Dementia Caregivers: 'How to connect and communicate effectively. What to do when there's aggressive behaviour.'
Amplifying the work of Dementia Action Alliance, Pat Snyder and Lynette Wilson.
Hello, Dear Readers! A warm ‘Welcome!’ to our new Carer Mentor community members! It’s great to have you with us.
Read about why I created Carer Mentor here: Who Started Carer Mentor and Why?
One of the main aims of Carer Mentor is to bring together key insights, tips and experiences for the benefit of our community who have limited time and energy, and don’t know what they don’t know. I focus on evidence-based research from trained experts and the real-life experiences of caregivers.
This article resides in the Dementia Anthology, on the Carer Mentor Website.
Table of Contents
This summary repurposes and amplifies the content, insights and tips from the YouTube video "Communicate Better with Person with Dementia Basics 4 2023" (April 22, 2023) and draws on the expertise of
the Dementia Action Alliance, and their Pathways to Well-being with Dementia—a manual of help, hope and inspiration1. [Click the link to access the manual]
Melanie Bunn RN, MS, GNP2 (Dementia Alliance of North Carolina dementia educator),
Teepa Snow (International dementia educator)3,
“A Caregiver's Guide to Lewy Body Dementia” By Helen Buell Whitworth & James Whitworth 4
The teachers in the video are Lynette Wilson5 and Pat Snyder.6 I found this video thanks to Aaron Barnhart’s7 essay: ‘This is the kiss test. Plus: Caregiver coach Pat Snyder on being proactive and positive,’ that introduced me to Pat Snyder’s work:
As John’s disease progressed, Pat developed a strategy that she now advises all her caregivers to try. She calls it “personifying the disease.” You separate the disease from your loved one, give it a name (Lewy is good) and treat it as your adversary, one that can be outsmarted and outmaneuvered.
"Communicate Better with Person with Dementia Basics 4 2023" (April 22, 2023)
When you're communicating with the person who is living with dementia, do you want to correct or do you want to connect?
The core message of the video revolves around prioritising connection over correction when communicating with individuals living with dementia, aiming to preserve personhood and create a gentle journey for all involved.
Click the image to access the manual. I’d recommend giving them a donation if you use the manual. It’s a comprehensive resource!
1. Fundamental Principles of Communication
Connect, Don't Correct: The overarching goal is to connect with the individual, not to correct their perceptions or statements. This fosters a more positive and gentle experience.
Preserve Personhood: Recognise and uphold their needs, wants, emotions, personality, relationships, and life story. As Melanie Bunn states, "communication is the glue when other things start to fail."
Create a Gentle Journey: Aim for a calmer, less stressful experience for both the individual with dementia and their caregivers and family. While the disease itself cannot be changed, the experience of it can be significantly influenced by communication strategies.
2. Understanding the Perspective of Someone with Dementia
Individuals living with dementia often retain a sense of self and deserve respect, despite cognitive changes. The video voices the experiences of dementia sufferers from their perspective:
Self-Perception: "I'm still me. I have the same likes. I have the same personality... I'm forgetful, I'm slower, but I can still do things. I'm rational. I'm an adult. I deserve respect."
Communication Challenges: Difficulty finding words, vocabulary loss, mind blanks, derailed sentences, difficulty projecting voice, stuttering, losing train of thought.
Inability to keep up with fast speech; needing "more time and less distraction."
Reduced word processing: "even in the early stage I might not hear one out of every four words that you say to me... in the moderate stage I might lose my consonants so that I only hear vowels."
Emotional & Sensory Experience: "I am absorbed in my own stuff, my view, my feelings, my needs and I also add your feelings to mine and I can combine them into one big muddled patch of feelings."
Body language and facial expressions often matter more than words.
Acting out (aggressive/agitated) can stem from physical or emotional pain, even if the pain isn't consciously felt but registered by the brain.
Living in the past: "If I'm back in time when I ask about my mother, my thoughts are about her... Can you just reassure me about that in some way I don't need to hear that she's dead all over again."
3. Dementia's Impact on Communication
Cognitive changes, particularly in the frontal lobe (which controls impulse, reasoning, and filtering), lead to specific communication patterns:
Inappropriate Behaviour/Language: Preserved brain areas may retain "racial slurs, curse words and sex talk."
