What other people can do to help me live well

People with dementia need the support of other people.

You want people who are going to pull you up, not push you down. You have just got to get on with it – but you do need the backing of all these other people.

(Ian)

Carers, supporters, friends and family

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You definitely need people. There are different ways of doing things – you’ve got to find a way of getting people to support you. It’s important that you’ve got some sort of support. I have a group of supporters and carers who are good at coming to the rescue when things go wrong.

(Mick R)

The way we support a person with dementia makes a huge difference to how they experience living with dementia.

Understand me

Nobody wants to be in the situation where they need to have someone caring for them.

Someone coming in to be your carer – it can be very awkward (if they don’t know you) – no one knows what to say, how to act – so get to know the person – talk to them.

(Harry)

Understanding the person you are caring for can help this relationship to work.

At a really practical level, pay attention to how the dementia is affecting me – don’t rely on ten top tips – talk to me.

(Laurence)

Knowing what’s important to the person helps to make sure that they get the support and care they need.

I’m fine so long as things go according to plan. It’s when the plan is disrupted that I lose the plot and it all goes wrong… Yes, so time spent helping people to get a routine a plan or to learn what their plan is – that will make a difference.

(Margaret)

They need to know who I am, how I tick, how I function, what I can do and what I can’t, and how they can help me.

(Ann)

I need people who understand me, know the problems I’m having and make me feel relaxed.

(Mick)

Empathy is so important, but impossible without knowing the whole story.

Empathy – being there with you… it’s difficult to be empathetic if you don’t know the situation.

(Ann)

Try to think about how the person with dementia might be feeling and seeing things.

There might be times when I can’t cope as well, perhaps I’m having a bad day or something, but please try to understand how things might look from my perspective.

(Sandy)

Needing help going to the toilet can be difficult, it has happened to me. I find someone I trust to help. Staff shouldn’t be embarrassed.

(Mick)

Communicate with me

People with dementia want to be talked to and listened to.

Talk to me (not my wife) – it helps me to retain my independence.

(Ken)

I want people to be natural, talk to me normally. You need to make me feel that you are interested in me – then I’m more likely to be forthcoming.

(David)

It’s important to remember that communication is a two-way process.

I need your attention – don’t think about where you’re going on holiday.

(David)

I tell people that there is a part of my brain that isn’t working – so don’t worry if I forget your name – I will help you and you can help me.

(Jude)

Explaining things is important. Use different ways to communicate.

I want things in writing, because reading is still good for me. Having things written down makes life a bit easier. I can’t retain the spoken word as well as I can the written word.

(David)

Communication usually becomes more difficult as dementia progresses. But this means it is more important than ever.

I know I’m starting to find words more difficult to remember – but talking is really important.

(Ian)

I find it difficult when I can’t get words out – when you can’t get words out people can help you… they understand what you want.

(Mick)

Communication skills can really help when communication becomes more difficult. Listening better and explaining things more clearly can make the process easier for everyone.

You have the task of fishing around in this murky mind of mine.

(Mick R)

However, as Maria says, it is easy to overdo specific communication skills at the expense of the overall message.

I think she had been on a course. I thought her head was going to drop off – I only wanted a chat.

(Maria)

Listen... and then do something about it.

(Sandy)

For more on these ideas, look at the section on Communicating well.

Build a relationship

People with dementia value relationships with people who are supporting them.

I would feel good if people are like me – open.

(Sandy)

It takes time you know – to build a relationship – and you need to give us time to talk and time to get to know you too.

(Peter)

Building trust and mutual respect is important.

Dignity and respect are common courtesies and human values.

(Ann)

I don’t want to have a conversation with people I don’t know. You need to be able to trust people who are coming into your own home.

(Sonia)

A little kindness goes a long way.

Kindness is being there for someone – but not taking over their life.

(David)

People who are dealing with me need to be sympathetic and sensitive.

(Peter H)

Having a sense of humour is great (of course laughing with, not at, the person).

I get very wound up and stressed, it’s good to lighten the mood, but without being disrespectful.

(David)

Be calm and patient, and try to create a calm environment. I don’t like to be told to calm down – too much like my mum!

(Mick)

I can’t stand being around people shouting and arguing – that totally discombobulates me. I can’t think straight.

(David)

When I get confused, I make a cup of tea and go back to it later when there’s no time pressure.

(Margaret)

For more on these ideas, look at the feature on Having a conversation with someone with dementia in the section on Communicating well.

Let me take risks

When people feel they are losing their independence, it is important that they are supported to continue to do as much as they can themselves.

I don’t like it when carers take away what you’re supposed to be doing.

(Sonia)

People may need more time to do things and may seem to be having problems, but supporting people is not always about doing everything for that person.

Let me work out how to do things and give me time.

(Peter)

Some people with dementia have described how their carers have sometimes gone too far in trying to protect them, for all the right reasons.

People over-react to try to protect.

(Peter H)

However, being stopped from trying to do things can be very frustrating.

Being able to make mistakes is really important – otherwise how do you know what you can and can’t do? I understand that people don’t like to see me struggle, and don’t want me to be in danger, but you need to get the right balance.

(Stan)

I’m not dying of dementia, I’m dying of cotton wool.

(Brian)

Support me to meet other people with dementia

For many people with dementia, being with other people with dementia who are experiencing similar things can be very helpful.

I need the company of other like-minded people. Sharing problems with each other is a good thing.

(Peter H)

Many people are reluctant to mix with other people with dementia for a variety of reasons.

I go to a post-diagnostic support group. When I was first told about it, I thought, 'This is ridiculous – I’ll never last the 16 weeks. I’m not a social person'. But it’s been good. We don’t talk about what everyone’s got, but it’s been informative and I’ll miss it when it finishes. I’ve enjoyed being with those people.

(David)

At first I went in and I thought, 'This is not for me, these people are worse than me', but gradually they became my best friends – they helped me and now it’s my turn to help the others.

(Sandy)

The support from others with dementia ranges from practical advice to regaining a social life. Often people feel more relaxed with people who know exactly what they are going through.

Nagging’s good. We nag each other in a good way.

(Ian)

We laugh our heads off.

(Derek)

For more on this, you might like to read the feature on Accepting diagnosis in the section Support after diagnosis.

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