Alzheimer Caregiving: Dealing with the Challenges
The three main challenges that a caregiver who provides care for a person with Alzheimer’s disease involve changes in communication skills, changes in personality and behavior, and changes in intimacy and sexuality.
As Led Zepp would put it, Alzheimer’s disease leads to a communication breakdown. People with Alzheimer have difficulty remembering things, and that makes it hard for them to communicate with others. For instance, they may forget what they are going to say even as they are saying it. As a caregiver, you need to know what they are trying to convey, but more often than not trying to accomplish that is like drawing blood from a stone.
· Communication issues brought on by Alzheimer’s disease include:
· Difficulty to find the correct word when speaking.
· Trouble understanding the meaning of words.
· Difficulty to pay attention during lengthy conversations.
· Losing train of thought when speaking.
· Difficulty to remember the steps in cooking, paying bills, dressing, doing laundry, and other activities.
· Difficulty to block background noises from the television, radio, phone calls, conversations, etc.
· Getting frustrated when communication doesn’t work.
· Sensitiveness to touch and the tone and loudness of voices.
Additionally, Alzheimer’s disease may lead the patient to forget or not understand a language if it was learned as a secondary language, and only use and understand their native language.
Fortunately, there are ways to enable communication between a person with Alzheimer’s and his or her caregiver, such as the following:
· Making eye contact and calling the person by their name.
· Awareness of the tone and loudness of your voice, how you look at the person, and, as Queen would say, your body language. Concerning the latter, an example would be standing with your arms tightly folded, which might convey that you’re tense or angry.
· Encouraging a two way conversation whenever possible.
· Gently touching the patient to guide them in lieu of talking.
· Distracting the patient with alternative activities.
Try these tips to encourage the patient to communicate:
· Display a warm, loving, matter-fact-attitude.
· Hold the patient’s hand.
· Remain open to the patient’s concerns even if they are not clear.
· Allow the person to make decisions and be involved.
· Like Axl Rose, be patient. If the person becomes angry or aggressive it’s not their fault but the disease’s.
· Take ‘time-outs’ if you yourself become angry or frustrated.
You can communicate better with a person with Alzheimer’s disease by:
· Providing simple, step by step directions.
· Repeating instructions and allowing more time for a response without interrupting.
· Not speaking about the person as if they were not present.
· Not treating the person like a child.
· Being positive. For example, instead of pointing out a mistake, suggest an alternative way to do something. Instead of telling the person not to do something, ask them to do something different. Thank the person for helping even if they don’t do something entirely right.
· Asking yes or no questions.
· Offering choices instead of asking an open-ended question.
· Using different words if the person does not understand what you’re saying at first.
· Not asking the person if they remember something you told them.
When Alzheimer’s disease is diagnosed early, the patient is aware of their memory loss. If that’s the case, try the following:
· Take the time to listen to the person if they want to talk about the changes they are undergoing.
· Be sensitive when the person makes a mistake or forgets something instead of correcting them every time.
· Once again, be patient and help when the person struggles to find the correct word; at the same time be careful not to put words in the patient’s mouth or fill in the blanks too quickly.
· Pay attention to the person’s body language and facial expressions.
Personality and behavior
Alzheimer’s disease destroys brain cells, and that changes the way the patient behaves. Common changes include:
· Becoming more easily upset, worried, or angry.
· Getting depressed and uninterested in things.
· Hiding things or believing things are being hidden from them.
· Straying from home.
· Pacing a lot.
· Unusual sexual behavior.
· Hitting others.
· Not understanding what they see or hear.
Keep in mind that some behavior changes are not cause by the disease but by medication, pain, failing vision and hearing, and tiredness. Additionally, these factors can have an influence on how the person acts:
· Sadness, stress, confusion, anxiety, fear, being overwhelmed.
· Pain or illness.
· New medicines.
· Lack of sleep.
· Infections, constipation, hunger, thirst.
· Abuse of alcohol or caffeine.
· Being in unfamiliar or noisy surroundings.
· Misunderstanding signs. For instance, in a ‘Wet Floor’ sign, the word get may be mistaken for a command instead of an adjective.
· Changes in the texture of flooring.
As the person changes, you can change as well by:
· Keeping things simple and saying or asking one thing at a time.
· Having a daily routine.
· Letting the person know that they are safe and that they can count on you for help.
· Focusing on the feelings instead of the words.
· Not arguing or trying to reason with the patient.
· Not letting the person know you’re angry or frustrated. If necessary, take a deep breath and count to ten.
