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Caregiving and Alzheimer's Disease
Overview
A diagnosis of Alzheimer’s disease for yourself or a loved one can be difficult to accept. As you read through this fact sheet, we encourage you to keep an open mind and remember that you are not alone. Organizations that provide assistance and support to people with AD and their families are located in communities all across the nation.
Facts
Alzheimer’s disease (AD) is a slowly progressing disease that results in the loss of nerve cells in the brain, eventually leading to impairment in memory, judgment and decision-making, orientation to physical surroundings, concentration and language. Though the loss of nerve cells is irreversible, medications are available that may slow the disease’s progress.
AD can affect your ability to perform day-to-day tasks and can lead to changes in behavior and mood. While symptoms often interfere with social, family and work activities, many AD patients and caregivers have learned a variety of strategies that have helped them maintain an active and productive life. This Fact Sheet offers information about this medical condition as well as practical tips for coping with its effects.
Stages
AD affects people in different ways. The progress of the disease and its symptoms may differ from person to person. However, the general course of the disease is often divided into stages (early, middle and late) based upon memory, thinking, and your ability to care for yourself. Long-term memory (e.g., events from childhood and early adulthood) is not affected in the early stages of AD.
Early Diagnosis and Intervention
Although scientists have not found a cure for AD, certain important actions and resources can be helpful to you and your family. The first step is to get a full medical examination to rule out potentially reversible causes of memory loss (e.g., depression, reaction to medication, etc.). In addition, early diagnosis and intervention allow you to:
• Improve your understanding—and the understanding of those around you—about the changes that are taking place.
• Increase your knowledge of AD.
• Access community resources that help AD patients and caregivers.
• Take advantage of medications. Several prescription drugs may delay, for a time, the worsening of symptoms in people with AD.
• Make plans for the future (e.g., financial and health care planning).
• Increase your awareness of local and national research projects and clinical trials of new medications.
• Increase your awareness of safety issues and health.
Early-Stage Symptoms
The following is a list of skills and tasks that may become increasingly difficult for you. The list is intended to help you identify potential difficulties in order to help you plan for future changes and continue living your life to the fullest.
• Memory for recent events. Examples: remembering appointments, details of a recent conversation and names.
• Carrying out tasks with multiple steps. Examples: managing money and balancing your checkbook, taking medications as prescribed, shopping and cooking.
• Decision-making and problem-solving. Example: making quick decisions in response to an emergency, such as responding to a flood or fire in your home.
• Spatial ability and orientation. Examples: following a map or following directions, judging the distance of objects while driving, and feeling lost in familiar environments.
• Language. Examples: finding the right word, writing letters, understanding what you have read or what others have said.
• Behavior and/or mood. Examples: loss of interest in new projects, withdrawing in social situations, feelings of anxiety and depression. Keep in mind that anxiety and depression are often treatable, so speak with your physician if these feelings arise.
Transitions
It may be necessary to change your daily routine in the early stages of AD. Although a time may come when you must rely more on others for assistance with some tasks, you will want to stay involved in making decisions that affect your life. The following tasks may require adjustments in your lifestyle:
Driving: Some states have laws requiring physicians to report individuals with a diagnosis of AD to the Department of Motor Vehicles. The intent is to ensure that you and those around you are safe. If you continue driving, ongoing evaluation of your driving abilities and ongoing consultation with your physician are critical. It is also wise to pay attention to the suggestions of those close to you; they may recognize changes in your driving ability before the changes become apparent to you.
In-home responsibilities: Household management may become increasingly difficult for you. Tasks such as cooking and taking medications may pose safety risks.
You may, for example, forget to turn off the stove or forget to take a dose of medication. However, it may be possible to continue to participate in household activities with a minimal amount of assistance from another person. Some individuals may choose to have family or friends assist in certain areas; others may choose to hire help from outside the home. It may be necessary to consider moving to another living situation in order to simplify your lifestyle or to be in closer proximity to family or friends. You may want to start discussing these options with those who are close to you.
Financial responsibilities: Balancing a checkbook, dealing with insurance, and paying bills may become frustrating and overwhelming. Having a trusted family member or friend to help with these tasks is extremely important. A Power of Attorney should be established so that this trusted person can act on your behalf during times when you cannot.
Be sure to include this person in the process very early so that he or she has time to learn what needs to be done. Like driving, managing our own finances is a sign of independence. It can be difficult to allow someone else to do these things for you, but there is no shame in admitting you may need help. The people who are close to you may recognize your need for help before you do.
