Communicating with a dementia sufferer

This will be quite a lengthy post as there is so much to say about communicating with people who are suffering from dementia and it can be very tricky. What I will write about are the experiences I've had and things I've learnt over the last few years. 

It is so important to talk to people with dementia, whether you get a response or not. It can be very disheartening for a loved one to not answer when you speak to them, or to not look at you. As a family member or friend of a dementia sufferer we can often feel we are invisible to them, that they do not know us, or even see us. It's important to remember that we cannot know for sure what they listen to or understand, therefore we cannot know how much our words might mean to them. It's very possible that dementia sufferers will listen to you and understand what you’re saying but cannot effectively respond. It is often worth trying things such as looking at picture cards or old family photos with someone who doesn't speak much or at all, pointing at faces or words will help focus their attention. You can try showing someone a photo of them when they were in their twenties or thirties and saying ‘that was the year you met grandad’, you never know what memories something as simple as that could reignite.

Often people with dementia can look as if they know what they want to say but are struggling to find the right word, if this happens you can offer them a word and see if it’s what their looking for. This is easier if you know the person well and can hazard guesses at what they want to say. Dementia sufferers can become extremely distressed when they are trying to communicate but are struggling, it can often cause them to become angry or upset. If that situation arises offer them comfort, reassure them it's okay if they can't find the right word, assure them there's no rush for them to say what they want to say, you have plenty of time to talk to them. When having conversations with someone with dementia, especially someone in the late stages, it's often easiest to ask them questions that have a yes or no answer, this is usually easier for them to respond to.
There are many non-verbal ways to communicate that can be effective, it is important to have open body language, kind facial expressions and something as simple as touching their hand with yours can have a very positive impact. It is, however, important to say here that knowing the person you are communicating with is key, as touching someone who has dementia and presents with challenging or aggressive behaviour may not always have a positive reaction.

It is mainly the memories that were made in later life that are lost or impaired for dementia sufferers. Many of the people I have known with dementia have often thought they were a teenager again, they often spoke about going to school or asked where their parents were. Family members and other carers would ask me what the best way to handle this was and honestly I don't know if anyone has the answer. In my experience, working on a challenging behaviour unit, the residents I cared for would often become very distressed if you didn't answer them in a way that satisfied their question. For example, if a residents had asked me ‘is it time for me to go to school now?’ and I had replied ‘you don’t go to school anymore, you're 78 now’ this would have very often resulted in anger, no matter how kindly I had said it, because they would think I was lying to them, or they would become confused and upset. In my eyes it was my job to make the lives of my residents as comfortable and care free as possible, and avoid any upsets. So instead I would answer something along the lines of ‘it's Saturday today, no school until Monday!’ which usually received a more positive reaction.

The other thing I was asked numerous times was how to respond when a residents asks where their husband is, when he's actually passed away ten years ago. This is a little more tricky than diverting them from wanting to go to school and again I do not believe there is an exact right or wrong answer. Some people have said to me it is wrong to lie to a resident, if their husband is dead and they're asking where he is then they deserve to be told the truth, with this I have to disagree. In my eyes what the person suffering from dementia deserves is the least amount of pain, stress and anguish possible. Each person with dementia is different, some have a lot of awareness and if you knew them well enough to know how they'd react then you'd be a better judge than me. So I am not saying they should never be told their husband has died ten years previously, but, as I said, for me my job was to minimise my residents distress. It is a difficult question to answer, especially if it's asked to you twenty, thirty, forty times a day as it often can be! My answers usually consisted of something like ‘oh Bill has popped out for a loaf of bread and a pint of milk, he'll be back soon’, which didn't always satisfy the concerned wife, but very often did. In situations like that it’s then important to use some sort of diversion or distraction to take their mind off it and comfort them so their mind will hopefully move onto something else.
I think the most important thing for me to say is if your loved one has dementia, and maybe they've recently been diagnosed and you don't know quite what to say or how to talk to them, do not be scared that you will get it wrong, you won't. Just show them the love you always showed them. 

As always I do not claim what I write to be golden, I don't expect everyone to agree with it. I just hope someone finds some comfort or support in it. 

Sending my love and support,

Catharine.