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Changed Forever
By Mayo Clinic Newsletter Published 2006-06-27

Changed Forever

Caring for someone with Alzheimer’s disease

Mayo Clinic Health Letter, July 2006

 

          It’s estimated that more than 4 million Americans have Alzheimer’s disease.  Once diagnosed, their lives are forever changed.  If you find yourself in the role of caregiver to someone diagnosed with Alzheimer’s, it may be helpful to learn there are ways to make a difficult situation better for both of you.

 

Become knowledgeable

          You may not be able to control the course of Alzheimer’s disease, but you can determine how you’ll provide care and cope with expanding responsibilities.  It’s helpful to have realistic expectations of the person’s needs and what you’re capable of providing.

          Start by taking an active role in learning about the disease:

·        Talk with professionals – Talk with your doctor and other health care professionals about the disease process.  Ask what they’d suggest to help you cope as a caregiver.

·        Read, read, read – Information is power.  It can help you anticipate and plan for the future as well as adjust to changes in your loved one’s life and in your relationship.

·        Join a support group – The Alzheimer’s Association has chapters across the country that can provide support and education to families and caregivers.  For the nearest chapter, call 800/272-3900 or visit them on the internet at www.alz.org.

 

Behavior changes

          You may find it helpful to keep a notebook to record day to day changes in the person’s perception, memory, judgment, behavior and abilities.  This helps track disease progression, and it can be useful to the medial team working with the person with Alzheimer’s disease.

          People with Alzheimer’s commonly experience anxiety, worry and agitation.  Showing these feelings may help others understand their needs.  Many with Alzheimer’s don’t have serious behavioral problems. But if there are behavioral changes, it can be one of the most difficult aspects of the disease.  Sometimes, brain changes may bring on aggressive behavior.

          As behavior changes occur, be patient.  Be reassuring as you respond to your loved one’s emotions.  Reality changes occur in the mind of people with Alzheimer’s disease – it’s generally best to avoid arguing or trying to convince them that their thinking is off.

          Instead, you may find it’s best to join in their reality and respond accordingly – some caregivers refer to this as “therapeutic fibbing.”  For instance, you might respond to concerns about seeing a tiny person in the corner of the room like this: “Yes, I see the little person over there too, but he’s not going to hurt us.”

          Keep in mind that the person is expressing real emotions.  And, even if the reasons behind those emotions aren’t real, you can help engage your loved one by listening, making eye contact, offering feedback, using familiar words and clear statements.

          Sometimes, distracting or redirecting the person’s attention to a more positive situation can be helpful.  Using visual cues, - such as pointing or even demonstrating an action – can also help ease communication difficulties.

         

Control the setting

          Your loved one’s behavior can easily be affected by the environment.  Try to:

·        Reduce the racket – A noisy room can be overwhelming for someone with Alzheimer’s.  Tone things down by turning off the TV and putting on some quiet music.

·        Avoid moves to new homes – A change from one home environment to another can result in a decline in function for someone with Alzheimer’s disease.

·        Avoid large, loud settings – Places such as shopping malls can be very disorienting for someone with Alzheimer’s disease.  Instead, choose to visit familiar location, such as a park or library.  Likewise, large family gatherings involving active grandchildren may be difficult for someone with the disease.  Try not to pack too many activities into time away from home.

·        Control visitor encounters – Limit the number of visitors at one time.  Ask them to call before coming in case plans need to change.

 

Handling daily care

          With time, your loved one may find it increasingly difficult to accomplish everyday tasks that most people take for granted.  Sticking with a daily routine tends to make these day to day tasks more manageable.  You’ll likely find that adaptations will be needed such as:

·        Breaking tasks down into small, orderly steps – For instance, personal care, such as oral hygiene, can be done in simple steps.  You might prepare by placing the person’s toothbrush and paste on the vanity counter in clear sight.  If a task is upsetting or frightening, try to distract from it with a favorite song or by telling a story.

·        Limiting choices to avoid confusion – Getting dressed, for example, may seem overwhelming when presented with a whole closet full of clothes.  If that’s the case, pull out two outfits ahead of time and let the person make the final choice on what will be worn.

At some point, for the safety of your loved one and others, you may have to make sure that your love done doesn’t walk outside alone, use the stove or drive a car.

          Avoid slipping into baby language while assisting in daily tasks.  Instead, maintain communication with patience and care, speaking in a simple a clear manner.

 

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