Family Caregiver Guide  

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My mother-in-law had dementia and my family was in denial. We continued to relate to her as if things were “normal.” We simply didn’t want to believe her forgetfulness was something other than temporary. After she was diagnosed, we tried to reduce her anxiety by providing love and reassurance. We tried our best to comfort the woman we loved so much, but she was overwhelmed with fear and anxiety. The way we communicated with her was based on our reality, which was factually and socially-oriented. What we did not understand at the time was that she was unable to change. We needed to change the way we communicated with her. We needed to enter her reality.

Accepting the many changes in the family unit after a person has been diagnosed with dementia is extremely difficult for everyone involved. Cary Smith Henderson, a history professor diagnosed with Alzheimer’s disease, wrote a book entitled Partial View, an Alzheimer’s Journal in 1998, where he eloquently describes his frustration related to his “loss of self” and the difficulties he experienced when trying to communicate:

“I just feel so darn useless at times. I just feel a sense of shame, in a way, for being so unable to do things, and so dense. Very simply put, we are clumsy, we are forgetful, and our caregivers, of course, understand that…We want things to be like they used to be. And we just hate that, the fact that we cannot be what we used to be. It hurts like hell. And another really crazy thing about Alzheimer’s, nobody really wants to talk to you any longer. They’re maybe afraid of us…I can’t really converse very well at all…The words get tangled very easily and I get frustrated….”
In the earlier phases of the disease, it can be tricky for family members to figure out how to effectively communicate with the person with dementia (PWD). Due to the comeand- go nature of the illness, one day (or even moment) the PWD can seem almost “normal” and the next, words and thoughts are totally jumbled. This seesaw effect can create a lot of anxiety for family members, so they begin questioning the PWD: “Where did you go? Who did you see? What did you eat for lunch? Do you remember Jane from work? Do you remember the name of that man standing over there?” This often results in the PWD feeling angry, frustrated, or anxious–they want to remember events, names of people, what they ate for lunch today, but are unable to do so. Family members, on the other hand, ask questions because they are trying to continually gauge how the PWD is feeling, what they can remember, how well they are able to articulate their thoughts and feelings, and whether the illness is progressing. They want to keep their own anxiety in check, to maintain control of a truly uncontrollable situation. Everyone wants things to be like they used to be, but they have changed.

As the disease progresses, the PWD is incapable of changing. It is our responsibility as a caregiver and/or family member to communicate and behave differently. The key to effective communication is retaining the PWD’s sense of identity/ personal history, including them in conversations and activities, showering them with a lot of love, comfort, and validation, and letting go of things that are unimportant.

So, where do we begin? Do you sometimes feel like you are up against a wall or banging your head against one? Do you struggle to improve your quality of life, reduce your own stress level, while concurrently trying to improve the quality of life of the PWD?

If you answered yes to any of the above questions, the first step is to think about how you communicate with the PWD. You will likely find that past or even current ways of communicating are no longer working. It is time to begin accepting that new techniques need to be utilized.

