Section 7

Caregiver Issues

Are you a Healthy Caregiver?

Are you so committed to caregiving tasks that you may have neglected your own physical, mental, and emotional well-being? The following questions can help you determine if you are putting your health at risk.

Do you visit your physician annually?
The best thing you can do for the person with Alzheimer's disease is to stay healthy. Respect what your body is telling you. Take exhaustion, stress, sleeplessness and changes in your appetite or behavior seriously. Ignoring these symptoms can cause your physical and mental health to decline. And, if you are a woman, your role as an Alzheimer's caregiver is most likely occurring at a time in your life -- often during menopause or after menopause -- when you need to pay even closer attention to your own health. Various treatments, such as estrogen replacement therapy and calcium supplements, can be beneficial in protecting a woman's health later in life. You should discuss these treatments and other health matters with your doctor.

Do you accept assistance from others?
You can't do everything. Attempting to handle everything yourself will only lead to burnout, depression, and resentment toward the person for whom you are caring. You are not failing as a caregiver by asking others for assistance. When friends and family offer help, accept it. Also look into community resources that offer respite from caregiving responsibilities.

Do you talk to others about your feelings?
You may think that no one understands what you are going through. Holding in your feelings, however, will only make you feel isolated and emotionally neglected. Sharing your experiences with others may help you put things into perspective.

Take care of yourself!

There are seven simple steps you can take to ensure that you are a healthy caregiver:
  1. See your physician regularly.
  2. Get screened for stress and depression.
  3. Get plenty of rest.
  4. Eat well-balanced meals.
  5. Exercise regularly.
  6. Accept help from others.
  7. Call the Alzheimer's Association.
The Alzheimer's Association -- an important resource for caregivers.
The Alzheimer's Association's network of chapters provides support and programs to help reduce caregiver stress. The Association offers:
  • Support groups and telephone helplines, so that you have an outlet to express your feelings to others who are also affected by the disease.
  • Referrals to local resources, such as physicians and clinics who specialize in diagnosing and treating Alzheimer's disease; respite and long-term care services; financial and legal counseling; and government and community organizations.
  • Educational resources, including brochures, newsletters, videos and a Web site that offer advice for caregivers.
  • Ways to become involved in advocacy efforts that have helped to increase research funding and change how families of people with Alzheimer's disease are reimbursed for care services.
Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Common Negative Feelings Experienced by Caregiver Families

  • Anger…
    • At the family member with Alzheimer's disease
    • At themselves, the caregivers
    • At other family members and friends
    • At health care professionals
    • At God
  • Denial…
    • Of the disease itself
    • Of the need for assistance
  • Depression…
    • Over the lost relationship with the Alzheimer's person
    • Over the loss of family continuity
  • Fear…
    • Of the genetic consequences
    • Of the future
  • Guilt…
    • Over past experiences that may have caused the person's condition
    • Over the caregiver's own ability to still enjoy life
    • Over anger with other family members because they live far away, criticize, or prefer to remain uninvolved in caregiving
    • Over negative feelings and/or problems experienced with the Alzheimer's Individual
    • Over the ability or inability to provide adequate care
  • Indecision…
    • About financial and legal issues
    • About medical care
    • About living arrangements
  • Self-pity…
    • Over the unfair circumstances in life
  • Shame and embarrassment…
    • Over the challenging behaviors exhibited by the Alzheimer's person
Sources: Oliver, R. and F. Bock 1987. "Coping with Alzheimer's: A Caregiver's Emotional Survival Guide." New York: Dodd, Mead and Company, Inc. "Just the Facts and More: Grief, Mourning and Guilt." 1992. Chicago: Alzheimer's Disease and Related Disorders Association, Inc.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Coping Strategies for Caregivers

  1. Reinforce your identity separate from the patient's identity.
  2. Always move from your center, not the patient's center.
  3. Tap into your unused, unlimited inner strengths and resources.
  4. Continually acknowledge all feelings - both positive and negative. Reinforce positive feelings.
  5. Be responsible and take control.
  6. Get information and get help.
  7. Work out your own plan for surviving whole.
  8. Accept what cannot be changed.
  9. Eliminate the words "blame" and "excuse" from your vocabulary.
  10. Make not promises about the future.
  11. Explore and face the worse possible events in your future.
  12. Use respite care regularly for extended blocks of time.
  13. Develop an emotional detachment from your caregiving tasks.
  14. Train yourself to be pro-active rather than reactive.
  15. Enjoy humor regularly. Humor assists the immune system.
  16. Get a support system that works for you.
  17. Be flexible, willing to learn, to adapt, to change and grow at any age.
  18. "Regroove" your brain with positive reinforcement.
  19. Develop an exercise regimen for both the body and soul.
  20. Look for the small joys.

