Managing Medical Care for a Person with Alzheimer’s / Dementia

Common Medical Problems to Watch for

Fever

Having a fever means that the person’s temperature is 2 degrees or more above his or her normal temperature.

A fever may be a sign of:

  • Infection, caused by germs
  • Dehydration, caused by a lack of fluids
  • Heat stroke
  • Constipation

Don’t use a glass thermometer because the person might bite down on the glass. Use a digital thermometer, which you can buy at a grocery store or drugstore. Call the doctor right away if the person with Alzheimer’s disease has a fever.

Flu and Pneumonia

These diseases spread quickly from one person to another, and people with Alzheimer’s are more likely to get them. Make sure that the person gets a flu shot each year and a pneumonia shot once after age 65. Some older people need to get more than one pneumonia vaccine. The shots lower the chances that the person will get the flu or pneumonia.

Flu and pneumonia may cause:

  • Fever (Not everyone with pneumonia has a fever.)
  • Chills
  • Aches and pains
  • Vomiting
  • Coughing
  • Trouble breathing

Falls

As Alzheimer’s disease gets worse, the person may have trouble walking and keeping his or her balance. He or she also may have changes in depth perception, which is the ability to understand distances. For example, someone with Alzheimer’s may try to step down when walking from a carpeted to a tile floor. This puts him or her at risk for falls.

To reduce the chance of a fall:

  • Clean up clutter.
  • Remove throw rugs.
  • Use chairs with arms.
  • Put grab bars in the bathroom.
  • Use good lighting.
  • Make sure the person wears sturdy shoes with good traction.

Dehydration

Our bodies must have a certain amount of water to work well. If a person is sick or doesn’t drink enough fluid, he or she may become dehydrated.

Signs of dehydration to look for include:

  • Dry mouth
  • Dizziness
  • Hallucinations (Don’t forget that hallucinations may be caused by Alzheimer’s itself.)
  • Rapid heart rate

Be aware of how much fluid the person is drinking. This is even more important during hot weather or in homes without air conditioning. Also, look for signs of dehydration during the winter months when heat in your home can create a lot of dry air.

Constipation

People can have constipation—trouble having a bowel movement—when they:

  • Change what they eat
  • Take certain medicines, including Namenda®
  • Get less exercise than usual
  • Drink less fluid than usual

Try to get the person to drink at least 6 glasses of liquid a day.

Besides water, other good sources of liquid include:

  • Juice, especially prune juice
  • Gelatin, such as Jell-O®
  • Soup
  • Milk or melted ice cream
  • Decaffeinated coffee and tea
  • Liquid cereal, such as Cream of Wheat®

Have the person eat foods high in fiber. Foods like dried apricots, raisins, or prunes; some dry cereals; or soybeans might help ease constipation.

If possible, make sure that the person gets some exercise each day, such as walking. Call the doctor if you notice a change in the person’s bowel habits.

Diarrhea

Some medicines, including Alzheimer’s medications, may cause diarrhea—loose bowel movements. Certain medical problems also may cause diarrhea. Make sure the person takes in lots of fluids when he or she has diarrhea. Also, be sure to let the doctor know about this problem.

Incontinence

Incontinence means a person can’t control his or her bladder and/or bowels. This may happen at any stage of Alzheimer’s disease, but it is more often a problem in the later stages.  Signs of this problem are leaking urine, problems emptying the bladder, and soiled underwear and bed sheets. Be sure to let the doctor know if this happens. He or she may be able to treat the cause of the problem.

Here are some examples of things that can be treated:

  • Urinary tract infection
  • Enlarged prostate gland
  • Too little fluid in the body (dehydration)
  • Diabetes that isn’t being treated
  • Taking too many water pills
  • Drinking too much caffeine
  • Taking medicines that make it hard to hold urine

When you talk to the doctor, be ready to answer the following questions:

  • What medicines is the person taking?
  • Does the person leak urine when he or she laughs, coughs, or lifts something?
  • Does the person urinate often?
  • Can the person get to the bathroom in time?
  • Is the person urinating in places other than the bathroom?
  • Is the person soiling his or her clothes or bed sheets each night?
  • Do these problems happen each day or once in a while?

Here are some ways you can deal with incontinence:

  • Remind the person to go to the bathroom every 2 to 3 hours.
  • Show him or her the way to the bathroom, or take him or her.
  • Make sure that the person wears loose, comfortable clothing that is easy to remove.
  • Limit fluids after 6 p.m. if problems happen at night. Do not give the person fluids with caffeine, such as coffee or tea.
  • Give the person fresh fruit before bedtime instead of fluids if he or she is thirsty.
  • Mark the bathroom door with a big sign that reads “Toilet” or “Bathroom.”
  • Use a stable toilet seat that is at a good height. Using a colorful toilet seat may help the person identify the toilet. You can buy raised toilet seats at medical supply stores.
  • Help the person when he or she needs to use a public bathroom. This may mean going into the stall with the person or using a family or private bathroom.

