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’.

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