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Alzheimer's Disease: A Caregiver's Guide

• Alzheimer's: Facts, Symptoms, and Treatment
• Guidelines for Alzheimer's Disease Management: An Overview
• Pharmacological Treatment
• Travel Guidelines & Tips
• Travel Worksheets
• Understanding and Coping with Problem Behaviors Related to Memory Loss
• Coping with Violence: If Your Loved One Changes
• Helping Your Elder Adjust to a Residential Facility
• Alzheimer's Disease Related Links

What is Alzheimer's disease?

Alzheimer's disease (AD), the most common of the dementia disorders, is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior (National Institute on Aging, 1997). Primarily a disease of older persons, AD affects an estimated four million people in the United States (Alzheimer's Association, 1997). Early symptoms may be mistaken by patients, caregivers, and physicians as normal aging changes (Small, 1997). However, AD and aging are not synonymous. Dementia is a progressive and disabling condition that brings turmoil and anguish to those involved.

Some facts about Alzheimer's disease

• As the population ages, the incidence of AD becomes greater
• 1 in 10 persons over age 65 and nearly half of those over 85 have AD
• Currently 4 million persons in U.S. have a diagnosis of AD
• A person can live 3 - 20 years from onset of symptoms and at some point will require 24 hour care
• The yearly monetary costs of AD exceed $100 billion in the U.S

Symptoms of Alzheimer's disease can include:

• A gradual memory loss
• Decline in ability to perform routine tasks
• Disorientation to time and space
• Impairment of judgement
• Difficulty in learning
• Loss of language and communication skills
• Changes in personality including inappropriate behavior, loss of interest, and changes in mood
• Hallucinations and delusions/false beliefs

How does your physician know if it is Alzheimer's disease?

There is no single test that can diagnose Alzheimer’s disease. However, trained physicians are 80%-90% accurate. Your physician needs to do a full assessment that includes:

• An accurate medical and psychiatric history
• A neurological/physical exam
• Lab tests to rule out anemia, vitamin deficiencies, and other conditions
• An evaluation of the person’s ability to do common daily activities such as managing finances and medications
• A mental status exam to evaluate the person’s thinking and memory
• A caregiver interview

Your physician may also request a brain scan, psychological testing, and additional lab work if he/she needs additional information.

How can you help your physician?

You can be prepared for the appointment by bringing a list of medications, a log of symptoms or behavior changes and a list of questions or concerns. It is also helpful to provide an accurate history of the person’s medical conditions and any previous psychiatric treatment.

What can your physician do if the diagnosis is Alzheimer’s disease?

Although there is no cure for Alzheimer’s disease, there are ways to treat some of the symptoms of the disease. Your physician may suggest:

• Use of medications to treat cognitive decline and memory loss
• Referral to appropriate activities such as exercise, recreation and adult day care services
• Appropriate treatment of medical or psychological conditions that may contribute to cognitive changes or decline

What can be done for behavioral problems?

At times, a person with a dementing illness may display behavior problems such as wandering, paranoia, suspiciousness, combativeness or resistance to maintaining personal hygiene. These behavioral problems can seem overwhelming to the caregiver. The physician may suggest various strategies to assist in daily caregiving tasks such as:

• Enrollment in the Alzheimer's Association’s Safe Return Program, an identification program for memory impaired adults
• Modifying the person’s environment in order to reduce confusion caused by overstimulation such as reducing noise and glare from windows
• Explaining a task before you do it such as saying, "I am going to help you put on your shirt."
• Providing a predictable routine at home with structured times for meals, bathing, exercise, and bedtime.
• Providing reassurance to the confused patient without challenging their accusations or misperceptions and by redirecting their attention

If it seems that suggested strategies aren’t helpful in managing the person’s behavior, the physician may want to use medications to manage symptoms of depression, restlessness, hallucinations, hostility and agitation. Be prepared to provide the physician with accurate information regarding the behavior problem such as the onset of the behavior, the frequency of the behavior, the time of day the behavior occurs, and the strategies you have tried.

How can the physician help you plan for the future?

The physician may suggest you start planning for health care needs now by completing an advance directive. An advance directive is a legal document that a patient signs while capable of making sound decisions. It directs how healthcare treatment will be made in the event of future incapacity. There are two types of advance directives:

• Living Will which conveys the person’s desire to die a natural death and not be kept alive by artificial means.
• Durable Power of Attorney for Health Care and / or Finances designates an individual who can make health care / financial decisions on behalf of the impaired person if he or she is not able to give consent.

How can your physician support you?

Often persons with AD and their families have questions regarding the disease, legal and financial planning, community resources (i.e. home care, adult day care, respite services) and available support. The physician may refer you to organizations such as:

Alzheimer's Association
1-800-272-3900
www.alz.org

The physician may also suggest that the caregiver maintain regular visits to their doctor to ensure he/she is in good physical health.

Geriatric Education Center
Peer Review Status: Internally Peer Reviewed by Robert Wallace, M.D. and Kathleen Buckwalter Ph.D.
and the Iowa / Missouri Consortium for Alzheimer Education

Assessment

• Conduct and document an assessment of:
  • Daily function, including feeding, bathing, dressing, mobility, toileting, continence and ability to manage finances and medications
  • Cognitive status using a reliable and valid instrument (e.g. the MMSE)
  • Other medical conditions
  • Behavioral problems, psychotic symptoms, or depression
• Reassessment should occur every 6 months or more frequently, if indicated.
• Identify the primary caregiver and assess the adequacy of family and other support systems.
• Assess the patient's decision-making capacity and whether a surrogate has been identified.
• Assess the patient's and family's culture, values, primary language, and decision-making process

Treatment

• Develop and implement an ongoing treatment plan with defined goals. Include:
  • Use of cholinesterase inhibitors, if clinically indicated, to treat cognitive decline
  • Referral to appropriate structured activities such as exercise, recreation and adult day care services
  • Appropriate treatment of medical conditions
• Treat behavioral problems and mood disorders using:
  • Nonpharmacologic approaches, such as environmental modification, task simplification, appropriate activities, etc.
  • Referral to social service agencies or support organizations, including the Alzheimer's Association's Safe Return Program for people who wander
  • Medications, if clinically indicated

Patient & Caregiver Education & Support

• Discuss the diagnosis and progression of AD with the patient and family in a manner consistent with their values, preferences and the patient's abilities.
• Refer to support organizations for educational materials on community resources, support groups, legal and financial issues, respite care, future care needs and options. Organizations include:

  Alzheimer's Association 1-800-660-1993 http://www.alz.org/

  Caregiver Resource Centers 1-800-445-8106 www.caregiver.org

  or your own social service department
• Discuss the patient's need to make advance directives and to identify surrogates for medical and legal decision-making.

Reporting Requirements

• Abuse: Monitor for evidence of and report all instances of abuse to Adult Protective Services or police department, as required by law.
• Driving: Report the diagnosis of AD in accordance with California law (Sections 2500 and 2572 of Title 17, California Code of Regulations).

Prepared by the California Workgroup on Guidelines for Alzheimer's Disease Management on September 30, 1998. Supported in part by the Federal Health Resources and services Administration's Bureau of Primary Health Care through a grant to the California Department of Health Services and the Los Angeles Alzheimer's Association. Version 93098

* Adapted from Roland Jacobs, M.D., Director, Geropsychiatry Unit, Encino Hospital, Encino, CA with contributions made by Jeffrey Cummings, M.D., Director, Alzheimer’s Disease Centers, U.C.L.A., Los Angeles, CA

Introduction

Many people enjoy travel as a form of recreation, relaxation, and an opportunity to learn. While travel may be a positive experience for most people, it poses special problems for people with dementing illnesses, for example, Alzheimer's disease, multi-infarct dementia, Parkinson's disease, Pick's disease, or injury that results in disabling intellectual impairment.

People with dementia have ever-increasing trouble with changes of pace, changes in location, fatigue, groups of people, changes of time zone, and noise. In a familiar environment there are many environmental cues that help a person with dementia to remain moored in reality. A favorite chair, a well-learned TV control, and a familiar floor plan are taken for granted.

Unfamiliar places, however, lack these well-known moorings and result in increased confusion, anxiety, and fear. Even places that once were familiar, such as a winter home, can seem new or alien, triggering fear or anger. Caregivers who are planning to travel need to plan trips carefully in advance, using both travel and health care professionals to determine the best possible methods to cause the least distress to the patient.

