Alzheimer's disease may make someone very familiar to you seem like a different person. As he or she slowly loses the ability to express needs, concerns and memories, you may find that you experience discomfort observing words and behaviors that often do not make sense. Though a natural tendency is to avoid that which makes us uncomfortable, your continued presence can be very important.

If you are interacting with or planning to provide care giving for someone with Alzheimer's disease, remember that this loss of communication skill is usually related to the disease. Knowing beforehand what you might expect will help put you at ease in the situation. Preparing what you might say in response to typical situations—mentally gathering stories or interesting recounts of events from your life—in advance of the visit may be helpful. However, you should also be prepared to substantially change your "game plan" based on the needs of the person who has Alzheimer's disease.

What can you expect?

Typical Communication Changes
There are often changes in the ability to communicate, including repetition and the use of inaccurate and socially inappropriate words that may reflect jealousy, paranoia or impulsiveness. Changes may occur in these areas as well:

• Forgetfulness—problems recalling thoughts, names and memories
• Word usage—articulation, pronunciation and meaning
  Some people who have AD might mispronounce words, forget nouns or make up words to communicate what they are trying to say. They may also curse or use language that you find uncharacteristic, offensive, inappropriate or shocking. This may be a sign that the person has lost inhibition and impulse control and now says the first thing that enters his or her mind. It is important to remember that this is not intentional.
• The ability to read
  A person who was an avid newspaper reader may hold a newspaper upside down because the ability to read has been lost.
• Misunderstanding spoken instruction, confusion
  Some might take directions very literally. If you were to say, "Watch the phone," the person might literally observe the phone but not answer it when it rings.
• Comprehension and cognitive skill changes

How can you be helpful?

Visit
Alzheimer's disease is progressive, however the rate of progression differs from one person to another—and new medications are fortunately slowing the rate of progression for many people. During the earlier stages, people who have been diagnosed with Alzheimer's disease often continue to live at home.

Visits are very important to both the person with Alzheimer's and family caregivers. Alzheimer's like many long-term conditions can be very isolating for all involved. Short and friendly visits, sharing bulletins, news from church, etc., can be an important link to all.

If the person who has Alzheimer's disease is in an assisted-living facility or nursing home, communicate with staff members. Tell the caregivers about him or her, his or her growing up years, likes and dislikes, and special church or life events of which you are aware. Be certain to avoid any stories that might violate the confidentiality of your friendship, cause embarrassment or impinge on personal dignity. Personal history is very important. You have to remember that today does not exist for the person with Alzheimer's. Most cannot remember what happened today, but they might be able to tell you what their mother fixed for lunch 60 years ago.

Remember and Reminisce
Reminiscence can be a powerful and soothing tool. The process of thinking and talking about experiences can be useful and reassuring. If he or she has difficulty remembering, try gentle reminders such as, "Are you talking about you and (supply name)_____?"

To make the world logical, people with Alzheimer's may fill in their memory gaps with other recollections instead of what actually happened. Rather than accusing them of lying or altering the truth, try to relate to their underlying feelings of fear or loss of security. This may mean joining that person's world or life in the past, instead of pulling him or her back into your world.

Share Music and Scripture
Because church related or spiritual experiences seem to stimulate more than one sense and are often part of a repeated ritual, people with Alzheimer's often seem to remember hymns, Scripture, sacraments, and Biblical stories long after they have forgotten other significant information. Many pastors and congregational care teams relate stories of visits with people who have Alzheimer's when the well-known sounds of a hymn or the familiar act of taking communion seem to enable a connection, however brief, with someone who has been withdrawn.

As the disease progresses detailed memories and awareness of time and place continue to fade. While the days of the week or the names of grandchildren may be difficult to remember, songs and prayers from childhood often stay firmly rooted in one's memory.

Your visit can be helpful if you lead or join the person who has Alzheimer's in reciting prayers, perhaps prompting him or her to sing a song—maybe a hymn—known from long ago. Through repetition, a prayer becomes part of long-term memory and part of that person. It may be a good idea to find older versions of books and songs of worship because many older adults, who make up the vast majority of people with Alzheimer's today, grew up with different versions of religious texts and sang different songs from what are used in current worship services.

One of the most difficult aspects of Alzheimer's disease is that the disease diminishes and then destroys the ability to recognize and interact with once-familiar people. Someone with Alzheimer's may be unable to discuss current events or recent family happenings. Even a game of cards may be a difficult undertaking. This makes it hard to spend time together because there are few activities you both can enjoy. Repeating a well-known prayer with you and with others may be one of the few sharing rituals in which your loved one with Alzheimer's can fully participate.