Source: Lela Knox Shanks, 1994

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Hallmarks of Good Caregiving

  1. Work out your own individual plan for survival.
  2. There is no one right way, just YOUR way.
  3. Our loved ones may not know who we are, but WE know who they are.
  4. The patient has no control over what is happening to him or her.
  5. You cannot reason with dementia.
  6. There are workable solutions to every problem.
  7. Persons with Alzheimer's disease can still learn.
  8. Creativity is infinite.
  9. The person with Alzheimer's disease continues to be a human being.
  10. Find the hidden treasure in Alzheimer's disease.

Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Driving

Driving is a complex activity which necessitates quick reactions, clear sensory abilities, and split-second decisions. For the person with Alzheimer's disease, driving becomes a safety issue. While he or she may not recognize that changes in cognitive and sensory skills impair driving abilities, you and other family members will need to be firm in your efforts to prevent the person from driving.

Considering the person's feelings of loss of independence can aid families in their actions to help the person understand why he/she can no longer drive safely. Assisting the person with dementia to make the decision to stop driving can be useful in helping to maintain a positive sense of self-esteem.

Study results

To better understand the effects of Alzheimer's on driving, research is focusing on people with early Alzheimer's disease. Results from studies conducted at Johns Hopkins University and at the National Institute on Aging (NIA) support the belief that people should not be allowed to drive after a diagnosis of Alzheimer's disease.

In the Hopkins study, more than 40 percent of patients studied had been in an accident after a diagnosis of the disease. In addition, 11 percent had caused accidents; 44 percent had gotten lost routinely; and 75 percent continually drove below the speed limit.

In California, preliminary road and laboratory studies (at Sepulveda Veterans Administration Medical Center and University of California at Los Angeles - UCLA) indicate that even persons with early Alzheimer's have markedly eroded driving skills.

As a caregiver, it is important that you take time to evaluate the person's driving ability and be aware of methods you can use to discourage the person from driving.

Action Steps

Assess the person's ability to drive.
  • Consider having the impaired person's driving ability tested. Some state agencies have special drive tests to determine how well a person sees, judges distance, and responds to traffic. Ask the person who administers the test to explain the results to you and the person with Alzheimer's.
  • Look for signs of driving problems. Be concerned if he forgets how to locate familiar places, doesn't observe traffic signs, makes slow or poor decisions in traffic, drives at an inappropriate speed, or becomes angry or confused while driving.
  • Learn about your state's driving regulations. In some states, such as California, the physician must report a diagnosis of Alzheimer's to the health department, which then reports it to the department of motor vehicles. That agency then may revoke the person's license. Your local Chapter of the Alzheimer's Association may have information available on driving regulations in your state.
Strongly discourage driving if the person with dementia cannot drive safely.
  • Instead of allowing the person to drive, tell him or her that you can drive or arrange for someone else to drive. If you don't know how to drive, investigate drivers' education courses and defensive driving programs designed for adults. For more information on these courses, contact the American Association of Retired Persons (AARP).
  • Solicit the support of others. Ask your physician to advise the impaired person not to drive. Involving your physician in a family conference on driving is probably more effective than trying by yourself to persuade him/her not to drive. Ask the physician to write a letter stating that the person with Alzheimer's must not drive. Or ask the physician to write a prescription that says, "No driving." You can then use the letter or prescription to tell your family member what's been decided.
  • Ask a respected family authority figure or your attorney to reinforce the message about not driving. Also ask your insurance agent to provide documentation that your loved one will no longer be provided with insurance coverage.
  • Experiment with ways to distract the person from driving. Mention that someone else should drive because you're taking a new route; because driving conditions are dangerous; because he/she is tired and needs to rest. Tell him that he/she deserves a chance to sit back and enjoy the scenery; or that you don't want him/her to drive because you're concerned about his safety. You may also want to arrange for another person to sit in the back seat to distract your family member while someone else drives. If the disease is in an advanced stage, or there is a history of anger and aggressiveness, it's best not to drive alone with the person.
  • Control access to the car keys. Designate one person who will do all the driving and give that individual exclusive access to the keys.
  • Disable the car. If the person with Alzheimer's is insistent about driving, remove the distributor cap or the battery or starter wire. Or ask a mechanic to install a "kill wire" that will prevent the car from starting unless the switch is thrown. Or give the person a set of keys that looks like her old set, but that doesn't work to start the car.
  • Move the car. Drive the car to another block, a neighbor's driveway, a private garage or lot.
  • In some states it might be best to alert the Department of Motor Vehicles. Write a letter directly to the authority and express your concerns, or request that the person's license be revoked. The letter should state that "(the person's full name) is a hazard on the road," and offer the reason (Alzheimer's disease). The state may require a statement from your physician that certifies the person is no longer able to drive.
  • Substitute the person's driver's license with a photo identification card. Take no chances. Don't assume that taking away her driver's license will discourage driving. The person may not remember that she no longer has a license to drive, or even that she needs a license.
  • Consider selling the car. By selling the car, you may be able to save enough in insurance premiums, gas, oil and maintenance costs to pay for public transportation, including taxicab rides.
  • Be firm and positive about driving. Avoid arguing with the person, or giving long explanations for why he/she cannot drive. Spend your time and energy helping to preserve the person's dignity by focusing on the activities he or she can still do and enjoy.
References
  • Lucas-Blaustein, M.J., et al (et alia). (1988). Journal of American Geriatrics. 36:1087-1091.
  • Friedland, R.P., et al (et alia). (1988). Annals of Neurology. 24:782-786.
  • Fitten, L.J., et al (et alia). (1991). Gerontological Society of America, Annual Meeting. Abstract.
Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was L. Jaime Fitten, MD, Associate Professor Psychiatry and Medicine/Geriatrics, UCLA (University of California at Los Angeles) School of Medicine and Chief Geriatric Psychiatry, VA (Veterans Administration) Medical Center, Sepulveda, California.