The following guidelines have been developed to assist you with travel planning. After reading the guidelines you might want to discuss them with either your physician or your local chapter of the Alzheimer's Association.

Plan Early

Careful well-informed planning is the best way to guarantee a successful trip. These plans involve considering the following:

What are the patient's limitations and strengths?

As a general rule, the more advanced the disease, the more difficult travel will be. For example, someone who is still relatively independent and cares for themself will have fewer problems with travel than someone who requires direction to bathe and change their clothing. Also, people with behavioral problems such as paranoia or delusions (missed perceptions, fears, or fixed false beliefs or thoughts) have a more difficult time even when intellectual skills are relatively good.

As a rule, someone who requires assistance with bathing, changing clothing, dressing, and toileting will have significant difficulty even with short simple overnight trips. At a time when it may be easier for retired people to visit adult children who work, it may be better to have the children visit you -- even if it means paying for their travel!

Patients who exhibit any of the following behaviors should avoid overnight travel (unless in an emergency):

• Become physically or verbally aggressive
• Miss perceptions, have paranoid thoughts, hallucinations, or delusions (for example, think people steal from them)
• Become confused during or after social outings
• Waken at night confused
• Have poorly managed incontinence (or who require special assistance or equipment with feeding if public dining rooms must be used)
• Have episodes where they do not recognize their caregiver
• Fall
• Yell, scream, or cry spontaneously
• Resist or argue with their caregiver's directions
• Wander or pace
• Demand to leave social settings or restaurants early
• Are easily frightened, confused or agitated
• Are unable to communicate their needs to others
• Have unstable medical conditions

Assess the caregiver's limitations

There are also caregiver-related issues to be considered. Caregivers should avoid traveling with their impaired person if they (the caregiver) have any of the following characteristics:

• Become upset or can not manage well during a crisis
• Are embarrassed when their patient 'acts out' or does something embarrassing
• Have unstable or complicated health problems
• Are embarrassed to go into an 'opposite sex' restrooms to supervise the patient
• Are unable to manage in high stress situations or with little sleep
• Insist on maintaining strict honesty and argue with their patient about mistakes and missed perceptions
• Are not able or willing to make significant adaptations during the trip -- often at a moment's notice-- to meet the patient's changing needs, including canceling the travel mid-trip.
• Don't think they want to take the trip but 'will do it for the patient.'
• Think there will be no change in the patient's behavior during the trip
• Are not willing to plan well in advance.
• Resist seeking help as needed, thinking they can amange on their own.
• Think that trips to familiar places (such as an adult child's home or cabin) will be 'just like it used to be' because it's 'familiar and fun.'

The Trip

While travel may be enjoyable, getting to your destination is generally not relaxing. The following are principles to consider when planning the trip:

1. The process of 'getting there' should be as short and simple as possible. Plan a trip that involves as few changes as possible.
2. Trips should be to a single destination, rather than a series of visits. For example, you would want to travel to a wedding and home, but not take three months stopping at friends homes along the way.
3. Stick with the familiar. Vacation in ways your loved one was accustomed to before the onset of the disease.
4. Consider a shorter trip. Day or weekend trips may be a better alternative, particularly if you are unsure of your loved one's reaction to travel. If everything goes well, go for a longer visit.
5. If your loved one has not travelled in 6 months, schedule a 'trial' overnight stay nearby home to see if the patient can still tolerate travel.
6. Gather necessary papers and documents: insurance cards, passports, physician's phone number, medication refills, and the patient's medical record. Do not expect your loved one to carry these documents or tickets.
7. Rest periods should be built into the travel schedule. Planning too many activities, such as meals in a restaurant, can lead to late night confusion or agitation. Do not plan activities for the night you arrive.
8. Save travel for the patient's best time of day.
9. Use services specifically designated for people with disabilities.
10. Spend as little time as possible in areas with large groups of people (more than 20), loud noises, or lots of activity (for example airport gate areas). Avoid busy places and situations that will cause anxiety for your loved one.
11. NEVER expect the person with dementia to travel alone. Do not expect travel employees (flight attendants, gate personnel) to care for or supervise your loved one. Always have the patient carry identification!
12. Expect the patient to become more confused, agitated, or behaviorally difficult during the trip. Assist with menus and choices.
13. Do not expect other members of a tour to volunteer or be agreeable if you need help with the patient.
14. Advise hotels, airlines, tour operators, or people you are visiting that you are traveling with someone with memory impairment. Be specific about your safety concerns and special needs. If you are staying in a private home, guest home, or bed and breakfast do not 'surprise' your overnight host with your loved one's condition. Explain it fully, well in advance. Do not think they won't notice. Don't be upset if they feel they can not handle the visit -- especially if there are children in the home.
15. NEVER travel without a full set of reservations!
16. Always provide family members with an itinerary and call home regularly .
17. Make a list of the daily routine and special items you need to take with you.
18. ALWAYS have the person with memory loss identified, preferrably with a bracelet the patient can not misplace.
19. Use good judgement when telling your loved one about the trip. Discussing it too far in advance may produce anxiety and agitation.
20. Be flexible. Have a contingency plan that allows you to leave early if your loved one becomes ill, agitated, or wants to go home.
21. Keep your sense of humor and laugh at all the things that happen. They will be part of a wonderful memory of your travels together.
22. If the trip is prolonged, develop a list of medical professionals and Alzheimer's Association chapters along your route.
23. NEVER leave your loved one alone or ask strangers to watch him/her. A person who does not know your loved one or the disease will not know how to react in a difficult situation.
24. Avoid travelling at peak travel seasons (Thanksgiving, Christmas)
25. Take medications with you to manage stomach upset, diarrhea, or other temporary problems caused by changes in food and water.
26. Know how to get help and who can help in countries where you do not speak the language.
27. Check the 'Yellow Pages' to see if there is a travel agent in your area specializing in planning trips for people with disabilities. If so, use the specialized service.

Moxley, J. (1996). Totebag and Toothbrush: Travel Tips for the Alzheimer's Caregiver. Winston-Salem, North Carolina: Piedmont Triad Alzheimer's Association

Tips for Travel

Hotel Stays

1. Ask for a large quiet room in advance of your arrival
2. Take familiar pajamas, robe, slippers, and, if possible, pillows
3. Use room service the night you arrive
4. Take several night lights with you for the bathroom and bedroom.
5. Evaluate the room for safety and remove potential hazards. Unplug the coffee maker, hair dryer, etc.
6. Be on guard against wandering.

   If there are two beds in the room, sleep in the one closest to the door.

   If you are a sound sleeper and your loved one is not, obtain a door alarm from a catalogue specializing in travel needs.

   Travel with a childproof doorknob cover so if the room dorr knob is round you can use it.

   Avoid rooms with sliding glass doors leading to the outside. Travel with a suncatcher you can stick to a sliding glass door to prevent the patient.

7. If your patient has a prescription for a medication for mood control, take it with you and use it when he/she begins to become anxious.
8. Never ask the patient to pack for the trip. It causes anxiety and confusion.
9. Allow for extra time for everything. Bathe and dress the person without rushing. Lay toiletries and clothing out in plain view for the patient. Carry only comfortable clothing that allows for ease in using the toilet.
10. Provide time for naps. Rest is important for both the person with dementia and for you.

Airplane Travel

1. When making the reservations:

   Fly during the patient's best time of day. Build a 'window' of time with flexible connections so you are not rushing through the airport with your loved one.

   Reserve bulkhead (first row) seats and place the person next to the window - away from other passengers.

   Try for as few connecting flights (plane changes) as possible

   Ask about services and lounges for disabled persons - have the travel agent arrange to use them

   Avoid travelling at peak travel times (Thanksgiving, Christmas, spring break) and when there will a high risk of weather delays (snow storms, ice storms, thunderstorms, fog).

2. Call the Alzheimer's Association and register your loved one for the Safe Return Program in case they get lost. Have the patient wear a Safe Return bon is wearing very little metal so security is not a problem. The metal detectors are often crowded and can be a source of anxiety, confusion, and agitation. Especially during holiday seasons or in large cities, avoid wearing metal buckles or buttons.
3. Minimize carry-on luggage, but carry on medicines. Pack the suitcases for the patient.
4. Avoid caffeine and limit fluid intake
5. Bring something such as pictures to use as a distracter
6. If you plan to use a tranquilizer, ask your doctor about when to expect it's peak action. Some (e.g. Haldol) should be given five hours before the flight.
7. Be sure that the patient is carrying identification!
8. During the trip

   Pre-board with other passengers requiring extra time

   Place the patient in a seat next to the window so they interact only with you.

