The Dance of Communication: Staying connected in dementia without words
When Words Fall Away, Connection Remains
Dementia is often framed as a progressive loss of memory, language, and identity. For families, one of the most painful stages can be when speech fades and a family member living with dementia appears more silent. Yet research, including our study The Dance of Communication: Retaining Family Membership Despite Severe Non-Speech Dementia, shows that even in the absence of words, awareness and connection remain. More recent studies reinforce this view, highlighting meaningful responses, moments of clarity, and the power of sensory and relational cues even when dementia has progressed.
Through gestures, expressions, and subtle movements, people with severe dementia continue to communicate. Families, in turn, can join this ‘dance of communication,’ finding new ways to stay connected, affirm belonging, and retain family bonds.
Beyond Speech: Awareness in Severe Dementia
Historically, loss of speech in dementia was equated with a perception of global unawareness. If someone could no longer answer questions, they were often seen as unreachable. Our observational findings challenged this assumption, showing that awareness can manifest without words through:
Eye movements (tracking a family member or a pointing hand)
Facial expressions (smiles, frowns, raised eyebrows)
Body gestures (leaning in, withdrawing, reaching for touch)
Vocal sounds delivered in turn, as if in conversation
More recent evidence aligns with this. Reviews of communication in dementia care emphasise attuning in non-speech ways, pacing, and personalisation as central to retaining connection and personhood — not just as ‘nice to have’ add-ons.
The Dance of Communication
Across filmed family visits, we saw a pattern: interactions unfolded like a dance — sometimes flowing in-step, sometimes faltering out-of-step, but all the time demonstrating awareness at levels previously unanticipated by standardised awareness screening tools.
When Families Were In-Step
In-step interactions were marked by harmony, spontaneity, and reciprocity. Harmony appeared when a husband kissed his wife’s forehead, and she leaned into the touch with recognition; spontaneity surfaced in a quick glance at a photo before the page turned or a shoulder-shimmy to a familiar sound; reciprocity showed up as back-and-forth exchanges where families interpreted and affirmed subtle cues.
Recent work echoes this: relational techniques, sensory prompts, and pacing enable more flow and shared meaning in dementia care, especially when families and staff presume awareness and give responses time to emerge.
When Families Were Out-of-Step
By contrast, out-of-step moments carried disharmony, syncopation, and vulnerability. Focusing on deficits, speaking too much to allow a response, or creating sensory overload could lead to withdrawal or startle responses. Reviews of non-speech strategies similarly caution that environmental noise, rushed touch, or too many words at once undermine connection.
Moments of Lucidity: The Bittersweet Experience
Families also described paradoxical “loving and losing” moments of lucidity. Clarity was treasured, but it sharpened grief by reminding families of what they were losing.
Astonishing moments of lucidity (2014, Synthesis of Meaning)
“Despite offering visiting relatives astonishing moments of lucidity and intimacy with their family member, it can also generate a feeling of aloneness that is magnified by disconnection from family and friends.”
Windows of awareness closing (2018, Holding on while letting go)
“Well, it must be just part of the illness… I think there are windows. I call them windows. Sometimes she is; other times she’s not. There used to be bigger windows. This is how I explain it. Now they’re tinier, and they’re rarer.” — Cathy
Face-to-face recognition and doubt (2018, Holding on while letting go)
“I kneel in front of him so that I’m face to face… You know me don’t you? And… sometimes he will say … yes I know you … and I think … you bugger you don’t know who I am.” — Joan
Shared harmony and retreat (2013, The Dance of Communication)
“Often surprised by these episodes of expressive awareness in their relatives living with dementia, family members… appeared to enjoy a deep relational connectedness… However, at the end of the visit, the person living with dementia appeared to retreat within themselves.”
Pendulum of steps forward and back (2014, Synthesis of Meaning)
“This study reveals the journey with dementia as a pendulum of steps forward and steps backward… distress and psychological growth emerged as families discovered purpose and meaning.”
Lucidity, then, can be a double-edged experience — it can feel like having them back, only to lose them again.
Practical Strategies for Families
Recognising awareness in non-speech dementia communication calls for being in the moment, openness, and creativity. Based on our findings, and strengthened by more recent evidence, try these:
Presume Awareness – Begin with the belief that awareness remains, even without words.