Special thanks to the following Chapters of the Alzheimer's Association:
Northern Virginia; Greater Philadelphia; Midlands Chapter (formerly Omaha and Eastern Nebraska); Honolulu, Hawaii; New York City.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Telling the Patient, Family and Friends

When you learn that a member of your family has Alzheimer's disease, you may become overwhelmed by feelings of confusion, guilt and loneliness. Moreover, as you assume the role of caregiver, you may feel hesitant to reveal the diagnosis to the rest of the family, to friends, and - perhaps most importantly - to the person with the disease, for fear their reactions will be difficult to manage. Following are some guidelines that you may use to decide how to discuss the disease with others.


Action Steps

Consider the person diagnosed.

  • In deciding whether or not to tell the person about the diagnosis, respect his/her right to know what's wrong, but also be sensitive to the person's feelings and emotional state, medical condition, and ability to remember, reason and make decisions.
  • Keep in mind that the person with Alzheimer's may suspect that something is wrong long before a doctor reaches a diagnosis. If you fail to give her any explanation, she may assume the worst. On the other hand, if you discuss the problem with her, she may feel relieved to learn that she has a physical illness, rather than a psychological one. Furthermore, the informed person may be able to participate in important medical, legal, financial and personal planning depending on the progression of the disease symptoms.
  • Rely on professional experience. You may want to inform the person about the diagnosis through a "family conference" with the patient, other caregivers and a social worker. You may also want to involve a physician who has experience working with cognitively impaired individuals.
  • Be sensitive to the person's reaction. He may not be able to understand all that the diagnosis means or he may deny your explanation. If this is the case, it's probably best to accept his reaction and avoid further detailed explanations of the disease.
  • Reassure the person. Let the person know that you'll provide ongoing help and support, and do all you can to make your lives together fulfilling.
  • When you sense the time is right, provide the person with follow-up information you feel she would benefit from knowing, such as an explanation of symptoms and the importance of continued care. For example, you may say, "Mom, because of your memory and other problems, you may have to let people help you more than you have in the past." (Note: You don't have to use the phrase "Alzheimer's disease" if you think it might upset the person.)
  • Treat the person as an adult, and don't downplay the disease. As the disease progresses, remain open to the person's need to talk about his illness. The person may ask you about such activities as working, driving, or managing finances. Or the person may want to express such feelings as anger, frustration, and disappointment. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance.

Inform family and friends.

  • Be honest about the person's condition. You'll probably feel relieved after discussing the disease with other family members and close friends. Be sure to explain that Alzheimer's is a medical condition and not a psychological or emotional disorder or contagious virus.
  • Provide others with adequate information on Alzheimer's disease, including a description of common symptoms. The more family and friends learn about the disease, the more comfortable they may feel around the person. Share educational material from the Alzheimer's Association, such as the brochure, "When the Diagnosis is Alzheimer's." You may also want to invite close friends and family members to accompany you to a support group meeting sponsored by a local Chapter of the Alzheimer's Association.
  • Don't leave yourself out of the conversation. Explain how the responsibility of caregiving has affected your life or may change your life in the future, so that others will have a better sense of how they can help.
  • Ask for family support. Have several tasks in mind for people who say, "Please let me know if there's anything I can do to help you." Involving others in caregiving will help them better understand your situation and why you've made certain decisions.
  • Ask people to come for short visits, but suggest they call you before stopping. Keep in mind that the person may become anxious if too many people visit at one time. In addition, recommend specific activities such as playing a simple game, taking a walk, or looking through a book of photographs with the person.
  • Don't overlook the role of children and teenagers in the life of your family member. Young children often are able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the person or share some of your responsibilities.
  • Inform neighbors about the person's condition. Even if you've never socialized with your neighbors, they'll appreciate knowing the truth about the person's condition. They may have already observed the family member wandering through the neighborhood or acting strangely. If they understand the diagnosis, they'll be more likely to call if they sense the person needs help. Or they may volunteer to help you in an emergency.

