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Alzheimer's
Disease

Medical Scientific Advisory Committee

Caregiving Tips and Articles

Downloadable Forms and additional information on advance directives, living wills, and health care power of attorney can also be found through the Dorothy Garske Center's site.

 

Home for the Holidays

The Holiday Season starts with Halloween and ends with New Year celebrations. For many families this may be the only time throughout the year where every one is together sharing good food, memories and companionship. Traditionally families travel between each other's homes, hang seasonal decorations and enjoy the chaos of the Holiday!

As certain as the onset of the Holiday Season is the knowledge, for the Alzheimer's Association, that there will be many caregivers, spouses and adult children who find themselves coping with new and puzzling situations when a loved one coping with dementia begins exhibiting unusual behavior or agitation.

The term agitation is used to describe a large group of behaviors associated with Alzheimer's disease. In the early stages of the disease people with Alzheimer's may experience personality changes such as irritability, anxiety, or depression. As the disease progresses other symptoms may occur: sleep disturbances, delusions, hallucinations, pacing, restlessness, checking and re-checking door locks or appliances, tearing tissues, general emotional distress and cursing or threatening language. These additional symptoms can be characterized as agitation.

Agitation may be caused by medical conditions or drug interactions or any environmental circumstances that worsen a persons ability to think.

Situations that might create agitation include moving to a new residence, changes in environment or caregiver arrangements, fear, fatigue and perceived threat from a confusing world. Agitation is disruptive and painful to both the person coping with dementia and their family.

The Holiday Season can exacerbate anxiety for a person with memory loss and therefore caregivers are advised, by the Alzheimer's Association, to carefully consider and plan their Holiday celebrations with family and friends.

To minimize agitation some suggestions for the Holidays are:

  • Prepare your loved one for visitors
  • If possible, show pictures and discuss who is coming.
  • If your loved one has difficulty remembering names consider name tags.
  • Celebrate early in the day to minimize sundowning.
  • Have a quiet area for the person with memory loss to retreat to when things get hectic. Reminisce together about past Holidays.
  • Listen to, or sing, familiar Holiday music.
  • Minimize travel; ask family and friends to come to you. Home for the Holidays!
  • Minimize Holiday decoration that will confuse loved ones.
  • Prepare family members for spending time with your loved one. Suggest activities and communication techniques.

If a loved one with memory loss continues to display symptoms of agitation consider a thorough medical examination. Agitation can reflect an underlying medical condition, pain, or discomfort that the loved one can not express; for example urinary infection, sinus infection, head or back ache.

Agitation is distressing for the loved one and the family, simple planning can help minimize the risk and ensure a Happy Holiday for all!. For more information or Holiday tips call the Chapter Helpline at your Regional Office. Staff and Volunteers will be happy to help and ensure a memorable, joyous, and peaceful Holiday for you and your family.

 

 

 

ACUTE CARE FOR PATIENTS WITH ALZHEIMER'S DISEASE / DEMENTIA
By Walter J. Nieri, M.D.

What can you expect to happen to your family member with Alzheimer's disease if the need arises for them to be hospitalized? Unfortunately, this is not as uncommon as we would like. However, consider former President Reagan, who was recently hospitalized with a fractured hip. Not much was heard about his hospital course, but apparently he did well enough that he was discharged after a relatively short hospital stay. I'm sure he had the top medical team following him during his hospitalization. Unfortunately, this is not always the case, and therefore it's important for you to know some of the potential problems that may occur in patients with Alzheimer's Disease who require hospitalization.

However, before discussing the hospitalized patient, let's look at some of the signs and symptoms that may signal a problem that may lead to hospitalization. Aside from the obvious signs, i.e., fever, shortness of breath, or a fall that is suspicious for a fracture, changes in mental status are important to note. Increased agitation, unusual behavior, i.e., restlessness, pacing, or increased sleepiness may be a warning sign something serious is occurring. This may be secondary to an infection, dehydration, constipation, pain, or a medication reaction. If identified early and the physician is notified, treatment may be instituted and hospitalization prevented.

If the Alzheimer's patient is hospitalized, there are several changes that may occur. Most of the time there is an increase in confusion. This confusion may be accompanied by agitation and occasionally aggressive behavior. Or you might see the opposite where the patient is sleepy and less responsive to the environment. Often this is associated with medication that is prescribed while in the hospital. While all of these are unwanted symptoms, those most disturbing to the family are the agitation and aggressive behavior.