   No fluids unless it is a long flight -- then stick with juices. Never let the patient drink alcohol on the plane!

   Spend minimal time waiting in crowded gates

   Use wheelchair or electric carts to travel from gate to gate

   If there is a long layover, see if there is either a lounge for disabled persons or another quiet area in which the patient can wait in peace.

   Carry all important papers yourself. Do not give your loved one boarding passes or or passports

   Bring a snack of the patient's favorite food, magazines and games to use for diversions, and a sweater

   Have someone meet your plane whenever possible

Moxley, J. (1996). Totebag and Toothbrush: Travel Tips for the Alzheimer's Caregiver. Winston-Salem, North Carolina: Piedmont Triad Alzheimer's Association

Automobile Travel

Think about the following things when traveling more than one hundred miles by car.

1. Never leave a confused person alone in a car. He/she can 'play' with the gearshift or release the parking brake.
2. Have activities such as simple car games or sing-alongs to help pass the time. Include cassette tapes of your loved one's favorite music.
3. Dress the person in comfortable casual washable clothing that allows for ease when using restrooms.
4. Prepare for spills and soiled clothing by keeping an extra set of your loved one's clothes and shoes in the car.
5. Make sure you have emergency equipment in the car including a gallon of water, cat litter or sand (for ice), blankets, de-icer spay, jumper cables, ice scrapers, spare tire, and, if at all possible, a cellular telephone.
6. Carry a covered cup and straw for drinking
7. Pack a container of wet wipes in the car for accidental spills.
8. Never drive more than two hours without taking a break
9. Stop early in the day -- Covering too much distance in one day may cause confusion at night -- even if the patient slept all day in the car
10. On overnight trips, bring familiar pajamas, robe, slippers, and the person's pillow. Pack the suitcases for the patient.
11. Do not plan activities for the night you arrive at your destination
12. People with dementia should not drive, therefore, do not rely on the patient to assist with driving, reading the map, locating exits, or finding addresses.
13. If the person becomes confused or belligerent, stop for the day at the next available place. DO NOT attempt to calm the person and keep going as he/she may try to leave the moving car, or wrestle the driver for the steering wheel.
14. Take an additional driver /caregiver on trips involving more than 6 hours of driving time.
15. Do not take risks rather than 'bothering' family or friends for help. If your children who live in another state tell you 'things will be fine' or 'you are making too much of a fuss,' tell them they don't understand the problem!
16. Make sure the car has good tires and is serviced regularly.
17. Plan the intinerary well in advance and leave copies with family or friends. Check in with family nightly.
18. Plan to use the restroom at regular intervals. Make sure you pack an 'occupied' sign to hang on a public restroom door.
19. Make sure the person is wearing a Safe Return bracelet, carrying wallet identification, and you have a recent picture with you.
20. ALWAYS, ALWAYS keep the seat belt buckled and the doors locked.
21. Remember, an automobile has high potential for danger. Proceed accordingly.

Moxley, J. (1996). Totebag and Toothbrush: Travel Tips for the Alzheimer's Caregiver. Winston-Salem, North Carolina: Piedmont Triad Alzheimer's Association

Bus Tours

1. Consider another route, if possible
2. Only go on short bus trips
3. Go with familiar people
4. Make sure the person gets adequate rest. This may mean using room service at night or skipping some of the planned activities.
5. Try to set up the room in the same way each night.
6. Try to avoid packing in front of the patient each day
7. Have plans for returning home at several points during the trip should the patient be unable to manage. This may involve renting a car.
8. Carry an 'occupied' sign for restrooms.
9. Have the person wear comfortable clothing that provides easy access for using the toilet.
10. Make sure the patient wears a Safe Return bracelet and has identification in their wallet.
11. Carry a recent photograph of the patient.
12. In restaurants, eat familiar favorite foods at non-peak hours, sticking to the patients schedule whenever possible.
13. Other tourists are not caregivers, therefore, do not expect them to help you. Many times other tour members become angry or offended if they must tend a person with dementia during their vacation.

Tours and Cruises

1. Make your own airline transportation reservations to allow for increased flexibility at the beginning and end of the trip. For example, if the tour/cruise requires you fly to a city where the tours/cruise starts, allow for extra overnight time in that city to assure the patient is well-rested prior to joining the tour.
2. Take extra medications with you and a medical history in case of medical emergencies or changes in trip plans. Always take medications with you rather than checking them with other luggage.
3. Keep the schedule simple and make sure extra rest is planned at the end of each day.
4. Check in regularly with family members.
5. Make sure family members have the trip itinerary and telephone numbers of hotels where you will be staying.
6. NEVER travel without hotel reservations. While spontaneity may be fine for people who are well, trying to find a place to sleep when a person with cognitive loss is present can be a nightmare.
7. Make sure your health insurance will cover emergencies while not at home.

Celebrations

1. Travel one or two days in advance to allow the patient time to rest before the celebration.
2. Try to attend events scheduled early in the day.
3. Provide the patient with short periods of attendance at parties and activities alternating with quiet rest periods.
4. Minimize times spent in large groups, noisy places, and with 'spontaneous' or energetic children.
5. Do not expect your patient to remember names of family or friends.
6. Do not feel 'hurt' if your patient does not remember the event.
7. Pack suitcases for the patient.

Weddings

1. Know what to expect. Discuss the event with your family, the bride, and the groom.
2. Don't let 'should's' make the decision such as 'Grandpa should attend because the groom is his only grandson.'
3. Set realistic expectations about travel plans, rest before and during the event, and length of stay during the wedding. For example, you may have the patient attend the wedding, rest for an hour, attend the reception for a brief period, and call it a day. You may decide to attend the only the wedding.
4. If the usual caregiver has responsibilities during the wedding, it is best to find two good substitute caregivers who are comfortable and compatable with your loved one. Have the caregivers stay with the patient whether he/she attends the wedding or not.

Moxley, J. (1996). Totebag and Toothbrush: Travel Tips for the Alzheimer's Caregiver. Winston-Salem, North Carolina: Piedmont Triad Alzheimer's Association

RV Travel and The Travel Lifestyle

1. Understand that traveling will be more difficult than in previous years.
2. If you live in an area seasonally, make sure you have a physician in both areas and the physicians communicate and pharmacies with each other, sharing the same plan of care.
3. When arriving in a new area, give the patient time to adjust and rest before participating in activities.
4. Understand what was a familiar residence last year, may not be familiar this year.
5. Make sure you have a support system in each location where you plan to stay:

   a church

   community services including day care, visiting nurses, Alzheimer's Association, respite care, homemaker services, meal services, and support groups

   supportive friends and/or family

   transportation services

6. If you are 'roaming' and the person becomes confused, stop and have the person rest--perhaps as long as a few days. If the confusion does not resolve, seek medical attention at a nearby hospital
7. Know your medical coverage and where you are entitled to seek care. Know what types of permission are required for medical care to be reimbursed.
8. Carry a copy of your durable power of attorney and advanced directives in case of emergency.
9. Have an emergency plan in place in case the caregiver becomes ill, including family who know your itinerary and will come if needed.
10. Have vital information about you and your patient in a prominent place in the motor home.
11. Have the motor home serviced regularly and the tires checked.

Should The Worst Occur...

When planning care for people with dementia, a good rule to follow is 'Plan for the worst and hope for the best.' This rule certainly applies to travel. Whenever demented patients travel, it is safe to assume their confusion will worsen for the duration of the trip. This may produce, discomfort, fear, or worse. Some patients demand to go home immediately. Some become agitated, even violent. It is important for the caregiver to realize that the patient will not be able to control his/her behavior when this happens. They can not be reasoned with. Therefore, the caregiver must have a plan developed in case of behavioral emergencies.

Most patients will have increasing anxiety before losing control of their emotions. Learn to recognize the early warning signs of increased anxiety in your loved one: increased movement; statements about the crowds, the menu, or things going on in the environment; attempts to leave a situation; anxious statements about needing to go home or to the toilet; loss of eye contact; crying; becoming physically ill; becoming incontinent of urine or stool; or wanting to lie down. The earlier you can recognize increasing anxiety and remove the patient from the uncomfortable situation, the easier the problem will be to manage.