Treatment
Presently, researchers cannot definitively say what causes AD, and there currently is no cure. However, considerable progress has been made in the field of AD research in recent years resulting in the development of several medications for AD.
The ideal medication for AD would either prevent or cure it, have no side effects, be inexpensive, and be readily available. Researchers have not yet discovered this ideal treatment. It is possible, however, to improve memory and slow the progression of AD with medications. As of the beginning of 2002, four drugs had been approved by the FDA. Tacrine (Cognex), approved in 1993, has many side effects, including potential liver damage, and has proved disappointing with regard to improving memory. For these reasons it is seldom prescribed. Three newer drugs, donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl), have been more beneficial in improving memory with fewer side effects. Unfortunately these drugs are not effective for everyone and their effectiveness is limited to the early and middle stages of AD. Talk to your physician about whether or not one of these medications may be appropriate for you.
New medications are constantly being tested. If you are interested in participating in clinical trials, you should discuss this with both your physician and the people close to you. Information on clinical drug trials and other research is available from the Alzheimer’s Disease Education and Referral Center (ADEAR). Many universities and medical schools conduct research projects as well. Your physician may know of research studies seeking participation from people with AD.
It is currently possible to reduce the emotional and behavioral symptoms sometimes associated with AD. For example, a doctor may prescribe drugs to reduce depression, anxiety and sleep problems. Exercise, diet, education programs, and support groups also help address some problems caused by AD.
Ways of Coping
• Educate yourself about the disease and resources in the community.
• Discuss with family members or other trusted persons your preferences about decisions affecting your life. (For more information on discussing your preferences, see FCA’s Fact Sheet Making Choices About Everyday Care.)
• Continue to explore ways to fulfill your needs for intimacy and closeness. The desire for close relationships with others continues throughout the disease.
• Be patient with yourself.
• Exercise can contribute to good physical health and coordination, and can reduce stress. See your physician for an exercise program that will best fit your needs.
• Find productive ways to release anger and frustration—talk with a close friend, a counselor, or join a support group especially for people with AD.
• Use visible and/or accessible reminders—write notes to yourself, leave messages on your answering machine, or set the alarm on a watch as a reminder about an upcoming appointment.
• Engage yourself in meaningful activities—documenting your life story by creating a scrap book, tape recording your autobiography, or keeping a journal can be wonderful ways to reflect upon your life and share yourself with those close to you. Your children and grandchildren will treasure these keepsakes.
• Keep your mind active—do puzzles, write, etc.
• Know that you are not only a “person with AD”—focus on the many and varied personal attributes that you have, such as integrity, kindness, humor.
• Become an advocate for yourself and other individuals with AD. Write letters and make phone calls to local and state representatives, assist community agencies in training staff and professionals about AD, or become involved in a research program.
• Establish a Power of Attorney for Healthcare and Power of Attorney for Finances. These documents will help your loved ones provide you with the type of care you want and need in the future.
• Continue social activities—get together with friends and family as much as possible.
• Maintain an open mind and positive attitude—focus on your present abilities and avoid excessive worry about what might happen in the future. Know that there are many ways to live an active and productive life.
Family Caregiver Alliance
If you are a caregiver caring for a Elder Independence of Maine consumer with a diagnosis of dementia or Alzheimer’s disease and would like support, education or resources, please contact your local Area Agency on Aging:
Aroostook Agency on Aging - Aroostook County - 1-800-439-1789
Eastern Agency on Aging - Hancock, Penobscot, Piscataquis, Washington Counties - 1-800-432-7812
SeniorsPlus - Androscoggin, Franklin and Oxford Counties - 1-800-427-1241
Southern maine Agency on Aging - York and Cumberland Counties - 1-800-427-7411
Spectrum Generations - Kennebec, Knox, Lincoln, Sagadahoc, Somerset, Waldo Counties (including Brunswick and Harpswell) - 1-800-639-1553
CONTACT ALZHEIMER'S CAREGIVER SUPPORT TEAM
SOME HELPFUL WEBSITES
MAINE ALZHEIMER'S ASSOCIATION
ALZHEIMER'S DISEASE EDUCATION AND REFERRAL CENTER
FAMILY CAREGIVER ALLIANCE
CHILDREN OF AGING PARENTS
A YEAR TO REMEMBER...
