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Dementia Carers Information

Understanding Alzheimer’s Disease (AD)

Sometimes, you may feel that you don’t know how to care for the Person with AD.  You’re not alone.  This is a common feeling among AD Caregivers because each day may bring   different challenges.   Learning about AD can help you understand    and cope with these   challenges.   Below, we Discuss  the  stages  of  AD  and  tell  you  how  to learn  more about the illness.

Stages of AD and What They Mean

Alzheimer’s disease   consists of three   main stages:

1.  Mild (Early-stage), 

2.  Moderate

3.  Severe (late-stage). 

Understanding the stage can help you plan ahead.

Mild Alzheimer’s disease: In mild AD, the first stage, people often have Some memory loss and   small changes in their personality.  They may have trouble  remembering  recent  events  or  the  names  of  familiar  people  or  things.  They  may  no  longer  be  able  to  solve  simple   math  problems  or  write  a Cheque.   People  with  mild  AD  also  slowly  lose  the  ability  to  plan  and  Organize. For example, they may have trouble making a grocery list and  Finding items in the store. They may have problems finding their way in  Familiar surroundings.    Contrary to popular belief they will remember Remote events    and forget recent events.

Moderate   Alzheimer’s disease: This is the middle stage of   AD. Memory loss and confusion become more obvious.  People have more trouble Organizing, planning, and following instructions.  They may need help getting Dressed and may start having problems with incontinence (Can’t control Their bladder and/or bowels).  People   with moderate-stage AD may have trouble recognizing family members and friends.   They may not know where they are or what day or year   it is.   They also may lack judgment   and begin to  wander,  so  people  with  moderate  AD  should  not  be  left  alone.  They   may  become  restless  and  begin  repeating  movements  late  in  the  day.   Also, they may have trouble sleeping.   Personality changes can become more Serious.  People with moderate AD may make threats,  accuse others of stealing, curse, kick, hit, bite, scream, or grab things.

Severe Alzheimer’s disease: This is the last stage of Alzheimer’s and ends in the  death of the person.  Severe AD is sometimes called late-stage AD.  In this stage, people often need help with all their daily needs.  They may not be   able   to walk Or sit up without help.  They  may  not  be  able  to  talk  and  often  cannot  recognize  family  members.  They may have trouble swallowing and refuse to eat. 

Caring for a Person with AD

Understanding How AD Changes People

Challenges and Coping   Strategies

Alzheimer’s disease is an illness of the brain.  It causes large   numbers of nerve cells In the brain   to die.  This affects a   person’s ability to remember    things and think Clearly.  People with AD   become forgetful and easily confused.  They may have a hard Time   concentrating and behave in odd ways.  These problems get worse as the illness gets worse, making your job as caregiver harder.

Kindly note that the carers should learn to differentiate the disease from the person and not blame the person due to lack of understanding of the disease.  Remember we do not blame the person if he has fever.

Challenges carers face while taking care of a person with AD.

1.  Changes  in  communication  skills

2.  Changes  in  personality  and  behavior

3.  Changes  in  intimacy  and  sexuality

1. Challenge:  changes in   communication skills:  

Communication  is  hard  for  people  with  AD  because   they  have  trouble  remembering  things.  They  may  struggle  to  find  words  or  forget  what  they  want  to  say.  You may feel impatient and  wish  they  could  just  say  what  they  want,  but  they   can’t.

Here are some communication problems caused by AD:

Trouble finding the right word when speaking

  • Problems understanding  what  words  mean
  • Problems paying  attention  during  long  conversations
  • Loss  of  train-of- thought  when  talking
  • Trouble  remembering  the  steps  in   common  activities,  such  as  cooking  a  meal,  paying  bills,  getting  dressed,  or  doing  laundry
  • Problems  blocking  out  background  noises  from  the  radio,  TV,  telephone  calls,  or  conversations  in  the  room
  • Frustration  if  communication  isn’t  working
  • Being  very  sensitive  to  touch,  tone,  and  loudness  of  voices

Also ,  AD  causes  some  people  to  get  confused  about  language.  

