For the millions of Americans suffering from Alzheimer’s and dementia as well as the families and friends who care for them, communication is a challenge. What we take for granted every day becomes gradually more difficult as the parts of the brain that manage word production and understanding are affected by the disease. Words fail us and it is easy to pull away verbally and emotionally. And yet, it is at this pivotal moment of great need that we must learn new ways to speak and to listen.
More Than Words
Several famous studies on nonverbal communication conducted by Dr. Albert Mehrabian found that 93% of communication is non-verbal. 7% of any message is conveyed through words, 38% through certain vocal elements, and 55% through nonverbal elements (facial expressions, gestures, posture, etc.)
As words begin to fail, the nonverbal components of communication become even more important for an individual with Alzheimer’s disease. As caregivers, they are important tools in our resource kits of care.
The Approach: Teepa’s Tips
Our approach, both literally and figuratively, is the foundation of our success in connecting with an individual with Alzheimer’s. We set the tone of any interaction in the way we come to them, what we say, how we say it, and how we listen. Occupational therapist and dementia expert, Teepa Snow, MS, is a wonderful educator of families and professionals that care for individuals with Alzheimer’s and other dementias. She has 10 simple steps that are helpful for laying the ground work for successful interactions:
- Knock: Always announce yourself
- Greet the person and smile: Avoid terms of endearment as they can be patronizing.
- Move slowly: Offer your hand in “handshake” position
- Stop moving at the boundary of personal space (4ft away) and seek permission to approach
- Move from the front to the side of the person
- Greet with a handshake & your name
- Slide into hand-under-hand hold to offer connection and safety
- Get to the person’s eye level
- Be friendly: Make a nice comment or smile
- Give your message: Simple, short, and friendly
Just like any relationship, good interactions are built out of trial and error. If one approach doesn’t work Teepa Snow recommends to simply STOP and back off for a while. TRY AGAIN later modifying something in your efforts. Just because one technique worked with one person doesn’t necessarily mean it will work for another person. Just because it worked at one moment doesn’t mean that it will be the right approach in a different moment, even if it is the same person. Don’t let the uncomfortable nature of a failed interaction dissuade you from trying again later.
According to occupational therapist, Sue Paul, a blogger of the “Dementia Queen” and political advocate for Alzheimer’s disease, “incorporating gestures into our interactions with clients is a grossly underused technique for improving communication for persons with Alzheimer’s.” She goes on to point out, “because aphasia and apraxia are two of the big A’s in Alzheimer’s disease, verbal communication alone is not adequate to foster comprehension in someone with the disease. The words ‘stand up’ spoken to someone with Alzheimer’s are rarely effective by themselves. Coupling the words with demonstrated action packs a bigger punch. It is important to remember that aphasia is not just inability to understand spoken language, it also includes written diagramed, and symbolic language use too. Sometimes affirmation or positive feedback can only be relayed through gestures like a ‘thumbs up’ or ‘ok’ when a movement is preformed correctly by a person with significant aphasia.”
It is really important to understand not only the type of dementia but the stage of dementia that someone is in and to tailor your communication accordingly. While some actions may be condescending to clients with the beginning stages of dementia, individuals with certain types or more severe stages may find demonstration and gesturing helpful.
The context of audience, or who you are speaking to, is one of the most important aspects of human communication. When a loved one becomes suspicious of us, has bursts of anger, confusion, or other emotions, it can feel like you don’t know who you are talking to any more. Difficult behaviors are a challenge for loved ones to face. Knowing the stages that accompany the disease can be helpful in understanding what is coming from your loved one and what is simply the disease talking. When we begin a conversation from the starting point of knowledge and compassion, we are able to be present and oriented when difficult and uncharacteristic behaviors occur.
Here is a brief overview of the stages of Alzheimer’s disease
Mild Alzheimer’s: Symptoms include difficulty forming and retaining new memories, performing complex tasks and word finding. May repeatedly ask questions or lose their way to familiar places.
