Empathy
Have you ever been sitting, chatting with someone, believing they were listening to you, but then you ask a question that requires more than a yes or no response, and they nod and say “yep”, while continuing to scroll on their social media?
How does that make you feel? Possibly unseen, unheard, emotionally neglected, lonely, depressed, angry, unloved? What do you feel like doing?
What most of us would ideally like is a response that lets us know that the other person has heard and understood us, i.e. that the other person responds with empathy, where empathy is defined as:
“Understanding a person from their frame of reference rather than one’s own, or vicariously experiencing that person’s feelings, perceptions, and thoughts.”
(American Psychological Association)
Now imagine you are an 88-year-old living in a residential aged care facility. You have hearing deficits, mild cognitive impairment, medical and mobility problems. You are chairbound and dependent on the care staff. The facility where you live has personal care workers from overseas, e.g, India, Africa, and China. You try to talk to the carers, but they have trouble understanding you. They speak to you, but you have trouble hearing them; and when you do hear them, you have trouble understanding their accent. How is this interaction likely to leave you feeling? And what would you want to do?
Possibly you would experience the same range of emotions as listed above, and your behaviour would reflect these feelings, i.e, you might cry or scream, or withdraw completely, and cease trying to communicate.
Imagine that one day you refuse to have a shower, and the carer interprets this as you being “resistant” or “confused”. But what if you were overwhelmed by the cold tiles, the sense of exposure, or trying to assert some control over your day? These moments are often labelled as “behaviours of concern.” But perhaps there’s something deeper going on; a communication breakdown not just from one side, but both.
The Double Empathy Problem
This is where The Double Empathy Problem (Milton, 2012) offers a powerful new lens. Milton, an autism researcher, created the term “the double empathy problem” to counter the notion that communication difficulties originate from a “deficit” in someone, frequently someone who is neurodivergent, disabled, or elderly. Instead, Milton argues misunderstandings appear between people who have very different experiences of the world.
“The double empathy problem is a mutual lack of understanding that occurs between people with very different cultural or experiential backgrounds.”
(Milton, 2012)
While originally developed to explain autistic – non-autistic miscommunication, this concept can easily be extended to aged care, where generational, attitudinal, sensory, cognitive, physical and emotional differences often collide.
The Double Empathy Problem Applied to Aged Care
In residential aged care, carers and residents often experience vastly different worlds. One is busily working to a schedule; the other may not even understand the schedule. One is trained to complete tasks efficiently; the other may move through the day with a different sense of time, memory, or emotional need.
These differences can lead to frustration on both sides, for example:
- A resident does not respond to a question, and the carer assumes they’re confused.
- A staff member raises their voice to be heard, and the older person feels patronised.
- A resident repeats themselves, and the carer ignores it, not realising the repetition is a way of expressing anxiety.
Each person may do their best to connect, but they are using different cues, expectations, and assumptions.
The double empathy problem suggests that misunderstanding is not a one-way problem. It is co-created, it is relational. This does not mean blaming carers. It means recognising that empathy can fail in both directions, especially when people do not share the same emotional language, thinking skills, culture, or worldview.
Relevant Research Evidence
While the double empathy problem has not yet been formally applied to aged care in academic research, some related studies support its relevance: –
Ryan, Meredith, Maclean & Orange (1995). This early paper described how carers can unintentionally adopt patronising speech patterns that undermine the older person’s sense of agency. For example, carers may “over-accommodate” i.e. speak too simply or too loudly, thus reinforcing ageist assumptions. This kind of speech can lead older adults to withdraw, resist, or feel disrespected, contributing to communication breakdowns. Thus, misunderstandings are often socially created by the way others perceive and respond to older adults, not simply by ageing itself. This approach resonates with the double empathy problem.
Kontos, Miller & Kontos (2017) recognised that people with dementia remain social beings with emotional presence, agency, and the capacity to engage with others, even when their verbal communication is limited. They propose that good care involves supporting resident’s self-expression through gestures, touch, body language, routines, and emotional attunement. Empathy is about recognising meaning in non-verbal expression. Reframing care as relational rather than as task-completion shifts the focus from “fixing” the resident to connecting with them.
“Personhood is not solely constituted through cognition or rationality, but through the body, affect, and intersubjective relations”.
(Kontos et al, 2017, p 185)
Hyden & Antelius (2017). This work on communicative disability in dementia highlighted the importance of adapting communication to the needs of the individual. The authors recognise that communication is interactional, meaning that communication breakdown is often mutual, not just because of the cognitive decline of one party. While they recognise that a person with dementia tells stories differently, they also emphasise the need for the carer to listen differently, focusing less on accuracy and more on relational engagement.
“Communication should not be seen as an individual ability that is intact or impaired, but rather as something that happens in interaction between people.”