How to cope with changes in communication skills

The first step is to understand that the disease  causes changes in these skills. The second step is to  try some tips that may make communication easier. For example,  keep the following suggestions in mind as you go about day-to-day care. 

To connect with a person who has AD:

  • Make eye contact to get his or her attention, and call the person by name.
  • Be aware of your tone and how loud your voice is, how you look at the person, and your “body language”. Body language is the message you send just by the way you 
  • Hold your body. For example, if you stand with your arms folded very tightly, you may send a message that you are tense or angry.
  • Encourage a two-way conversation for as long as possible. This helps the person with AD feel better about himself or herself.
  • Use other methods besides speaking to help the person, such as gentle touching to guide him or her.
  • Try distracting someone with AD if communication creates problems. For example, offer a fun activity such as a snack or a walk around the neighborhood.
  • Give them time to communicate try not to complete the sentence for them every time.

To encourage the person with AD to communicate with you:

  • Show a warm, loving, matter-of-fact manner.
  • Hold the persons hand while you talk.
  • Be open to the person’s concerns, even if he or she is hard to understand.
  • Let him or her make some decisions and stay involved.
  • Be patient with angry outbursts. Remember, it’s the illness “talking.”
  • If you become frustrated, take a “timeout” for yourself.

To speak effectively with a person who has AD:

  • Offer simple, step-by-step instructions.
  • Repeat instructions and allow more time for a response. Try not to interrupt.
  • Don’t talk about the person as if he or she isn’t there.
  • Don’t talk to the person using “baby talk “or a “baby voice.”

Here are some examples of what you can say:

  • “Let’s try this way,” instead of pointing out mistakes.
  • “Please do this;” instead of “Don’t do this.”
  • “Thanks for helping,” even if the results aren’t perfect.

 You also can:

  • Ask questions that require a yes or no answer. For example, you could say, “Are you tired?” Instead of “How do you feel?”
  • Limit the number of choices. For example, you could say, “Would you like rice or chapathi for dinner?” Instead of “What would you like for dinner?”
  • Use different words if he or she doesn’t understand what you say the first time. For example, if you ask the person whether he or she is hungry and you don’t get a response, you could say, “Dinner is ready now. Let ‘s eats.”
  • Try not to say “Don’t you remember?” Or “I told you.”

Helping a Person Who Is Aware of Memory Loss

AD is being diagnosed at earlier stages. This means that many people are aware of how the disease is affecting their memory. Here are tips on how to help someone who knows that he or she has memory problems:

  • Take time to listen. The person may want to talk about the changes he or she is noticing.
  • Be as sensitive as you can. Don’t just correct the person every time he she forgets something or says something odd. Try to understand that it’s a struggle for the person to communicate.
  • Be patient when someone with AD has trouble finding the right words or putting feelings into words.
  • Help the person find words to express thoughts and feelings.

Be careful not to put words in the persons mouth or “fill in the blanks” too quickly.

  • As people lose the ability to talk clearly, they may rely on other ways to communicate their thoughts and feelings.

For example, their facial expressions may show sadness, anger, or frustration. Grasping at their undergarments may tell you they need to use the bathroom.

2. Challenge: changes in personality and behavior

Because AD causes brain cells to die, the brain works less well over time. This changes how a person acts. You will notice that he or she will have good days and bad days.

Here are some common personality changes you may see:

  • Getting upset, worried, and angry more easily
  • Depressed or not interested in things
  • Hiding things or believing other people are hiding things
  • Imagining things that aren’t there
  • Pacing a lot of the time
  • Showing unusual sexual behavior
  • Hitting you or other people
  • Misunderstanding what he or she sees or hears

Also, you may notice that the person stops caring about how he or she looks, stops bathing, and wants to wear the same clothes every day. 