Remember: this is a process, it takes time—it surely does not occur overnight. Don’t be hard on yourself, it is very difficult to change the way you have been communicating with your family member for the past 30, 40, or 50 years. Let’s examine various methods of communication which may help you restore a positive relationship with the PWD.
  • Verbal Communication This is the first and most important step in this process. Try to frame things in a positive manner. Watch your tone of voice and give verbal cues. If the PWD forgets what they were discussing, a gentle reminder MAY work well, such as “I think you were discussing...”. Consider the PWD’s personal history and preferences before making suggestions; do not impose your framework.
  • Written Communication Notes sometimes work very well. Leave small notes to let the PWD know that you love them, when the doctor appointment is scheduled, or what activities are planned for the following day. Keep notes simple and to the point.
  • Facial expressions PWDs are very astute in reading facial expressions. If you tend to roll your eyes, grimace, raise your eyebrows in exasperation, or look annoyed, it can result in angry or frustrated behavior from the PWD. Try your best to reduce these expressions and instead to convey genuine understanding and happiness. Learn to let things go.
  • Touch Holding someone’s hand or giving someone a hug (if they like to be touched) is often calming and reassuring. It can also help a PWD feel safe and less anxious.
  • Smell Is there a smell you associate with a memory of a person, meal, or place that makes you feel happy? What smells might make the PWD happy? Did they grow up in the country? Could it be the smell of pine trees? Did they traditionally cook a special meal or dish that the family enjoyed? Did they always wear a particular perfume, lotion, or cologne? Try recreating these scents. You can also buy small scent bottles at specialty pharmacies. They may trigger a memory and make the PWD very happy.
  • Music Think of the type of music the PWD enjoys and play it at home or in the car. Music often has a soothing effect and reduces anxiety. It is great to sing songs together; it doesn’t matter if you don’t remember all of the words, try humming the tune.
  • Art Many museums in NYC, including The Folk Art Museum, the Metropolitan Museum of Art , The MoMA, and The Studio Museum in Harlem have programs specially designed for people with dementia (who attend with their family members and/or professional caregivers). These programs— which provide stools or wheelchairs if necessary—utilize their respective art collections to stimulate conversation and well-being. For more information about these programs visit our website. Most museums also have large parts of their collections online, which can be accessed from home, if a PWD is unable or unwilling to attend a museum program. Try identifying paintings which evoke positive feelings and memories for the PWD (even if they were not previously an art lover). Utilizing photographs to make scrapbooks of the PWD’s life can also promote wonderful conversations about the past.
  • Color Patterns Patterns can be confusing but bright or contrasting colors are often attractive to a PWD and can positively affect their mood. Certain colors have inherent meaning, like yellow and red which are sometimes used to convey danger or warning (think about street signs). Blues and greens are generally calming colors and may help reduce anxiety.
  • Physical Approach Always approach the PWD calmly from the front and speak to them at eye level. Never approach from the rear as this might frighten the person you are caring for, especially if they have vision or hearing difficulties. Try rearranging furniture at an angle which promotes conversation.
  • Listening This is a very powerful form of communicating with a PWD. Too often, we may be distracted by the dog, the telephone, the Blackberry, the computer, the children, or the noise from the street to devote our full attention to the PWD. They may be trying their best to express a word or a thought but if we are too busy to devote our full attention, we will surely miss the gist of the conversation. Dr. Rachel Naomi Remen’s book, Kitchen Table Wisdom (1996), includes a story that demonstrates the power of listening entitled, Just Listen. “I suspect that the most basic and powerful way to connect to another person is to listen. Just listen. Perhaps the most important thing we ever give each other is our attention. And especially if it is given from the heart. When people are talking, there’s no need to do anything but receive them. Just take them in. Listen to what they’re saying. Care about it. Most times caring about it is even more important than understanding it. Most of us don’t value ourselves or our love enough to know this…We connect through listening. When we interrupt what someone is saying to let them know that we understand, we move the focus of attention to ourselves. When we listen, they know we care.” Take the time to put away all the technological devices, screen out other distractions, and devote your complete attention. It will be worth it.
  • Laughter A hearty laugh or a silly joke may help to release stress.
  • Silence Although we are often extremely uncomfortable being silent, at times, silence can be very peaceful and powerful.
The second step requires thinking outside the box in order to fully understand what your family member may actually be trying to convey. Let’s examine the following scenario, which is loosely based on a segment from the video “Into the Other Lane: Driving and Dementia” (Terra Nova Films, 2010).

Scenario 1

working life was spent on the road. Two years ago he was diagnosed with vascular dementia, after having several miniokes. Nothing was more important to Jim than driving and when his family urged him to give up his driver’s license, Jim was furious. The family consulted with his primary care physician, who agreed that Jim should have his license suspended due to medical reasons. The physician told Jim that perhaps he might get his license back at a later date, if he got better. The physician knew Jim would never drive again but was concerned about destroying his hope. Jim spent every waking hour talking about or going to the Department of Motor Vehicles to see if he could get a new and valid driver’s license. He also stopped by his physician’s office on a regular basis to convince him he was better and should have his license reinstated. Jim’s family decided to park his old truck in front of the house (with a club inserted in the steering wheel), so Jim would know where his truck was, but this only made him angrier and more determined to get his license back. No matter what his family said, no matter how many times they explained that he wasn’t able to drive because of his ministrokes, he refused to listen. Everyone was incredibly frustrated and Jim said he no longer felt like a man.

What are some of the key issues in this scenario?
  • Jim’s identity revolved around driving. His entire work life was spent in his truck, being on the road. He desperately wanted to drive and to return to the time when he was well.
  • Jim’s family was extremely frustrated with his behavior. He was obsessed with reinstating his license. They tried reasoning and arguing with him with no success. They related to him as if he was well.
  • His physician led him to believe that someday he might be able to have his license reinstated because he wanted to give Jim hope.
  • The visual cue of his truck parked outside of his house was a constant reminder that Jim could no longer drive.
  • Jim expressed that he no longer felt like a man.
Effective Strategies to Consider:
  • Reasoning and arguing did not work. This will always be a “headbanger” approach.
  • Reassuring Jim that his truck was safe and placing it where he could see it only made things more difficult. It was a reminder that he had lost his identity.
  • His physician wanted to give Jim hope, but it was false hope. He also used reason, which only served to frustrate Jim.
  • Jim didn’t feel like a man. He did not have a purpose. Perhaps his family could have told Jim they understood how difficult this was for him (validated his emotions), redirected him to talking about times on the road, removed the truck, and found some other hobby/activity that Jim would like and make him feel “manly” and useful. This response might not totally negate his desire to drive but will keep the whole family more on an even keel, provide Jim with a purpose, and help him feel understood.
Scenario 2
Susan was going to accompany her son, Joe, to a family reunion in Westchester. There were going to be 35 relatives attending the reunion. Joe decided he would be driving to the party, which would take approximately 45 minutes from their house on Long Island. They immediately ran into traffic. People were honking their horns, Jim was solely concentrating on the traffic and not speaking to his mother. Every few minutes Susan asked Joe, “Where are we? Where are we going?” Joe’s responses included “On the Cross Island Parkway,” “On the Whitestone Bridge,” “On the Hutchinson River Parkway,” “We are going to the reunion, I just told you that.” After 20-30 questions, Joe snapped and said: “Mom, can’t you remember anything? Please do not ask me any more questions, we should never have gone to this reunion!” He felt bad that he snapped but Susan’s perseveration (continuous repetition) was driving him crazy.