Word Salad: Using real words jumbled into meaningless sentences (e.g., "he uses the Kumbaya stick and the dues that go with the donks").
Word Substitutions: Using words close to what they mean but not quite accurate (e.g., "mister" instead of "professor," "newspaper" for "book").
Repetition and Memory Gaps: Repeating themselves or forgetting instructions.
Distorted Reality: Denying what is true, or stating something as true that is false.
Appearing Irritated, Scared, or Too Personal with someone: Due to compromised impulse control and filter.
Thinking Errors: Believing "the first information they receive because they cannot evaluate it and make decisions about it."
Language Regression: If English is a secondary language, they may revert to their primary language.
Fluctuating Abilities: Communication abilities "fluctuate from day to day and from hour to hour" due to shrinking brain tissue and decreased neuro-chemicals. This means what works one time may not work another.
Increased Difficulty When Unwell: Communication decreases if the person is sick, on certain medications, or as dementia progresses.
4. Strategies for Effective Communication
Poor communication, even minor instances, can have significant consequences, ranging from "getting no response from the person living with dementia to a behavioural meltdown."
Effective communication is about making a connection, not necessarily about factual accuracy.
Environmental Factors:
You may need to create a "quiet and calm" environment (e.g., turn off TV, limit people).
Ensure "good lighting" to avoid misinterpreting shadows as holes or objects.
Approach and Connection:
Observe First: "Stop and observe the person closely" for recognition, facial expressions, discomfort, and mood.
Announce Presence: Speak from about six feet away ("knock knock” and “Hi").
Identify and Name: If recognised, use their usual name ("Hi Daddy, hi Mother, hi sweetheart"). If not, try their first name (often remembered earlier in life). Always identify yourself ("Hi Jimmy, it's Mary").
Slow and Frontal Approach: "Always approach the person slowly and from the front if possible."
Be at Eye Level: "Try to sit at their level as you talk with them and maintain eye contact."
Appropriate Physical Contact: Touch "conveys interest and can provide reassurance," but assess if it's appropriate for that individual at that time.
Non-Verbal Communication is Key:
Only about 7% of communication is verbal. "About 55% of what we're trying to say is communicated through our body language... and about 38% of what we communicate is through our tone of voice."
If verbal and non-verbal communication contradict, non-verbal will be believed.
Body Language: Stay "calm, open, look interested," use appropriate hand gestures.
Tone of Voice: Be "friendly, not bossy or critical, not condescending." Use a "deeper" pitch and avoid talking louder, as hearing is often not the primary issue.
Speed of Speech: Be "slow and easy, not pressured and not too fast."
Facial Expressions: Humans read facial expressions in as little as 17 milliseconds. Maintain positive, interested expressions.
Staying Present: "You can't be perceptive if you aren't in the moment... we miss out on 50 percent... of our Lives by not being present."
Giving Instructions/Requests:
Short, Direct Messages: "Let's go to the bathroom," "Put on this shirt."
Simple Choices: Offer "either or" choices ("red shirt or blue shirt").
Visual Cues: Hold up items (e.g., shirts) while speaking.
Involve Them: Ask them to "do something to help you" (e.g., folding laundry).
One Step at a Time: Break tasks into single steps, writing them down if helpful.
Avoid "Are you ready?": The answer is almost always "no." Be creative in your approach if the answer is negative.
Responding to Distress/Frustration/Anger:
Identify Needs: Determine if needs are physical (tired, pain, hunger, discomfort) or emotional (afraid, lonely, bored, angry, excited).
Empathy, Not Forced Reality: "Sounds like you're really tired," "It looks like you're angry," or "It seems like ..whatever."
"I'm sorry you're upset," NOT "There's no reason for you to be this upset."
Simple Sentences: "Are you cold? Are you tired? Ready for bed?"
Redirect Attention: Once they are listening, redirect to a preferred activity, music, or treat.
Maintaining Positive Interactions:
Stay Positive and Friendly: Praise efforts, offer thanks and appreciation.
Laugh With Them: Appreciate their humour.
Go Slow and Go with the Flow: Be an "improv actor" – respond in a way that aligns with their current reality.