Other factors that may affect how people with AD behave

In addition to changes in the brain, the following things may affect how people with AD behave.

How they feel:

  • Sadness, fear, or a feeling of being overwhelmed
  • Stress caused by something or someone
  • Confusion after a change in routine, including travel
  • Anxiety about going to a certain place

Health—related problems:

  • Illness or pain
  • New medications
  • Lack of sleep
  • Infections, constipation, hunger, or thirst
  • Poor eyesight or hearing
  • Alcohol abuse
  • Too much caffeine

Problems in their surroundings:

  • Being in a place he or she doesn’t know well.
  • Too much noise, such as TV, radio, or many people talking at once. Noise can cause confusion or frustration.
  • Stepping from one type of flooring to another. The change in texture or the way the floor looks may make the person think he or she needs to take a step down.
  • Misunderstanding signs
  • Mirrors. Someone with AD may think that a mirror image is another person in the room.

How to cope with personality and behavior changes

Here are some ways to cope with changes in personality and behavior:

  • Keep things simple .Ask or say one thing at a time.
  • Have a daily routine, so the person knows when certain things will happen.
  • Reassure the person that he or she is safe and you are there to help.
  • Focus on his or her feelings rather than words. For example, say, “You seem worried.”
  • Don’t argue or try to reason with the person.
  • Try not to show your anger or frustration. Step back. Take deep breaths, and count to 10. If safe, leave the room for a few minutes.
  • Use humor when you can.
  • Give people who pace a lot a safe place to walk. Provide comfortable, sturdy shoes. Give them light snacks to eat as they walk, so they don’t lose too much weight, and make sure they have enough to drink.

Use distractions:

  • Try using music, singing, or dancing to distract the person. One caregiver found that giving her husband chewing gum stopped his cursing.
  • Ask for help. For instance, say, “let’s clean the vegetables”; “It’s time to go for our walk”; or “I really need help folding the clothes.”

Other ideas:

  • Talk to the psychiatrist about any serious behavior or emotional problems, such as hitting, biting, depression, or hallucinations.

How to cope with sleep problems

Evenings are hard for many people with AD. Some may become restless or irritable around dinner time. This restlessness is called “sun downing.” It may even be hard to get person to go to bed and stay there.

Here are some tips that may help:

  • Help the person get exercise each day, limit naps, and make sure the person gets enough rest at night. Being overly tired can increase late-afternoon and nighttime restlessness.
  • Plan activities that use more energy early in the day. For example, try bathing in the morning or having the largest family meal in the middle of the day.
  • Set a quiet, peaceful mood in the evening to help the person relax. Keep the lights low, try to reduce the noise levels, and play soothing music if he or she enjoys it.
  • Try to have the person go to bed at the same time each night. A bedtime routine, such as reading out loud, also may help.
  • Limit caffeine.
  • Use night lights in the bedroom, hall and bathroom.

How to cope with hallucinations and delusions

As the disease progresses, the person with AD may have hallucinations. During a hallucination, a person sees, hears, smells, tastes, or feels something that isn’t there. For example, the person may see his or her dead mother in the room. He or she also may have delusions. Delusions are false beliefs that the person thinks are real. For example, the person may think his or her spouse is in love with someone else.

Here are some things you can do:

  • Consult a psychiatrist about the hallucinations or delusions.
  • Discuss with the psychiatrist any illnesses the person has and medicines he or she is taking. Sometimes an illness or medicine may cause hallucinations or delusions.
  • Try not to argue about what the person with AD sees or hears. Comfort the person if he or she is afraid.
  • Distract the person. Sometimes moving to another room or going outside for a walk helps.
  • Turn off the TV when violent or upsetting programs are on. Someone with AD may think these events are really going on in the room.
  • Make sure the person is safe and can’t reach anything that could be used to hurt anyone or him or herself. 