1. Recognize rising anxiety take steps to get the patient to a quiet area to rest if at all possible. Keep the patient in the quiet area until the anxiety disappears. Then get the person to the hotel room to rest. DO NOT continue the activity!
2. Keep any mood controlling medications with you and use them when you notice anxiety building, rather than waiting until the situation is out of control.
3. Make sure the patient has identification on at all times. (Medic-Alert bracelets can be used.)
4. If traveling to a single destination, know where emergency medical care can be obtained. Seek it early before the patient loses control.
5. Take a brief written medical history with you, a list of the patients medications, allergies and a copy of your power of attorney.
6. Have an emergency telephone number you can call to check for messages.
7. Check in with family members throughout the trip.
8. Avoid traveling to places where health care and support will not be available.
9. During the trip, be flexible enough to take the most expedient route home if things are going poorly.
10. Do not plan to rely on the kindness of strangers to help you in a crisis.
11. Do not put off crisis planning because 'we'll cross that bridge when we come to it,' or 'that would never happen to my loved one.'
12. If, after reading this pamphlet, you decide traveling with your demented loved one involves too many risks, seek respite for the patient and go on the trip with a friend or relative. The trip may provide you with much-needed respite, thereby allowing you to care for your loved one far longer.

References

This booklet was a team effort, developed to assist families with demented loved ones plan travel. The following sources of information and editorial support are gratefully acknowledged for their help in the preparation of this booklet:

Alzheimer's Association, Greater Phoenix Chapter, Phoenix Arizona.

Comments regarding travel from members of the ALZHEIMER Web site, ALZHEIMER@wubios.wustl.edu.

Kathleen C. Buckwalter, PhD, RN, FAAN, Professor, University of Iowa College of Nursing, Iowa City, Iowa.

Moxley, J. (1996). Totebag and Toothbrush: Travel Tips for the Alzheimer's Caregiver. Winston-Salem, North Carolina: Piedmont Triad Alzheimer's Association.

Neurologists from the Department of Neurology, Mayo Clinic Scottsdale.

Purpose

The purpose of these guidelines has been to assist you with planning travel with your loved one with dementia. It is suggested you contact both your physician and your local chapter of the Alzheimer's Association when planning travel. Discuss these guidelines and your concerns with them and other dementia professionals. Advanced planning can only enhance the success of your trip and help to assure pleasant memories.

Important Travel Information

Moxley, J. (1996). Totebag and Toothbrush: Travel Tips for the Alzheimer's Caregiver. Winston-Salem, North Carolina: Piedmont Triad Alzheimer's Association

As Memory Fades.....The Caregiver's Challenge Begins

This booklet has been designed to help you understand the care of your loved one with chronic a neurological degenerative condition. There is an accompanying video for this brochure. It may be loaned to you, if you request it. We encourage you to make copies of this booklet.

If you have questions regarding the film or the care of your loved one, call 602-301-8111. A secretary will answer. Ask for the Gerontology Clinical Nurse Specialist in the Department of Neurology. An expert in caring for people with memory loss will answer your questions quickly and confidentially.

Introduction

Diseases causing memory loss and neurologic degeneration are common, affecting more than 5 million Americans. Although Alzheimer's disease is the most common disease causing memory loss, many neurologic conditions have similar symptoms and are managed in approximately the same way.

The average family spends over $200,000 on care for a loved one after they have been diagnosed, yet the costs of the illness far exceed the money spent. Families selflessly devote their love, time, energy, and creativity to care for their loved ones while watching the slow agonizing progression of the disease.

Diseases that cause memory loss -- including Alzheimer's disease, Parkinson's disease, and strokes -- have a variety of symptoms that can baffle and overwhelm family members. Some of the most challenging and frightening problems rarely occur early in the disease but may "pop up" when it is least expected as the disease progresses. Examples might include the following:

• Demanding to leave during an activity or event they had been looking forward to
• Waking up in the middle of the night to get dressed and start the day
• Not recognizing familiar settings, home, or family late in the afternoon
• Accusing family members of stealing items the patient has hidden -- or blaming "outsiders" for taking things
• Threatening family members with physical violence
• Becoming irritated or belligerent late in the day
• Refusing to bathe, go to the doctor, or out socially for no apparent reason
• Walking away from home or getting lost
• Telling stories you know aren't true
• Thinking there are extra people or children in your home
• Seeming selfish

These behaviors may seem mean-spirited and purposeful, but they are simply symptoms of the patient's brain disease. These behaviors are normal and expected in mid-disease. It is important to realize that the patient can not control these sudden behavior changes, but you can help to prevent or minimize them. While not everything works all the time, we can eliminate much of the "acting out," behavior by making simple changes in our behavior and the environment. The changes help the patient to succeed. Unexpected changes in behavior are often triggered by things you can control -- once you know how.

The purpose of this pamphlet is to teach you what triggers those unexpected problem behaviors and how to change the patient's routine to prevent them.

Fatigue

The biggest enemy of the person with memory loss is fatigue. People with brain diseases tire very easily -- because they have to concentrate so hard all the time. Try the following suggestions to prevent fatigue:

• Give the person a rest both in the morning and the afternoon. This may be just a quiet period or an actual nap. If the person naps, have him/her sleep in an easy chair or the sofa so they know when they wake up that the rest period was a nap -- that it is not morning all over again!
• If the person is waking at night DO NOT keep them up all day. Forcing them to stay up all day can make the night wakening worse!
• Avoid foods and beverages with caffeine. Try decaffeinated coffees, teas, colas, and pops containing no caffeine
• If you are planning a social activity or trip, make sure the patient is well-rested both before and after the trip. Many families make the mistake of trying to accomplish too much during a day. Travel for a while, then stop and rest.
• Get to know the patient's "best time of day." Use that time to visit friends, go to the doctor or dentist, or travel
• Plan activities that are of a shorter duration. Instead of cleaning the house in a single day, spread the chores across several days to prevent the person from becoming overtired.
• During holiday gatherings or special occasions such as weddings or reunions -- when the person is away from home -- plan in advance a place and times when he/she can get away to rest during the activity.
• Many patients go through a period where they sleep a great deal. If this happens, check for depression or boredom. If neither is present and the person is still sleeping at night, understand it is normal for the illness. This is a good time for you, the caregiver, to get things done, catch up on your rest, or indulge your own interests.

Change

People with memory loss have problems with planning. The more they think about an activity, the less they are able to do it -- even though they could do it yesterday or can tell you how to do it! Help the patient and decrease their frustration by doing the following:

• Have a routine you follow during the day. While the timing of the routine is not important, the sequence of activities is very important. For example, if the patient gets out of bed, has breakfast, and then bathes and dresses -- it is not a good idea to have them get out of bed, bathe and dress, and then eat breakfast. This produces frustration and anxiety that can accumulate throughout the day and produce increasing problems in late afternoon or at night.
• When well-meaning family and friends suggest the patient needs a change of pace, gently reassure them that this may not be in the patient's best interest.
• Redecorating the house, decorating for the holidays, moving, or even rearranging the furniture can produce problems. Before moving, redecorating or remodeling consult with a memory loss specialist such as the Mayo Clinic Scottsdale , Department of Neurology, 602-301-8111, or the Alzheimer's Association office nearest you. Seeking advice in the beginning can save many problems later.
• Keep holiday decorations simple. Avoid having many long holiday gatherings and parties with large numbers of guests. Simple, quiet festivities are enjoyed more by the patient and do not result in behavior problems.
• If the patient demands to be taken home during a party or becomes rude to friends or children, understand this behavior is not aimed at the person. It is simply the patient's way of telling you he/she is tired or overwhelmed by the activity level and/or changes.
• Travel can be especially difficult. Plan trips with the help of a knowledgeable professional who regularly helps families manage problems associated with Alzheimer's disease and related disorders and travel. Ask for a copy of the Mayo Clinic Travel Brochure, designed to help families who must travel with people with memory impairment.
• Occasionally you will plan trips or events that you know will trigger increased confusion. Expect the confusion. Plan to have extra help or medications on hand to see you through this period.

Overwhelming or Misleading Stimuli

People with memory problems suffer the loss of ability to interpret what they see and hear properly. Noises and things they see may become distorted -- like a fun house on the midway at the state fair. This causes the patient to become uncomfortable in crowds or in noisy settings. Groups as small as ten people can result in an angry outburst, a demand to leave, or rude statements -- especially if the patient is tired.

