SURVIVAL GUIDE TO HOSPITALIZATION

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1 SURVIVAL GUIDE TO HOSPITALIZATION WRITTEN BY MARTINE EHRENCLOU A hospital stay can be frightening, confusing and risky for anyone. But for people with Alzheimer s disease or a related dementia it can be downright dangerous and even deadly. The other reality is that hospitalization is a likely scenario for people with the brain disorder. Individuals with Alzheimer s disease use a disproportionate amount of healthcare resources; for instance, they are hospitalized two to three times as often as people the same age who do not have the disease. Medicare beneficiaries with multiple chronic illnesses, including Alzheimer s disease, see an average of 13 different physicians; fill 50 different prescriptions a year; and are 100 times more likely to have a preventable hospitalization than someone with no chronic conditions. Martinmark Dreamstime.com Reprinted from care ADvantage magazine, a publication of the Alzheimer s Foundation of America

2 A recent Harvard Medical School study published in the Annals of Internal Medicine showed that a hospital stay greatly increases the chances that a person with Alzheimer s disease will enter a nursing home or die within the next year. It also found that about half of the hospitalized patients with dementia developed delirium during their stay, a serious medical condition that causes a sudden and rapid change in symptoms. This predictable but treatable complication of dementia is linked to longer hospital stays, increased nursing home placements, a faster rate of mental decline for up to five years after hospitalization, and death. Obviously, hospitalization is a necessity at times. But given these grim statistics, it is critical to try to take steps to prevent conditions that can land a person with Alzheimer s disease in the hospital or, should an admission be unavoidable, to do whatever is possible to keep someone safe while there. RX 1: PREVENTING HOSPITALIZATION Since individuals with Alzheimer s disease may not be able to communicate discomfort, pain or other symptoms, it is important to be on the alert for signs or behaviors that could indicate an illness. It might be easy to write off a cough or congestion to a simple cold, but these symptoms could be the first signs of influenza or pneumonia for someone with Alzheimer s disease. Better to be safe than sorry by checking these symptoms out immediately either with a phone call or visit to the person s primary care physician. Another critical component of avoiding emergency room visits and hospitalizations is to establish a good relationship with the individual s primary care physician. This includes regular visits. Ideally, the primary care physician knows the person s history, and with routine visits will be more likely to pick up symptoms early on before they have progressed to an urgent stage that could require hospitalization. It is important for caregivers to feel comfortable discussing the person s condition. Coming prepared to the medical appointment with a list of symptoms and other observations, current medications and dosages, and questions can help enable a productive discussion with the medical provider. Coordinated long-term care services can also help reduce incidences of hospitalizations that result from a person s failure to take prescribed medications, injuries from unsafe environments or other avoidable circumstances. According to a recent research study, the three most common causes of hospitalization for people with Alzheimer s disease are bacterial pneumonia, urinary tract infection (UTI), and congestive heart failure, a condition in which the heart cannot pump blood efficiently to meet the body s needs. An earlier study points to fainting and falling, heart disease and gastrointestinal disease as major contributors to hospitalization. And among other reasons, up to 50 percent of individuals with Alzheimer s disease who wander will become seriously injured or die if they are not found within 24 hours. PNEUMONIA Tips to prevent pneumonia: Have the person get pneumonia and influenza vaccines. Why both? Pneumonia combined with influenza is the seventh leading cause of death among people aged 65 and over, according to the Centers for Disease Control and Prevention. Practice good hand hygiene, including washing your hands in warm, soapy water before touching the person. Ensure that the individual has good dental hygiene, including regular dental check-ups, since infections that occur around teeth can lead to pneumonia. Altered mental status, increased confusion or decreased alertness Discomfort or not feeling well Cough Chest pain Fever, chills (Note: older people may or may not have a fever.) Shortness of breath Difficulty swallowing URINARY TRACT INFECTION (UTI) Tips to Prevent UTI: Encourage the person to drink six to eight eight-ounce glasses of water or other preferred non-caffeinated fluid a day. Monitor the amount of fluid intake. Maintain good hygiene, including regular bathing and staying dry. Ensure a clear, clutter-free path to the bathroom.