Be true to yourself and to the person with Alzheimer's.

  • Realize that some friends and even some family may drift out of your life. Some people may feel uncomfortable around the impaired person while others may not want to get involved in caregiving. Don't let these attitudes interfere with your commitment to caring for your family member and for yourself.

 

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RN.C., Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Dallas, Texas; Eastern Massachusetts; Honolulu, Hawaii; Northern Virginia; Puget Sound, Washington; St. Louis, Missouri; and Western North Carolina.

Other resources include:
  • Donna Cohen, Ph.D., and Carl Eisdorfer, Ph.D., M.D. (1986). "The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders." New York: New American Library.
  • "When the Diagnosis is Alzheimer's." Alzheimer's Association, 1990.*
  • "If You Have Alzheimer's Disease: What You Should Know, What You Can Do." Alzheimer's Association, 1991.*
  • "Alzheimer's Disease: Especially for Teenagers." Alzheimer's Association. 1987.

* These materials are available through your local Chapter of the Alzheimer's Association.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Long Term Care Is a Woman's Issue

Women Are the Caregivers

  • Seventy percent of unpaid caregivers are women.
  • The average woman can expect to spend more time caring for an elderly parent than she spends caring for a child.
  • Thirty-five percent of women caring for the elderly are over 65, and 10 percent are over 75.
  • One woman in five has a parent living with them, and more than 50 percent of caregivers work outside the home.
  • Ninety-three percent of the 1.5 million long term care workers in the United States are women.

The Effects of Caregiving on Women

  • Caregiving is hard physical work that increases a woman's chances of injury.
    • One in eight Alzheimer's Disease family caregivers becomes ill or injured as a direct result of caregiving.
    • One in three use medication for problems related to caregiving.
  • More than 50 percent of caregiving women experience depression, anxiety, exhaustion, and feelings of helplessness.
  • Caregiving responsibilities can also endanger a woman's future economic security.
    • Time away from the job to care for a family member with a disability or chronic illness is reflected in lower wages, lower Social Security benefits, and higher health costs.

Women Need Long Term Care

  • Seventy-five percent of all nursing home residents 65 years or older are women.
    • The typical nursing home resident is an 85-year-old woman who enters a nursing home because she lives alone or no caregiver is available.
  • Eighty percent of the elderly living alone are women.
  • Seventy-five percent of the elderly are women unable to pay for long term care or to purchase long term care insurance.
    • In 1990, the yearly median income of women 65 years and over was $8,044.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Options for Caregivers

  • Support Groups
  • Education
    • Materials
    • Seminars
    • Caregiver Training
  • Home Health Agencies
  • Respite Care Programs
    • In-home
    • Short-term stay out-of-home
    • Adult day care
  • Informal Support Network
    • Family
    • Friends
    • Neighbors
    • Church/Synagogue
  • Community Social Services
    • Mental health
    • Hospice
    • Home-delivered meals
    • Case management
  • Long-term Care
  • Do It All Alone…


Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Organization: A Key to Caregiving

Adapted from "Long Distance Caregiving: A Survival Guide for Far Away Caregivers." Courtesy of Alzheimer's Association, St. Louis Chapter.
Paperwork is an inevitable element of caregiving. Service providers require financial information and health professionals require insurance information and completed medical forms. As a caregiver, you will want to locate all legal, financial and insurance documents, which belong to your loved one. In most cases, locating, reviewing and organizing documents is time-consuming and tedious. You may not know where certain information is located. In the case of persons with Alzheimer's disease, the paperwork may not be filed where it normally would be for your loved one. If this is the case, you may find yourself sorting through piles of papers located in different places, both inside and outside of the house. Listed below are a few common places to look for records:
  • File cabinets
  • Dresser or desk drawers and closets
  • Attic, garage and basement
  • Under the bed
  • Scrapbooks
  • Safe deposit box or safe
  • Attorney's or accountant's office
  • Another relative's home
  • The home of the executor of the will
To help you organize your search, you may consider developing a care log that itemizes the location and status of various documents. Once you have found certain papers, you will want to keep track of where they are located and what action needs to be taken. The care log below is an example of the type of information you may need to collect.