What can we as family, caregivers, or friends do to help alleviate these symptoms? As we all know, changes in environment can be very traumatic for patients with dementia. Keeping in mind that hospitalization is anxiety provoking for anyone, it is magnified in a patient with Alzheimer's disease who is unable to comprehend what is transpiring. The presence of familiar faces during the transition may help to prevent or decrease this anxiety and agitation. In addition, providing assistance with the activities of daily living such as bathing, dressing, toileting, and eating may be better received from familiar faces rather than a continuous flow of new and unfamiliar caregivers. Room selection is important. Rooms that provide a quiet environment are preferential. Request rooms where there is less noise. This would include rooms away from noisy nurses' stations, waiting rooms, busy traffic areas, and where there are fewer people (private room preferable). If private rooms are not available, ask for a room where the roommate is medically stable and has few visitors. If TVs or radios are left on, programs that provide a comforting rather than a violent or loud environment should be played.

Caregiver issues are always an issue in caring for patients with Alzheimer's disease. This is magnified in the hospitals where caregivers do not have the expertise or the time to provide optimum care for patients with dementia. Therefore, families again may assist in performing necessary tasks in a more gentle and less rushed manner. This includes taking the time to communicate slowly what needs to be done.

A small but important factor in reducing agitation is to make sure that the patient has his or her own hearing aids (and that they are on) and glasses if they are worn.

Pain and medication issues are a major contributing factor to agitation and mental status changes. If there is agitation, always consider pain as a possible cause. Often a mild analgesic like Tylenol may be given as a therapeutic trial to see if pain relief lessens the agitation. If the patient is more confused or lethargic and difficult to arise, newly prescribed medication while in the hospital may be contributing. This may be in the form of pain medications (usually narcotics), anti-anxiety medication, or other new medications. Never be afraid to ask the nurses or doctors what medications the patient is taking and whether they may be contributing adversely to his/her current mental state.

Lastly, keeping in mind that patients with dementia are often unable to understand or retain the information given to them by the health care providers, the family, caregivers, and friends must act as advocates for the patient and keep informed about what is occurring during the hospitalization. While this is often the role of the medical power of attorney or closest family member, someone should be designated to be the primary communication link between the patient and their health care providers.

In conclusion, while agitation and mental changes are not always preventable, the suggestions presented should give you some help on how to minimize their occurrence.

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Dr. Walter Nieri specializes in geriatrics and internal medicine. In addition, he is a certified long term care physician. He is the Program Director for the Sun Health/St. Joseph's Geriatric Fellowship Program, Medical Director for the Sun Health Center for Geriatric Medicine, and Medical Director for the Huger Mercy Living Center and Sun Health Residence for Alzheimer's Care.


Holidays and Safety

We all love the Holidays! Halloween, Thanksgiving, Hanukkah and Christmas. It seems that October through the New Year there is always a reason to celebrate! For folks with dementia the holidays might not be as much fun. The noise, people, decorations and changes in routine can increase agitation and disorientation for persons with Alzheimer’s, and we all need to be sensitive to this. Call the Chapter Helpline for useful tips to have a Happy Holiday season with your loved ones.

The hustle and bustle of the season, coupled with the cooler evenings and increased incidence of disorientation create situations conducive to wandering incidents. Taking a few simple precautions can prevent a tragedy during the Holiday season:

  • Register with Safe Return.  Call 602-528-0545 for more information.
  • Keep a recent photograph of your loved one close by the telephone.
  • Remind neighbors, friends and family of your loved ones dementia. Ask them to be alert to potential wandering behavior and to be sensitive to increased risk of disorientation.
  • Keep to regular schedules, including safety routines such as securing dangerous household items and doors.
  • Keep Holiday decorations simple.
  • Ask friends, family and neighbors to visit you rather than trying to travel to unfamiliar areas and homes which may upset your loved one.
  • Be vigilant!

 

Bathing without a Battle

Bath time can be very distressing to a person with dementia who feels attacked and responds defensively with verbal and/or physical resistance.  The caregiver also feels attacked and frustrated due to the bathing/showering experience.  Joanne Rader, RN, MN, Long Term Care Specialist said, “The goal of bathing should be to promote pleasure for the person versus getting the person clean.”  Indeed, there are many methods that can be used to promote comfort and maintain cleanliness for persons with dementia.

