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Advanced Preparedness

• Have an "Emergency Bag" prepared for your trip to the hospital that includes items like over-the-counter pain medication, sealed snacks and bottled water. Click here for a checklist of items to include in an "Emergency Bag."
• With Alzheimer's disease and related dementias, it is wise to accept that hospitalization is a "when" and not an "if" event. Due to the nature of the disease, it is very probable that, at some point, the person you are caring for will be hospitalized. Medical facilities are not typically well designed for those with dementia and advance planning and preparation can make all the difference.

At the Emergency Room

• Be patient. It could be a long wait if the reason for your visit is not life-threatening.
• Recognize that results from lab tests take time.
• Offer physical and emotional comfort and verbal reassurance to your relative. Stay calm and positive. How you are feeling will get absorbed by others.
• Realize that just because you do not see staff at work, does not mean they are not working.
• Be aware that emergency room staff often have limited training in Alzheimer's disease and related dementias so try to help them better understand your care partner.
• Encourage hospital staff to see your relative as an individual and not just another patient with dementia who is confused and disoriented from the disease.
• Do not assume your care partner will be admitted to the hospital.
• Do not leave the emergency room to go home without a follow-up plan. If you are sent home, make sure you have all instructions for follow-up care.

Advance Preparation for a Hospital Stay

• Ask your doctor if the procedure can be done as an outpatient visit. If not, ask if tests can be done before going to the hospital to shorten the hospital stay.
• Ask if your doctor plans to talk with other doctors. If so, find out if your care partner can see these specialists before going into the hospital.
• Ask questions about anesthesia, catheters, and IV's. General anesthesia can have side effects. Ask if local anesthesia is an option and ask to be allowed in the recovery room.
• Insist that regular Alzheimer's medications be continued throughout the hospital stay unless contraindicated. Discourage stopping cholinesterase inhibitors (Aricept, Exelon, Razadyne).
• Build a "team" for care and support during a hospital stay. Develop roles for each person (spokesperson, hands-on caregivers, comfort people, home and personal affairs manager, communication center person). Do not try to do it alone.
• Before your hospital visit, prepare a list of questions and concerns for your doctor.

Right Before Going to the Hospital:

• If your insurance allows, ask if a private room is available. It will be more quiet and calm. Request a reclining chair or bed for you or a companion/respite provider.
• Shortly before going to the hospital, decide the best way to tell your care partner that the two of you are going to spend a short time in the hospital.
• Involve your care partner in the planning process as much as possible.
• Do not talk about the hospital stay in front of your care partner as if he or she is not there. This can be upsetting and embarrassing to your relative.
• Plan ahead. Make a schedule with family, friends and/or a professional respite care provider to take turns staying with your care partner while in the hospital. This is particularly important if your relative needs continuous supervision.
• Pack comfort items. Pack things to help your care partner feel safe and secure such as favorite clothes, blankets and/or photos.

During the Hospital Stay:

• Ask the hospital staff to avoid using physical restraints.
• Have a family member, trusted friend, or hired caregiver with your care partner at all times if possible - even during medical tests. This may be hard to do, but it will help keep your care partner calm and less frightened, making the hospital stay easier.
• Use a "telephone tree" to keep others posted of progress. This can greatly reduce stress and make sure that you do not receive calls just as you get your care partner settled down. You may need to turn the "ringer" on the phone down or off during rest times.
• Ask doctors to limit the questions directed to your relative who may not be able to answer accurately. Instead, arrange to answer questions from the doctor in private, outside your care partner's room.
• Modify the hospital room for best performance.
• Help your relative fill out menu requests. Open food containers and remove trays. Assist with eating as needed.
• Remind your care partner to drink fluids. Offer fluids regularly and have him or her make frequent trips to the bathroom.
• Assume your care partner will experience difficulty finding the bathroom and/or using a call button, bed adjustment buttons or the phone.
• Communicate with your care partner in the way he or she will best understand or respond.
• Recognize that an unfamiliar place, medicines, invasive tests and surgery will make a person with dementia more confused. Your relative will likely need more assistance with personal care activities.
• Take deep breaths and scheduled breaks for yourself!
• Be aware of acute or sudden confusion or delirium which can be caused by serious medical problems such as fever, infection, medications and/or dehydration. Inform the doctor as soon as possible if your care partner seems suddenly worse or different. Make sure you advocate for the person you are caring for. Others may not recognize the difference in your relative's condition.
• Give your care partner something to hold such as a book, photos or a favorite comfort item.

If Anxiety or Agitation Occurs:

• Remove personal clothes from sight.
• Post reminders or cues if this comforts your care partner.
• Turn off the television, telephone ringer and intercom. Minimize background noise to prevent overstimulation.
• Talk in a calm voice and offer reassurance. Repeat answers to questions when needed.
• Provide a comforting touch or distract your care partner with offers of snacks and beverages.
• Consider "unexpressed pain" (i.e., furrowed brow, clenched teeth or fists, kicking). Assume your relative has pain if the condition or procedure is normally associated with pain. Ask for pain evaluation and treatment every four hours without your care partner having to ask for it - especially if he or she has labored breathing, loud moaning, crying or grimacing or if you are unable to console or distract your care partner.
• Listen to soothing music or try comforting rituals such as reading, praying, singing or reminiscing.
• Slow down, try not to rush your care partner.
• Avoid talking about subjects or events that may upset your care partner.

Working with Hospital Staff

• Make a personal information sheet easy to read with headings and short, simple statements. Place a copy with the chart, in the hospital room and at the nurse's station.
• With the hospital staff, decide who will do what for your care partner. For example, you may want to be the one who provides assistance with bathing, eating or using the bathroom.
• Inform the staff about any hearing difficulties and/or other communication problems your relative may experience and offer ideas for what works best in those instances.
• Make sure your care partner is safe. Tell the staff about any previous issues with wandering, getting lost, falls, suspiciousness and/or delusional behavior.
• Not assume the staff knows your care partner's needs. Inform them in a polite, calm manner.
• Ask questions when you do not understand certain hospital procedures and tests or when you have any concerns. Do not be afraid to be an advocate for your relative.
• Plan early for discharge. Ask the hospital discharge planner about eligibility for home health services, equipment or other long term care options. Prepare for an increased level of caregiving.
• Realize that hospital staff are providing care for many people. Practice the art of patience.

Source: National Institute on Aging
Reviewed by Dr. Boaz Ancselovic, MD, Geriatrician, Alzheimer's Weekly
Edited By Peter Berger, Alzheimer's Weekly

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