Transcripts of films 1 and 2 from chapter 4 ´Practical caring´
Practical caring (film 1 of 5)
Dementia affects all sorts of daily activities. This chapter will give you some ideas about how to cope. Because everyone is different, sometimes you might need to try several approaches before you find what works for you, and the person you care for.
Physical wellbeing
People with Dementia are as susceptible to physical health problems as the rest of us so it’s quite important to try and support them to stay well and that will involve things like some exercise, and perhaps good healthy diet – the kind of things we all like to pay attention to for ourselves and the sense of wellbeing produced from that will actually promote a good sleep pattern to. When any of us are in pain or discomfort, or feeling unwell, we become a little more grumpy of irritable, and this is just the same for the person with a dementing illness, and maybe the first sign you notice that they become unwell and it is quite important that you don’t assume any changes in their presentation or their confused state are attributable to their Dementia.
It’s important for all of us to make sure that we get plenty of fluid on board – it’s part of keeping ourselves healthy. Someone with Dementia obviously may be more vulnerable to that because they forget to drink and if someone becomes dehydrated, they can become constipated, they can become confused, and they can become over-tired. The sensible thing is to try and make sure that the person has 6-8 drinks every day, and really to vary that to work with what the person likes having – perhaps they may have water, they might have juice, they will have tea and coffee but whatever works for that particular individual is the fluid to stick to really.
People with Dementia can have problems with their vision and their perception of the world as a symptom of the condition and also how they hear what’s being said to them – they may have some difficulty understanding and interpreting that – so it is important that we try and give them the best chance possible to relate to the world around them and that means paying attention to the small things like keeping their glasses to hand and keeping their glasses clean and if they wear a hearing aid, making sure that that’s functional – it’s got a battery in it and it’s kept clean. If you notice or think that person’s hearing or eyesight is deteriorating or has changed in any way, it’s important to consult the doctor, or an optician or a hearing specialist to make sure there isn’t something that can be dealt with, something that can actually improve the situation for the person with Dementia.
If the person with dementia falls, gets ill or constipated, seems in pain or depressed, or starts to see things which aren’t there, consult the doctor.
Mental stimulation
Everyone needs enjoyable things to do, and people with dementia are no exception. Think about what the person used to enjoy.My grandfather used to be a bridge player. He still loves to play cards so now we play snap and other simple games.
Call the Dementia Helpline for a free copy of “Activities: A Guide For Carers Of People With Dementia”, which has some useful ideas. Involve family and friends.
Break down tasks into more manageable steps. Many people with dementia can still remember things from long ago. Going through old family photos can be very enjoyable, for example, as can doing things that they used to do, such as DIY, sewing or gardening. Try not to take over, just give the help they need. Even if the person doesn’t remember an activity, it is still worthwhile if they enjoy it at the time. A day centre or other support can offer enjoyable activities for the person and, in turn, give you valuable time for yourself.
Life story book
My wife and I had six children and she’d kept locks of their baby hair, so we put them in the book – and we put in things like scraps from cushion covers she’d made years ago. A life story book is a collection of reminders of important times in a person’s life, such as photographs, tickets, postcards etc. It is an enjoyable thing to make. Ask the person’s permission to show other people such as family members, care staff and friends, who may be involved in their caring. They may find out things they never knew.
Spiritual wellbeing
Caring for the whole person means caring for their spiritual needs too. Most people’s spirituality is to do with their culture, tradition and upbringing. Find out what spiritual things used to be important to them, if any. If they attended religious worship or groups, try to help them continue for as long as possible. Encourage visitors from their place of worship.
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Forgetfulness (film 2 of 5)
Sometimes my dad would mention a visitor he´d had, but he was never sure who it was. So I put a visitor´s book out. Turned out the mystery person was his carer.Most people with dementia will have memory problems, which get more severe as the illness progresses. Early on, memory aids may help but later you will need to give more direct reminders. The person may become more confused and forget basic facts, and confuse the past with the present. Reassurance is very important.
They may be aware that they can´t now remember what they used to, which can be very upsetting and frustrating.
Keep to routines as much as possible, as changes can make confusion worse. Memory aids, like a diary, work best when the person is in the habit of using them. Put signs or pictures on doors to help them find their way around, for example the toilet. Or simply leave the doors open so they can see what´s in each room. A memory board, or notice board, is a useful reminder of what’s going on. If you’re not always with the person, try phoning them to remind them of things.
Repeated questions
Some days Andrew will spend the whole day asking questions, the same question over and over again, and I used to get angry and get irritated, and shout back ‘you’ve asked me that question before’, and I truly finally understood that he didn’t know he was asking that question over and over again. So I will answer the question once or twice and then when he keeps going, I either walk away and don’t answer it or I get him involved in something else and then he will forget.
Conversation and communication
It’s really important to try and get communication right. With my mum, the thing that I do often when I go to visit her, I visit her every day, and she walks a lot up and down the corridor, and when I walk towards her, I put my arms out and she points to me, she recognises me and she will walk straight into my arms and give me a hug. That works extremely well.
If my mum says to me that she’s going to see her mum later, her mother died about 40 years ago, I will never argue with her, I will always say to her ‘so are you going to see your mum later?’, and she’s content then. I’ve observed somebody else telling my mum that her mum died and that distresses my mum and I don’t see any point in doing that at all. That’s what works really well for me but for other people they need to find what works well for them.
Andrew would try and tell me things and it took a while for me to realise that he was in a fantasy world – he was actually making up what he wanted to believe rather than what was actually happening. For example, he grew up in England and we only came to Scotland ten years ago and he now tells people that he went to school in Glasgow, wore a kilt and played the bagpipes and is incredibly happy and excited about this, and of course when people hear him telling this, they think this is wonderful. I’m the only one who knows it’s an absolute fantasy and I don’t stop him from doing it because it gives him pleasure, it harms nobody, so we just let it be.
To remind him about things he has to do, we have a diary next to the telephone and every morning I write down the things we agree that he would like to do so that during the day when he’s forgotten that he was supposed to, perhaps work in the garden, he would come in and cross off something. At the end of the day there is no right answer, and you have to do what works for you.
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Reviewed 29 July 2014