Sample Care Log
LA - located and available UD - needs to be updated C - make a duplicate
LN - located, but not available GD - get document L - lost, request duplicate

DOCUMENTS

STATUS

COMMENTS
Legal documents    
Birth Certificate
________
 
Social Security card
________
 
Marriage license(s)
________
 
Divorce decree(s)
________
 
Military records
________
 
Will
________
 
Living will
________
 
Power of attorney
________
 
Health care power of attorney
________
 
Legal agreements
________
 


Financial documents

Checking account
________
 
Savings account
________
 
Retirement account
________
 
Stock certificates
________
 
Savings bonds
________
 
Real estate deed/title
________
 
Automobile title
________
 
Investment income
________
 
Other income
________
 
Mortgage statement
________
 
Property tax statement
________
 
Lease agreement
________
 
Utility & phone statements
________
 
Doctor/hospital bills
________
 
Credit cards
________
 


Insurance documents

Auto
________
 
Homeowners
________
 
Life insurance
________
 
Medicare
________
 
Medigap
________
 
Long-term care
________
 
Disability
________
 
Liability
________
 

 

Other ________________________________________

Other ________________________________________


Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Positive Aspects of Caregiving

  • Caring for someone you love.
  • Being needed.
  • Feelings of accomplishment
  • Finding personal strength and courage previously unknown.
  • Families become closer.
  • Character building - patience, forgiveness, and humor.
  • Learning to value the present.
Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Services You May Need

There are many types of services available to assist you throughout the course of Alzheimer's disease. Although you may not need all these services immediately after receiving a diagnosis, it's important to identify what's available in your community. Call your local chapter of the Alzheimer's Association to find resources in your area.

Medical Services. Families report they are most satisfied with a specialist who is well informed about Alzheimer's disease. This may be a neurologist, geriatrician, psychiatrist or a family doctor who is experienced in treating people with the disease.

Legal Services. Legal planning should begin soon after a diagnosis has been made. Planning should involve putting together documents that authorize another person to make health care and financial decisions, including plans for long term care coverage. An attorney can explain issues related to durable power of attorney for health care and finances, living wills and trusts, future medical care, housing and other key considerations. There are elder law attorneys who specialize in issues affecting older adults. If the person with Alzheimer's has the legal capacity - the level of mental functioning necessary to sign official documents - he or she should actively participate in legal planning.

Financial Services. Important financial decisions will have to be made throughout the course of the disease. Attorneys, accountants and financial planners can help. If possible, include the person with Alzheimer's in the discussions. Financial assistance and health care benefits may be obtained through several government sources. There are two types of entitlement programs that persons with Alzheimer's may apply for: those that provide income and those that help pay for medical expenses. Some of these include Social Security Disability, Supplemental Security Income, General Public Assistance, Medicare and Medicaid. Contact the government agency involved directly or your local Alzheimer's Association chapter for information.

Helpline. The Alzheimer's Association Helpline is staffed by trained volunteers experienced in issues relate to the disease. Helpline specialists are available to offer ongoing support, suggest tips for caregiving, and provide specific information on resources that may help you.

Support Groups. Your local chapter of the Alzheimer's Association also provides support groups for caregivers and family members throughout the disease process. In some cases, support groups may be available for persons with the disease. You can talk with others who are experiencing similar situations in a safe, nonjudgmental group setting.

Information. You can find information on everything from diagnosis and treatment to caregiving and support groups through the Alzheimer's Association. Most chapters make available an extensive collection of brochures, books and videos. You can also find information on the Association's web site at www.alz.org

As the disease progresses, you may need help with providing care. Care services generally fall into the categories of respite care, residential care and hospice. The Alzheimer's Association can assist you in determining what type of care is available in your community.

"Respite Care" refers to a short time of rest or relief. It allows caregivers a break from day-to-day duties and provides the person with Alzheimer's opportunities to interact with others. Three types of respite care most commonly available are:
  • Day services. Programs in adult day centers can give the person with Alzheimer's an opportunity to socialize with others, exercise and engage in simple activities.
  • Home care. Visiting nurses, home health aides, homemakers and volunteers can provide services at home such as bathing, dressing or companionship while you go out for a while.
  • Residential Respite. Some hospitals, nursing homes and other residential facilities offer short-term stays of a few days or a few weeks.
Residential Care. The type of residential care you may need will probably vary depending on the stage of the disease. Housing services are generally grouped in two categories:
  • Assisted Living. Also known as board and care homes, assisted living is a term for residential care settings that combine housing, personalized supportive services and health care. These setting offer more services than independent living but fewer than a skilled nursing facility.
  • Skilled Nursing. Also known as nursing home care, this type of care provides an intermediate or skilled nursing setting for those who require more services. Some are designed to provide specialized care for persons with dementia.
Hospice services. Designed to help people near the end of life, hospice programs combine at-home and skilled nursing services. Today, more hospices are offering specialized programs for persons with Alzheimer's disease.