What are some of the key issues in this scenario?
  • Joe wanted to bring his mother to the family reunion but her continual questioning (compounded by the traffic) was difficult to manage.
  • Joe answered Susan’s questions using facts.
  • Joe was unable to pay attention to Susan because of the traffic.
  • Susan was unable to control her questioning and was anxious.
Effective strategies to consider:
  • Understand that the repetitive questioning was likely because Susan felt lost and anxious. She did not know where she was going. The confusion created by the traffic and the honking only made matters worse.
  • Joe might have engaged his mother in conversation (even though he was juggling traffic) and asked her how she was feeling and validated her emotions. She may have been feeling concerned or anxious about going to a large gathering and not recognizing her relatives. Joe needed to reassure Susan and tell her he loved her.
  • Joe may have tried to redirect Susan to discuss memories from long ago about growing up (which may have included stories about some of the relatives who would be attending the reunion).
  • Joe might have tried bringing some CDs in the car of Susan’s favorite music or singing songs with her.
These scenarios illustrate how critical it is for family members to problem solve and communicate in new and creative ways, always applying a person-centered approach.

Ten Tips for More Effective Communication
  • Tip Number 1: Try to eliminate from your vocabulary the phrase “Do you remember…?” and replace with “Let’s talk about…”, or “Look, there is Jane from work. Let’s go over and say hi to her.” If the PWD doesn’t remember Jane, try reassuring the PWD that you sometimes forget the names of people too.
  • Tip Number 2: Forget quizzing and try encouraging the PWD. Perhaps they can help you with certain tasks or chores: “Let’s make lunch together.” “It is a beautiful day. Let’s go out for lunch.” If the PWD refuses to participate, acknowledge their emotions: “I know this is difficult for you but can you try going out with me?”
  • Tip Number 3: Slow down the conversation. PWDs live in a much slower world and sometimes have difficulty following conversation. Try to make a concerted effort to include the PWD in the conversation, even if they do not logically follow the conversation.
  • Tip Number 4: Be clear and specific. Avoid phrases that are vague, such as “Do you see that man?” Be concrete. For example, “Do you see the man with the blue coat standing against the wall?”
  • Tip Number 5: Emphasize strengths, not weaknesses. Focus on the positive as opposed to the negative. Praise the PWD, but don’t be condescending. Try not to criticize or assign blame, as it will only result in angry feelings.
  • Tip Number 6: Don’t ask openended questions such as, “Do you want to go outside today?” When questions are phrased this way, PWDs often answer with a resounding “NO.” What family members fail to understand is that the “no” response may not be a meaningful NO. Try providing people with choices and phrasing questions in this manner: “Would you rather go to the park or to the movies?” or “I know you don’t feel like going out today. Let’s give it a try for a few minutes. Can you do it for me?”
  • Tip Number 7: Develop the “Art of Being Wrong”. If the PWD attempts to blame you for something you didn’t say or do, simply respond with “I am sorry.” This may be tough, but it is worth it and will eliminate arguments. Let things go.
  • Tip Number 8: Get into the PWD’s reality. People may make up stories about certain activities they did or places they visited. Get into their story, ask questions, and provide reassurance.
  • Tip Number 9: Check out your environment. Certain places may provide too much noise, which will be distracting to the PWD and make communication more difficult.
  • Tip Number 10: Limit information. If you see the PWD looks confused during the course of a conversation, you might be providing too much information. Simplify the conversation by presenting one idea at a time.

— Amy Trommer
Dementia Care Trainer

Next Issue: We will be concentrating on some of the emotional and physical behaviors that people with dementia may be exhibiting. We will provide you with ways to manage these behaviors as well as coping strategies that may help reduce your stress and that of the PWD.