(Hyden et al, 2017, p234).
What can go wrong?
Miscommunication between older adults and their carers in residential aged care is a common problem and is often mutual. Consequences can lead to dire outcomes for residents, including loneliness, depression, and behaviours of concern. In one study, residents were alone 40% of the time they were observed (Walker & Paliadelis, 2016). When staff were present with the residents, they did not engage in direct verbal or nonverbal communication or physical contact. Residents’ emotional needs are often not met in residential aged care (Low, 2018).
In his foundational paper, Milton (2012) said: –
“The issue is not a lack of empathy per se, but a breakdown in mutual understanding — empathy is a two-way process.”
Both parties bring factors that impact the interaction and the capacity to empathise with each other. These factors will be different for different residents and carers. To illustrate these dynamics, Figure 1 presents an example of the diverse factors each party may bring to the care interaction and how these may make understanding each other’s thoughts, feelings, and behaviour challenging.
| Resident Factors *Different cultural background *Hearing deficit *Expressive dysphasia *Cognitive impairment *Older than care worker (generation gap) *Thinks “I’m a burden” | Care Worker Factors *Different cultural background *Has an accent *Under pressure to complete tasks *Tired, after a double shift *Younger than resident *Has an assumption that he can’t understand her |
Figure 1. A Moment Through the Empathy Lens. Example of resident and carer factors impacting on Communication. (Image generated by Shutterstock)
The image invites reflection on what each person brings to the interaction. On the left, we see possible factors shaping the resident’s experience. On the right, the inner landscape of the carer. When these unspoken realities go unacknowledged, miscommunication and frustration can follow. This side-by-side view reflects the double empathy problem: when two people shaped by different life contexts struggle to connect because their perspectives are simply too far apart.
Of significance in this context, research into the neurobiology of caregiving has found that when carers are under chronic stress, such as in aged care, their capacity for empathy and prosocial engagement is disrupted (Treadway & Lazar, 2020). The prefrontal cortex, the brain region that supports empathy and perspective taking, becomes less active, while the regions associated with threat detection and emotional withdrawal become more dominant. This does not reflect a lack of compassion, but rather a self-protective response under conditions of sustained emotional stress. Thus, failures of empathy in aged care may be partly understood as arising from systemic stress.
Systemic issues in aged care largely structure and constrain the context of care delivery, including the dominance of corporate business models and financial priorities dictated by the profit motive. I detailed these challenges in a previous blog (2019) in preparation for the Royal Commission into Aged Care Quality and Safety.
Final Thought
We often frame empathy as something one person gives to another. But what if true empathy is built in the space between, in the willingness to tolerate uncertainty, to listen without judgment, and to recognise that misunderstanding is often mutual? In that space, we might just find a more human and more compassionate way forward in aged care.
In coming weeks I will be releasing a downloadable practical guide, Bridging the Double Empathy Gap in Residential Aged Care, which expands on these ideas and offers simple real-world ways to strengthen understanding and connection in aged care settings. I’ll post the link on LinkedIn as soon as its available.
References
American Psychological Association (n.d). Empathy. In APA Dictionary of Psychology. https://dictionary.apa.org/empathy.
Hyden, L. C. & Antelius, E. (2017). Communicative disability and stories in dementia care. Sociology of Health & Illness, 39 (2), 232-245. DOI: 10.1177/1363459310364158
Kontos, P., Miller, K. L., & Kontos, A. P. (2017). Relational citizenship: Supporting embodied selfhood and relationality in dementia care. Sociology of Health and Illness, 39 (2), 182-198. DOI: https://doi.org/10.1111/1467-9566.12453.
Low, L. F. (2018). How our residential aged-care system doesn’t care about older people’s emotional needs. The Conversation, September, 2018.
Milton, D. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27 (6), 883-887. DOI: https://doi.org/10.1080/09687599.2012.710008
Ryan, E.B., Meredith, S. D., Maclean, M. J., & Orange, J. B. (1995). Changing the Way We Talk with Elders: Promoting Health Using the Communication Enhancement Model.The International Journal of Aging and Human Development 41(2):89-107. DOI: 10.2190/FP05-FM8V-0Y9F-53FX
Treadway, M. T., & Lazar, S. W. (2020). The neurobiology of caregiving: A brief overview of empathy and caregiving stress. Current Opinion in Psychology, 35, 1-6. DOI: https://doi.org/10.1016/j.copsyc.2020.01.005
Walker, H., & Paliadelis, P. (2016). Older peoples experience of living in a residential aged care facility in Australia. Australasian Journal on Ageing. Volume 35, Issue 3 DOI: https://doi.org/10.1111/ajag.12325
Images in this blog are used under license from Shutterstock.com.
Copyright © Jane Turner 2025