Ms. Rader suggests we should first consider the person’s preference for staying clean (shower vs. bath; daily vs weekly, etc.) along with providing care during the “best time of the day” for that person.  Since showers can cause distress to the person with dementia, Ms. Rader suggested a “towel bath” method, a modified bed bath, using no rinse soap.  The caregiver applies a warm moist towel directly to the patient and then massages the person through the towel.  If the person is showered, Ms. Rader suggests keeping the person covered with towels or a bath blanket throughout the experience so the person can stay warm and maintain their dignity.  The caregiver simply lifts the blanket and washes the person under the blanket.  “Hair washing should be a separate procedure from the bath,” says Ms. Rader.

 For more information on Bathing without a Battle, contact Jan Dougherty, RN, MS at 602-528-0545.

 

 

"Sundowning" – Sleep issues with Alzheimer’s disease.

Robert Patton has his days and nights reversed. Often awakening around midnight, he dresses and tries to leave the house. Although his wife, Marilyn, reminds him that it is late, he usually paces the hallways until morning. Sleepy the next day, Robert spends most of the afternoon napping, while Marilyn, exhausted, cares for her two grandchildren.

Many people with Alzheimer’s are more restless at night. Some studies indicate as many as 20 percent of affected individuals will, at some point during the disease, experience periods of increased confusion and anxiety at dusk. Some individuals, like Robert, become more agitated and disoriented during the middle of the night.

While experts are not certain how or why these behaviors occur, many attribute them to late day confusion, sometimes referred to as "sundowning," which can be caused by some of the following factors:

End-of-day exhaustion (mental and physical), making it more difficult for an affected individual to cope with stress.

An upset in the "internal body clock," causing a biological mix-up between day and night.

Reduced lighting and increased shadows, causing confusion.

Disorientation due to the lost ability to separate dreams from reality when sleeping.

Less need for sleep, which is common among older adults.

"Sundowning is one of the most challenging aspects of caregiving," says Robert Green, MD, director of Emory University’s Neurobehavioral and Memory Assessment Clinic, who studies sleep patterns in dementia patients. "Sleep problems and caregiver exhaustion are two of the most common reasons patients are eventually placed in nursing homes."

Green suggests caregivers carefully consider whether anything can be done to help manage evening agitation. "Try to discourage afternoon napping if sleeplessness is a problem," says Green. "If the person takes medication and is drowsy during the day, talk to your doctor about possibly rearranging her schedule."

To reduce sleeplessness and sundowning:

Plan more active days - A person who rests most of the day is likely to be awake at night. Plan a full day of activities and, if the person is mobile, take him on one or two brisk walks during the day.

Watch what she eats - Restrict sweets and caffeine consumption to morning hours only. Serve dinner early and offer a light snack before bedtime.

Seek medical advice - Physical ailments, such as bladder or incontinence problems, could be causing discomfort, making it difficult to sleep. Your doctor may also be able to prescribe medication to help the person relax at night.

Change sleeping arrangement - Allow the person to sleep in a different bedroom, a favorite chair, or wherever he is most comfortable. Also, keeping the room partially lit may reduce agitation that occurs in dark or unfamiliar surroundings.

Still, some people with Alzheimer’s may continue to have difficulties getting through the night, regardless of what techniques are used. But according to Peter Rindlisbacher, MD, who treats patients exhibiting challenging behaviors, nighttime restlessness doesn’t last forever. "It tends to appear and disappear in phases," he notes, "and typically peaks in the middle stages, then diminishes as the disease progresses."

In the meantime, caregivers should make sure their home is safe and secure, especially if their loved one tends to wander around the house when everyone else is sleeping. Restricting access to certain rooms or levels can be accomplished by closing and locking doors, and installing tall safety gates (too large to step over) between rooms. Door sensors and motion detectors can also be used to alert family members when a person is up and about.

Once the person is awake and upset, experts suggest caregivers:

Approach the person in a calm manner; Find out if there is something he needs; Gently remind him of the time; Offer reassurance that everything is all right and everyone is safe.

"Avoid arguing or asking for explanations," suggests Rindlisbacher. "The person may not know or be able to tell you what’s wrong."

"Periods of restlessness may be unavoidable," says Green. "Remind yourself that they will pass and that the person’s actions are not deliberate. In the meantime, do what you can to ensure that you and your loved one get the rest you need."

Coping with Sleep Disruptions

Few things are more distressing than having your much-needed sleep disrupted night after night. Exhaustion makes it nearly impossible to complete daily caregiving tasks. Pay attention to your own needs.

