California, San Francisco Memory and Aging Center. “Often the person’s sleep becomes disrupted and pain medications may make them more confused than usual. They might not understand what’s going on and can’t communicate well enough to report their physical symptoms and tell people they’re in pain or they’re scared.”

Family Plays an Essential Role
This situation is also difficult for family members. “Most families that have a loved one with dementia deal with their symptoms by having consistent routines at home,” says Nina Silverberg, Ph.D., Assistant Director of the Alzheimer’s Disease Centers Program at the National Institute on Aging. “For example, the person with Alzheimer’s usually eats meals, takes walks, and rests at the same times every day. During a hospital stay, all of those routines are disrupted. Many hospital staff members don’t have training in how to deal with dementia, so family members have the added responsibility of giving the staff many details about their loved one’s situation. It can be quite a burden on family caregivers.”

Hospital stays can create stress for loved ones with Alzheimer’s disease.
Hospital stays can create stress for loved ones with Alzheimer’s disease.

That burden often continues after a loved one returns home. According to a 2012 study by Harvard researchers, hospital visits can lead to negative outcomes for Alzheimer’s patients. The research followed 771 Alzheimer’s patients who lived at home and found that being hospitalized increased their chances of moving into a nursing home—or even passing away—within the following year. The risk is even higher if the person with Alzheimer’s experiences delirium—an extremely high level of confusion and agitation—during their time in the hospital.

Family members can follow these tips to make their loved one’s hospital visit go more smoothly:

• Ask Questions—At the hospital, don’t be afraid to ask questions for details on the procedures your loved one will be undergoing, the risks and benefits, the expected results, and length of recovery. Ask about how the procedure and hospital stay could affect the patient’s thinking and behavior. If anesthesia or new medications will be administered, find out how they will affect the family member’s level of awareness.

• Stay Close By—“It’s important that family members stay with the person as much as possible,” says Barton. “Their loved one needs them there because they’re probably the only people they recognize and are comfortable with. If possible, create a schedule for family members to spend time with the patient. Try to be in the room when the person wakes up in the morning, when medications are given, when catheters are inserted, and when the doctor stops by.”

• Work with Hospital Staff—Families should partner with the hospital staff to give them as much information as possible about the patient. Provide a personal information sheet that includes your loved one’s typical daily routine, medications, personal care habits, extreme behaviors (and what might trigger them), and their nonverbal signs of pain or discomfort. Tell the staff about hearing difficulties or other communication problems as well as their eating preferences. Ask hospital caregivers to do things that can speed the patient’s recovery such as removing IV tubes, adding nutritious items to their diet, and getting them out of bed for walking.

• Recognize Signs of Discomfort—“Often, people with Alzheimer’s show extreme emotions when they’re suffering from a physical problem such as dehydration, a fever, or urinary tract infection,” says Silverberg. “These conditions can cause pain and in many cases, the person with Alzheimer’s can’t express that. It’s important that family members talk with physicians to find out if there is a physical problem causing these emotions.” Keep in mind signs of suffering such as a furrowed brow, labored breathing, moaning, clenched teeth, kicking, or crying. If you’re unable to console your loved one, ask for pain evaluation and treatment every four hours.

• Create a Post-Hospital Plan—Work with hospital staff to plan long-term care or the person’s return home. Ask these questions: Will the loved one tire more easily as a result of surgery? What medications and dosages should they receive and what are possible side effects? When can the person resume normal activities? Will they be in pain and what can the family do to ease it? If necessary, ask for an in-home nurse, social worker, or care planner for post-hospital care.

• Have Empathy—Try to put yourself in your loved one’s situation. Remember that with Alzheimer’s, a loss of the ability to communicate verbally doesn’t mean a loss of awareness. Most people who have Alzheimer’s are aware of their situation and might feel distressed about it.

“It’s like being a detective,” says Barton.

“Family members should look for clues that tell them why their loved one behaves a certain way and change their environment to make them feel better. The family plays an essential role in effective caregiving. After all, the hospital staff knows how to provide medical treatment, but family members know their loved one better than anyone else.”

Get Connected
The following agencies can provide information about Alzheimer’s disease and connect you with community programs and services:
• Alzheimer’s Disease Education and Referral (ADEAR) Center: 1-800-438-4380 (toll-free) www.nia.nih.gov/alzheimers
• Eldercare Locator: 1-800-677-1116 (toll-free) www.eldercare.gov
• Family Caregiver Alliance: 1-800-445-8106 (toll-free) www.caregiver.org
• Caregiver Action Network: 1-800-896-3650 (toll-free) www.caregiveraction.org
• Fisher Center for Alzheimer’s Research Foundation: 1-800-ALZ-INFO (toll free) www.ALZinfo.org