Understanding and Addressing Emotions in Persons Living with Dementia

We are grateful to the caregivers and support partners who have been willing to share their experiences and feelings in our support groups each month. Below is a piece on understanding and addressing emotions in persons living with dementia, by Jodi Melius, RN, at the Mayo Clinic. Jodi currently facilitates several support groups at Mayo Clinic. For more information on our support groups, visit the programs & events tab.

Emotions like anger, fear, frustration and loss are feelings that we all experience as humans. Sometimes
when a person with dementia expresses these emotions, they may seem out of context, be harder to
understand, and can make communication challenging for both the person with dementia and those
who support them.

Through our work, listening and being alongside those impacted by dementia, we’ve learned a bit more
about emotions. My hope is that by sharing this information, readers may find new ways to view,
understand and communicate with one another.

Often, when it is difficult for the person with dementia to communicate a need, a negative emotion can
surface out of frustration, a sense of loss of control or purpose, or even fear. If the world around them
does not make sense, it can be scary. Sometimes the person does not recognize their surroundings, or
the people in that space, and they will react based on that. These may be short moments, or longer
periods of confusion, depending on the person and the disease that is causing the dementia.

At times, people with memory loss can lack insight into their own deficits, and this can be challenging as
the desire for autonomy and control can conflict with concerns about safety. These complex dynamics
can cause frustration for all involved, with an amplification of emotion at times from the person living
with dementia.

Where do we start? First, try to understand the emotion behind the reaction. Is the person afraid? Or
are they frustrated by feelings of lack of choice, control, or losing their sense of purpose and ability to
contribute? All these feelings and losses can fire up emotions and reactions that may seem heightened
or like they are coming out of nowhere. As we try to understand the emotion, can we make space to
validate it, and potentially diffuse the situation? Saying things like, “I sense that you are worried about
something, can I help?” Offering choices when we are able, versus doing for the person, can also diffuse
negative emotions.

Many caregivers share that their loved ones will soak up and mirror the emotions that they are putting
out. In other words, pause and evaluate your tone of voice, body language and words you are using. Is
there a different approach that may be helpful? Caregiving can be exhausting. I am not going to sugar
coat that. Sometimes it is nearly impossible to find the strength to put good energy out there. But when
you can find the energy to pause and evaluate your own emotions, it may help both of you land in a
better space.

We often feel the need to make sure that the person with dementia is living in our reality, and we can
get into debates and feel that correcting is the right and important thing to do. This can cause much
frustration and anger. The person living with dementia’s reality is as real to them, as any reality that we
live in. Using an approach like Improvisation can change the conversation from “no, that’s not right!” to “Yes, and… tell me more, how do you feel about that?” This style of communication empowers the person with dementia to be part of the conversation, sharing what’s meaningful to them, even if it’s not our reality. Some think of this as lying, but it’s truly meeting the person where they are at, acknowledging their truth in that moment.

Safety concerns are a reality- for the person with dementia and for you as a caregiver or support
partner. There is a lot of gray and you know your person and situation the best. Perhaps some of these
practices: pausing and reflecting on what may lie under the expressed emotion, evaluating your own
emotions, as well as using creative and affirming communication practices, may bring more moments of
calm and increase meaningful connection.