Accidents happen. Be understanding when they occur. Stay calm and reassure the person if he or she is upset.

Incontinence supplies, such as adult disposable briefs or underwear, bed protectors, and waterproof mattress covers, may be helpful. You can buy these items at drugstores and medical supply stores. A drainable pouch may be useful for the person who can’t control his or her bowel movements. Talk to a nurse about how to use this product.

Some people find it helpful to keep a record of how much food and fluid the person takes in and how often he or she goes to the bathroom. You can use this information to make a schedule of when he or she needs to go to the bathroom.

Dental Problems

As Alzheimer’s disease gets worse, people need help taking care of their teeth and dentures.

Check the person’s mouth for any problems such as:

  • Sores
  • Decayed teeth
  • Food “pocketed” in the cheek or on the roof of the mouth
  • Lumps

Be sure to take the person for dental checkups. Some people need medicine to calm them before they can see the dentist.

Other Medical Problems

People with Alzheimer’s can have the same medical problems as many older adults. Research suggests that some of these medical problems may be related to Alzheimer’s disease.

For example, some heart and blood circulation problems, stroke, and diabetes are more common in people who have Alzheimer’s than in the general population. Diseases caused by infections also are common.

Visiting the Doctor

It’s important that the person with Alzheimer’s gets regular medical care. Make sure the person sees a health professional on a regular basis. This is the best thing you can do to help prevent medical problems.

Here are some tips to help you get ready for a visit to the doctor’s office:

  • Make an appointment during the person’s best time of day and when the office is not very crowded.
  • Let the office staff know before the visit about the person’s Alzheimer’s disease. Ask them for help to make the visit go smoothly.
  • Don’t tell the person with Alzheimer’s about the visit until the day of the visit or even right before it is time to go if visiting the doctor makes the person nervous. Be positive and matter of fact.
  • Take something he or she likes to eat or drink and any materials or activities the person enjoys.

Going to the Hospital: Tips for Alzheimer’s / Dementia Caregivers

A trip to the hospital can be stressful for people with Alzheimer’s disease or dementia and their caregivers. Being prepared for emergency and planned hospital visits can relieve some of that stress. This article suggests ways to help you prepare and tips for making your visit to the emergency room or hospital easier.

Hospital Emergencies: What You Can Do

A trip to the emergency room (ER) can tire and frighten a person with Alzheimer’s or other dementia. Here are some ways to cope:

  • Ask a friend or family member to go with you or meet you in the ER. He or she can stay with the person while you answer questions.
  • Be ready to explain the symptoms and events leading up to the ER visit—possibly more than once to different staff members.
  • Tell ER staff that the person has Alzheimer’s or dementia. Explain how best to talk with the person.
  • Comfort the person. Stay calm and positive. How you are feeling will get absorbed by others.
  • Be patient. It could be a long wait if the reason for your visit is not life-threatening.
  • Recognize that results from the lab take time.
  • Realize that just because you do not see staff at work does not mean they are not working.
  • Be aware that emergency room staff have limited training in Alzheimer’s disease and related dementias, so try to help them better understand the person.
  • Encourage hospital staff to see the person as an individual and not just another patient with dementia who is confused and disoriented from the disease.
  • Do not assume the person will be admitted to the hospital.
  • If the person must stay overnight in the hospital, try to have a friend or family member stay with him or her.

2 people holding hands in a hospital bed

Do not leave the emergency room without a plan. If you are sent home, make sure you understand all instructions for follow-up care.

What to Pack

An emergency bag with the following items, packed ahead of time, can make a visit to the ER go more smoothly:

  • Health insurance cards
  • Lists of current medical conditions, medicines being taken, and allergies
  • Healthcare providers’ names and phone numbers
  • Copies of healthcare advance directives (documents that spell out a patient’s wishes for end-of-life care)
  • “Personal information sheet” stating the person’s preferred name and language; contact information for key family members and friends; need for glasses, dentures, or hearing aids; behaviors of concern; how the person communicates needs and expresses emotions; and living situation
  • Snacks and bottles of water
  • Incontinence briefs, if usually worn, moist wipes, and plastic bags
  • Comforting objects or music player with earphones
  • A change of clothing, toiletries, and personal medications for yourself
  • Pain medicine, such as ibuprofen, acetaminophen, or aspirin—a trip to the emergency room may take longer than you think, and stress can lead to a headache or other symptoms
  • A pad of paper and pen to write down information and directions given to you by hospital staff
  • A small amount of cash
  • A note on the outside of the emergency bag to remind you to take your cell phone and charger with you

By taking these steps in advance, you can reduce the stress and confusion that often accompany a hospital visit, particularly if the visit is an unplanned trip to the emergency room.

Before a Planned Hospital Stay

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. Keep in mind that hospitals are not typically well-designed for patients with dementia. Preparation can make all the difference. Here are some tips.

