Over and again, I have often heard the same story from people diagnosed with something seriously life-threatening. They express disappointment with the people they had considered close friends. And usually because of the things their friends didn’t do. They didn’t visit them much, or avoided contact entirely; didn’t call for their usual chats on the phone and didn’t go with them to appointments and tests as they had promised. If they did turn up, they often caused huge offence, either by not mentioning the diagnosis at all, or by asking wounding and tactless questions.
Often when you get ill, people avoid you. But not because of your disease. Not because they love you any less or because you are somehow less than you were previously. It's because they simply don’t know what to say or how to say it.
Practical things are easy to talk about, but deeply emotional issues are almost impossible. So rather than fail to offer their support ‘properly’, they simply don’t do it at all.
The same thing happens with a diagnosis of dementia, and yet this is the time that the people diagnosed need you the most. This early period is when they are most vulnerable; confused, increasingly desperate, and aware that their mental capabilities are shrinking, along with their memories and their selves as you once knew them. We all know what dementia does to a formerly happy, busy, healthy person. The images are seared on all our brains.
This is when they need you. Visit regularly for short periods. This is, of all times, when they need to feel loved and not alone.
Dementia | What to do and how to say it?
‘It’s the way you talk to us, not what you say, that we will remember...’
(Dancing with Dementia, Christine Brydon)
I have taken much of the following list of Do’s and Don’ts from the advice of Chantelle Merritt, who works at Bridge House Care Home in Abingdon. I came across a pamphlet she had written and was struck by the practical knowledge and understanding she showed, along with her passion to make a difference to people living with dementia: what to do and say, and what not to do and say.
Her focus is on activities that help them feel supported and understood; valuing their feelings and engaged with wherever they are at any moment in time. She has written an ‘Every Connection Counts’ training manual and is a Purple Angel Ambassador for Oxfordshire, working with groups, schools and community carers, sharing her knowledge based on her hands on experience.
So, with many thanks, I am paraphrasing here her advice for living with someone with dementia. Thank you Chantelle.
* Smile. Be warm and friendly.
* Laugh and engage with them
* Call the person by their name. Do you need to tell them yours? Even if they know you well they may have forgotten.
* Notice their hair and clothes
* If someone is withdrawn, start by sitting by them for a while before starting a conversation. Touch them lightly on the back of their hand or the side of their cheek to re-assure them. If they move it sharply back then take your cue from them. Hold their hand if they let you, and if they clasp your hand tightly it may be a sign they are feeling in need of support and re- assurance.
* Have brief conversations if they seem tired or confused.
* Do things together - but always make sure those things are still within their capabilities, so they don’t feel they have ‘failed’. Go for a walk, sweep the garden, make a cup of tea, look at a magazine or newspaper, lay the table for the next meal, make the bed, put flowers in a vase, water the garden or your indoor plants, hang out the washing on the line, feed the birds together.
* Ask them to help you with something rather than doing it for them. Help them keep their independence as long as possible. Clean cutlery, wash up, fold laundry together
* Have a box of memories - photos of family, places they have been; old postcards; ask them about themselves, talk about the past, remind them of their life story.
* If they are living in the past, don’t correct them, just join them there. Let them talk about their memories.
* Ask their opinions. Keep them feeling valuable.
* Include them in what you are doing. Help them to belong, whether it’s going to church, or to a coffee morning, to mix with a group of others to paint or sing
* Offer them a cup of tea or cake and a biscuit
* Write their life story together
* Watch an old movie together
* Do a quiz, jigsaw puzzle or word search puzzle with them.
* Dust or polish
* Make sure they are warm, clean and dry, and not thirsty or hungry.
Always remember that it’s not about how well the person does any of these things, the point is just to make them feel happy, useful and loved. Dementia affects your thinking, reasoning and memory, but not your feelings, so always be kind, and help by explaining what you are doing, why you are doing it, or where you are going and when you will be back.
Use eye contact, and speak gently and reassuringly. Dementia makes you feel vulnerable and frightened but touch helps you feel less alone. Stroke their cheek gently, hold their hand, so they know you are there with them. Approach with full light on your face rather than behind you, so you can be clearly seen. Always include them in conversations and keep everything as simple as possible.
Phrase questions so that they only need a ‘yes’ or ‘no’ reply. Choice can be confusing. Repeat yourself several times if you need to. If you don’t understand what they have just said, repeat it back to them, or try and summarise what you can and ask them if that’s what they meant.
Make sure they are comfortable: Keep an eye on their breathing; the way they are sitting or standing, the expression on their face. The tone of their voice.
* Don’t say things like:
‘You have forgotten again’
‘You just asked me that’
‘Why are you doing that’
‘I’ve already told you’
‘Stop doing that’
‘You can’t go out’
* Don’t talk as if they aren’t in the room, or over their head
* Don’t criticise or scold
* Don’t argue or correct them when they say something. Even when it doesn’t make sense. It doesn’t matter if it’s accurate or not, they are just trying to communicate and connect.
* Don’t give them things to do that you know are too complicated for them. Failure can be very humiliating.
* Don’t take anything they say personally, and if they don’t recognise you at all, understand that it’s because there is a problem with their memory.
* Don’t have the TV constantly on, or vacuum loudly in their room. It will make it much harder for them to concentrate.
* Don’t be afraid if they cry. People with dementia often feel anxious or sad.
* Don’t stay too long when you visit. Little and often is best. Finding words and communicating can be very exhausting for people who are struggling with their memory.
What to do when you are faced with aggressive behaviour?
Anger and aggression are not normal reactions for people with dementia. The first thing to understand is that there is usually a reason, and it’s usually to do with fear or desperation.
Some need is not being met. Or perhaps something you unwittingly said or did has brought on the angry feelings and behaviour. Try to put yourself in their shoes and see if you can find what they are reacting to. People with dementia tend to move straight from feeling to action, with no thought process in between. So their actions are always a response to how they are feeling. If they are frustrated because there’s something they can’t do, find something that they can. Slow everything down, introduce yourself again and explain what you are doing with them. Make them feel safe and secure.
Are they feeling unwell or are in pain?
Are they frightened by something?
Are they frustrated and embarrassed that they can no longer do the things we all take for granted?
Perhaps they are feeling misunderstood or unheard
Or they simply don’t want to do something that they are being told to do.
Imagine how you would feel if you were standing in their shoes. Statistically, you may well be one day in the future. Reach into your own stores of kindness and compassion and reach out with time and care. Dementia can teach you much that expands the human soul.
‘Just love us as we are. We’re still here, if only you could find us....’.
(Dancing with Dementia, Christine Brydon)
Written by health advocate Sara Davenport, founder of one of the UK's leading breast cancer charities, Breast Cancer Haven. With over twenty years' experience in holistic health, Sara's digital dose of wellness teaches you to listen to your body, tweak your lifestyle and improve your health.
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