• If the person wants to leave, it is a good idea to honor their wishes and leave the setting, or have them retire to rest for a while.
• Encouraging the patient to continue to attend or stay at a social gathering may produce severe agitation or waking up confused that night.
• Use the patient's requests to leave as an indication of how much activity, noise, and how large a group the patient is able to tolerate.
• If the patient begins to complain of people at home who aren't there--for example seeing little people or children-- turn off the TV, take down family pictures, and cover windows at night. Mirrors may have to be covered with roller shades especially in the bathroom. The patient may not recognize their reflection and leave thinking a stranger is in the room.. It is best to call the Mayo Clinic Neurology Clinic and talk this over with a professional.
• If the patient begins to develop ideas that people are in the house, becomes suspicious that people are doing things behind his/her back, or tell stories you know aren't true, Don't argue or correct them. Recognize that the person's brain is "playing tricks," and the illusions and beliefs are very real to them. The patient believes these statements. Correcting the person will simply convince them that you don't know or care about what they are experiencing. It is best to reassure the person of the following:
  1. They are safe
  2. You have taken care of the problem or your intention to take care of it. (This is a statement, you do not necessarily act on it)
  3. You understand the patient is concerned and upset by what they are seeing or hearing.

Loss of Meaningful Activities

Activities define who we are. When the patient loses the ability to drive, work, mow the grass, cook, or perform other meaningful tasks, depression or anxiety may result. It is important to substitute old cherished activities with similar simpler activities.

• If there is an occupational therapist in your area, talk with either occupational therapist or activity therapist to help design replacement activities. If no therapists are available in the hospital in your area, contact a nursing home and ask for the activity director.
• If you have adult day programming available, use it. It can provide social contact and meaningful activities for the patient as well as respite for you.
• Allow the patient time to talk about their losses. Grieving is normal -- even desirable. If the grieving lasts for more than 3 weeks, affects sleep or appetite, see your doctor about treating the patient's depression.
• Discuss the disease process with the patient so he/she can understand why activities are being lost and they do not think, "they are going crazy." If the patient is losing driving privileges either you or a health professional should tell them the reason. If no one discusses the problem with the patient, they are likely to develop paranoid or suspicious ideas. While you may not choose to use the term "Alzheimer's disease" most patients can understand the idea of "brain disease," or "memory loss problem.
• The patient may become angry or deny their memory loss. If this happens, drop the subject for a time. The goal is not to get the person to admit the memory loss, but to help them to understand why these things are happening. Denial and anger are a normal part of the grieving process.
• Do not assume that ignorance of the disease process will lead to a happier patient. Also, do not think that telling the person about the memory loss will "kill them," or cause them to "give up." This is very rarely the case. Trying to hide the illness from the patient becomes increasingly difficult and strains your relationship with the patient.
• Have the patient help around the house. Many people can manage simple activities such as dusting, sweeping, table setting, sorting, and helping with simple cooking tasks late into the disease. Think of the activities as therapy. Do not evaluate the results. If the person's performance is incomplete or sloppy accept it is part of the disease process and recognize that the activity remains valuable for your loved one
• Look at activities that may be too dangerous such as using power tools, hunting, feeding livestock, working with flammable tools, and try to replace them with safer activities. Many men who have not had hobbies are able to learn simple repetitive tasks with supervision such as painting, latch hook rug making, cooking, and simple woodworking.
• Pets, gardening, and musical activities often produce a high degree of satisfaction and offer good exercise.
• Exercise three times each week will help to maintain a positive mood and functional abilities. Exercise may include walking, gardening, dancing, or use of a stationary bicycle.
• Reading aloud to your loved one is often a satisfying and reassuring activity even late in the disease.
• Use videotapes to your advantage. Obtain videos of old television comedies, tape favorite sporting events, and have videos of family members. Avoid stories that include violence, murders, or cartoons.

Creating Too Much Demand

Many caregivers feel they need to exercise the patient's brain, testing every day and pushing them to achieve. In addition, it is unnerving for family members to hear the patient make mistakes and not correct them, but it is essential.

• Think about how you feel when someone tells you you've made a mistake. Being corrected feels pretty bad. The patient with memory loss is constantly confronted with their mistakes, which is pretty uncomfortable. What we try to do is make the patient feel comfortable with the knowledge they have -- as long as they are safe.
• First, don't try to exercise the brain. The brain is not a muscle. People with memory loss are not lazy, they have a disability that is, in many ways, like an amputation. We have to assume they are working as hard as they can at any given moment with the abilities they have left at that time. People with memory loss have good days and bad days. Accept the patient's changing abilities each day -- or hour-- as the best the person can do right now.
• Avoid quizzing the person: "Do you remember me?" "What is her name?" "Remember what we did yesterday?" Life becomes like a constant test for people with memory loss and we don't want them to feel as if they have failed that test again and again.
• If the person becomes upset, try to distract them rather than confronting. If that does not work and the person is safe, walk away and let them forget.
• Do not announce things in advance. People with memory loss have problems figuring out time. They become upset and fearful about schedules -- especially doctor visits. Announce activities at the last possible moment.
• Let the patient forget. If you lose your temper, the patient refuses to bathe, or there is a behavioral outburst, leave the patient alone and approach them again later. The outburst will probably have been forgotten.
• If the patient has forgotten how to do an activity, help them with it. Don't try to "talk them through it," or have them "think about it." Thinking about it only worsens the problem. Use distraction instead. Distraction is simply changing the subject. Examples include: moving on to another task; giving the person a glass of juice or water; making a phone call to a friend; looking at family pictures in an album; or reading a letter aloud. Let the memory loss work for you. If a letter, joke, or other distracter is helpful once, don't be afraid to use it again and again.
• Sometimes your loved one's forgetting can actually be useful. If they become upset about something, reassure them and don't bring it up again.
• Whenever possible give the person a choice. "Do you want a bath or a shower?" "Would you like a person to stay with you in the home or to enroll in an adult day program?" Realize that we avoid the term "Do you want to…..?" The person with memory loss will tend to answer "No!"

Illness

If the patient is not feeling well, has pain, is coming down with a cold, has a medication reaction, or an infection, you will probably see a sudden onset of problem behaviors and confusion that do not go away with rest. If this happens and the patient does not improve in an hour, complains of pain, shortness of breath, is bleeding, or vomiting you need to see the doctor as soon as possible. Think about the following common problems:

• Has the person been drinking at least one and a half quarts of liquid each day? Are they urinating frequently? Does their urine smell strong? Urinary tract infections are very common causes of agitation.
• Does the person have arthritis or another painful condition? Is the patient on his/her feet all day? Does the patient "hold" or protect a part of his body? Even though the patient may not complain of pain, we need to think about it. Ask the doctor for a medication you can use to relieve pain and use it regularly for mild pain. If the pain is allowed to become severe, the pain medication will be ineffective. If the person begins to moan, yell, or scream, suspect he might be in pain.
• Worry about constipation. Make sure the patient receives adequate fiber in their diet, but avoid laxatives and enemas.
• Have the person's prescriptions, over-the-counter medications, vitamins, and herbal preparations checked regularly by your doctor or pharmacist.
• Avoid alcohol intake as it can worsen memory permanently. Many people with memory loss over-react to alcohol. Try alcohol-free beers, wines, and mixed drinks as a substitute. If the patient becomes upset, try mixing more and more dilute drinks. Some caregivers add water to liquor bottles after their loved one goes to bed. Ask your physician to tell your patient not to drink alcohol.
• Talk with your physician about health and preventing illness. You may want to ask about flu shots or the vaccination for pneumonia.
• Diet and nutrition may become a problem. Have your patient take a simple multiple vitamin daily -- especially if they are not eating a balanced diet. Become concerned if the patient begins to lose more weight than 6 pounds in 6 months. Unless the person is on a weight reduction diet, weight loss greater than 6 pounds in 6 months is cause for alarm -- no matter how heavy they were before. See your doctor. Consult with a dietitian. If the person refuses to eat, try different foods that are high in calories, and contact a helping professional. Instant breakfast drink in whole milk can be used as an inexpensive, tasty, and fully effective nutritional supplement.