Slow Down and Allow Time – Responses may take 7–15 seconds or more. By the time you’ve finished one sentence, the person may need 7–15 seconds to catch up, process, and reply. Resist filling the silence.
Use Familiar Cues – Albums, favourite foods, and family objects can spark recognition.
Engage the Senses – Touch, sound, sight, taste, and smell remain powerful bridges.
Involve Younger Family Members – Children’s openness and playfulness often elicit smiles and vocalisations.
Match and Mirror – Echo gestures and expressions to strengthen reciprocity.
Respect Vulnerability – Avoid startling touch especially around the person’s head, neck, or shoulders, rushed interactions, or noisy environments.
Close Visits Gently – Clear goodbyes, holding hands, and reassurance about returning ease transitions. Take your time.
Why This Matters
The dance of communication highlights that:
Connection is possible without words. Families can experience intimacy, humour, and belonging even when speech fails.
Assumptions can marginalise. Conventional awareness scales may underestimate responsiveness, risking unnecessary isolation.
Quality of life improves when families engage. Simple, reciprocal interactions sustain identity and family membership.
Key Takeaways for Families
Believe in awareness — your family member is still there.
Look for small cues — gestures, sounds, a hand squeeze, or gaze.
Allow time for responses.
Engage the senses creatively and in ways unique to your family.
Gaining the person’s attention and making eye contact helps.
Mirror and affirm expressions.
Staying Connected Beyond Words
Even in non-speech stages of dementia, family members strive to remain part of their relational group. By joining this dance — sometimes in harmony, sometimes stumbling — and leaning into non-speech expressions of holding hands, eye movements, gestures, vocal sounds, or shared rhythms, we can support that person’s place in the family and reconnect in both familiar and new ways.
At Upside Stories, we walk alongside families living with dementia. A free 20-minute consult is a gentle first step to explore how our online therapy or personalised Carers’ Compass program could help you and your family.
References & reading
De Witte, M., Nategh, L., Antipas, H., Westphal, A., Lautenschlager, N. T., Baker, F. A., & Lampit, A. (2024). The effects of music-based interventions on behavioural and psychological symptoms of people living with dementia: A systematic review and network meta-analysis protocol. Aging & Mental Health. Advance online publication. https://doi.org/10.1080/13607863.2024.2373969
Moyle, W. (2023). Grand challenge of maintaining meaningful communication in dementia care. Frontiers in Dementia, 2, 1137897. https://doi.org/10.3389/frdem.2023.1137897
National Institute on Aging. (2024, June 6). Study on caregivers finds brief bouts of lucidity are common among people with dementia. https://www.nia.nih.gov/news/study-caregivers-finds-brief-bouts-lucidity-are-common-among-people-dementia
Schoonenboom, M., Wammes, J., Drossaert, C., & van der Roest, H. (2025). Communication strategies for delivering personalised dementia care and support: A review. Age and Ageing, 54(5), afaf120. https://doi.org/10.1093/ageing/afaf120
Walmsley, B. D., & McCormack, L. (2013). The dance of communication: Retaining family membership despite severe non-speech dementia. Dementia, 12(6), 771–789. https://doi.org/10.1177/1471301212449407
Walmsley, B. D., & McCormack, L. (2014). Synthesis of meaning: Negative and positive change in family members following the adversity of dementia. Dementia, 13(2), 216–232. https://doi.org/10.1177/1471301212456270
Walmsley, B. D., & McCormack, L. (2016). Severe dementia: Relational social engagement (RSE) during family visits. Aging & Mental Health, 21(12), 1262–1271. https://doi.org/10.1080/13607863.2016.1220923
Walmsley, B. D., & McCormack, L. (2018). Holding on while letting go: Trauma and growth on the pathway of dementia care in families. Dementia, 17(6), 687–703. https://doi.org/10.1177/1471301217735975
Walmsley, B. D., & McCormack, L. (2018). Moderate dementia: Relational social engagement (RSE) during family visits. Aging & Mental Health, 22(8), 960–969. https://doi.org/10.1080/13607863.2017.1326462