DEMENTIA, ALZHEIMER'S AND DRIVING
UNIVERSITY OF MAINE CENTER ON AGING
MAINE ALZHEIMER'S PROJECT NEWSLETTER - FORGET ME NOT
WONDERFUL STORY: FAMILY TIES SOURCE OF STRENGHT FOR ELDERLY CAREGIVERS
GERIATRICS AT YOUR FINGER TIPS
THE FORGETTING A PORTRAIT OF ALZHEIMER'S
THE AMERICAN GERIATRICS SOCIETY
WELL SPOUSE FOUNDATION
NATIONAL INSTITUTE ON AGING
NATIONAL ALLIANCE FOR CAREGIVING
THE ALZHEIMER'S STORE-UNIQUE PRODUCTS
SAFE RETURN PROGRAM
CLOTHING SOLUTIONS
HOME MODIFICATIONS
Forget Me Not newsletter
Communication
People with Alzheimer’s disease often find it difficult to express themselves and understand others. They may:
• Have difficulty finding the right words
• Use familiar words repeatedly
• Invent new words to describe familiar objects
• Frequently lose their train of thought
• Experience difficulty organizing words logically
• Revert to speaking in a native language
• Curse or use offensive words
• Speak less often
• Rely on nonverbal gestures
Tips for enhancing communication
• Show that you are listening and trying to understand what is being said
• Maintain eye contact
• Encourage the person to continue to express thoughts even if he or she is having difficulty
• Be careful not to interrupt
• Avoid criticizing, correcting, and arguing
• Be calm and supportive
• Use a gentle, relaxed tone of voice
• Use positive, friendly facial expressions
• Always approach the person from the front, identify yourself, and address him or her by name
• Speak slowly and clearly
• Use short, simple, and familiar words
• Break tasks and instructions into clear, simple steps
• Ask one question at a time
• Allow enough time for a response
• Avoid using pronouns and identify people by their names
• Avoid using negative statements and quizzing (e.g., “You know who that is, don’t you?”)
• Use nonverbal communication such as pointing and touching
• Offer assistance as needed
• Don’t talk about the person as if he or she wasn’t there
• Have patience, flexibility, and understanding
Two Mothers Remembered
by Joann Snow Duncanson
I had two Mothers - two Mothers I claim
Two different people, yet with the same name.
Two separate women, diverse by design,
But I loved them both because they were mine.
The first was the Mother who carried me here,
Gave birth and nurtured and launched my career.
She was the one whose features I bear,
Complete with the facial expressions I wear.
She gave her love, which follows me yet,
Along with the examples in life she set.
As I got older, she somehow younger grew,
And we'd laugh as just Mothers and daughters do.
But then came the time that her mind clouded so,
And I sensed that the Mother I knew would soon go.
So quickly she changed and turned into the other,
A stranger who dressed in the clothes of my Mother.
Oh, she looked the same, at least at arm's length,
But now she was the child and I was her strength.
We'd come full circle, we women three,
My Mother the first, the second and me.
And if my own children should come to a day,
When a new Mother comes and the old goes away,
I'd ask of them nothing that I didn't do.
Love both of your Mothers as both loved you.
New Item 6/13/06
Alzheimer’s Disease: Care and Support at the End of Life
Resources and Information for the Caregiver
Prepared by Laurel Coleman, M.D.
The author, Laurel Coleman, M.D., is a geriatric physician with interest in Alzheimer’s disease and End of Life Care. She serves on the National Board of the Alzheimer’s Association.
This brochure was developed by the Maine Alzheimer’s Project, a collaborative project of the Muskie School of Public Service, University of Southern Maine, and the Office of Elder Services, Maine Department of Health and Human Services. This project was supported, in part, by grant number (90AZ2781) from the Administration on Aging, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration on Aging policy.
Table of Contents:
- Introduction
- Researching Your Opponent
- Building Your Team
- Developing Your Game Plan
- The Huddle
- Offense
- Defense
- Special Teams
- Post-Game Wrap Up
Dealing with Advancing Alzheimer’s Disease
Introduction
You probably would rather not be reading this. You are helping to care for someone with dementia, a job you didn’t choose. Consider this brochure “continuing education,” because facing the advanced stage of Alzheimer’s disease will take new skills and approaches.