When a Problem Behavior Occurs

You have used these recommendations, but despite your best efforts, one day your loved one begins to scream at you, doesn't recognize your home, or wanders away. There are some tips for managing these stressful events:

1. Recognize the problem is temporary and will pass
2. Don't argue with or confront the person. Treat the person as if he/she is frightened. Tell them you understand and intend to help.
3. Get the person to a quiet place where he/she can rest briefly.
4. If it is the middle of the night, try to give them a snack and get them to an easy chair
5. If the person does not recognize his/her home, try driving them around the block, or reassuring them that this is the place where you will spend the night (implying it is a hotel). Reassure them you will go home tomorrow.
6. Try calling one of the person's children to reassure the patient. Sometimes a call to a family member can be reassuring when all else fails.
7. If the episode does not resolve within an hour or so, contact your physician or take the person to the nearest urgent care center or emergency room. Do not try to get an agitated confused person into your car. Call the paramedics.
8. Do not blame yourself for this episode. These agitated and confused episodes are a normal aspect of the disease. They will occur to even the best of caregivers.
9. Do not become upset if you get angry. Anger is a natural response to stressful and unpleasant situations. Learning to manage these behaviors is a matter of trial and error. With practice and understanding you will become more skilled.

Worrying About Safety

People with memory loss lose their sense of "danger" quite early in the disease. They become unsafe with power tools, lawnmowers, snowblowers, cars, medications, propane tanks, and vulnerable to unscrupulous individuals and scams very early in the disease. While you can not protect the patient from all possible harm, you can decrease the potential for harm by recognizing and preventing the possibilities.

• Try to remove the car when the patient begins to ask directions, follows too close, causes accidents by stopping too soon, or misses common traffic signals.
• Hire someone to mow the grass and shovel or blow the snow. Contact your nearest Area Office on Aging in the blue government pages of your phone book to locate chore services. Chore services can help with these services.
• Turn the water heater to about 110 degrees.
• Remove power tools.
• Recognize that telephone solicitors target people with mild memory loss and plan to stop "junk" mail. This may mean renting a post-office box without the patient's knowledge.
• Supervise or administer all medications early in the disease -- particularly insulin, Coumadin (blood thinner), Cognex, and other potentially toxic medications.
• Avoid having the patient change the propane tank -- especially if he/she smokes.
• No guns, ammunition, or hunting knives in the house, please.
• Pull the knobs off of the stove when it is not in use. Put away knives, the blender, mixer, toaster, food processor, and hot appliances when not in use. Store medications and liquor in either a locked cupboard or a place where the patient will not find them.
• Have the patient smoke in a single area, preferably the kitchen. Avoid having cigarettes near upholstery. If you see upholstery smoking, do not try to extinguish it. If possible, move the piece outside. Call the fire department. If the piece of furniture can not be moved, leave the house immediately.
• "Safety-Proof the house as if you had a visiting toddler, evaluating every possible thing that pose safety hazards.
• Recognize that the patient loses their sense of danger very early in the disease. Simply telling them to be careful will not be effective, as the patient is unable to use reasoning.

Special Problems

The following section deal with approaches to problems that are commonly encountered when caring for people with memory loss. While there are no definitive answers to these problems, the approaches suggested may help.

• Bathing

  Many patients go through a phase where they either refuse to bathe or tell you they have already finished their bath. This can be frustrating, especially if the patient develops body odor. The first (and most important thing to remember is that no one ever died from not bathing. Many older adults are modest about disrobing, or become afraid of bathwater or the shower. Some of the following suggestions have been helpful:

  Let the patient choose the time of day to bathe

  Remind him/her of a special occasion they must be clean for (e.g., "we can't go out for lunch until you bathe")

  Associate a pleasant experience with the bath (such as a chocolate treat or music)

  Make sure you check the temperature of the bathwater or shower to prevent freezing or scalding.

  Color the bathwater or use bubble bath

  Try a hand-held shower head so water does not hit the person's head

  Allow the person to bathe with underwear on

  Sing during bath-time to relieve the tension or have some soft music in the background.

  Compliment the patient after the bath

  Don't take refusals to bathe personally

• Wearing the same clothing day after day.

  This is an indication that the patient can not handle change and is normal for people with memory loss. Purchase several identical outfits when shopping. Then, when the person takes one set of dirty clothing off, remove it and replace with an identical set of clean clothing. Make sure you have a picture of your loved one in this clothing in case they wander. You will be able to tell the police exactly what the person is wearing.

• Hiding Things

  Hiding and losing things are the most frustrating aspect of the disease for many caregivers. Understand that hiding things often represents a concern about theft. Things will be hidden. It is important to minimize the loss of money and valuables.

  Remove valuables from the house whenever possible. Remember, these possessions still belong to the patient and can not legally be dispersed using the patient's will. Take larger valuables such as the family crystal, silverware, and china, and pack them away. Label the carton "books," or something that does not attract attention and place them I a safe area, such as a little-used closet or basement.

  Place jewelry not used daily in a safety deposit box.

  Take jewelry worn daily and have it appraised. Have the jeweler remove the most valuable stones and place them in a safety deposit box. Replace the valuable stones with cubic zirconium and return to the patient.

  Never ever send jewelry you do not mind losing with the patient to a nursing home or assisted living facility.

  Put "clappers" on house and car keys so they beep when lost

  Get to know where some of the more common hiding places are. Families report hiding money, keys, jewelry, medications, and many other things in the following locations:

  under the mattress

  in the pages of books

  in the hems of curtains

  under the paper in back of pictures or mirrors

  under pillows

  in food containers

  in the freezer

  behind bricks in the basement

  in breakfront cabinets

  wadded in tissues in toilet paper cardboard cylinders

  in the trash

  It is important to remember that things will be lost. Make sure that there are duplicates of keys and other items. Also, losing the car keys is an excellent way to have your loved one stop driving. This is one example where you may decide to let the keys "stay lost," and not volunteer another set.

• Fear of Abandonment/Refusing Help

  Many patients refuse to go to adult day programs or to allow in-home respite services. Patients become dependent on their caregivers to remember when they can't and become nervous and upset when their caregiver is not around. This can become so severe that the caregiver is unable to have even a moment alone, including to go to the bathroom.

  The best defense against this is a good offense. Have your loved one go to day programming. Have extra help in the home as early as possible, usually a cleaning person, so the patient is used to having others around. Make sure that family members participate in care on a regular basis and, if possible, friends take the patient out whenever possible.

  If the patient becomes enraged when a service provider or family member is used for respite, understand that this is not uncommon. Insist that you need your time and space. Gently reinforce that staying alone or going with you is not an option. Insist that you will try to find respite workers that the patient likes.

  The first time or two the patient attends day care or has a new respite worker, stay with him/her during the event. As your loved one becomes accustomed to the day program or respite worker, anger will subside. Successful adaptation to respite will keep your loved one at home longer and will help to keep you from feeling trapped.

• Aphasia

  Loss of language abilities are a usual part of memory loss. Loss of reading comprehension generally occurs first. One of the ways to determine this is if mail starts to pile up or the person begins to pay anything that even resembles a bill. Another clue is when the person either stops reading the paper or can't tell you what they have read.

  When the person starts to stumble over words, it is important to understand that they also have trouble understanding what is being said. Talk more slowly using simple phrases. Give the person extra time to respond. Use gestures and point to objects whenever possible.

  If the person begins to use word that don't make sense, often called "jargon" or "word salad," try to find bits and pieces that relate to the patient's world. The patient may have good understanding of the world around them, but may simply not be able to express himself or herself.

  It is acceptable to explore potential meanings with the patient unless frustration begins to rise. If he/she becomes frustrated, distract them to another task and try later. A single consultation with a speech pathologist may be helpful to develop communication strategies.

  If the person develops slurred speech or problems swallowing, speak to your physician immediately. The patient may run the risk of aspirating (breathing it into their lungs) food or saliva.

• Made-up Stories

  One of the more frustrating effects of memory loss is called "confabulation." People with brain diseases, especially those that cause memory loss, tend to have their brains "fill in the blanks" when they can't remember what happens. So, the patients come up with stories that they believe are true.

  Confabulation is not a lie. It is a story the brain makes up. Trying to correct the patient leads to anger and frustration for you both. A good rule is that anything the patient says is fine - as long as safety is not compromised.

