Talking to loved ones with dementia

According to the NHS there are currently 850,000 people in the UK who are living with dementia. Dementia covers a wide range of medical conditions including Alzheimer’s disease, vascular dementia, mixed dementia, dementia with Lewy bodies, frontotemporal dementia, young-onset dementia, Creutz-Jakob disease, alcohol-related dementia, and many others.

Someone you know might have dementia, but may choose not to tell anyone about their diagnosis in the early stages. At times loved ones may notice that something has changed, however they don’t want to upset or offend that person by asking. On the other hand, you may have a close friend or relative who has been diagnosed with dementia and you’re not sure what you should say and how best you can support them.

Sometimes it can feel like it’s hard to know the right thing to say to someone living with dementia. This can become isolating for that person, particularly when loved ones don’t feel comfortable communicating.

It’s important to remember that dementia can affect everyone differently. It is a term which is defined as: ‘a collection of symptoms that can affect the memory, language, problem-solving, thinking abilities and social abilities, so that it impedes on your daily life’.

Conversations with loved ones with dementia can sometimes be difficult to understand which can be upsetting for family members. Yet, the more you speak with your loved one, the more you’ll be able to adjust and change what you say to continue to have meaningful and thoughtful conversations.

Beginning the conversation

How you start the conversation can have a big impact on your loved one. Something to think about is what stage is their dementia at? In the early stages, loved ones will still be able to have substantial and considerable conversations – however, they might find it frustrating and difficult to find the correct words to express what they mean. Being patient is key, as you have to remember that their brain isn’t functioning like it was before.

As time passes and their dementia continues to progress, it can become harder to have those meaningful conversations you once had. By understanding that there could be challenges with how you’ll be able to communicate, you can change the way you speak so you’ll still able to talk to one another. For example:

• you may need to talk slower,
• make eye contact with the person,
• use shorter sentences,
• only ask one question at a time,
• and allow your loved one more time to think about what you’ve said, process it and then give a reply.

Being kind, gentle and patient will help you to make more of these conversations.

Things you shouldn’t say or do to someone with dementia

Don’t say “but you don’t look like you have dementia”

What does a person with dementia look like? Because dementia affects everyone differently, with various symptoms, and is a term that encompasses many types of conditions, there is no one way that a person with dementia would look.

Don’t call people with dementia “sufferers”

The term “sufferers” makes it sound like an affliction, whereas you can live well with dementia with the right support and help. In fact, many people live well with dementia for numerous years. The way society talks about people with dementia can affect how that person who is living with the condition feels. The Alzheimer’s Society has a positive language guide that talks about the importance of thinking about the words we use for those living with dementia.

Don’t assume they don’t understand, because they are silent

As mentioned above, someone with dementia might need more time to process what you’ve said and require extra time to think about the words they will use to respond. Just because they haven’t replied immediately, doesn’t mean they don’t know what you’re saying. Be patient and give them a chance to answer. If they tell you they don’t understand what you mean, trying changing the way you’ve phrased what you’ve said.

Don’t tell them they are wrong or argue with them

No one likes being told they’re wrong even at the best of times. Although it can be hard to just go along with what a loved one is saying when it’s not true, there is no advantage in arguing with them, as it can be distressing and unsettling for them. They might even realise themselves that they got it wrong, which could embarrass them. Why not try changing the subject and give them something else to focus on and move on.

Don’t ask them if they remember something

As dementia can affect memory, it’s likely they won’t remember what you’re asking, which can be frustrating or embarrassing for them.

• instead of saying 'Do you know who I am?', try a friendly hello and using your own name to prompt recall
• instead of asking ‘Do you remember when we looked at those books the last time I was here?’, you could say, ‘Last time I was here we had a look through these books and they were interesting because they were about …”

Keep sentences simple

When asking questions, make them specific. For example, if you ask your loved one if they want something to eat, try being precise and say, “Would you like a sandwich?” as it allows them to focus on one thing.

Also, try not to ask them things with lots of steps, as they might not be able to process all the information and it can become frustrating. Try explaining or asking things one step at a time. For example, instead of saying “Let’s go, put your shoes on and your coat and then we need to get into the car so we can pick up some food for dinner”, try saying each step separately. So you could start with, “it’s time to go” then follow with, “let’s put your shoes on”. Then “Now we need to put your coat on”, and so on and so forth. Using shorter and simpler sentences will make it easier for someone with dementia to understand.

Don’t talk down to them

Never talk down to a person with Alzheimer’s or dementia, as just because they have may have a problem with language, doesn’t mean that talking down to them would be helpful – actually it’s probably more insulting. Remember to be respectful when talking.

Don’t say goodbye

Saying goodbye can sound final to someone with dementia. When you’re leaving a person with dementia, it’s better to give them a logical reason for why you’re leaving. For example, instead of just saying, “goodbye” you could try saying, “I have to leave now as I need to go pick up some shopping.”

Don’t specifically remind them that a loved one or friend has died

It’s not uncommon for loved ones with dementia to ask about family and friends who have died. Your loved one might find it upsetting that a particular friend or family member hasn’t called or visited them. It can be painful telling them that someone has died, as if they believe what you’re saying now, they could be likely to forget the next time they bring up that person in conversation.

However, rather than avoiding the subject, if they bring up that person, why not say, “Oh, they aren’t here right now, but tell me about them” which can stimulate happy memories and stories about that person.

Positive ways to talk to someone with dementia

We all have short-term memories and long –term memories, however a person with dementia’s short-term memory may not be as good as before, but their long-term memories are still there. You could encourage your loved one to tell you stories using photos or music about their past. They’ll probably remember times when they were a child at school, or events and special days out, holidays they went on.

Not all communication has to be verbal either. A simple touch of the hand, a hug and eye contact can provide a connection with your loved one and keep them engaged and involved in the conversation.

Remember the tone of your voice too. Even when someone has dementia they can tell how it is said. Something said in a caring, soft tone often gets understood better than something which is said with a severe or stern tone.

It’s important to remember that although your loved one may not be able to communicate in the same way they did before and there may be challenges, being there for them, supporting them and enjoying your time together will allow you to continue to connect.