My friend Coach Frank Broyles of the University of Arkansas cared for his wife who had Alzheimer’s disease for many years. He taught me a lot. I wanted to adopt his “game plan” approach to this challenging disease.
Researching Your Opponent
While you may rightly believe Alzheimer’s disease to be your opponent, you must realize that you will never beat this enemy. If you place your hopes in preventing its progression, you will be disappointed. Someday, we will have treatments and even a cure for Alzheimer’s, but for now you must fight this opponent by preventing it from doing unnecessary physical and emotional damage.
It is important for you to appreciate that many of the medical therapies and technologies we take for granted in today’s healthcare system are not very effective for people with a terminal illness. For example, when a person with advanced dementia refuses most food, or becomes unable to swallow, well-meaning healthcare workers often will suggest a feeding tube to provide nutrition. While a feeding tube can be very helpful in providing nutrition in a person who is recovering from an illness, it does not prolong the life or improve the quality of life in a person with severe dementia.
As a caregiver, you will have to weigh many common medical therapies and decide if they will help to comfort or improve the life of the person you are caring for.
So how do you fight a battle against a disease that will ultimately cause the death of a person you care about?
You can prevent Alzheimer’s from causing isolation, pain, loss of dignity, and many other avoidable problems. By learning more about what you are facing, you CAN make a big difference in the last chapter of someone’s life.
Building Your Team
You need a team. This disease will cause more devastation and likely affect your health too, if you face it alone. Your support network of family, friends, and neighbors are important members of your team.
If you have “managed” mostly alone up until now, please wait no longer to ask others for help. They may provide companionship, respite care, and help with something around the house, a meal, or just a needed hug.
A caring physician, who understands the challenges of Alzheimer’s disease, is a valued member of your team. But not everyone is working with this kind of physician, so it is best to consider the issue now, so if a change is desired you can work on options right away. Often a community has one or two physicians who are skilled in end of life care or hospice.
In the advanced stage of Alzheimer’s or other dementias, healthcare workers who know how to treat common symptoms at the end of life are the most helpful.
Getting more information about what services are available in your community is a good idea. A local Area Agency on Aging will have information on resources like respite care, home nursing services, and volunteer help. The local chapter of the Alzheimer’s Association also has many resources to offer, such as support groups, care management, educational materials, and referral services to healthcare agencies.
Hospice care may be helpful as well. Every Medicare enrollee and many people with private insurance have the option to ask for the hospice benefit. Unfortunately, many people with Alzheimer’s do not use hospice care. There are many reasons for this, but the difficulty predicting how long someone will live with advanced Alzheimer’s is the most common barrier.
Hospice care is targeted to the last 6-9 months of life because the specialized care
and treatments are the best suited for this time period.
Alzheimer’s disease is a terminal illness. It often takes a long time, but eventually the nervous system is damaged so that in the advanced stage a person exhibits many of the symptoms below:
• Difficulty speaking or inability to talk
• Abnormal swallowing, occasional coughing/choking with difficulty chewing appropriately
• Inability to walk alone — or bed bound
• Unstable posture — cannot sit up straight
• Incontinence
• Increased number of infections
• Weight loss
• Severe tremors — Seizures
If your loved one has many of these features and if you “wouldn’t be surprised” if they died in the next year, then discussing the possibility and availability of hospice care would be a good idea. Remember, you are never obligated to enroll in a hospice program. You should, however, meet with them and discuss their program to see if what they offer would help you and the person you care for.
Developing Your Game Plan
To meet this “challenge,” it will take advance planning in order to “finish strong.” You need to form a strategy that considers how you will respond to various challenges that might lie ahead. Consider these issues to form your own “game plan.”
• Legal Issues: Do you have legal authority to make healthcare and financial decisions for the person you care for? Consulting a lawyer may be helpful to
make sure you have a durable power of attorney for healthcare, a durable financial power of attorney, or other legal authority that allows you to make decisions.
• Difficult Decisions: It is important to get as much medical information as possible about the person you are caring for and their wishes, so that you can thoughtfully prepare for likely healthcare decisions.
It is very appropriate for anyone with severe Alzheimer’s disease to have a healthcare plan that is palliative — that is focused on the person’s comfort and quality of life rather than on the length of their life. This palliative approach is consistent with what most of us would want if we were nearing the end of our lives. A “Do Not Resuscitate” order would be part of this approach, but it is not enough to ensure a constant focus on comfort. You will also need to consider if you will choose to allow medical treatments that might prolong life, but may cause discomfort. These things might include surgery for a broken bone, medications, intravenous liquids, or even antibiotics.