Other Support Services. Other support services may be available from your local Department on Aging, Department of Health, senior citizens' agency, religious-affiliated service agencies and patient education departments of hospitals. Also, private physicians, social workers, nurses, psychologists and counselors may provide such services.

Additional Resources:
If You Have Alzheimer's Disease: What You Should Know, What You Should Do

Especially for the Alzheimer Caregiver

 Caregiver Stress: Signs to Watch for, Steps to Take

Steps to Understanding Legal Issues: Planning for the Future
Someone to Stand by You ©1998. Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved. Alzheimer's Association, 919 North Michigan Ave., Suite 1000, Chicago, Illinois, 60611-1676 1-800-272-3900 TDD (Telecommunications Device for the Deaf): (312) 335-8882. http://www.alz.org, e-mail: info@alz.org.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Surrogate Decision-Making in Nebraska

  1. ORGANIZING DOCUMENTS
    Locate, review and revise, if necessary:
    • Insurance policies
    • Deeds to real estate
    • Certificates of deposit
    • Stocks and mutual funds
    • Wills
      • No legal authority during a person's lifetime
      • Property is distributed after death
    • Government benefits
      • Medicaid or SSI eligibility
      • VA benefits
  2. NON-HEALTH CARE DECISIONS
    1. Durable Power of Attorney

      1. Definition:
        A power of attorney is an instrument in writing by which one person, as principal, appoints another as his agent and confers upon him the authority to perform certain specified acts or kinds of acts.

        "Durable" language is that language showing the intent of the principal that the authority conferred shall be exercisable notwithstanding the principal's subsequent disability or incapacity.

      2. Statutory Authority:
        Uniform Durable Power of Attorney Act, Sections 30-2664 to 30-2672. Nebraska Short Form Act, Sections 49-1501 to 49-1561
      3. Scope of Authority:
         The authority given to the agent, known as the "attorney-in-fact," may be for a limited purpose such as depositing checks and paying bills, or the authority may be general which would allow the person to do almost everything the principal could do if acting on his own behalf.

        NOTE: Gifting is NOT allowed unless power is specifically granted.
      4. Revocation:
         A power of attorney may be revoked at any time, as long as the principal remains competent, by simply notifying the attorney-in-fact in writing.

        Death of the principal acts as revocation as soon as the attorney-in-fact receives notice of the death.


    2. Guardianship
      1. Definition:
        The appointment by the court of an individual, known as a guardian, to assume decision-making and handle the affairs of an individual, known as the ward, whom the court has found to be incompetent or incapacitated.
      2. Procedure:
         Nebraska Revised Statutes, Sections 30-2617 to 30-2629.
        1. File petition in your county court
        2. Written notice served by the sheriff
        3. Guardian appointed
        4. Hearing
        5. Letter of guardianship issued by the court

      3. Scope of Authority:
        1. Selecting abode
        2. Arranging for medical care
        3. Protecting personal effects
        4. Giving necessary consent, approval or release
        5. Arranging for training, education or other rehabilitating services
        6. Applying for private or government benefits
        7. Instituting proceedings to compel support, if no conservator
        8. Entering into contractual arrangements, if no conservator
        9. Receiving money for expenses, if no conservator

    3. Conservatorship
    1. Definition:
       The appointment by the court of an individual, known as a conservator, to assume management of property and financial affairs of a person whom the court has found to be unable to manage his or her property and property affairs effectively for reasons such as mental illness, mental deficiency, physical illness or disability, chronic use of drugs, chronic intoxication, confinement, or lack of discretion in managing benefits received from public funds…AND that person has property which will be wasted or dissipated unless proper management is provided.

    2. Procedure:
       Nebraska Revised Statutes, Sections 30-2630 to 30-2643.

      1. File petition in your county court
      2. Written notice served by the sheriff
      3. Hearing

    3. Scope of Authority:
      The court has all the powers over the estate and affairs which the protected person could exercise if present and not under disability, except the power to make or alter an estate plan. Including the power to:
    1. Make gifts (only after hearing and notice)
    2. Convey or release interests in property (only after hearing and notice)
    3. Exercise or release powers as trustee
    4. Enter into contracts
    5. Create revocable or irrevocable trusts (only after hearing and notice)
    6. Exercise options to purchase securities or other property
    7. Elect options and change beneficiaries under insurance (only after hearing and notice).