How to cope with paranoia

Paranoia is a type of delusion in which a person may believe--without a good reason --that others are mean, lying, unfair, or “out to get him or her.” He or she may become suspicious, fearful, or jealous of people. In a person with AD, paranoia often is linked to memory loss. It can become worse as memory loss gets worse. For example, the person may become paranoid if he or she forgets:

  • Where he or she put something. The person may believe that someone is taking his Or her things.
  • Someone with AD might not trust you if he or she thinks you are a stranger.
  • The person may believe that strangers will be harmful.
  • Directions you just gave. The person may think you are trying to trick him or her.

Paranoia may be the person’s way of expressing loss. The person may blame or accuse others, because no other explanation seems to make sense.

Here are some tips for dealing with paranoia:

  • Try not to react if the person blames you for something.
  • Don’t argue with him or her.
  • Let the person know that he or she is safe.
  • Use gentle touching or hugging to show the person you care.
  • Explain to others that the person is acting this way because he or she has AD.
  • Search for missing things to distract the person; then talk about what you found. For example, talk about a photograph.
  • Have extra sets of keys or eyeglasses in case they are lost.

How to cope with agitation and aggression

Agitation means that a person is restless and worried. He or she doesn’t seem to be able to Settle down. Agitated people may pace a lot, not be able to sleep, or act aggressively toward others. They may verbally lash out or try to hit or hurt someone. Most of the time, these behaviors happen for a reason. When they happen, try to find the cause.

For example, the person may have:

  • Pain, depression, or stress—and not know how to explain it
  • Too little rest or sleep
  • Constipation
  • Soiled underwear or diaper 

Here are some other causes of agitation and aggression:

  • Sudden change in a well-known place, routine, or person
  • A feeling of loss—for example, the person with AD may miss the freedom to drive or the chance to care for children
  • Too much noise or confusion or too many people in the room
  • Being pushed by others to do something—for example, to bathe, or remember events or people—when AD has made the activity very hard or impossible
  • Feeling lonely and not having enough contact with other people
  • Interaction of medicines

Here are suggestions to help you cope with agitation and aggression: 

  • Look for the early signs of agitation or aggression. If you see the signs, you can deal with the cause before the problem behaviors start.
  • Try not to ignore the problem. Doing nothing can make things worse. Try to find the causes of the behavior. If you deal with the causes, the behavior may stop.
  • Slow down and try to relax if you think your own worries may be affecting the person with AD. Try to find a way to take a break from care giving.
  • Allow the person to keep as much control in his or her life as possible.
  • Try to distract the person with a favorite snack, object, or activity.

You also can:

  • Reassure him or her. Speak calmly. Listen to the person’s concerns and frustrations. Try to show that you understand if the person is angry or fearful.
  • Keep well-loved objects and photographs around the house. This can make the person feel more secure.
  • Reduce noise, clutter, or the number of people in the room.
  • Try gentle touching, soothing music, reading, or walks.
  • Build quiet times into the day, along with activities.
  • Limit the amount of caffeine, sugar, and “junk food” the person drinks and eats.

Here are things the doctor can do:

  • Give the person a medical exam to find any problems that may cause the behavior. These problems might include pain, depression, or the effects of certain medicines.
  • Check the person’s vision and hearing each year.

Here are some important things to do when the person is aggressive:

  • Protect yourself and your family members from aggressive behavior. If you have to, stay at a safe distance from the person until the behavior stops.
  • As much as possible, protect the person from hurting himself or herself.
  • Ask the psychiatrist if medicine may be needed to prevent or reduce agitation or aggression.

How to cope with wandering

Many people with AD wander away from their home or caregiver. As the caregiver, you need to know how to limit wandering and prevent the person from becoming lost. This will help keep the person safe and give you greater peace of mind.

