How to communicate with someone who has dementiaiStock/Dean Mitchell
There’s nothing scarier than learning that someone you love has been diagnosed with a long-term, incurable illness—especially when it slowly erases their most cherished memories. “What’s often misunderstood by family, friendsm and caregivers is that individuals with Alzheimer’s continue to have emotions, but are unable to logically understand, feel, and resolve these emotions with reason,” says Rebecca Axline, LCSW-S, supervisory clinical social worker at Houston Methodist’s Nantz National Alzheimer Center. For example, a wife tells her husband that he can’t drive anymore because the doctor said so, the husband becomes angry, and, long after he’s forgotten why he’s angry, his behavior is still agitated and resistive. The wife soon becomes overwhelmed because he’s acting out and she doesn’t know why. “Alzheimer’s disease presents the need for a shift in how you relate, communicate and create new memories,” explains Axline. “If you continue to do things the way you always did, everyone will feel sad, bad and frustrated, but at the same time, moments and memories can still be good—they simply have to be different.” Here are ways to hold on tightly to the intimate bond you once had.
First, learn about the disorder your loved one has been diagnosed withiStock/mihailomilovanovic
When you can grasp a better understanding of the condition your friend or family member is dealing with, it only makes it easier for you to have empathy and remain emotionally connected. “Sometimes families believe they are seeing a ‘loss of emotion’ but they are actually observing the patient not being able to understand directions or conversations and participate appropriately,” says Jennifer L. FitzPatrick, clinical social worker and author of Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One. “This leads to guilt and frustration on the part of family and friends.” Don’t hesitate to do your research or ask the patient’s medical staff as many questions as you may have. In addition, the Alzheimer’s Association offers endless information about the disease and most other irreversible dementias through their website, classes, and support groups. You’ll meet others who have struggled with emotionally connecting with their friend or family member, and better prepare yourself for what’s to come. Here are 16 things people with Alzheimer’s disease wish you knew.
Start focusing on your emotional connection early oniStock/dolgachov
Patients are now getting diagnosed with Alzheimer's disease even earlier than ever, when the disease has not fully progressed to a level of total confusion or disorientation. “During these early stages, try having conversations about what you both can do to stay connected as the disease progresses,” suggests Celeste Holbrook, PhD. “One exercise I practice with my patience is having the diagnosed individual tell their close family member or friend something special that they would like them to continue even long after he or she can no longer recognize that person. This gives the friend or family member some clarity and concrete action, to know that he or she can and should continue to do or say certain things despite the toll the disease has taken.” Even the concept of the Alzheimer’s patient knowing that these behaviors will continue long after they can properly respond is immensely encouraging. Though it’s important not to make promises you may not be able to fully keep. “Countless caregivers promise that they will never…put the loved one in a nursing home, bring strangers into the home, etc.,” says FitzPatrick. “When a caregiver makes and strives to keep such promises, anger and resentment often build which decreases the emotional connection.” Instead, tell your loved one you will arrange the best care you can possibly find without saying anything more specific.
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If you are a caregiver, don’t do it aloneiStock/monkeybusinessimages
Most caregivers lose their emotional connection to the patient with Alzheimer’s disease sooner than other individuals in the patient’s life because they stop being a husband, son, grandson, etc. They begin looking at their loved ones as patients more than as their wife, mom, or grandmother. “Find other friends, family, and paid help so you can have some time just being emotionally connected, rather than having a ‘clinical’ relationship,” says FitzPatrick. If you are a full-time caregiver, and for whatever reason cannot seek outside help, be sure to schedule some time away so you can refresh your mind, fortify your patience, and get some space. “As with any long-term illness, you will be grieving the loss of your loved one far before they die, so it’s important to take measures to look after your own well-being—with therapy, meditation, time with other friends, or getting a professional to clean your house—so you can be open and available to emotionally connect with your Alzheimer's patient,” says Dr. Holbrook. These tips can help you avoid caregiver burnout.
Focus on feelings, not factsiStock/monkeybusinessimages
If a person adoringly says, “I have seven grandchildren,” focus on the blessings, not the fact that, in reality, they may only have four. This keeps you from being “that mean daughter who is always correcting me,” says Pamela Atwood, director of Dementia Care Services at Hebrew HealthCare in West Hartford, Connecticut. “If the person says, ‘I’m worried that Buddy isn’t home from school yet,’ provide reassurance that Buddy is safe—even though you know Buddy is 53 and at work.” One of the quickest ways to lose an emotional connection with your loved one who has dementia is by putting them in their place—even politely. “If your loved one believes it’s snowing outside, even in mid-July, it’s not worth correcting her, as she’s only going to feel bad that you are arguing with her and she likely won’t believe you anyways,” FitzPatrick says. What you can do instead is give lots of genuine compliments. “Compliments combat reduced self-worth and self esteem, and make you feel good, too,” says Atwood. Here’s what caregivers can expect from the 7 stages of Alzheimer’s disease progression.
