What should I say?

It can sometimes be difficult to know how best to respond to a person living with dementia who may say or do things which are unusual, or not something you would do or say yourself. The main thing to remember is that EVERYTHING a person with dementia does or says which appears to be uncharacteristic has a deeper meaning or feeling behind it.

Your job as a home carer might sometimes mean you need to search for a hidden meaning, and use some creativity to help the person you are supporting to feel less anxious, stressed or upset.

Below are some examples of common scenarios, and techniques you could try to deescalate and redirect.

WHAT IS HEARD	WHAT COULD BE MEANT	WHAT YOU COULD TRY

I want to go home	I don’t feel safe or relaxed, I don’t know where I am, nothing seems familiar, I need to get out of the situation	Empathise: I know you do, I’m sorry if you’re not feeling very happy, offer a hug/hand hold if appropriate Distract: I bet you have a lovely home – what is it like? Where is it? Relate: So do I, my favourite thing about home is my big bath – what’s yours? Reassure: You must do, before you go anywhere can you just help me _____ (wipe the table down, have a cup of tea, fold the clothes, change the batteries) Gain trust & have humour: Me too/am I that bad company! Let’s go for a stroll/to the shops/put on some music first
I need to go and see my Mum/my Dad/my Children	I know I need to be somewhere else/I’ve let someone down/I need to find someone who can give me love and comfort	Empathise: It’s hard being away from someone you love, I’m sorry if you’re not feeling very happy and are missing your family I’m certain they are ok and wouldn’t want you worried would they, offer a hug/hand hold if appropriate Distract: I bet your Mum/Dad/children usually have breakfast/lunch/dinner around this time don’t they? Are you like your Mum/Dad? Where will they be do you think? Relate: I love spending time with my family too, my Children are always late, what about yours? There’s nothing quite like Mothers/Fathers love is there? Reassure: I know/have met your Son/Daughter/have heard you speaking about your Mum/Dad. Everything is fine and you don’t need to worry, I’m here to help with ____ before you need to do anything. Let’s get your photo album out so you can tell me more about them Gain trust & have humour: If your children are anything like mine there’ll always be a job list for me to do! Let’s go for a stroll/to the shops/put on some music first then we can have a think about where we need to be.
I’ve got to get to work	I’m bored, I’ve always been so busy I can’t stop now, I don’t want to sit down.	Empathise: It’s tough when you have a lot on at work isn’t it, work can take up an awful lot of your time, it’s great when you enjoy your job and its important, offer a hug/hand hold if appropriate Distract: You obviously put a lot of energy in to your job and I’m sure just for now they’ll know where you are and will be able to contact you if needed. You’ve got a bit of spare time now as it’s only early/morning/mealtime, so whilst you’re in a working mood can you just help me to _____ (wipe the table down, have a cup of tea, paint the fence, water the plants, fold the clothes, change the batteries) Relate: I love my job too especially meeting people, what’s good about your job? Have you done it a long time? Did you always want to do it? Reassure: I know that it’s only early/lunchtime so I doubt you’ll need to be so early/working right now. You are obviously so valued; I bet your work mates wouldn’t want you to feel stressed about things. Gain trust & have humour: If I had put as much in to work as you had I’d be so proud! Let’s have a break & a KitKat before we do anymore!
Who are you? Get out of my house, I don’t know you.	I’m struggling to recognise anything and everything. That is scary. I don’t want my privacy or space invaded.	Empathise: Introduce yourself, your role, what you already know e.g I spoke to your Daughter Gill yesterday who wanted me to nip round because it’s my job. Offer a big smile, hug/hand hold, gently touch the person’s arm if appropriate Distract: Consider taking yourself to another room for a few minutes and re-enter calmly and say something like, “hello, I’m back now, lovely to see you.” Reassure: It must be really hard to have different people coming and going, I’m sorry if it makes you feel stressed or upset, is there anything different I can do? I’m here for _____ amount of time to (clean/cook/help you get ready) then I’ll be leaving. Gain trust & have humour: Introduce yourself & your role as many times as needed. Be clear and concise. ONLY if a person isn’t upset or distressed by your presence see if you can make them laugh “I’m not that bad company am I!” “You’ve drawn the short straw with me”.
You’re my Mother/Sister/Daughter/Brother aren’t you?	I’m thinking about my loved ones & you remind me of them. I’m missing my family.	Empathise: Say “am I like them?”. Introduce yourself and thank a person for noticing something about you. Say “I wish I was because you’ve told me about ____ before and the way you described them was lovely. Distract: “Am I like them? – Shall we find some photo’s of them to look at? What do they look like? Are you like them?” Reassure: I bet you think about them a lot. I’m also really close to my Mother/Sister/Daughter/Brother. It’s a special relationship. Gain trust & have humour: Introduce yourself. “I wish I looked more like your Mother/Sister/Daughter/Brother as they are beautiful in the photo’s I have seen!

If there are other examples you know of that you would like advice on, or to offer your own advice please email natasha.wilson@ageuksheffield.org.uk