Learning how to cope with the effects of Alzheimer's disease and the increasing needs of your loved one will help you deal with your own stress and anxiety. The following suggestions are offered for family caregivers:
- Take one day at a time, but prepare for the future.
- Recognize which problems you can do something about and which are beyond your or anyone else's control.
- Be realistic about your abilities and how much you can do. Don't try to do it all yourself. Don't expect to accomplish all the things you were able to do before you became a caregiver.
- Be forgiving of yourself if things don't go just right - your loved one may quickly forget an oversight or mishap.
- Find out what resources are available and use them. Ask family and friends to help and accept their help when offered. If you think other family members aren't helping as much as they could, talk to them honestly.
- Be good to yourself. Remember that you deserve some pleasure; take time to see a movie or visit with friends.
- Keep your sense of humor.
- Find ways to express your feelings. Find a friend you can talk to or attend a support group meeting.
Adapted from "Especially for the Alzheimer Caregiver" from the Alzheimer's Association.
Ten A's for Alzheimer's Care
Arguments are useless and, in fact, make matters worse. Confusion, memory loss, and frustration are making the person behave irrationally and you can't "argue" them out of it.
Allow as much freedom and independence as possible, while keeping safety and comfort in mind.
Actions help when verbal communication may fail. Help the patient by demonstrating what you mean, or sometimes, by starting them in the activity.
Assume that the person may understand and hear what you say even if they are confused. Do not say things to others in front of them as if they are deaf.
Appreciate good moments or good days, even though the person's ability is not going to remain that way.
Appropriate activities help patients pass the time meaningfully and productively and reduce agitation, boredom, daytime sleeping and depression.
Agitation can be alleviated when the caregiver remains calm, reassuring and respectful of the patient's feelings.
Adults with disabilities are still adults. Mental level is not always equal to social level.
Adapt the task to fit the ability of the patient. Break down the activity into separate steps, or simplify tasks by eliminating parts that could be frustrating.
Assessment is ongoing. What is safe and effective for now, may not be so at a later time. Keep watching and reevaluating.
Adapted from an article appearing in the Southern Tier Alzheimer's Chapter Newsletter.
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8 R's in Alzheimer's Care
Routine will help someone with AD anticipate what to do next and what is expected of them. It sets boundaries that feel secure.
Rituals or life-long habits should be maintained. Don't try to break old habits. For example, if the individual never enjoyed crafts, don't expect to involve him/her in crafts now.
Reassess physical health if there is a sudden behavior change. A person with AD will become more confused, agitated or hostile when a physical complaint develops. Consider constipation or a urinary tract infection, etc. as the cause of the behavior disturbance.
Redirect or distract the person with AD. This can be accomplished by suggesting that it is snack time. When the person with AD asks to go home, say "in a little while, but first, how about a cup of tea and a cookie?" You will be surprised that the person will forget about leaving for a little while.
Real questions may be difficult to figure out if the person with AD has difficulty communicating. If the individual becomes agitated, perhaps they are telling you that they need to use the bathroom. Learn to read their body language.
Reconsider the behavior. Is it truly a problem? Does it present a danger for the person with AD? Or is it just upsetting you? Is talking to his/her reflection in a mirror, just like it was another person, a problem? Should the mirror be covered up? Only if the person appears to be upset or frightened by the reflection.
Respect is always the appropriate attitude when caring for a person with AD. Laugh with them, not at them. Never talk about them to another person in front of them as if they are not there. And remember, a person with AD will know how you feel by your body language and tone of voice.
Reassure the person with AD often that you love them and will care for them. A gentle pat, stroking their hair, and holding hands all say "I care for you." Think how much reassurance of love you would need if you were suffering from a dementia.
Courtesy of the Upstate South Carolina Alzheimer's Chapter, Anderson, SC
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Caregiver's Bill of Rights
Providing care for a person with Alzheimer's disease is often a stressful and demanding ordeal. It is important to remember that caregivers have human needs and emotions. They must care for the patient as well as themselves. The "Caregiver's Bill of Rights" helps identify some of the common and "normal" emotions caregivers may experience.
IT IS ALL RIGHT TO:
- Be angry.
- Turn this energy into positive action. Clean closets, take a walk, talk with someone.
- Be frustrated.
- Stop the present activity, take a deep breath and begin a different activity.
- Need time alone.
- A favorite chair in a quiet room, a trip to the store or out with friends.
- Need and ask for help.
- Explore family, friends, and local agencies for services needed. Most doctor's offices and clergy can make referrals.
- Trust your judgement.
- Relax, you are doing the best you can.
- Recognize your limits.
- You are a valuable person. Take care of yourself, too!