  • Think about and discuss hospitalization before it happens, and as the disease and associated memory loss progress. Hospitalization is a choice. Talk about when hospice may be a better and more appropriate alternative.
  • Build a care team of family, friends, and/or professional caregivers to support the person during the hospital stay. Do not try to do it all alone.
  • Ask the doctor if the procedure can be done during an outpatient visit. If not, ask if tests can be done before admission to the hospital to shorten the hospital stay.
  • Ask questions about anesthesia, catheters, and IVs. General anesthesia can have side effects, so see if local anesthesia is an option.
  • Ask if regular medications can be continued during the hospital stay.
  • Ask for a private room, with a reclining chair or bed, if insurance will cover it. It will be calmer than a shared room.
  • Involve the person with dementia in the planning process as much as possible.
  • Do not talk about the hospital stay in front of the person as if he or she is not there. This can be upsetting and embarrassing.
  • Shortly before leaving home, tell the person with dementia that the two of you are going to spend a short time in the hospital.

During the Hospital Stay

While the person with dementia is in the hospital:

  • Ask doctors to limit questions to the person, who may not be able to answer accurately. Instead, talk with the doctor in private, outside the person’s room.
  • Help hospital staff understand the person’s normal functioning and behavior. Ask them to avoid using physical restraints or medications to control behaviors.
  • Have a family member, trusted friend, or hired caregiver stay with the person with Alzheimer’s at all times if possible—even during medical tests. This may be hard to do, but it will help keep the person calm and less frightened, making the hospital stay easier.
  • Tell the doctor immediately if the person seems suddenly worse or different. Medical problems such as fever, infection, medication side effects, and dehydration can cause delirium, a state of extreme confusion and disorientation.
  • Ask friends and family to make calls, or use email or online tools to keep others informed about the person’s progress.
  • Help the person fill out menu requests. Open food containers and remove trays. Assist with eating as needed.
  • Remind the person to drink fluids. Offer fluids regularly and have him or her make frequent trips to the bathroom.
  • Assume the person will experience difficulty finding the bathroom and/or using a call button, bed adjustment buttons, or the phone.
  • Communicate with the person in the way he or she will best understand and respond.
  • Recognize that an unfamiliar place, medicines, invasive tests, and surgery will make a person with dementia more confused. He or she will likely need more assistance with personal care.
  • Take deep breaths and schedule breaks for yourself!

If anxiety or agitation occurs, try the following:

  • Remove personal clothes from sight; they may remind the person of getting dressed and going home.
  • Post reminders or cues, like a sign labeling the bathroom door, if this comforts the person.
  • 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 the person with offers of snacks and beverages.
  • Consider “unexpressed pain” (i.e., furrowed brow, clenched teeth or fists, kicking). Assume the person has pain if the condition or procedure is normally associated with pain. Ask for pain evaluation and treatment every 4 hours—especially if the person has labored breathing, loud moaning, crying or grimacing, or if you are unable to console or distract him or her.
  • Listen to soothing music or try comforting rituals, such as reading, praying, singing, or reminiscing.
  • Slow down; try not to rush the person.
  • Avoid talking about subjects or events that may upset the person.

Working with Hospital Staff

Remember that not everyone in the hospital knows the same basic facts about memory loss. Alzheimer’s disease, and related dementias. You may need to help teach hospital staff what approach works best with the person with Alzheimer’s, what distresses or upsets him or her, and ways to reduce this distress.

You can help the staff by providing them with a personal information sheet that includes the person’s normal routine, how he or she prefers to be addressed (e.g., Miss Minnie, Dr. James, Jane, Mr. Miller, etc.), personal habits, likes and dislikes, possible behaviors (what might trigger them and how best to respond), and nonverbal signs of pain or discomfort.

Help staff understand what the person’s “baseline” is (prior level of functioning) to help differentiate between dementia and acute confusion or delirium.

You should:

  • Place a copy of the personal information sheet with the chart in the hospital room and at the nurse’s station.
  • With the hospital staff, decide who will do what for the person with Alzheimer’s disease. For example, you may want to be the one who helps with bathing, eating, or using the bathroom.
  • Inform the staff about any hearing difficulties and/or other communication problems, and offer ideas for what works best in those instances.
  • Make sure the person is safe. Tell the staff about any previous issues with wandering, getting lost, falls, suspiciousness and/or delusional behavior.
  • Not assume the staff knows the person’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.
  • 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.

Alzheimer’s Disease: Common Medical Problems

A woman with Alzheimer's and her caregiver talk with a doctor

In addition to the symptoms of Alzheimer’s disease, a person with Alzheimer’s may have other medical problems over time, as all older adults do. These problems can cause more confusion and behavior changes. The person may not be able to tell you what is wrong. As a caregiver, you need to watch for signs of illness and tell the doctor about what you see.

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