• Repeated Questions

  Patients ask repeated questions for several reasons: they can't remember asking the question; they have no sense of time; and the question they are asking is not really what they want to know. When your loved one asks a question over and over, most often it has to do with when or where something will happen. These questions can become obsessive. There are two rules for these questions:

  1. Never announce anything more than 24 hours in advance because it precipitates obsessive questions.
  2. When a question is asked more than once or twice, ask "why are you asking?" Then address the underlying concern.

     Example:

     Patient asks: "What day is it?"

     You ask: "Why do you want to know?"

     Patient says: "I don't want to miss church."

     You say: "I will make sure you get to church on Sunday."

  Another strategy is to write the answer on a file card and have the patient carry it in his/her pocket. When the question is asked you direct the patient to read the card.

Taking Care of Yourself

Caregivers experience a terrible time planning for their own needs. As the symptoms of their loved ones' illness become more pronounced and more demands made on their time, caregivers often neglect social relationships, physical and emotional health. This experience can produce depression, anger, guilt, isolation, and physical illness. Moreover friends and families may expect this degree of self-sacrifice as a part of the marriage vows or their perception of familial obligations.

You must be your own advocate in meeting your needs. This is not selfish. Taking care of yourself is the most important thing you can do to take care of your loved one. Some suggestions:

• Eat right — make sure you get a balanced diet
• Get adequate rest
• Drink plenty of fluids
• Exercise at least 3 times a week
• Make sure you get annual health screenings
• Get flu and pneumonia vaccinations
• Get out with friends and by yourself regularly
• Make sure you have some time alone each day
• Attend support groups and keep in touch with professionals

Expect family conflict during this time. Most families argue to create enough energy to cope. Each member will go through stages of grief — at their own pace. Try to keep the arguments fair and seek help from a family therapist if needed.

Support Groups

Many people find support groups very helpful, while others feel embarrassed. Look in the telephone book under "Alzheimer's Association" to find the groups nearest to you. It may take a few tries before you find a group you like, but it is well worth the effort. Sometimes talking with other people who are experiencing similar problems and understand your concerns is invaluable. No one fully understands what it is like to live with someone with memory loss until they have done it.

Many support groups offer services for the patient: respite while the caregiver attends the meeting; support groups for patients; and/or allow patients to attend with their caregiver.

Watch your local newspaper for announcements of special speakers and events. A support group can be an invaluable new resource for making friends and social contacts. Events such as Memory Walks can involve you and your loved one in positive social events that will reduce your sense of isolation and help you to continue to feel engaged in your community.

On-Line Support

For those who have access to a computer, there are numerous home paces and information sites for neurological diseases. One valuable resource for people with memory loss is the Alzheimer Net. Run by the Alzheimer's Disease Research Center at Washington University in St. Louis, this free site is accessed by sending e-mail to the following address:

Address: majordomo@wubios.wustl.edu
Title: (none)
Message: subscribe ALZHEIMER

You will receive a confirmation notice with a phrase that must be copied and returned. Once that is done you belong to a support group staffed by laypersons and professionals. You can simply read the messages or participate by sending or replying to messages.

While you may not have a computer, or may be uncomfortable participating, others in your family might benefit from this free service. Many adult children copy postings from the support group for caregiving parents who are intimidated by computers.

Legal/Financial Affairs

Legal and financial issues are critical during this disease. At a certain point the patient can no longer be counted on to make informed decisions. Someone will need to be empowered to do this when the time comes. Many couples assume they will be able to step in for their loved one, write checks, sell property, obtain medical records, etc.. This is not the case in most states.

Early planning is needed to prepare for when this type of care is needed. An attorney who specializes in elder law, family law, or probate law should be consulted. Standby durable powers of attorney for health care and finances should be developed for when the person is not able to make informed decisions. Such documents require careful thought and planning. There may be additional decision-makers that need to be appointed for the patient in complex family of financial situations. These vary widely from state to state. Seek legal counsel at your earliest convenience to assure that your wishes are recorded and your estate preserved.

Recognize that caring for a loved one with memory loss is often frustrating. Not everything works all the time. Copy the learning guide and try a few things each week. Some will work. Some won't. Those that don't work, may work tomorrow...and those that work today might be ineffective tomorrow. Use the professionals available to you at the Mayo Clinic, Scottsdale and at the Alzheimer's Association nearest you for help and support. Remember we are here for you and want to help however we can to lighten your burden. There are many books to help you during this illness. Most are available from the Alzheimer's Association or can be ordered from your favorite bookstore.

Please copy this booklet so you can use it as a constant reference, and share it with your family and fellow caregivers.

Supported by:
Iowa Scottish Rite Masonic Foundation
National Caregiving Training Project
University of Iowa College of Nursing
Gerontology Nursing Intervention Center
Research Development and intervention Core

Developed by:
Geri R. Hall, Ph.D., ARNP, CNS
Gerontology Clinical Nurse Specialist

A caregiver under siege reported:

"It is like a switch got thrown yesterday and all h--l broke loose. He even seemed to have the urge to hit me when I was helping him get dressed today."

Aggression can be a normal part of dementing illnesses. It can occur for many reasons, including extra demand, psychosis, a non-Alzheimer presentation, and/or premorbid personality traits. While real physical aggression is relatively rare, verbal aggression or belligerence is relatively common. People with dementia become depressed from time to time, get frustrated, or may not see their deficits as clearly as their caregiver. And the person with the disease is also going through the grieving process, which also involves anger.

Verbal Aggression

People with dementia who are angry don't always become violent or aggressive, however, care should be taken to diffuse verbal aggression before the situation escalates. Some of the more common techniques for diffusing verbal aggression include those listed below. Remember, the goal is to get on the same side of the table as the patient and regain emotional support. You have to suspend your previous notions about right and wrong, and just go with making peace:

• Agreeing - It is impossible to argue with someone who agrees with you. You can agree by seeing someone's point. For example:

  Patient: "I want to drive and you won't let me. The doctor says I can't drive. What does he know? Give me the car keys now!:

  Caregiver: "We can't have you drive with your memory loss, but that is so awful. I can see why you are angry. It is unfair this should happen to you"

  You don't have to give in, but you can acknowledge their feelings and put yourself in the same position. You can see the patient's point of view. It isn't fair.

• Apologizing - Now I know you haven't done anything wrong and you shouldn't have to apologize, but again, we are diffusing an argument here. You cannot argue when a person is being contrite:

  Patient: "You are having an affair. You snuck out while I was napping and slept with the neighbor!"

  Caregiver: "Oh (name), I am so sorry you think that! How hard this must be for you. Know that I would never do anything to hurt you. I love you. I am so sorry you feel this way. How can I make it better?"

  Of course you didn't have an affair, but one of the biggest fears for a person with dementia is abandonment. They know what is happening--even if they can't say it and fear having to leave their home and family. Thus the charges of infidelity are common. When you are apologizing, notice you are not admitting guilt. You are saying you apologize for the way the person feels.

• Playing dumb - "I don't know anything about this. Tell me more? How could this have happened? I don't understand?" These buy a lot of calmness
• Avoid trying to reason and explain. The person's "reasoner" is broken.
• Back off and let time heal the wound.

Physical Aggression

While certainly not a normal part of a dementing illness, violence occasionally becomes a problem. When it occurs, caregivers often report mixed feelings of disbelief, embarrassment, guilt, shame, and more than just a bit of denial.

When you have a loved one who is aggressive toward you, this is a crisis. Suspend everything until the episode passes. This is not the time to get someone dressed for bed or ready for the morning. This is not the time to insist on a shower. When a crisis presents, you want to back off and stay back until help arrives--whether it be medication, a hospitalization, an ER visit or whatever.

It is sort of the idea that when the house is on fire, you don't want to finish breakfast and get dressed before you call the fire department. In a behavioral crisis there are several essential steps:

• Step back. Suspend cares until the crisis is over. Do only what absolutely has to be done, such as food and getting in any mood controlling medications. If you try to intervene with normal activities you are increasing the risk to you and your loved one.
• Use care in body language. Make sure you always approach from the front. Do not turn your back. And make sure you give the person plenty of space. Turn off TV, radio, and stop any extraneous stimuli. Just for now take down family pictures and cover mirrors. This is a crisis and needs special care. Talk in a measured low soft voice. If you have to give directions, make sure they are simple declarative sentences. ("Give me the knife" or "Put the knife down.")
• Do not think because the person calms after a while that it won't happen again. Some basic principles of violence:
  • Violence episodes are time-limited because of the energy expended.
  • As soon as the person regroups their injury and there is a trigger (in the case above it was hallucinations), the violence will reoccur.
  • Untreated violence goes from bad to worse. It does not get better on its own. In every episode of an injured or murdered caregiver, there were warnings...but the caregiver chose not to heed them, often out of disbelief that their loved one would never do anything to hurt them. This is not your loved one acting here. This is disease and it needs quick and effective treatment.

