Dementia & Communication

How NOT to communicate with someone with dementia.

How should you communicate with a person who has dementia? A diagnosis of dementia is almost always a life changing shock – not just for the person who has been diagnosed but for family, friends and colleagues.  There are many different forms of dementia – the best known being Alzheimer’s disease – and there is a surprising amount of variation in the way people experience the disease and the way symptoms can progress. 

It’s not all doom and gloom from the day of diagnosis, as people like former nurse, Kate Swaffer, continues to demonstrate.  Six years ago, at the age of 49, Kate was diagnosed with a rare form of fronto-temporal ‘younger onset’ dementia and was advised to stop working and get her affairs in order.

After initially crying for six weeks straight, Kate decided to tackle the diagnosis head on, signing up to do more study, starting a blog and becoming an outspoken activist for community understanding and acceptance of the disease.

As someone who lives with dementia, she is able to provide important insights into the perceptions and feelings of someone with dementia and importantly, how best to engage and communicate with them.

Don’t make these mistakes

About 18 months ago, Kate wrote a blog post entitled, 20 things not to say or do to a person with dementia.  For the uninitiated, many of her ‘don’ts’ might seem excessively sensitive.  Some people might be tempted to think Kate is being overly ‘politically correct’ or that these rules don’t apply to someone who is experiencing advanced symptoms of the disease: ‘Oh, they wouldn’t know; they’re too far gone’.

There can be plenty of quality of life
after a dementia diagnosis

But to think that way is a mistake; research shows that a person with dementia retains a sense of self right up to the very final stages.  They are always there in some capacity, even when they may be unable to communicate or have seemed remote and unresponsive for a considerable time.  As in many life situations, it’s a good idea to use yourself as a measure.  If it were you who had dementia, how would you like to be spoken to or spoken of?  How would like to be treated by others?  Would you expect to be accorded ordinary human rights, the same as anyone else?

Her ’20 Things’ have been re-posted below and you can also click on the link to go to them on her own website.  Kate Swaffer has remarkably just published her first book too.  Called, What the hell happened to my brain? Living beyond dementia, it aims to “offer a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can communicate with and support people post diagnosis to do this.”

If you or someone you care about is living with dementia, it is likely to be both practical and inspiring reading.

20 Things not to say or do to a person with dementia by Kate Swaffer:
  1. Don’t say, ‘but you don’t look or sound like you have dementia’
  2. Don’t tell us we are wrong
  3. Don’t argue with us or correct trivial things
  4. Don’t say ‘remember when…’
  5. Don’t call us ‘sufferers’ or ‘victims’
  6. Don’t refer to us as suffering, sufferers, demented, dementing illness, vacant dement, demented sufferer, an empty shell, fading away, disappearing, or say that it is ‘the longest goodbye’, the saddest goodbye, stealing us away (we are always still here), afflicted
  7. Don’t say you are ‘living with dementia’ unless you are diagnosed with dementia
  8. Don’t remind us of the death of a loved one or pet
  9. Don’t blame the person for the changes in behaviour or personality
  10. We have a form or type of dementia, not an ‘affliction’
  11. Don’t call me honey, love or anything other than my preferred name
  12. Don’t refer to us as ‘aggressives, ‘wanderers’, ‘poor feeders’, ‘wetters’, ‘attention-seekers’, ‘non-communicators’ or as ‘obstructive’ – we are still human beings
  13. Don’t assume because we can’t tell you, your words or actions don’t hurt our feelings
  14. Don’t assume I can’t answer for myself
  15. Don’t talk about me to someone else, in front of me
  16. Don’t assume we can’t communicate even if we can’t speak
  17. Don’t say, ‘but I’ve just told you that’ or ‘you’ve asked me that already’
  18. Don’t think we can’t feel pain, or have emotions
  19. Don’t assume we don’t understand just because we are silent
  20. Don’t assume anything; it makes an ass out of u and me

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A special thanks to our contributors

Caroline Egan

DCM Media, agedcare101

Caroline has a wealth of experience writing within the retirement and aged care sector and is a contributing journalist for the and agedcare101 blog and accompanying newsletters.

Ian Horswill


Ian is a journalist, writer and sub-editor for the aged care sector, working at The DCM Group. He writes for The Weekly Source, agedcare101, and the DCM Institute fortnightly newsletter Friday. Ian is in daily contact with CEOs of retirement living, land lease and the aged care operations and makes a new contact every week. He investigates media releases, LinkedIn and Facebook for a good source for ideas for stories.

Lauren Broomham

Retirement and Aged Care Journalist

Lauren is a journalist for, agedcare101 and The Donaldson Sisters. Growing up in a big family in small town communities, she has always had a love for the written word, joining her local library at the age of six months. With over eight years' experience in writing and editing, she is a keen follower of news and current affairs with a nose for a good story.

Jill Donaldson


Jill has been practicing as a clinical physiotherapist for 30 years. For the last 13 years she has worked solely in the Aged Care sector in more than 50 metropolitan and regional facilities. Jill has also toured care facilities in the US and Africa and is a passionate advocate for both the residents in aged care and the staff who care for them. She researches and writes for DCM Media.

Chris Baynes

DCM Media, agedcare101

Chris has been a journalist and publisher in the retirement village and aged care sectors for 11 years. He has visited over 250 retirement villages and 50 aged care facilities both within Australia and internationally. Chris is a regular speaker at industry conferences plus is a frequent radio commentator.

Annie Donaldson

Nurse and Carer

Annie has a long career in both nursing and the media. She has planned and co-ordinated the medical support from both international TV productions and major stadium events. In recent years she has been a primary family carer plus involved in structured carer support.