  3. HEALTH CARE DECISIONS
    1. Health Care Power of Attorney

      1. Definition:
         A health care power of attorney is a document which appoints an individual to make health care decisions on behalf of the principal should that individual become unable to do so.

        In Nebraska, the Health Care Power of Attorney Act, Sections 30-3401 to 30-3432, provides the framework for these documents.

      2. Execution:
        1. Must be in writing
        2. Identify the principal, attorney-in-fact, and successor
        3. Specifically authorize health care decisions
        4. Include date of execution
        5. Signed by two witnesses and notary public

      3. Scope of Authority:
        The attorney-in-fact has no authority to withhold or withdraw consent to routine care necessary to maintain patient comfort or the usual and typical provisions of nutrition and hydration. The attorney-in-fact shall not have the authority to consent to the withholding or withdrawing of a life-sustaining procedure or artificially administered nutrition or hydration unless explicitly authorized by the document.
      4. How It Becomes Operative:
        1. Incapacity - defined as the inability to understand and appreciate the nature and consequences of health care decisions, including the benefits of, risks of, and alternatives to any proposed health care or the inability to communicate in any manner an informed health care decision.
        2. The attending physician and any consulting physician make the determination of incapacity in writing.
        3. The document remains in effect until the principal dies, until revoked, or until the attorney-in-fact withdraws. A decision made by the attorney-in-fact may be revoked at any time by a principal who is competent and in any manner by which the principal is able to communicate intent to revoke.


    2. Living Will
      1. Definition:
         A living will is simply a written declaration regarding an individual's wishes if life-sustaining medical treatment should become necessary. In Nebraska, the Rights of the Terminally Ill Act, Sections 20-401 to 20-416, gives the framework for living wills.

      2. Execution:
        1. Must be an adult of sound mind
        2. Signed in the presence of two witnesses and notary public


      3. How It Becomes Operative:
        1. Communicated to the attending physician
        2. Declarant determined to be terminal or PVS (persistent vegetative state)
        3. Physician determines declarant unable to make decisions
        4. Notification of intent to invoke Living Will
        5. May revoke at any time and in any manner

    3. Advance Directives - Federal Involvement
       Under federal law, health care providers such as hospitals and nursing homes are required to inform all patients of their right to execute an "advance directive" such as a Living Will or HCPA (Healthcare Power of Attorney). There is NO requirement under the law that each patient actually executes such a directive.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

To Tell or Not To Tell? A Very Important Question

by Elaine A. Dively, LSW (licensed social worker), Program Coordinator, Alzheimer's Association, Greater Pittsburgh Chapter
As I travel across our six-county area presenting educational programs and visiting support groups, I am often made aware that many caregivers I meet have not shared their situation with neighbors, friends or even family. There seems to be a reluctance to reveal a diagnosis of Alzheimer's, or any other form of dementia. I can understand this reluctance because there is a need to protect those whom we love. If, for example, my husband is becoming quick-tempered and suspicious because of the damage to his brain from Alzheimer's disease, I do not want my close neighbors to see this behavior. I am embarrassed for him. This feeling is understandable.

However, there could be advantages to informing family members and close friends. Here are some important reasons to make others aware.
  • Educating family and friends about the disease may help them feel more comfortable around the person. Personality and mood changes will be easier to handle if others understand why they are happening. Educate others to help them understand that it is the disease, not the person who is causing the changes.
  • Educating family and friends may help them feel more comfortable with what you are dealing with. Friends might attend a support group meeting with you or read educational materials you might have. As a caregiver, you have now opened up the possibility of additional people with whom to share your feelings. No one should face this disease alone.
  • Sensitizing others has a ripple effect. As we educate and allow people to understand the symptoms of this disease, there is a greater chance the disease will be recognized in its earlier stages.
  • Sharing with those around us de-stigmatizes the disease. The earlier the detection, the more beneficial some of the new medications can be. It is also best to address planning, safety and financial issues as early as possible. Alzheimer's is a medical condition, not a psychological/emotional disorder or a contagious virus.
  • Explaining the responsibility of caregiving and how it has affected your life will help others have a better sense of how they can help. Don't hesitate to ask family for support. Have several tasks in mind for people to do. Involving others in caregiving will help them better understand your situation and why you've made certain decisions.
  • Talking with children and teenagers in the family can also help. Young children are often able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the person or share some of your responsibilities.
For more information on how to make others aware, the chapter office has a pamphlet entitled "You Can Make a Difference: 10 Ways to Help an Alzheimer Family." There is also a handout from the Just the Facts collection entitled "Telling the Patient, Family and Friends."