- Make mistakes.
- So, who's perfect! This is how we learn.
- This is a normal response to loss. You may be sad over the loss of the ways things used to be.
- Laugh and Love.
- It can seem out of place, but your capacity to feel is not gone and can occur unexpectedly.
- Tomorrow, the day may go smoother, a friend may call, a cure may be found.
Source: American Health Assistance Foundation
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Personalize Outings for Persons with Dementia
Many families ask for guidance or suggestions on appropriate outings for their loved one with dementia, but there are no easy answers. Because the person's interests, likes and dislikes often change during the course of the disease, the caregiver is left with the challenge of finding new activities to engage or entertain the person.
In creating such activities, caregivers should first ask, "Whose needs am I trying to meet?", then establish goals to fill the needs of that person - the person with dementia.
For example, try not to continue the relationship as it was by preserving familiar activities your loved one can no longer take part in. Some familiar activities can be continued for a long time into the disease, as long as they are adapted to the person's changing abilities. Caregivers who know and are sensitive to the needs of their loved one can continue to make sound judgements about what works and what doesn't.
Be careful not to take the roles of "patient" and "caregiver", and only tend to daily needs such as eating and bathing. Without thinking, you might fall into the habit of meeting your needs at the expense of your loved one, or vice versa.
When considering outside activities or outings for you and your loved one, think about simple goals you hope to accomplish, such as:
- Getting some exercise and fresh air
- Being together in a relaxed setting
- Doing something enjoyable or interesting
- Feeling love and support from relatives and friends
After setting these goals, keep the following in mind:
- Plan activities that were enjoyable in the past, and begin making any changes based on interest and tolerance.
- Avoid activities with crowds, such as popular sporting events.
- Go to places at times when there are fewer people and prompt, personal service, such as an early lunch or dinner at a familiar restaurant.
- Limit time spent on one activity. Activities that last longer than a few hours are often too taxing.
- Consider activities that are flexible enough to permit a change of plans, such as leaving a party early.
- Plan activities that don't require much concentration, but have some ability to hold the person's attention. Try visiting a pet store, zoo or flower show.
- Allow the person to participate according to ability. Don't demand more than he or she is capable of. For example, "Come on, you remember your sister-in-law, Barbara."
- Enjoy simple activities: A walk to the park or an ice cream store, a visit to a church or temple, a quiet drive through a forest preserve, a walk along the lake front, a stop at the local playground.
- Be creative in trying things that might be unusual, but workable, such as a trip to a garage sale, a swim at the local YMCA or a leisurely stop at a local bakery.
Most activities are meaningful for persons with dementia because of the supportive relationship they share with their caregiver. As the disease progresses, many individuals rely on familiar people and the newly adapted, now familiar routines in their life. Repeat community outings that the person with dementia enjoys.
Remember that a break in routine, though refreshing for the caregiver, may produce stress and discomfort for the person with dementia. For many people with dementia, familiarity, not variety, is the spice of life.
By: Dorothy Seman, RN, MS, NHA
Alzheimer Family Care Center
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When Someone You Know Has Alzheimer's Disease
With the increasing prevalence of Alzheimer's disease, it is very likely that a friend, neighbor or someone you know may someday be diagnosed with the disease. As with all chronic and debilitating illnesses, the patient and family need your friendship and support more than ever. Interacting with an Alzheimer's patient and supporting the family caregiver may seem difficult, but with a little understanding, patience and knowledge of the disease, you can play a very helpful role.
First and foremost is to learn more about the disease so you can recognize, understand, and anticipate the more common behaviors and symptoms associated with Alzheimer's disease. This increased knowledge will enable you to interact more effectively with the patient and understand the demands the Alzheimer's patient places on the caregiver.
The following information will provide you with practical suggestions regarding what to do, what to say, and how to act when someone you know has Alzheimer's disease.
Interacting with the Patient
Some of the more noticeable behaviors occurring in the early stages of Alzheimer's disease include personality changes, mood swings, and poor memory for recent events. As the disease progresses, patients will become more confused and have increased difficulty recognizing family and friends. Their behavior may become more combative and their attention span very short. Their ability to read, write and organize their thoughts will be markedly diminished. They may also appear distrusting at times. These symptoms and behaviors will continually change over the course of the disease, which can last anywhere from 2 - 20 years.
We suggest the following ways to interact with and be supportive to the patient:
- Learn about the disease and how to respond to unusual behaviors.
- Keep your communications simple, your voice low and your questions to a minimum to avoid frustrating or over stimulating the patient.
Courtesy of the National Eldercare Institute on Long Term Care and Alzheimer's Disease at the Gerontology Center, University of South Florida
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