Acknowledge Emotions: "It seems like..." or "I can see you are..."
Familiar Words/Cues: Use words and pictures they are familiar with to avoid miscommunication (e.g., "take a leak" example).
Be Prepared for Repetition: Having the same conversation over and over.
No Arguing: They are concrete thinkers and "believe what they believe."
Expect Outbursts if the conversation moves to something they don't want to do.
"They are doing the best they can."
5. Specific Challenges and Techniques
Capgras Syndrome: An irrational belief that a familiar person (usually the closest caregiver) has been replaced by an imposter.
Strategy: Use your voice to compensate. Talk to them before they see you. Creative solutions like calling on the phone and walking into the room while still talking can help recognition.
Therapeutic Fibs: When direct truth is distressing or unnecessary.
Strategy: Avoid re-traumatising by stating painful facts (e.g., telling them a deceased parent is dead again). Instead, give gentle, non-committal responses that don't contradict their reality (e.g., "No, haven't talked to her today" or "They were doing fine the last time I saw them").
6. Teepa Snow's Five Ways to Say "I'm Sorry"
These phrases are powerful tools for de-escalation and connection, focusing on the individual's emotional state, regardless of fault:
"I'm sorry I was trying to help."
"I'm sorry that I made you feel angry or irritated or frustrated or sad or isolated." (Focuses on their feeling, not the facts.)
"I'm sorry I made you feel like a child / stupid / like an idiot."
"I'm sorry that happened." (From their perspective, acknowledging their experience.)
"I'm sorry this is hard. I hate this for you." (Acknowledges the difficulty for both parties.)
7. Proactive Caregiving
Identify Triggers and Stressors: Reflect on what causes negative reactions in the individual with dementia.
Proactive Avoidance: Once identified, "make every effort to avoid those."
"Outsmart Lewy/Louie": Proactively anticipate challenges and have techniques in mind. [Pat Snyder sustained her husband’s personhood by separating him from his diagnosis of Lewy Body Dementia. She calls the disease ‘Louie”. Giving the disease a separate persona to blame deescalates frustrations]
Adapt and Stop: If a strategy isn't working, "stop, stop it, don't keep repeating it." Step back, re-evaluate, and try a different approach.
8 Aggressive behaviour and behavioural changes
The 3 AM Field Guide to Dementia Aggression Your parent is screaming. You’re alone. Here’s what actually works when redirection fails. by Vance Frost
“Nobody prepares you for this after the diagnosis. The neurologist names it, maybe prints a handout. The handout says “redirect.” It does not say what to do when redirection stops working at 2 AM and your mother is swinging at you because she thinks you’re a stranger who broke into her house. She’s not angry. She’s terrified. And she’s defending herself from someone she doesn’t recognize in a place she doesn’t remember.
If this is happening right now, start below. If it’s morning and you’re trying to understand what happened, skip to “What just happened.” If you’re planning ahead, start at “Before 3 AM comes again.”
Behavioral Changes Associated with Dementia - Part 1. How do things change and why? By Kirbie Earley
Behavioral Changes Associated with Dementia - Part 2 - For Caregivers! How to manage the overwhelming changes of dementia by Kirbie Earley
Behavior - AGITATION. Good Ways to Avoid Confrontation By Lydia Fluitt
9. Other communication / connection articles by authors in the Carer Mentor community network:
How I Learned To Be A Caregiver For My Wife With Alzheimer's. Sharing Experiences To Help Alzheimer's Home Caregivers Of Loved Ones.
Over to you…
Do you have a strategy or tip you can share that helps you connect with your loved one who has dementia?
Please remember to ‘❤️’ LIKE the article to guide others to these resources.
Beth Baker, Writer/Editor Karen Love And by 48 Contributors Who Are Living with Dementia, Care Partners, and Leading Dementia Specialists. the Manual Steering Committee members who helped guide and shape the development of the manual: Sherrie All, PhD; Jan Bays, PT; Jennifer Carson, PhD; Cyndy Luzinski, MS, RN; LeeAnn Mandarino, MA; Jim Mann; Daniel C. Potts, MD, FAAN; and Julia Wood, OTR/L.
