Distress is a way to communicate that something feels unsafe, uncomfortable, challenging, or off-balance. Further, distress in dementia presents in different ways. Common examples include activity avoidance, physical and verbal aggression, pacing, restlessness, yelling, and sleep disturbances.

Distress in dementia can occur for a variety of reasons (remember, all behavior is communication). For example:

• Medical: urinary tract infection, ear infection, physical injury, pain, etc.
• Sensory differences: responding too much to sensory input, seeking sensory input, difficulty motor planning, difficulty interpreting details of sensory input, etc.
• Sensory stimulation: lack of sensory-rich activities or too much sensory input
• Cognitive: change in cognition, confusion, smaller window of tolerance, etc.
• Social: isolation, loneliness, feeling undervalued, difficulty communicating needs, etc.
• Environmental: moving to a new home, care partner changes, too much noise, etc.
• Task or activity: Are the demands too easy or too difficult? Is the person receiving too much or not enough assistance? Does the activity feel scary?

Evaluate

Any person experiencing distress should receive a comprehensive medical evaluation, especially if the distress is sudden or out of character. For instance, personality change, impulsivity, losing social filter, physical or verbal aggression.

The evaluation process should include a multidisciplinary assessment to determine root cause and functional levels of cognition (more than just a “screening”). Ideally, involve a neuropsychologist and an occupational therapist.

**Tip for care partners: If a physician provides a general diagnosis, advocate for something more specific (for example, a diagnosis of “dementia” is too general and needs to be differentiated…what specific type of dementia?).

Individualize

Humans are dynamic and complex. So, tools and strategies must be individualized. Consider unique needs, preferences, and differences.

An interconnection of sensory processing, emotional regulation, and relationship support well-being and function. Therefore, the tools listed below will pull from each of those categories.

10 Tips for Responding to Distress in Dementia

1. Regulate yourself first

Take a few deep breaths and remind yourself that this is not a personal attack, as much as it may feel like one. Make sure you can respond in a calm and supportive way. Be mindful of your voice volume, tone, body language, and also facial expressions.

2. Create a Safe Space

This can also be called a “Calm Down Corner” or “Regulating Room”. This space will look different for each person. For instance, it might be a corner of the bedroom with a comfortable chair and record player, a sunroom filled with plants and windows, or a quiet room with string lights and bubble lamps.

3. Engage in “heavy work” throughout the day

Heavy work activities involve pushing, pulling, lifting, squeezing to actively use the muscles and joints. This provides increased proprioceptive sensory input, which is often very calming.

For example, carry firewood to a bonfire pit, wash windows and tables, knead dough, pull weeds in the garden, or punch a boxing bag.

4. Modify the environment

Observe the sound, light, and smells in the environment to identify all the sensory input you notice. What can you do to decrease sounds that are over-stimulating? Can you swap fluorescent lights for LEDs? Is there enough visual contrast? Dive deeper with this “Home Safety Checklist for Seniors: Sensory Edition“.

Also, consider the social environment. How loud are people talking? How many people are talking at once?

5. Modify the task

Make sure the task is an appropriate fit and the “just right challenge”. In other words, not too difficult and not too easy. An occupational therapist can help determine a person’s functional level of cognition so you know what types of supports, assistance, and activities will be most effective. Additionally, an occupational therapist can provide individualized recommendations for activity modification and adaptation.

6. Validate & enter their world

Let the person know you can see/hear they are upset. Ask them what is wrong. Believe whatever they tell you to be true because it is their personal experience. Enter their world and never engage in an argument.

First example: “Yeah! I’d be worried if my purse got stolen too! I can help you look for it.” Search for that purse whether you know it’s missing or not. If the purse cannot be found, what’s the next logical step you would take for yourself (e.g. cancel credit/debit cards, notify the authorities, get a new purse, etc.)?

Second example: “I’m so sorry the cookies are burnt. That’s disappointing! I will go talk to the chef and bring you a fresh dessert.” (if there is no other option, try something like this: “I’m so sorry the cookies are burnt. That’s disappointing! We need to decrease the bake time. I can talk to the chef for you”.)

7. Communicate in helpful ways

Approach the person from the front to initiate a conversation. Sit at their level and make sure they are looking at you, especially if they rely on lip-reading. Speak slowly, clearly, and also provide extra response time (sometimes up to 30 seconds).

8. Support co-regulation

As Dr. Stephen Porges says, co-regulation involves feeling safe and comfortable in the presence of other people. Create a welcoming and loving atmosphere. Always connect first, then make your request. Connect first, then assist with a task.

Connect first: Smile, say hello, offer a handshake or a hug (pending physical distancing precautions), and also introduce yourself. In addition, offer a compliment or ask about their favorite hobby.

9. Create a daily routine

Procedural memory is often not impacted. Routines and procedures increase a sense of safety and security through predictability. Distress in dementia is a sign that the nervous system is dysregulated. In other words, the system is on high alert and the stress response is easily triggered. Routines are calming as the person learns to expect what is coming next.

10. Engage in calming activities

Go for a walk outside, sit on a porch swing together, arrange a bouquet of flowers, get a warm cup of tea/coffee with a snack, or provide calming touch (for example, a hand massage with lavender lotion). Also, reminisce with a family photo album or memory book, listen to calming music, create art together, or go for a car ride.

Certainly, make sure there are daily opportunities for movement and time with nature.

Signs of distress in dementia are challenging for the person with dementia and their care partners. Most importantly, please know you are not alone and support is available. It takes a village!

Is your team interested to learn more? Work with me!

Disclaimer: Although I am an occupational therapist and the information compiled is based on years of training and clinical experience, this is NOT a place for skilled therapeutic intervention.  The ideas presented on this website and in products are for informational/educational purposes only and are not medical advice.

Additionally, a website does not replace an individualized plan of care developed as the result of assessment, clinical observation, and collaboration between therapist, client, and care partner(s). If you are concerned about the cognitive, sensory, or functional abilities of yourself or someone you know, then you should talk with your physician or your therapist.