• Living situation: Consider what happens if this phase of life goes on for a few months or a couple of years. What will happen if something prevents you from being a caregiver? Is there a Plan B? Have you considered paid caregivers or long term care facilities? What are your options given your financial resources? It is far better to consider these issues now, rather than in an urgent situation.
• Caregiver issues: Too many caregivers exhaust themselves completely in this difficult job and suffer physical and emotional illness in the process. Your game plan must consider yourself. How will you get needed breaks? Do you have options for getting “respite help” with caregiving through your church or temple, social club, friends or family?
The Huddle
A meeting of family, friends, your support network and any healthcare professionals working with you can be a valuable experience. This would be a good time to discuss a caregiving schedule, your “game plan” for unexpected illness or hospitalization, advance directives, and other issues so that all team members are in agreement. If there are differences in opinion among your team it is better to work to a compromise now, rather than when it is more stressful.
Offense
Many things suggested so far could be considered your offense. Let’s review them and add a few more “plays” to your game plan.
• Make sure you have advance directives completed. This includes additional wishes about hospitalization, tube feeding, intravenous hydration, and antibiotics.
• Good communication with all your team members is the best offense. If your desire to always prioritize comfort and quality of life for the person with advanced dementia is well understood by all those involved, then the chances of inadequate or unwanted care will be less.
• Consider involving your local hospice agency. Hospice programs focus on avoiding pain and other damaging symptoms. They are valuable team members.
• Emergency planning is important. You should know how you are going to respond to a medical emergency. Talking with the physician now can help you in this area. He or she may agree to prescribe a small amount of sedative or pain medication that you would use in “an emergency” situation to avoid the need for a potential hospitalization. You do not want to be caught in a situation where you feel unable to provide comfort to the person you are caring for.
It is commendable to try to prevent unwanted hospitalization for a terminally ill person, but you must be prepared to manage common symptoms at home (agitation, pain, shortness of breath, etc.).
Defense
Just as you would protect a child, you may be called upon to “defend” or protect a person with severe Alzheimer’s disease because they can no longer speak up for themselves effectively.
Watch for pain. It can be hard to determine if a person with dementia is having pain because they cannot answer direct questions. Pain may look like agitation, anxiety, restlessness or moaning. Attempts should be made to help make the person more comfortable, and a trial of a pain medicine is a very useful tool.
Treat other symptoms that occur at the end of life. Ask for help with ideas to prevent or treat dry mouth, skin breakdown, agitation, excess secretions (gurgling), or falling. Your physician or hospice agency will help with ideas for these symptoms or others you might encounter.
Defend against isolation and loneliness. This should apply to both the person with dementia and you, the caregiver. Even when Alzheimer’s has robbed a person of most of their intelligence and ability to speak, they still can appreciate human caring. Try to hold hands, sing, talk, and interact with your loved one — even when you are not sure if they can sense your presence. Your love and caring is a powerful weapon in your battle against Alzheimer’s disease.
Preserve dignity in HOW you provide care. Alzheimer’s cannot rob someone of their inherent dignity. They are still a unique human being that deserves love, care, and respect. If you as a caregiver treat them with compassion, then your actions defend against the loss of dignity.
Special Teams
Once in a while, you may need help from “special teams”— people who are specially trained to help with end of life care or advanced dementia. Feel free to contact the following agencies if you need additional help or advice:
• To reach the Area Agencies on Aging: 1-877-353-3771
• Maine Alzheimer’s Project: (207) 287-9214
• Maine Alzheimer’s Association: 1-800-660-2871
• Maine Hospice Council: 1-800-438-5963
• The Maine Office of Elder Services, Department of Human Services: 1-800-262-2232
• Administration on Aging: www.aoa.gov
Post-Game Wrap Up
After the death of the person you are caring for, it is important to realize that you will still need your support team. Grief and bereavement services are available through your local hospice agencies as well. Remember that it is normal and very common to feel a sense of both loss and relief after someone who you cared for dies. These seemingly conflicting emotions are actually very rational and reasonable responses to a long battle with a devastating disease.
Keep thinking, talking, sharing and reaching out to others. You have done something incredibly powerful in your work as a caregiver.
Be proud of your role as you helped with the “long goodbye.”
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