Talking About Dementia – Changing How We Communicate
The Law Of… Treating People Living With Dementia With Respect
"Do you remember what I just told you?"
"Don't you remember your anniversary was last week?"
"I'm not repeating myself again."
To one of the estimated 850,000 people living with dementia in the UK, these statements are frustrating, hurtful and an unfriendly reminder of their condition.
Changing the way we think about, and speak to, a person with dementia is key to helping them live well and safely.
Zena Soormally, Associate, Court of Protection and Dementia Friend for the Alzheimer's Society, takes a look at the ways in which we can adapt our language and learn how to effectively communicate with someone with dementia.
Talking About People Living With Dementia
Our attitude towards dementia has a major impact on the way in which we speak about, and ultimately treat, people with the condition.
Making a conscious effort to change the language used around people living with dementia can be challenging, especially if you're unaware of the impact certain phrases could have on someone.
Generally, when talking about someone with dementia you should keep the following in mind:
- Someone with dementia can be described as living with the condition or simply a person with dementia, and not someone 'suffering' from it
- Avoid phrases such as "she's losing her marbles" and "he's an empty shell" as they can be offensive and hurtful to people who are losing their memory or going through a personality change
- Refer to someone with dementia by their name and keep them involved in conversations
- Avoid speaking about someone with dementia in the third person (for example, "him" or "her") in front of others, as this can exclude them
"I have heard carers use inappropriate phrases and responses because they have not been taught how best to converse with someone with a specific diagnosis", Zena explains.
"That does not only apply to those living with dementia; the same applies in relation to understanding how to communicate with people who live with many different diagnoses. Autistic people, for example, may need you to engage with them in a way that avoids them being overloaded by choices; those with dysphasia may understand what you are saying but be unable to respond in line with their intentions, so additional steps are needed, including alternative aids."
How Should I Communicate With Someone Who Has Dementia?
Although there are various types of dementia, as it's a progressive condition it increasingly affects a person's memory and ability to communicate with others.
Keeping track of names, places and dates can become difficult, for example, as well as their ability to reason. They might also struggle to make sense of information and offer delayed replies when they're spoken to.
Adapting the way in which we communicate with people living with dementia is key to ensuring that their voices are heard.
Some of the positive changes you could make include:
- Speaking to them clearly, and using short sentences rather than long, complex ones
- Changing the way in which you speak to them as they might not be able to communicate with you in the same way as they used to – you could, for example, rephrase questions
- Letting them speak to you at their own pace – don't put pressure on them to respond to you quickly
- Giving them the chance to share their views when talking about their health and wellbeing
- Acknowledging what they say, even if you're unsure of what they're trying to communicate to ensure them that you are listening – this could be through facial expressions or eye contact
- Presenting them with simple choices, rather than complicated options
Helping Someone With Dementia To Communicate
As well as having difficulty understanding others, it's not uncommon for people with dementia to find it hard to verbally share their thoughts with someone else or ask questions.
Some people even develop other sensory impairments, such as problems with their vision or hearing, which can affect their confidence and ability to communicate. Learning to interpret their actions will make it easier for you to understand what they're trying to say and react appropriately.
Here's some useful ways of helping someone with dementia to communicate:
- Non-verbal communication – as dementia progresses, verbal communication can become very difficult. This means that some people can become more reliant on using non-verbal communication to express their feelings and thoughts. It's important to keep a close eye on their body language and learn their different signals or movements so that you can recognise what they're trying to say.
- Listen to them – people with dementia can have trouble finding the right words or they might take longer to respond to you. Take the time to listen to what they're trying to say, pay attention to their body language, and consider rephrasing their response to check whether you understand what they're trying to say. Avoid interrupting them, as this can affect their thought processes and be frustrating.
- Give them enough space – standing very close to someone with dementia or even standing over them whilst they're sitting can be intimidating. It's a good idea to match their eye level and keep enough distance between you both so they're comfortable enough to communicate.
Zena offers some advice for caring for and helping someone with dementia:
"With dementia on the rise and predicted to affect 1,142,677 people in the UK by 2025, it's now more important than ever to learn how to best support people who develop the condition."
"Whenever I work with clients who have different degrees and forms of dementia I always ensure that they are able to express their wishes in ways that are comfortable to them. Being patient and taking the time to listen to their needs is crucial. For clients who lack capacity, protecting their health and wellbeing and upholding their wishes is even more important."
"I’ve had first-hand experience, when visiting clients, spending time with family or friends who live with dementia, and reading assessments or records of visits, of the kinds of comments made about and to those living with dementia, which should be avoided."
"We all need to be more careful about the language we use with regards to those living with dementia. I am a Dementia Friend for the Alzheimer’s Society, and one of the first things I learned from my training, was the importance of language and the way we speak about dementia. At Simpson Millar, we try our best to use the right language and support tools whenever we can."
"Family members, advocates and carers experienced in caring for the person, are key sources of information for us when we meet with a new client. We endeavour to find out what works and doesn’t work for the individual from them, but much of our time in initial meetings is getting to know the person and allowing them to talk to us, at their pace, and about what they feel is important to them."
"We definitely shouldn't "be afraid to enter into their universe" as stated in the Guardian article above when describing how to communicate with someone with dementia. When people read the statements that I prepare, after visiting a client, I’m sure that some of them feel that I have allowed the client to digress too much, but it is important that a person can tell you their story, so that you can try to understand their motivations, views and wishes as fully as possible."
"Sometimes, people can underestimate how making small changes can have a major, positive impact on the life of someone with dementia."