Respectful Communication with People who Have Memory Loss
Increased awareness about sports concussions, and concussions in general, has been growing. The fact that someone does not have to lose consciousness to have a brain injury is important because this was the measuring stick for whether someone who was hit in the head needed medical care or not. Our brains are floating in fluid so when the skull suffers trauma, the brain is flung against bone, causing bruising and axonal sheering. Memory loss for either a short or prolonged period is common.
In recent years there has been such an increased awareness and understanding of Alzheimer’s and dementia in the elderly. Unfortunately, it seems we’ve come to equate one with the other and that’s not the case. While this perspective leaves out the 16-year old who, after falling off a longboard, can no longer remember how to operate a microwave or what to call “that stringy thing that hangs between two trees,” it does open the door for broader conversation about dementia and its impact on overall brain function.
Dementia is really a catch-all term for a wide range of cognitive challenges associated with memory impairment. Alzheimer’s is one form of dementia. Dementia can occur as a result of injury from a sports concussion, stroke, traumatic brain injury (TBI), or prolonged cardiovascular problems. Dementia can also affect language, abstract thinking, and the ability to organize and plan.
It’s common for someone who has had a brain injury to have memory loss, slower comprehension and processing abilities, shorter attention span, and changes in behavior. These may range from short-term issues, depending on the extent of damage, to becoming lifelong challenges that dramatically alter a person’s life.
At BEST, our focus is on how to best support individuals with TBI and their families. We do this through development of brain injury support groups throughout Washington, our Project PEER program, workshops on a variety of topics, and skills classes. We hear stories every day about the challenges of living with the effects of a brain injury. One of our core values is respectful communication.
The most important aspect of communicating well with individuals with dementia is listening. Good listening skills cannot be emphasized enough. Anyone who has had a conversation with someone who has dementia knows they often repeat words, lose their train of thought, invent words to express what they’re thinking, and have difficulty putting their thoughts together in a logical way. This is frustrating for both people in the conversation. So, listening and allowing the individual to take the time they need to express themselves is important.
Another communication technique we stress is to talk to the individual as an equal. If they’re an adult, treat them as an adult. To speak to an adult as though they were a child or as if they were incompetent not only feels demeaning, but is counter-productive. Inappropriate or disrespectful communication often and results in resistance to good care. Someone is more likely to cooperate with you if they feel you respect them and this can be demonstrated through good communication.
Some key things that go into respectful communication with individuals who have cognitive challenges are:
- Patience—Allow the person with dementia to work through what they want to say, whether it’s through extended silence, repeating themselves, or processing their thoughts out loud. Its helpful to remember it takes them more time to put their thoughts together and then express them.
- Speak clearly and directly—Too much information at one time, more than one question or choice at a time, or using metaphors or euphemisms create confusion. Simple, direct statements work best.
- Clarify and verify—Clarify any questions or points to ensure both parties have the same understanding of what’s been said. This is done throughout the conversation. At the end of the conversation verify those points so both parties walk away with the same understanding of what was discussed.
- Cue, don’t rescue—This is a great technique to support someone with dementia. If they can’t remember the steps to completing a task, cue them on what the next step is instead of trying to rescue them by taking over the task. For example, Jake doesn’t have perspective of time and so taking medications on schedule is difficult for him. His wife Mary has been helping Jake associate the time to take his medications with mealtimes. Mary cues Jake, or reminds him, that meds and meals go together, thereby helping Jake create a habit of taking his medications when he sits down to eat. If, instead, Mary rescued Jake by giving him his medications as prescribed Jake loses an opportunity to create a habit of taking his medications on his own.
- Minimize distractions—It’s difficult for an individual with dementia to filter out all the sounds, smells, sights, and colors around them to focus on what someone is saying. Creating an environment in which a person with cognitive challenges does not have to sort through everything allows them to focus their energy on you and helps with good communication.
Living Well classes for those with brain injuries
Understanding that dementia in individuals with brain injury isn’t readily noticeable is important. Just because a person looks “normal” doesn’t mean they aren’t struggling with cognitive challenges associated with dementia. We take this into account when facilitating the Living Well With Chronic Conditions or Living Well with Chronic Pain classes.
Some things we do to increase the chances for success in our classes is to incorporate some of the strategies below. These strategies are helpful, respectful ways to engage with individuals with cognitive challenges, whether they are in a class, at work, or at home.
- Brain Bucks—The idea of “brain bucks” is like money in the bank. You only have so many bucks and as you spend them, your mental energy lessens. Individuals with brain injury experience neuro-fatigue and tire more easily than others because their brains are trying to process everything around them. Taking frequent breaks or reducing stimulus, for example, make the most of the brain bucks you have.
- Minimizing Distractions—We ask that only one person speak at a time and that there aren’t any side conversations going on. This allows a person with dementia to focus on what’s important in that moment without becoming overwhelmed or confused. This includes environmental stimulus. Bright lights, street noises, and conversations in the hallway are all examples of environmental stimulus that someone with a brain injury trips over when trying to stay focused on a task or speaker. Finding the balance so that everyone participating in the class has a meaningful experience is challenging, but well worth the effort.
We also use all of the techniques I mentioned earlier to ensure everyone feels included and not overlooked. This is a way that allows us, as facilitators, to be more confident that someone is actually engaged and understanding the material, not compensating, or acting “as if” in order to avoid embarrassment.
Outside of the class there are challenges individuals with brain injury have that need to be considered. Initiation—the ability to act on a thought or task—is a common challenge for those with dementia, especially as a result of frontal lobe damage (frontotemporal dementia). The buddy system built into the Living Well curriculum is a fantastic tool that allows classmates to encourage and support one another in achieving goals and remembering next steps.
There are many tools and strategies to support someone with dementia. I’ve shared some of them, but there are so many others. The most important thing to remember is that dementia and the behaviors that accompany it are not deliberate choices, but a degenerative condition that affects not only a person’s brain, but their self-image. Communicating in a respectful and supportive way increases the likelihood of positive outcomes and a strong, trusting relationship.
Contributor Gloria Kraegel is executive director of the Brain Energy Support Team (BEST), which promotes leadership, services, and programs built by and for individuals with brain injury and their families. Learn more at www.brainenergysupportteam.org.
A Few Facts about Brain Injuries
I like sports, particularly football and hockey. Growing up in North Dakota, I skated outdoors and went to a lot of hockey games. I also attended high school and university football games. Though I like the games, I do not like to see a lot of violent plays and hits.
Head injuries are dangerous, and can leave young players with memory and other cognitive challenges. These may be short-term, but could potentially have life-long effects. Here are some concussion facts:
- You don’t have to lose consciousness in order to suffer a concussion.
- Common symptoms include imbalance, headache, confusion, memory loss, vision changes, hearing change, mood change, fatigue, malaise and, in some cases, loss of consciousness.
A traumatic brain injury (TBI)—also known as an intracranial injury—occurs when an external force traumatically injures the brain. TBIs can be classified based on severity, mechanism, and features. Brain injuries not only happen in sports, but also can be caused by auto accidents, falls, firearms, chemical/toxic exposure, lack of oxygen to the brain, tumors, infection, and stroke.
Learn more about TBIs in the YouTube video, Every 21 Seconds: The Story of 8 Survivors of TBI.
Contributor Mary Pat O’Leary, RN, BSN, is a planner at Aging and Disability Services.