As Alzheimer’s or other dementia illnesses progress, families face numerous and ever-expanding challenges. One challenge that I hear about from friends and family is how to maintain respectful and compassionate communication with their loved one.
A person’s memory and ability to recall what’s happened even minutes earlier may change from day to day or may be worsening at a rapid rate. If you’re reading this, let me reassure you, you are not alone if you’re confused, frustrated or overwhelmed.
At times you may feel as if you’re losing your mind, as your loved one remembers some things, but not others. It’s normal to feel exhausted from repeating yourself or reminding them, or trying various techniques to communicate in a way that works for you and your loved one. Many people in this situation understandably lose their patience and then feel ashamed that they’re not a saint, and feel guilty about their relationship with their loved one.
No matter the stage of impairment of your loved one, compassionate communication is possible. There are many skills that can be learned, practiced, and used. I know that this is a heartbreaking and frustrating journey, and it is unique to each individual and family.
I also know that it’s important that you start by being compassionate with yourself. This means that it’s ok to acknowledge to yourself that this is hard. If you are also responsible for this person’s personal care, you may feel worn out and like you have very little left to give. That’s OK. Be kind to yourself first and make sure you’re focusing on your own self-care so that your battery is charged and you have more joy, humor, and energy to communicate with your loved one in a respectful and compassionate way.
Here’s some advice from me and from the Alzheimer’s Association for compassionate communication:
Remember that a person’s ability to communicate, remember, and understand you is as unique as they are, even with a diagnosis of Alzheimer’s or dementia.
- Engage the person in a one-on-one conversation in a quiet space that has minimal distractions. Turn off the TV, laptop, or radio.
- Remind them of who you are if needed. For example: You can do this in a very loving way, “Good morning, it’s me Emily, your beautiful daughter.”
- Speak slowly and clearly, with short sentences.
- Maintain eye contact. It shows you care about what he or she is saying.
- Give the person plenty of time to respond so he or she can think about what to say.
- Don’t finish their sentences or interrupt.
- Be patient and offer reassurance. It may encourage the person to explain his or her thoughts. For example: “I really want to hear this, take your time.”
- Ask one question at a time.
- Ask yes or no questions. For example, “Would you like some coffee?” rather than “What would you like to drink?”
- You can also provide limited acceptable choices: “Would you like coffee or tea?”
- Avoid criticizing or correcting. Instead, listen and try to find the meaning in what the person says. Repeat what was said to clarify.
- Offer clear, step-by-step instructions for tasks. Lengthy requests may be overwhelming.
- Give visual cues. Demonstrate a task to encourage participation.
- Written notes can be helpful when spoken words seem confusing.
- Don’t pull away; your honesty, friendship, and support are important to the person.
- Do remind the personof how much you care for them.
A Learning Curve
We can all learn these communication techniques, used not only by professional caregivers, but by Special Education teachers, and good nursery school teachers as well. When you think about it, many of these habits of thoughtful communication are ones we could use every day with our children, spouses, friends, aging parents, really, everyone in our lives. Trying to consistently show respect and patience, even when we are tired, is not easy. Our sadness and anger over the situation we and our loved one are in can come to the surface. If that’s your situation, try to stop and breathe, take a break and think about more self-care. It’s also good to remember that no matter how advanced their dementia is, and how difficult it might be to see it, the person we care about is still in there–and they still care about us too.
One of my patients told me that her dad, who had Alzheimer’s, became unable to hold onto new information for more than a minute or two. After his wife of 60+ years died, he kept asking for her repeatedly every day. The family wanted to answer honestly and found themselves explaining over and over that his beloved wife, their mom, had died. Then, this poor man had to re-experience the traumatic news of his wife’s death as if for the first time and was devastated with the resulting pain and shock 10-30 times each day. The compassionate path in instances like these is, to be honest, and just say, “Oh, mom’s not here right now,” and then ask him to recount the story of when they met, or to re-tell a favorite story about their lives and redirect him to talking about something he enjoys talking about.
Less is More
A friend who is caring for her mother also recommends the strategy of providing less information. Keeping things very simple. With too much information, many people become confused, which can bring on a very anxious, distressed, and even paranoid reaction. The key is to listen without interruption to their stories, even the ones you know are not true, and not argue, or try to correct. This can be hard, in fact, you may have to bite your tongue.
It’s fine to say, “Ok, thanks for telling me that.” And then redirect to something easy and clear, “Would you like some coffee or tea?”
I have a friend who uses humor to get her mom laughing, which quickly gets her off the anxiety track. Sometimes when caring for a person with Alzheimer’s it’s kinder to give limited information and lots of diversion and redirection, in much the same way you might with a young child.
I have friends whose mom was unable to recognize her children, but she could play her harmonica and sing a whole playlist of songs with her family. This was a lovely way for the family to stay connected and experience the joy of their mom.
We know that music has been shown to offer emotional and behavioral benefits for everyone and especially for people with Alzheimer’s disease and other types of dementia. Research suggests that brain areas linked to musical memory are relatively undamaged by the disease. This, surprisingly, allows some people who are otherwise highly impaired to belt out a favorite song, remembering all the lyrics perfectly. Enjoying music together, singing, and even dancing along, are also great ways for friends and caregivers to connect with the impaired person. It can reduce anxiety, stress, and depression for everyone.
A 10-week study of people with Alzheimer’s was conducted by Rita Freidman Ph.D., RN, and Ruth M. Tappen, RN., at the University of Miami. They compared 30 minutes of sitting conversation to walking and talking for 30 minutes, three times a week, to see the effect on the quality of communication. The results were that the communication improved significantly in the walking and talking group compared to the conversation-only group. Hmm? I think this carries over to everyone, whether they have Alzheimer’s or not.
Friendly body language, a warm touch, a hug, and making eye contact will help your friend or family member be more open to connecting with you. Sometimes the emotions being expressed are more important than what’s being said. What matters when visiting, caring for, and spending time with someone with dementia is just the time together–being 100% present, and living in the moment with them.