Moderate Alzheimer’s: Symptoms are more pronounced and they are confused about location, date, or season. They have trouble recognizing familiar people and display significant personality changes such as agitation, suspiciousness, hallucinations or delusions.
Moderate to Severe Alzheimer’s: Symptoms include inability to choose appropriate clothing for season or occasion, needed assistance using the shower, finding the toilet, and taking care of personal hygiene. May have sleep problems, wander or get lost.
Severe Alzheimer’s: 24 hour care is often required at this stage. They won’t recognize close family, and will require assistance to walk and eat. They lose control of bowels and bladder and may groan, mumble, scream or speak gibberish.
Listening & Speaking
Communication is built on the back and forth roles of speaking and listening. While we think of the person with the disease as being changed in the way they give and receive information, it is important that caregivers adapt the way that they give and receive information.
Changing the way we listen & speak to a person with Alzheimer’s is crucial for creating connection.
- Leave plenty of space and time for them to find and form their words. Your patience will help them to relax and feel your attentive presence.
- If a person is struggling to find a word, make a suggestion through a question like, “Are you wondering when your son is coming?”
- Use positive touch to reassure and show that you are listening. Be respectful of personal space.
- Gauge their body language and tone and respond with appropriate facial expressions such as concern, surprise, or joy. Show that you are listening through your facial expressions.
- Don’t correct their false memories or ideas. Come into and participate in their reality.
- Keep messages simple. A person with Alzheimer’s is not going to be able to retain information or instructions.
- Keep tasks to three steps or less. Remember to do things with the person and not to the person.
- Be in the moment. Avoid phrases like, “do you remember when” or questions about what happened recently. It may only frustrate.
- Don’t correct if they ask you the same questions repeatedly. Simply redirect the conversation to another topic of interest.
- Rephrasing what was said to make sure that you understand can be a positive way to show that you are attentive to an individual and it can cut down on misunderstanding.
- Minimize the amount of background noise and distractions when speaking or listening.
- Accentuate the positive. According to dementia care consultant, David Troxel, persons with dementia often cannot be self-affirming- as a result of loss of insight, language, and memory- and need affirmation in small doses from us all through the day. Take time to look for the ways in which a person makes a positive difference in themselves and others and always be genuine.
Loss in an inevitable part of dementia. People with the disease suffer the loss of their ability to do things that they used to, their communities, and their memories. Families suffer the loss of the person that they use to know. Identity is called into question in a deep way. While hope and resilience are of the utmost importance, taking time to be vulnerable and grieve those losses are crucial components in processing the effects of the disease. If you are providing care to a loved one with the disease here are a few tips:
- As part of your self-care routine, build in time to reflect on how the disease is impacting you in a way that is meaningful to you (through journaling, walking, fishing, making art etc.)
- Seek out support groups for family members of individuals with Alzheimer’s or dementia. The Alzheimer’s Association is a wonderful resource to plug into. www.alz.org
- Choose 1 or 2 close friends to be vulnerable with. Request that they walk through this journey with you. Build a community of personal and professional support for yourself.
- Actively invest in your own mental health through professional counseling services. Talk to your HR department and ask if your company has an Employee Assistance Program or caregiving benefit they can refer you to.
Finally, Anne Morrow Lindbergh offers poignant words of wisdom for those of us grappling with this disease, communication, and caring for a loved one well. “When you love someone, you do not love them all the time, in exactly the same way, from moment to moment. It is an impossibility…Security in a relationship lies neither in looking back to what was in nostalgia, nor forward to what it might be in dread or anticipation, but living in the present relationship and accepting it as it is now. Relationships must be like islands, one must accept them for what they are here and now, within their limits – islands, surrounded and interrupted by the sea, and continually visited and abandoned by the tides.”
~ Anne Morrow Lindbergh, Gift from the Sea