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Two Primary Needs of Caregivers

  1. Information
    1. Alzheimer's Disease (AD) Process
      1. Symptoms, behaviors, stages, etc.
      2. Why AD (Alzheimer's disease) patients behave as they do. Why they wander, hide possessions, etc.
      3. Respite care. What is it? Why caregiver needs it. Adult daycare centers.
    2. Legal
      1. Durable Power-of-Attorney for financial and medical.
      2. See elder law attorney for legal advice.
    3. Financial
      1. Spousal Impoverishment Act of 1989. (Call local Area Agency on Aging office.)
      2. Waivers of income for help with aged in the home. (Call local Area Agency on Aging office.)
    4. Technical
      1. Techniques for successful home management of AD (Alzheimer's disease) patient.
      2. Triggering, cueing, distractions, etc.
      3. Brochures on problem solving and creativity.
      4. Dealing with incontinence.
      5. Dealing with hostility and aggressiveness.
    5. Home modifications
      1. How to use gates, locks, alarms, water shut-off valves, barriers, etc.
    6. Clothing modifications
      1. Use of Velcro® in clothing, etc.
    7. Assistive technology
      1. Availability of wheelchairs, hospital beds, patient lifts, etc. (Call State Vocational Rehabilitation for catalog showing items.)
    8. Nursing Home
      1. Contact State Department on Aging for check lists, evaluations and ombudsman
  2. Counseling
     Personal counseling with mental health professional for:
  1. Developing caregiver's plan for survival.
  2. Management of anger and other negative emotions, (such as fear, self-pity, guilt, blame, shame, grief, etc.)
  3. Refocusing and reconstructing caregiver's life for greater self-fulfillment.
  4. Learning how to find the humor, joy, and love in the AD (Alzheimer's Disease) journey.
Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Understanding Legal Documents and Terms

Commonly used documents in legal planning for individuals with Alzheimer's Disease include:

Power of Attorney
A power of attorney document gives a person with Alzheimer's Disease (the principal) an opportunity to authorize an agent (usually a trusted family member or friend), to legally make decisions when he/she is no longer competent. Most powers of attorney are "durable," meaning that they are valid even after the principal is no longer competent. A power of attorney can be changed, withdrawn at any time, and does not give the agent authority to override the decision-making of the principal.

Durable Power of Attorney for Health Care
 A durable power of attorney for health care document appoints an agent to make all decisions regarding health care, including choices regarding health care providers, medical treatment and facilities. For persons in the later stages of Alzheimer's Disease (AD), the health care agent will choose care services and make end of life decisions, such as whether or not the person with AD (Alzheimer's disease) is given artificial nutrition or issues "do not resuscitate" (DNR) directives.

Living Will
In a living will, the person with Alzheimer's Disease expresses his/her decision on the use of artificial life support systems. It is useful only in situations where a physician has determined that the person is irreversibly ill or critically injured and near death.

Living Trusts
Trusts created by an individual, with legal capacity, during his/her lifetime are known as "living" trusts. A living trust is another way to ensure the management of property. The person with Alzheimer's Disease, the grantor, also known as the trustor, creates the trust and appoints him/herself or someone else as trustee. A trustee, usually an individual or bank, has the responsibility to carefully invest and mange trust assets. The living trust provides that once the grantor, who is also acting as the trustee, is no longer able to manage finances because of cognitive impairment, another person is appointed as trustee.

Will
A will is a document created by an individual that names an executor - the person who will manage the estate - and the beneficiaries - the person or persons who will receive the estate - at the time of death. Wills are effective only when the individual who created and executed the will dies.

Guardianship/Conservatorship
 A caregiver of an individual who no longer has legal capacity to execute powers of attorney or trust may have to become that individual's guardian or conservator. A guardian has the legal authority to make decisions regarding the care and custody of the person with Alzheimer's Disease. In some states, the guardian who manages assets is known as a conservator.


Glossary of Legal Terms
Agent The individual authorized to make legal decisions for the principal, usually a trusted family member or friend.
Beneficiaries The individuals named in a will who receive the estate upon the death of the will maker.
Conservator The individual who manages another individual's assets and financial matters.
Executor The individual named in a will who manages the estate of a deceased individual.
Grantor/Trustor The creator of the living trust.
Guardian An individual, appointed by the courts, authorized to make legal and health care decisions for another individual.
Principal The individual signing the power of attorney to authorize another individual to legally make decisions for him/her.
Trustee The individual or bank who manages the assets of the living trust.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.