A Caregiver's Guide to Lewy Body Dementia By Helen Buell Whitworth (author) & James Whitworth (author). The Amazon Authors Biography
When James (Jim) Whitworth's first wife was diagnosed with Alzheimer's, he researched it on the internet and found that her symptoms fit Lewy body dementia "to a T." Excited, he shared his research with her doctors who said, "Never heard of it," and continued to treat her for Alzheimer's, which Jim now believes decreased the quality and length of her life. After her death in 2003, he made it his mission to increase awareness of this little known but all to common type of dementia. He and four other caregivers started the Lewy Body Dementia Association (lbda.org), now recognized as the premier caregiver organization specializing in LBD.
Helen Buell Whitworth is a retired nurse, educator and writer. She has acted as caregiver for several family members, including a sister with Parkinson's, a disease closely related to LBD.
Radically Transforming the Experience of Dementia
From Teepa Snow’s Website : Teepa's Snow Approach™ methods, a series of simple techniques, are based on understanding the areas of the brain that are no longer working and making use of the parts of the brain that are still active, so you can:
Protect and Grow Your Relationship
Experience Less Resistance
Experience Less Stress
A Caregiver's Guide to Lewy Body Dementia By Helen Buell Whitworth & James Whitworth
When James (Jim) Whitworth's first wife was diagnosed with Alzheimer's, he researched it on the internet and found that her symptoms fit Lewy body dementia "to a T." Excited, he shared his research with her doctors who said, "Never heard of it," and continued to treat her for Alzheimer's, which Jim now believes decreased the quality and length of her life. After her death in 2003, he made it his mission to increase awareness of this little known but all to common type of dementia. He and four other caregivers started the Lewy Body Dementia Association (lbda.org), now recognized as the premier caregiver organization specializing in LBD.
Helen Buell Whitworth is a retired nurse, educator and writer. She has acted as caregiver for several family members, including a sister with Parkinson's, a disease closely related to LBD.
Lynette Wilson is a retired nurse practitioner whose husband suffered from Dementia
From the Amazon Author Biography
Pat Snyder was primary caregiver of her husband, John, who was diagnosed with Lewy Body Disease in 2007. Five years after John’s diagnosis, he was still in early stage LBD.
Pat teaches a UNC and LBDA affiliated class for dementia caregivers in Wake Forest, NC, moderates an online support group, and administrates the LBDNC Facebook page. She continues to work with Dr. Daniel Kaufer, Director of UNC Memory Disorders Clinic, in linking LBD resources in and around North Carolina.
Pat Snyder’s YouTube Channel contains numerous videos about Dementia.
I highly recommend reading Aaron Barnhart’s Podcast and Publication ‘The Diane Project’
[From his ‘About’ page] In 2020 my wife Diane — the woman to whom I owe everything — was diagnosed with Lewy body disease.
In our hypercognitive society there may be no greater terror than loss of brain function. I created The Diane Project because I thought people might want to hear from one of the 11 million unpaid caregivers whose loved ones have cognitive disease. My hope is that readers become less fearful and more proactive about dementia and caregiving.
Thank you for the endorsement! My Dementia Diaries are simply snippets of what situations can be like or what issues can appear out of the blue in this ever changing journey of managing the “dementia mind”
This is amazing. I got lots of info from this. The statistic about only 7 percent of communication being verbal stopped me completely because most dementia caregiving conversations focus almost entirely on what to say when the tone, body language, and facial expression you bring into the room are doing the vast majority of the work before a single word is spoken. The point about not re-traumatizing someone by stating painful facts like telling them a deceased parent has died again is also one of those things that feels obvious in hindsight but goes against every instinct to be honest and direct that most caregivers have.
Teepa Snow's five ways to say sorry are genuinely practical in a way that most communication guides never get to because they give you the exact words rather than just the concept. The idea of personifying the disease and calling it Louie is also brilliant because it gives both the caregiver and the person with dementia something external to direct frustration at instead of each other. Really one of the most thorough and immediately usable pieces on dementia communication I have come across. Thank you, Victoria!
I also got some references here:
https://hopebridge.care/social-connection-and-early-stage-dementia-in-yakima/
https://en.wikipedia.org/wiki/Dementia_caregiving
https://www.alzheimers.gov/life-with-dementia/tips-caregivers