· Provide the person with a safe place to pace around, and furnish them with comfortable, resistant shoes. Ensure they have something to eat and drink while they walk.
· Use music, singing, or dancing as a diversion.
· If the person tends to stray from home, enroll them in MedicAlert® + Alzheimer's Association Safe Return® Program.
· Notify the doctor of any behavioral or emotional problems.
People with Alzheimer’s disease are prone to restlessness in the evening called sundowning. These pieces of advice may help you ensure the patient goes to and stays in bed:
· Help the patient exercise daily, restrict naps, and see that they get plenty of rest at night. Fatigue can increase late afternoon and evening restlessness.
· Schedule activities that require more energy early in the day.
· Establish a quiet and peaceful mood in the evening to enable the patient to relax – low lights, minimum noise, soothing music.
· Have the patient go to bed at the same time every night if possible.
· Restrict caffeine.
· Keep nightlights in the bedroom, hall, and bathroom.
The progression of Alzheimer’s disease often brings with it hallucinations, delusions, and paranoia.
· Let the doctor know about the hallucinations and delusions, and discuss any medical conditions the patient may have and any drugs they are taking.
· Comfort the patient if they are afraid but do not argue about what they are seeing or hearing.
· Move the person to another room or take them for a walk.
· Turn the television off when violent shows are on.
· Ensure the patient is safe and cannot reach objects that could hurt them or others.
Paranoia is associated with loss of memory. The patient may forget where they put things, that you are his or her caregiver, people they have been introduced to, or instructions they have been just given. Try not to react if the person blames you for something; don’t argue with them but let them know they are safe. Gently touch them or hug them to show you care. Search for missing items to distract them and then discuss what you find.
Additionally, the patient may become agitated or aggressive as a result of suddenly changing locations or routines, a feeling of loss, excessive noise or confusion, being pushed to do something, loneliness, interaction of medications, and other causes. Try to stick to a daily routine of bathing, dressing, eating, etc, at the same time every day.
· Look for and address early signs of agitation or aggression. Finding and dealing with the cause of the behavior may solve the problem.
· Your own worries may affect the patient; try to relax and take it easy.
· Let the patient remain in control of their life to whatever extent that is possible.
· Distract the patient with a snack, object, or activity.
· Listen to the patient’s concerns and calmly reassure them.
· Keep familiar objects and pictures around the house to make the patient feel secure.
· Minimize noise, clutter, or the number of people in the area.
· Gently touch the person, play soothing music, read to or walk with them.
· Allow for quiet times during the day.
· Limit caffeine, sugar, and junk food.
· Ask the doctor to give the patient a medical exam to look for possible causes for the behavior – including checking their vision and hearing.
If the patient becomes aggressive, keep yourself and others at a safe distance until the behavior subsides. Simultaneously, try to protect the patient from hurting themselves and others. Ask the doctor whether medication could help.
We mentioned above that people with Alzheimer’s disease may stray from home. Keep the following in mind to prevent the patient from getting lost:
· Ensure the patient has an ID or a medical bracelet on them.
· Inform neighbors and the police that the person you care for has Alzheimer and has a tendency to wander.
· Keep a recent picture or video of the person.
· Lock doors, add another lock high up or down low on the door, or get a keyed deadbolt.
If the patient starts to rummage or search for things which may or may not exist, consider:
· Locking up dangerous or toxic products or removing them from reach.
· Disposing of spoiled food from the fridge and cabinets.
· Removing valuable objects such as important documents, checkbooks, charge cards, jewelry, or keys.
· Finding the places where the patient tends to hide things and check them often whilst the patient is not looking.
· Covering trash cans and keep them out of sight.
· Checking trash containers before emptying them.
Sexuality and intimacy
When caregiver and care receiver and husband and wife – or vice versa –, the disease can affect intimacy and sexual life. You may feel that it’s not all right to have sex with a person with Alzheimer – who may even seem like a stranger – or the patient may forget that their spouse is there, or even forget how to have sex. Moreover, loss of memory, changes in the brain, depression, and medication may also affect the person’s sex drive. Conversely, the patient may become hypersexual and masturbate a lot and attempt to seduce others. In any case, make sure that the person knows you love them, will keep them safe, and that others care as well. As for yourself, discuss the situation with a doctor or social worker or with a support group. Learn as much as you can about the effect of Alzheimer’s disease on intimacy, but don’t dwell on the negative either.
· Try to find new ways to spend time together as well as other ways to show affection.
· Massaging, hugging, dancing, holding hands, and snuggling are all non-sexual forms of touching.
· Consider pleasuring yourself to meet your sexual needs.