Try to follow these tips before the person with AD wanders: 

  • Make sure the person carries some kind of ID. If the person gets lost and can’t communicate clearly, an ID will let others know about his or her illness. It also shows where the person lives.
  • Let neighbors and the local police know that the person with AD tends to wander.
  • Keep a recent photograph or video recording of the person to help police if the person becomes lost.
  • Keep doors locked. Consider a keyed deadbolt, or add another lock placed up high or down low on the door. If the person can open a lock, you may need to get a new latch or lock.
  • Install an “announcing system” that chimes when the door opens.

How to cope with rummaging and hiding things

Someone with AD may start rummaging or searching through cabinets, drawers, closets, the refrigerator, and other places where things are stored. He or she also may hide Items around the house. This behavior can be annoying or even dangerous for the Caregiver or family members. If you get angry, try to remember that this behavior is part of the disease. In some cases, there might be a logical reason for this behavior. For instance, the person may be looking for something specific, although he or she may not be able To tell you what it is. He or she may be hungry or bored. Try to understand what is causing the behavior so you can fit your response to the cause.

Here are some other steps to take: 

  • Lock up dangerous or toxic products, or place them out of the person’s sight and reach.
  • Remove spoiled food from the refrigerator and cabinets. Someone with AD may look for snacks, but lack the judgment or sense of taste to stay away from spoiled foods.
  • Remove valuable items that could be misplaced or hidden by the person, like important papers, checkbooks, jewelry, and keys.
  • People with AD often hide, lose, or throw away mail. If this is a serious problem, consider getting a post office box
  • Keep the person with AD from going into unused rooms. This limits his or her rummaging through and hiding things.
  • Search the house to learn where the person often hides things. Once you find these places, check them often, out of sight of the person.
  • Keep all dustbins covered or out of sight. People with AD may not remember the purpose of the container or may rummage through it.
  • Check dustbin containers before you empty them, in case something has been hidden there or thrown away by accident.

You also can create a special place where the person with AD can rummage freely or Sort things. This could be a chest of drawers, a bag objects, or a basket of clothing to fold or unfold. Give him or her a personal box, chest, or cupboard to store special objects. You may have to remind the person where to find his or her personal storage place.

3. Challenge: changes in intimacy and sexuality

Intimacy is the special bond we share with a person we love and respect. It involves the way we talk and act toward one another. This bond can exist between spouses or partners, family members, and friends . AD often changes the intimacy between people.

Sexuality is one type of intimacy. It is an important way that spouses or partners express their feelings physically for one another.

AD can cause changes in intimacy and sexuality in both the person with AD and the caregiver. The person with AD may be stressed by the changes in his or her memory and behaviors. Fear, worry, depression, anger, and low self-esteem (how much the person likes himself or herself) are common. The person may become dependent and cling to you. He or she may not remember your life together and feelings toward one another. Sometimes the person may even fall in love with another person.

You, the caregiver, may pull away from the person in both an emotional and physical sense. You may feel upset by the demands constant forgetfulness, repeated questions, and other bothersome behaviors.

Most caregivers learn how to cope with these challenges, but it takes time. Some learn to live with the illness and find new meaning in their relationships with people who have AD.

How to cope with changes in intimacy

Remember that most people with AD need to feel that someone loves and cares about them. They also need time with other people as well as you. Your efforts to take care of these needs help the person with AD to feel happy and safe.

It’s important to reassure the person that:

  • You love him or her.
  • You will keep him or her safe.
  • Others also care about him or her.

When changes in intimacy happen, the following tips may help you cope with your own needs:

  • Talk with a psychiatrist about these changes. It may feel awkward to talk about such personal issues, but it can help.
  • Talk about your concerns in a support group.( if you have one nearby)
  • Think more about the positive parts of the relationship.
  • Get more information. some books, articles, and DVDs/videos can help you understand how AD affects intimacy
  • How to cope with changes in sexuality

The well spouse/partner or the person with AD may lose interest in having sex. This Change can make you feel lonely or frustrated. Here are some possible reasons for changes in sexual interest.

The well spouse/partner may feel that:

  • It’s not okay to have sex with someone who has AD.
  • The person with AD seems like a stranger.
  • The person with AD seems to forget that the spouse/partner is there or how to make love.