When confronted with difficult behaviors in the evening, take a deep breath, and remain calm. You can figure out a way to "catch up" on your own sleep later.

Ask friends and family to help out, so you can rest and relax.

Consider hiring in-home care for the evening hours, if that’s when you need it most.

Some caregivers lay awake worried about what might happen while they’re asleep. Set up alerts, alarms or other safe ways to detect if a person is moving around the house, so you won’t rely entirely on your own senses to monitor what’s going on.

If you’re having trouble sleeping or experiencing severe stress, consult a physician.

TIPS ON COMMUNICATING WITH CONFUSED PERSONS

* Create a calm environment. The tone of your voice and your facial expressions are very important in speech. Try not to over-react to a situation. Take things slowly and smile whenever possible.

* Do NOT assume the person cannot understand what is being said. NEVER talk about the person as though he/she is not present.

* Avoid quizzing the person on names or dates. Not knowing the answer embarrasses the individual. If you want to ask questions, try to know the answers beforehand and help the person to answer. often when given a cue, the confused person will be able to answer adequately.

* Use gestures when trying to get your message across. Try using more than one sense to communicate such as touching as well as talking.

* Try to appeal to the person's sense of humor, but never laugh at them.

* Be reassuring. If you don't know the answer about someone or some thing, try, "I'm sure everything is all right."

* Praise the person's actions whenever possible. Compliment a new hairdo or outfit that may be new to you.

* If the person starts or continues to walk while you are talking to them, keep moving along in front of him or her. Do not try to stop the person. If you need to change directions, ease into the move by distraction.

* Do NOT argue about statements you know to he untrue. This may be different from what you were taught; however, insisting something is true to someone who believes facts to the contrary can only make the situation worse. Example: The person insists her husband will be joining her for dinner and you know her husband is deceased. Reminding her he is gone may prove very upsetting (she won't believe you and become angry). The best approach is to distract the person on to a different subject. A temporary change of subject will often solve the problem and get the person's attention on to a different thought altogether.

* Simplify each task into single steps. Be patient and use short sentences. Don't overwhelm the person with a string of instructions.

* Avoid situations which bring about frustration and anger. Try to anticipate problems and prevent them from happening. This will get easier as you get to know the confused person better.

* Encourage him or her to participate in activities which are on an adult level and provide pleasure. Be aware, though, that they may have short attention span. Find out what activities they have enjoyed in the past.

The most important rule:
Treat the confused person as an adult -- always be respectful.


DRIVING - Suggestions for Caregivers

As a caregiver of a person with Alzheimer's disease, you are in a difficult spot. At some point, you need to encourage the person to give up driving. The individual's safety and the safety of others depend on your actions. The Chapter also has a video for checkout that defines the skills used when driving and the impact Alzheimer's disease has on the ability to drive.

To assess the driving ability of a person with dementia, answer the following questions:

Does he/she become confused while driving?
Is she/he accident prone?
Does he/she have difficulty responding to driving conditions?
Does he/she have difficulty understanding signs?

If you answer yes to any of the above questions, you need to take action to protect yourself and others.

If you believe a person can no longer drive safely, here are the options available to you:

1. Encourage the person to stop driving and return the driver's license. You cannot return the license for someone else. The driver must sign a cancellation form (available from MVD) saying he/she is giving up the license.

Either you or the driver can send the signed statement and license to the Motor Vehicle Department (MVD). You may also take the signed statement and license to a Motor Vehicle Service Center.

2. Talk to the person's physician about the driving problems you observe. The physician will make an assessment (or refer you to a specialist who can do it) and then; 1) talk to the person and advise them to stop driving, 2) write to the MVD and request either re-testing or medical evaluations, and 3) have the physician write on the physician's letterhead "unable to drive" to serve as a visual cue or reminder for the patient.

3. Write a letter to MVD. The letter must contain the person's full name, (including middle initial if any), date of birth, address along with your concerns about driving. Information in a person's medical file with MVD is confidential; however, it is subject to subpoena if the case goes to court. The letter must be signed. The MVD will review the information and take appropriate action. (A person's age alone is not cause for license withdrawal action.)

The MVD may send the driver a medical examination report form for their physician to complete. A written, vision, and or driving re-examination may be required. It is possible all of the above may be required.

4. Keep car keys out of reach of the Alzheimer's patient if you believe he/she can no longer drive safely.

5. Disable the vehicle (i.e. remove the distributor cap or the coil wire.)

6. Discuss the driving problems with staff at your Alzheimer's Association Chapter.