Incorporate the arts into your interactionsiStock/laflor
Studies show that using the arts can bypass certain effects of Alzheimer's, enhance communication and emotional connection, as well as create new pathways in the brain with which to access memories. “Music, in particular, is very calming and can lift the spirit of a person with Alzheimer’s,” says Yuval Malinsky, CEO at Vigorous Mind, Inc., an organization that helps dementia patients communicate with their family and friends. “Play him or her music or musicals that you know makes them happy or evokes positive feelings and memories.” And don’t hesitate to sing along—even if it feels silly. It often surprises family and friends that the patient with Alzheimer’s or dementia may still be able to sing even if she can’t talk. “When the activities you previously enjoyed together become increasingly difficult, you may have to adapt the activity or explore new ones,” says Holbrook. The person with dementia is becoming more reliant on experience rather than words for connection—and touch is very effective. As certain activities become less available, simply replace them with new ones. Listening to music together, going to the movie theater, or exploring the community garden are great lower-key activities that can have you chatting without relying on past experiences to keep the conversation rolling.
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Create a list of joysiStock/BraunS
Favorite books, songs, foods, holidays, pets, vacation destinations, etc., all provide wonderful topics for reminiscing and help you both remember what makes you smile together. Share photos and look at pictures together to remind them of the time captured in the images. “Long-term memories tend to survive longer than short term ones, so start telling them a story from long ago that involves them,” suggests Tracey Lawrence, founder of Grand Family Planning LLC. “Ask them to join in with details, but don't be too persistent, as sometimes they may remember but have trouble understanding what you say to them.” Favorite movies or TV shows are also a great way to connect, especially when they involve some humor. Here’s how nostalgic thoughts boost happiness.
Be mindful of your body language and facial expressionsiStock/Alessandro Di Noia
Position and space in relation to your loved one has a lot to do with emotional connection. “Joining an individual on their eye level—sitting down, standing up, or even lying down—shows the person that he or she is respected by you and can trust you,” says Erica Hornthal, a psychotherapist specializing in cognitive disorders and CEO of Chicago Dance Therapy. “Remember you want to see eye-to-eye with this person to help them feel supported and validated.” While it’s undoubtedly difficult, given the circumstances and your loved one’s condition, try and smile. “Your loved one is not able to understand much of what you’re saying, but he can read into your body language and facial expressions,” says FitzPatrick. “Even if he doesn’t recognize you specifically, he will recognize and respond best to a friendly face.” Here are 8 ways to use body language to build trust.
Encourage physical movementiStock/Yuri_Arcurs
Exercise has been shown to relax the mind, increase the ability to communicate, and therefore allow for greater emotional connection to take place—plus, it’s a great stress reliever for caregivers, too. “The emotional high from the feel-good endorphin released during brisk activity can help make your time together both positive and healthy,” says Holbrook. “A walk around the block, a tandem bike ride or enjoying a yoga class together can help release some of the anxiety that both of you may be feeling surrounding the disease.” Take some time to notice the things that make your family member unique during these activities. The way she always slows down to look at the peonies or the way he adjusts his hat four to five times in an hour. It can also help you both have positive, bonding time together without the pressure of too much conversation.
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Incorporate the five senses into your activitiesistock/monkeybusinessimages
“Listening to a familiar song, tasting something sweet, touching a pet, or watching something bright and colorful takes the expectation of the past out of the equation and allows new memories with positive emotional connections to form,” says Hornthal. “As humans we crave affection and touch, so don’t hesitate to lend your loved one a hand to hold. If he reaches out and grabs your hand, an immediate emotional connection is created.” Just remember to take your cues from the person with Alzheimer’s disease and never force touch where it might not be warranted. As the disease progresses, you may find that using touch more frequently than words helps keep the relationship strong. “Most people with advanced Alzheimer’s disease are only being touched for hygiene, medical exams, etc., so holding hands in an intimate, appropriate way, like brushing their hair or giving them a massage or manicure, are easy ways to connect without words.”
Stick to living in the momentiStock/gpointstudio
Taking the moment for what it is and the individual for who she or he is takes away assumptions and expectations and allows for genuine connection. Try and avoid initiating “normal” conversations with a loved one who has advanced Alzheimer’s disease. “Asking Mom how her day went or asking your friend what she had for lunch can be very frustrating for both you and the patient, as she might try and answer your question but not have the right words, or get angry that you’re asking her questions that make her feel inadequate,” says FitzPatrick.
Allow yourself to feel your own emotionsistock/Eva Katalin Kondoros
Times will get tough and you will get frustrated, but remember that the person living with Alzheimer’s is feeling those emotions as well. “Practicing patience will allow you to remain calm and relaxed, which leads to a greater ability to connect emotionally,” says Hornthal. “If you feel like you’re losing your cool, take deep breaths or excuse yourself for a brief walk around the hall or block. Taking repeated trips down memory lane and constantly facing the stark reality that your loved one is seemingly slipping away from you emotionally when he or she is with you physically takes its toll. “Many times families visit around meals or going out for treats, which not only helps shorten or stagger the visits, but ensures that the patient maintains blood sugar and energy levels,” says Atwood. And remember that you’re only human, and are doing the best you can do for your loved one. “Accepting your emotions and expressing them appropriately, even in the presence of your loved one, allows them the chance to connect with you in those emotions,” says Hornthal. “Furthermore, it may allow the individual with Alzheimer’s to care for you, which not only facilitates emotional connection, but also makes them feel useful, helpful and needed.”
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