Bringing someone with Alzheimer's to religious services is not always easy because he or she may be disruptive. Some places of worship, however, have special rooms designed for parents to take noisy children. These areas could also be used for someone with Alzheimer's. If that is not an option, an early morning service may have fewer people in attendance. You could also take the person who has Alzheimer's to church at a time when services are not scheduled and simply pray together. It may be possible as well to get other families who have loved ones with Alzheimer's to gather at the same time every week to worship together in a special service or at a special time.

Develop an atmosphere of acceptance
An often effective way to help engage a person who has Alzheimer's disease in conversation is to introduce yourself and your relationship to that person, giving a context. For example: "Hello. I'm Susan, from 5th Presbyterian. We were both in the Senior Adult Issues Forum." Do not be too disappointed if the person who has Alzheimer's does not recall or does so only vaguely.

Acceptance also means listening even when it takes a long time for people with Alzheimer's to formulate sentences. It also may mean prompting them with memories. If they can initiate memories, help them along with recollections of their hobbies, careers, relatives and special occasions.

If you do not understand what a person with Alzheimer's is trying to say (particularly if the visit is becoming frustrating for either of you) tell the person that you can come back to it later, when he or she might have an easier time expressing the thought.

Watch For Nonverbal Clues
To help overcome communication blocks and difficulties, carefully observe communication patterns. This includes listening attentively, watching for and responding to nonverbal/behavioral clues that might indicate hunger or thirst, discomfort, the need for a restroom break, implied meanings and expressed feelings.

Be genuine and patient
People with Alzheimer's disease are apt to express their feelings without recognizing the potential impact on others. Family caregivers are most likely to receive the brunt of the anger and frustration.

If during your visit you observe what seems to be incongruous or unfair comments or responses to a family caregiver, it is more effective to give the caregiver positive reinforcement (even if at a later time) than to chide the person who has Alzheimer's. Your visit might also provide a buffer or break for the family care giver.

For Care Givers: It also important for caregivers to acknowledge and express their own feelings honestly, but not in an accusatory way. You can genuinely reflect what you are feeling without placing blame. On some days that might mean telling a person who has Alzheimer's that you are not feeling very well or that you are having a bad day. The idea is to communicate in honest ways that let the person know he or she is loved and cared for. Try to remember that when a person who has Alzheimer's says unusual or hurtful things it is a manifestation of the disease.

It can be emotionally and spiritually draining to watch as Alzheimer's disease takes the memory and sense of self from someone you know. If you are responsible for a portion of the person's regular care, physical fatigue may worsen the emotional toll and make it more difficult to deal with anger and frustration expressed by a person who has Alzheimer's disease, particularly if it is inappropriately directed at you.

Distract
Suspicion can be a symptom of Alzheimer's. Rather than trying to argue or reason, reassure and distract. Alzheimer's disease causes one's ability to reason and remember to deteriorate. Sometimes the person is not tactful or may say things about you that are not very nice. A temporary change of subject will often solve the problem and draw the person's attention away from an undesirable behavior or feelings of hostility or confusion.

Praise
Encourage people with Alzheimer's to perform as many activities unassisted as possible. In some cases, this may mean demonstrating the correct method of eating, brushing their teeth or dressing. Rather than correcting their mistakes, praise them for what they can do for themselves.

Show respect
Sometimes visitors and caregivers are inclined to treat a person who has Alzheimer's like a child because of behaviors that seem childlike. Being patronizing or condescending may cause negative reactions. A lifetime of experiences merits respect. Help the person who has Alzheimer's compensate for losses, rather than focus on them.

Be An Advocate
Abuse and neglect of people who have Alzheimer's are unfortunate realities. Neglect may be the result of overwhelming care taking duties at home, or understaffing or lack of training in long term care settings. Abuse may occur on an institutional setting (nursing home or hospital long term care) or at home. Be alert for injuries that appear to have come from striking or indications of repeated falling.

• If the person who has Alzheimer's is in an institutional setting, report any suspicions to family members. If there are no family members involved, consult your pastor, care team coordinator or parish nurse if you suspect abuse or neglect and do not know the mandatory reporting laws for your locality.
• If the person who has Alzheimer's is being cared for by a family care giver, consult your pastor, care team coordinator or parish nurse if you suspect abuse or neglect and do not know the mandatory reporting laws for your locality.