• This is not a time to let family members "vote" on a solution. Much of the serious injury I've seen happened after the family told the caregiver that "it wasn't that serious," "Dad/Mom will get over it," "Dad would never try to hurt you Mom," or "Gee Mom, you are just overreacting."
• Get help immediately. Do not stay alone in the house with a violent person. The patient is in a panic mode and cannot be counted on to inhibit any impulses. Recognize the danger and call the doctor.
  • If you can't get the doctor within an hour, call 911 and head for the nearest ER where the person will be sedated. Once at the ER, do not minimize the episode. "Gee, I think it only happened once, and I probably caused it because I tried to give him applesauce for breakfast."
  • Make sure you have a prescription for a mood controlling medication and a psychiatry appointment for follow-up in the next day or two before you agree to take the person home.
  • Many times the police coming is reassuring to the patient as he/she is terribly frightened. The uniform can work wonders. Do not be embarrassed to call, but if the police think the episode is over because the person calms for a few minutes, forget that thinking. As soon as they leave there is a good chance, there's an excellent chance the fear will start again. Insist on an ER visit.

• If you live alone with the person, make sure you have a Lifeline (panic button) so you can call for help. Patients who are violent rarely hand you the phone or act out in close proximity to the phone. Moreover, most could not dial for help in an emergency.
• Act defensively. Plan an escape route. Lock yourself away from a violent patient and take the cordless phone. Never be without your cordless phone.
• The caregiver in the closet phenomenon may seem absurd, but I'd rather have my caregiver in a closet with a cordless phone than out trying to fend off a person who is out of control.
• If the person is violent it is far more likely to start at night. Move to another bedroom and make sure you can lock it in case the person comes after you. Two of my caregivers woke to find their loved one standing over them and beating them.
• Make sure that you are at least standing up if the loved one wakes you. Get out of the bedroom you share. This alone could save you serious injury. A patient in this situation is not thinking about the warm snuggle of a spouse or even abandonment by a spouse. They are fearing for their lives and you are part of the problem.
• Remember, anything can be used as a weapon. There should be no guns in the house at all, not even in a locked cabinet. Fireplace pokers and knives should be stored out of sight. Your loved one is panicked at this point and may use a book, alarm clock, letter opener, or even a small table to injure you. Minimize potential weapons in the house and make sure you watch for anything that might be used. Never turn your back on someone who is violent.
• Do not refuse mood controling medication! There is this myth that if we are only good enough, only kind enough, the patient will respond. While there are few patients who become violent, you need to treat it medically. Worry about tapering the medications after a few weeks of good behavioral control.
• Do not blame yourself. This just happens some time. No one is going to think it is you that caused this. Do not try to avoid treatment because it might be socially stigmatizing. It is better to seek help in a timely manner than to have your loved one become remembered as ___, who injured his/her family!
• Realize that if it happened once, it will happen again.
• Never never let an angry or violent person drive, as the car can/will become a weapon. If the person takes the car to go out looking for a real or imaginary enemy, call the police to stop them if you have to.
• Do not rule out a psychiatric admission. Go for the best center you can find and let them treat the person, which may mean a brief period of zombification. Make sure you play an active role in treatment, not by refusing medications but by asking "What now?" If your loved one is zombified, you can't take them home like that, but also recognize that there are some people who cannot be let up from medications. Know that if you have someone with Lewy Body Disease, you cannot stop and start the medications or even try to taper a dose that is effective. With Lewy Body disease, once you taper and the symptoms start again, there is an excellent chance the higher dose will no longer work.

Last--print this out. If you have any inkling of aggression, give a copy of this to your family and doctor. That way they know you are not being crazy or overreacting.

After grappling with the difficult tasks of caregiving to your loved one at home, you may find it necessary to place him/her into a residential care facility. Once you have selected the appropriate facility for your elder, be it an assisted living facility or nursing home, all of you will have to deal with the challenges of adjusting to new routines.

Some facilities have a "30 Day Rule," which allows them to decide whether your elder "fits in" with their facility. The 30 Day Rule seems more than fair to me. If a patient is going to show signs of adjustment the facility will be able to make the appropriate decision. This protects the facility from having to keep people they absolutely can't manage in their environment and who might injure other residents.

The vast majority of people with dementia have difficulty with adjusting to a new home environment. For at least two weeks the person can't find things, is besieged with new people and routines, and has feelings of frustration and/or anger. There are some ways to help your loved one adjust:

• Expect agitation for 2-3 weeks. You might ask your elder's doctor for a light prescription for Ripserdal, Haldol, or Seroquel and use it for a few weeks (in a very light dose) before the placement. The patient may be confused, but not upset and agitated.
• Do not necessarily avoid visiting for two weeks, even though the facilities suggest this. Follow a formula something like the following:
  • Expect the person to be agitated and angry, but stop beating yourself up about it. You did what had to be done. Your loved one needs to grieve. To expect happiness is unrealistic.
  • Plan a breif visit. 10-15 minutes will be enough for you to know your loved one is well-cared for and to give them reassurance. A three-hour visit is going to cause agitation. If the loved one demands to be taken home, do not try to explain. Look at your watch and say, "I have to go now." It will break your heart, but will minimize the behavior after a few times. Many patients start the "take me home" stuff after a 30-minute visit when they get tired. Take it as an indication that it is time to go.
  • Take something to do. Do their nails, have a snack, listen to a new piece of music or share an activity. Once you are done, it is time to go. Have the staff divert your loved one to an activity such as a meal.
  • Call before you come so you know what kind of day your loved one is having. If you know they are agitated and having a bad day and if you can't face it without becoming upset, don't go when they are agitated . . . or go later.
  • Talk with the staff. Smile. Find the staff doing something right and compliment at least one person on each visit. There is nothing worse than the family who comes in with their microscope looking for flaws. They will become apparent soon enough--we are talking working with demented adults here.
  • Know that the facility and staff have no magic for dealing with behavior problems. If it was difficult to manage at home, it will be worse in the care facility--especially with several other people who are also demented.
  • Before you leave, talk with an administrative staff member to see how things are going and what you (as a team) can do to improve care throughout the adjustment.
  • I can not stress this too much: select an activity-based program. And, if your loved one is not a socializer, make sure the staff knows to let him have some time to himself daily and introduce him slowly to the group.
  • Last, do not let the adjustment period dissuade you from the placement. It most likely will work out.

ALZ Well
Alzheimers caregivers page.
http://www.alzwell.com/

Alzheimer Disease
Information about the disease including prevalence and heredity.
http://www.geneclinics.org/profiles/alzheimer/

Alzheimer Europe
Alzheimer Europe (AE) is a non-profit organization which aims to improve the care and treatment of Alzheimer patients.
http://www.alzheimer-europe.org/

Alzheimer Research Forum
A non-profit organization supporting the information needs of researchers and to promote openness and collaboration with colleagues worldwide.
http://www.alzforum.org/

Alzheimer Society of Canada
Information on the Alzheimer Society, the disease, care, research, news, events and more.
http://www.alzheimer.ca/

Alzheimer's Association
Resources on Alzheimer's research, treatment, and news.
http://www.alz.org/

Alzheimer's Association - Big Sioux Chapter (Serving Western Iowa)
http://www.alz-sioux.org/

Alzheimer's Association - East Central Iowa Chapter
http://www.alzeci.org/

Alzheimer's: Few Clues on the Mysteries of Memory
http://www.fda.gov/fdac/features/1998/398_alz.html

Cognitive Enhancement Research Institute
Smart Drug News chronicles the latest developments in the field of cognitive drugs and related technologies.
http://www.ceri.com/

Elderweb
A listing of sites with information pertaining to Alzheimer's Disease.
http://www.elderweb.com/default.php3?PageID=770

Last Reviewed 2005

Source: Geriatric Education Center

Disclaimer: This content is reviewed periodically and is subject to change as new health information becomes available. The information provided is intended to be informative and educational and is not a replacement for professional medical evaluation, advice, diagnosis or treatment by a healthcare professional.