Difficult conversations in dementia practice

Having difficult conversations isn’t just about outcomes for the people we support, it’s also about staff well-being. These exchanges can be emotionally taxing and professionally defining. They’re often complex moments where we’re balancing emotion, ethics, and human connection in real time.

“The average person looks without seeing, listens without hearing…touches without feeling…moves without physical awareness…and talks without thinking.”  Leonardo da Vinci

This quote captures the essence of communication in care: to slow down, notice, and engage with awareness. I’ve been fortunate to engage deeply with this topic because it’s something the sector has always needed. When I was first commissioned to develop a programme, the commissioner suggested we call it Constructive Conversations. That title has always resonated with me. The work is fundamentally about difficult conversations but at its heart, it’s about making them constructive, compassionate, and rights-affirming.

And without doubt, they’ve been among the most impactful and practical pieces of training I’ve delivered. Why? Because these skills are universal. Whether we’re working with a person living with dementia, a family member, or a colleague, we all need to find ways to communicate with honesty, empathy, and courage. Conversations shape culture; they determine whether we build trust or erode it, whether people feel heard or dismissed.

Where difficult conversations arise
Difficult conversations might occur:

• At diagnosis or in post-diagnostic support, when people and whānau are processing what this means for their identity and daily living.
• When families hold differing views about what someone “can or can’t do,” or how much autonomy to allow.
• When a person experiences anosognosia, showing little awareness of changes in ability or safety.
• Around supported decision-making, particularly when families unintentionally overextend EPOA authority.
• During transitions in care and support, such as moving into residential care or adjusting to new routines.
• When resources are limited, and we must explain what can realistically be provided.
• On deeply personal topics like sexuality and intimacy, where silence can lead to rights being overlooked.

These conversations often happen without planning, perhaps in corridors, or in moments of crisis. They may not take place in environments that feel private, calm, or supportive. Yet when and where we talk can be as important as what we say.

Because of the cognitive challenges many people experience, timing and environment matter. The right context can turn a potentially distressing conversation into one that builds trust, clarity, and connection.

The evidence base (and its limits)
Much of the existing research and structured practice on difficult conversations comes from palliative and end-of-life care, particularly advance care planning (ACP). These frameworks provide excellent guidance on timing, empathy, and values-based communication but often focus on late-stage or terminal contexts. The same principles, however, apply across dementia care, where rights and autonomy are at stake every day.

Start with self
Constructive conversations begin with self-awareness:

• Notice your unconscious bias the “halos and horns” that shape how we perceive others.
• Ask whether a situation or person triggers you.
• Distinguish reaction (automatic) from response (intentional).
• Understand your own needs and boundaries before entering the discussion.
• Check whether you are informed enough to contribute meaningfully.

Power, positioning, and dialogue
Power is always present in care and support relationships. Whether it’s professional authority, family dynamics or how we use and share that power shapes every interaction.

Dialogic practice offers a way to rebalance this. It encourages us to enter conversations with curiosity and uncertainty rather than pre-set solutions. Grounded in humanistic principles, it recognises that people are the experts in their own lives and that our role as professionals is to facilitate shared understanding rather than impose outcomes.

Dialogic practice emphasises:

• Building authentic, trust-based dialogue.
• Recognising the legitimacy of each person’s wisdom.
• Seeking shared meaning and mutual understanding.
• Remaining open to learning, not just knowing.

Constructive conversations centre their voices, acknowledging that expertise lives not only in professionals but in lived experience.

Another really useful framework to consider is Transactional Analysis (TA), particularly when thinking about how we position ourselves within a relationship. Transactional Analysis offers a simple but powerful way to notice the tone and stance we bring into a conversation. It helps us understand not just what we say, but where we’re speaking from.

In TA, our communication comes from one of three ego states:

• the Parent, which can sound directive or critical,
• the Child, which can feel defensive, dependent, or reactive, and
• the Adult, which is calm, curious, balanced, and collaborative.

When we find ourselves in Parent or Child modes, conversations can quickly spiral into resistance, compliance, or conflict. But when we stay in adult-to-adult dialogue, we create space for shared problem-solving and mutual respect.

Integrating Transactional Analysis with dialogic practice helps us stay aware of both power and positioning, consciously choosing equality and partnership rather than authority or correction.

A practical framework
I’ve been fortunate to work alongside some brilliant practitioners in developing tools that help people plan for and hold difficult conversations more effectively. One of these is the Difficult Conversation Tool, a structured yet flexible framework that translates theory into everyday practice.

The tool sets out a six-step approach that teams can use in almost any situation:

1. Prepare – clarify purpose, outcomes, and key points.
2. Set up well – choose the right place and time.
3. Share clearly – communicate facts simply, invite views, and pause often.
4. Recognise emotion – name and acknowledge feelings.
5. Collaborate – co-create next steps, clarify rights and expectations.
6. Reflect and close – summarise agreements, learning, and follow-up actions.

Ultimately, constructive conversations are a core skill, not a “soft” one. They ask us to think clearly, feel deeply, and act with purpose. When done well, they protect dignity, uphold rights, and create the conditions for trust and understanding.

Giving thought to how we hold these conversations isn’t just about improving outcomes for the people we support; it’s also about supporting the well-being of practitioners. These interactions can be emotionally demanding, and without space for reflection or peer learning, they can quietly erode confidence and compassion.

By approaching conversations with curiosity, courage, and care, we model the kind of culture we want to build.

References
3 Spirit UK. (2019). DIFFICULT CONVERSATION TOOL.
Gardner, A., & Blake, L. (2023). Difficult conversations in social care. www.researchinpractice.org.uk
Macdonald, E. (2023). Overall plan of management of difficult conversations. In Difficult conversations in medicine (pp. 32–35). Oxford University Press, Oxford. https://doi.org/10.1093/oso/9780198527749.003.0004