5 things not to say to someone living with dementia

According to Alzheimer’s Research UK, there are almost 1 million people living with dementia in the UK, and this is expected to increase to 1.6 million people by 2050. This means that not only are many people trying to navigate their own diagnosis, there are also a huge amount of people facing changing relationships with those they love. 

Effective communication is one of the best ways to maintain positive relationships and knowing how to talk to someone with dementia will help to facilitate your connection with a loved one long after diagnosis.  

We have devised a list of 5 things to avoid saying to guide you through challenging times, help prevent difficult moments wherever possible and hopefully maintain your own wellbeing. 

“I’ve just told you that…”

Many people living with dementia are very aware of how their cognitive abilities are changing. This can lead to embarrassment and a fear of engaging in conversation.

It can be challenging to have the same conversations multiple times, but saying, “I’ve just told you that” is neither going to help your loved one to remember or make you feel better.

Try to show your loved one patience and if things do get too much, take a minute to yourself. You might also consider leaving notes around the house, on the fridge for example, that you can point to with answers to questions that arise often. 

“Do you recognise me?…”

If your loved one knows who you are, you’ll likely be able to see this in the way they communicate with you. If they don’t, it’s only going to upset you further when you get the answer you’ve been dreading.

Try to avoid asking them outright if they know who you are and instead enjoy the time you spend with them just as it is. If you’re more relaxed, they are likely to respond to this energy and feel calmer too, and this will make for a more positive interaction all round. Consider your tone of voice, facial expressions and body language when communicating and give them plenty of time to respond.

Remember that dementia also isn’t a linear path. If your loved one doesn’t recognise you one day, this might be different the next day, or the one after that. It’s also common for family members of people living with dementia to say that even when their loved one doesn’t recognise exactly who they are, there is a sense that they know they are someone close to them, helping to bring comfort and familiarity to the time spent together. 

For advice on how to cope when someone with dementia doesn’t recognise you, read our article here.

“Do you remember when…”

The relationships we have with our loved ones are built on the memories we share together, both good and bad. 

When communicating, it’s natural to draw back on previous events that you have shared, ‘remember when…’, ‘wasn’t that the most amazing holiday…’, etc. But even as part of casual conversation, asking your loved one to recall past events can not only make them feel uncomfortable if they don’t remember, but will add to your own distress if they can’t recall memories that are significant to you.

Try to stay in the moment wherever possible and take their lead when it comes to reminiscing. 

“That’s not right…”

Dementia can affect people in a variety of different ways, but a common symptom is confusion. This can have an impact on everyday life, such as going to make a cup of tea immediately after they’ve already made one or misplacing everyday items, but it is inevitably harder when this confusion manifests in more major things, such as mistaking the people around them or forgetting that a loved one has died. 

Although challenging to manage, you should try to avoid instantly correcting your loved one when they make mistakes or are confused about certain things. This is likely to only add to the stress for both of you and won’t help you to reach any conclusion.

If you’re not prepared to ‘play along’ with the different narrative your loved one has in their mind, you could instead try to change the conversation, bringing their attention to something else. 

Our article on validation therapy explores the difficulties of knowing when to correct your loved one and how you can approach these situations with love and patience, you can read this here.

“Can you sort this out…” 

Dementia can have a huge impact on a person’s ability to reason in a logical way, especially in the later stages. This inevitably affects their capacity to make good decisions for both themselves and those around them.

Depending where in their dementia journey they are, it might be a good idea to assess a situation before you involve your loved one. This way, you can determine whether it’s beneficial to them, or yourself, to have their input or better to make a decision on their behalf. Doing this can help to remove any unnecessary distress caused if they are unwilling, or unable, to make a decision themselves. 

If you need to take control over decision making, you may want to be extra conscious about prioritising your loved ones’ autonomy in everyday decisions. Although watching them make strange choices, such as wearing the wrong clothes or eating odd foods can be frustrating, letting go of the things that don’t impact on their wellbeing should make it easier for you to make positive decisions when you have to take the lead, helping to avoid feeling that you are always telling them what to do. 

This may be challenging, especially if it’s your parent, but remember that you’re acting in your loved one’s best interests and as dementia progresses, it’s important that they have a person to advocate for them, helping to maintain their quality of life and protect their safety.

Our article about power of attorney explains the legalities of making decisions on a loved one’s behalf. You can read this here.

Further help and support

Maintaining a positive relationship with a loved one living with dementia can be extremely challenging, but working out how to navigate the changes will make it possible to continue enjoying the time you spend together. You can find further information about how to communicate with someone with dementia in our article here.

It’s also important to bear in mind that everybody is different, these tips are there for advice but may not be relevant to your situation.

If you’re looking for advice on dementia at any stage of the journey, it might be helpful to visit our advice section where we have a range of articles about dementia.