People with AD may have:

  • Side effects from medications that affect his or her sexual interest
  • Memory loss, changes in the brain, or depression that affects his or her interest in sex.

Here are some suggestions for coping with changes in sexuality:

  • Explore new ways of spending time together.
  • Focus on other ways to show affection. Some caregivers find that snuggling or holding hands reduces their need for a sexual relationship.
  • Focus on other ways to show affection.
  • Try other nonsexual forms of touching, such as giving a massage, hugging, and dancing.

Helping Family Members and Others Understand AD

Deciding when and how to tell family members and friends

When you learn that someone you love has AD, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. You also may wonder if there is a right way to talk about it. While there is no single right way to tell others, some approaches to think about. 

Think about the following questions:

  • Are others already wondering what is going on?
  • Do you want to keep this information to yourself?
  • Are you embarrassed?
  • Do you want to tell others so that you can get support from family members and friends?
  • Are you afraid that you will burden others?
  • Does keeping this information secret take too much of your energy?
  • Are you afraid others won’t understand?

Realize that family and friends often sense that something is wrong before they are told. AD is hard to keep secret.

When the time seems right, it is best for you to be honest with family, friends, and others. Use this as a chance to educate them about AD. 

For example, you can:

  • Tell them about the disease and its effects.
  • Share books and information to help them understand what you and the person with AD are going through.
  • Tell them how to get more information.
  • Tell them what they can do to help. Let them know you need breaks.

Help family and friends understand how to interact with the person who has AD. You can:

  • Help them realize what the person still can do and how much he she still can understand.
  • Give them suggestions about how to start talking with the person. 
  • Help them avoid correcting the person with AD, if he or she makes a mistake or forgets something.
  • Help them plan fun activities with the person, such as going to family reunions; church, temple, or mosque gatherings; other community activities; or visiting old friends.

Communicate with others when you’re in public settings. Some caregivers carry a card that explains why the person with AD might say or do odd things . For example, the card could read, “My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for your understanding.” 

The card allows you to let others know about the person’s AD without the person hearing you. It also means that you don’t have to keep explaining things.

Helping children understand AD

When a family member has AD, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. How much and what kind of information you share depends on the child’s age. It also depends on his or her relationship to the person with AD.

 

Give children information about AD that they can understand. 

Here are some other suggestions to help children understand what is happening: 

  • Answer their questions simply and honestly. For example, you might tell a young child, “Grandma has an illness that makes it hard for her to remember things.”
  • Know that their feelings of sadness and anger are normal.
  • Comfort them. Tell them they didn’t cause the disease. Young children may think they did something to hurt their grandparent.

If the child lives in the same house as someone with AD:

  • Don’t expect a young child to help take care of or “babysit” the person with AD.
  • Make sure the child has time for his or her own interests and needs, such as playing with friends, going to school activities, or doing homework.
  • Make sure you spend time with your child, so he or she doesn’t feel that all your attention is on the person with AD.
  • Help the child understand your feelings. Be honest about your feelings when you talk with a child, but don’t overwhelm him or her.

Many younger children will look to you to see how to act around the person with AD. Show children they can still take with the person, and help them enjoy things each day. Doing fun things together can help both the child and the person with AD.

Here are some things they might do:

  • Do simple arts and crafts.
  • Play music.
  • Sing.
  • Look through photo albums.
  • Read stories out loud.

Some children may not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be a sign that they are upset. You may want to ask a school counselor or teacher to help your child understand what is happening and learn how to cope. Be sure to check with your child often to see how he or she is feeling.

A teenager might find it very hard to accept how the person with AD has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. It’s a good idea to talk with teenagers about their concerns and feelings. Don’t force them to spend time with the person who has AD. This could make things worse.

If the stress of living with someone who has AD becomes too great for child, think about placing the person with AD into a respite care facility. Then, both you and your child can get a much-needed break.