3 Promote the regular use of the bathroom or planned trips at specific times, especially since people with Alzheimer s disease may not recognize urges or think about using the restroom. Learn the proper cleaning procedures, if applicable, for a Foley catheter, a tube inserted into the bladder to drain urine if a person is incontinent. Fatigue Incontinence Fever Painful, burning urination Foul-smelling urine Cloudy or milky urine Back pain Facial expressions, pulling at clothing Distress, especially during urination Changes in behavior, increased confusion CONGESTIVE HEART FAILURE Tips to prevent congestive heart failure from worsening: Since people diagnosed with this condition are typically on prescription medication, be mindful of the dosage schedule and make sure the medication is actually taken. Discuss lifestyle choices with the person s physician, such as exercising, reducing salt intake, managing stress, treating depression and losing weight. Control contributing risk factors, such as high blood pressure, high cholesterol, diabetes or obesity. Talk with the person s physician about a treatment plan. Shortness of breath Fatigue, weakness Rapid or irregular heartbeat Swelling in legs, ankles, feet or abdomen Persistent cough or wheezing Lack of appetite, nausea Decreased alertness Chest pain FALLS Tips to prevent falls: Monitor the effects of medications. For instance, psychoactive medications may result in increased confusion, falls and mortality. Have the person do physical activity with the doctor s approval, such as walking and gentle exercise. Make sure the person wears shoes that fit well, are sturdy and have nonskid soles. Ensure that staircases and hallways are free of clutter. Fix or remove dangerous items around a person s home, such as movable furniture that someone may wrongly rely on for support, chairs that blend in with the walls behind them, scatter rugs, loose or broken steps or handrails, and dangling extension cords and telephone wires. Maintain uniform lighting levels. A person with dementia may have difficulty adjusting to stark changes in lighting, which can lead to temporary loss of vision and promote confusion. Install solid color carpets or other floor coverings since patterned designs can interfere with depth perception and balance. If the person has experienced increased falls, make an appointment with a primary care physician. Prepare for the appointment with the following: Write down the details of the falls, including how and when they occurred, and, if applicable, increased frequency. Bring a list of prescription medications and dosages, over-the-counter medications, supplements and allergies to medications. Review this with the doctor, with an eye toward eliminating or adjusting dosages of those that may be causing drowsiness, dizziness or low blood pressure. Ask that the person s blood pressure be checked on a regular basis. Discuss whether other factors may be contributing to falls, such as dehydration, pneumonia, a UTI, joint pain, numbness, balance or walking style. As Alzheimer s disease progresses, the responsibility to help prevent these conditions increasingly shifts away from the person with the disorder to others. A watchful eye, care coordination and best efforts among family caregivers, professional caregivers and healthcare providers can be just the prescription to help sidestep hospitalization. Timurock Dreamstime.com

4 RX 2: TOLERATING HOSPITALIZATION The last thing anyone wants if a person with Alzheimer s disease needs to hospitalized is for the stay to be longer, more involved, more aggravating to symptoms of the brain disorder, or more lifethreatening than anticipated. What are some of the potential triggers for these complications? Someone with Alzheimer s disease might have multiple medical issues, requiring the involvement of several specialists and causing a situation that is confusing and difficult to coordinate. In addition, new medications introduced during a hospital stay can lead to adverse side effects. A person with Alzheimer s disease is vulnerable to the onset of stress and delirium in an emergency room or hospital room setting. Older adults, especially if they are disoriented or sedated, are at risk for falls a leading cause of death. Lastly, malnutrition, dehydration, infections, bed sores (decubitus ulcers) or depression can slow recovery. While some problems cannot be avoided, there are steps you can take to help safeguard a hospitalized person with dementia and better manage the patient s stay: 1. Strive to ensure a smooth transition between care settings, such as moving from the home or skilled nursing facility to a hospital. Recognize the stressfulness of this situation and the person s special needs, due to poor communication, confusion or behavior issues; and try to provide emotional comfort and reassurance. 2. Supply hospital personnel with the person s relevant medical records, medical and family history, and legal documents that convey end-oflife wishes. 3. Bring a list of the individual s current medications and dosages, over-the-counter medications, supplements and allergies and make sure this is included in the patient s chart. 4. Stay informed. Ask questions about the person s care plan, including treatments, procedures and expected outcomes. 5. Get to know attending nurses and doctors. Try to be present during doctors rounds to have face-toface interactions with the patient s medical professionals.

5 6. Humanize the person to the medical professionals, so the person is not seen as the shoulder surgery in room number Stay with the patient, especially if the person has impaired communication skills, lack of judgment and confusion. The best scenario, although it can be challenging, is to continually have a middle person there as a go-between the patient and healthcare providers. Consider hiring a private aide. 8. Keep a pad and pen handy. Create a list of questions for the doctors and nurses, and write down the answers about the person s diagnosis, treatment plan, tests, health status, etc. so you or other family members can refer to this information later. 9. Watch for, document and bring to a medical professional s attention any sudden changes in Alzheimer s disease symptoms. A sudden onset or rapid worsening of confusion, severe behavior changes or loss of daily functions such as bladder or eating could be delirium. Among precautions, pay attention to new drug therapies, keep track of bodily functions, provide adequate hydration, and increase or decrease environmental stimuli as needed. 10. Prevent falls. If the patient is at risk for falling, try to have someone at the person s bedside at all times. One strategy is to create a team of family members, friends and professional caregivers who take shifts. Have a physical therapist or occupational therapist evaluate the person for safety risks and suggestions. 11. Monitor food for appropriate intake and to comply with dietary restrictions, especially since people with Alzheimer s disease may need assistance with eating and, as a result, risk malnutrition and dehydration. 12. Try to prevent bed sores by monitoring how often the person s body is being turned and ensuring repositioning if he or she is unable to move without help. 13. Decrease the risk of hospital-acquired infectious diseases by insisting that everyone who comes in contact with the patient washes their hands. 14. Bring the person s eyeglasses, hearing aids and other assistive devices, if absolutely necessary, but make sure they are catalogued with hospital personnel. 15. Bring special items from home such as a blanket or photos in order to provide comfort and warm up the hospital room. 16. Provide a clock or wall calendar for the room to help decrease a person s disorientation. 17. Keep the individual mentally stimulated as much as possible (i.e., puzzles, reminiscence activities or photos to look through and talk about). 18. Become familiar with hospital resources if you need additional assistance or if problems arise. Social workers, hospital patient advocates and patientdischarge planners are among the people to have on your side. MARTINE EHRENCLOU, M.A., of Los Angeles, is a patient advocate and award-winning author of Critical Conditions: The Essential Hospital Guide To Get Your Loved One Out Alive and The Take-Charge Patient. A former journalist and public relations professional, she writes a blog and lectures on health care, patient safety, patient advocacy and other health issues.