Each person with dementia is different so get to know me

Each person is different

Each person with dementia is different: when it comes to offering support, different things are helpful for different people.

Look at us in this group, we are all totally different. The only thing we have in common is the fact that we have a diagnosis of dementia.

(Roy)

Yes we are all different – and of course that goes for people without dementia too – maybe because we are forgetting to conform, or not bothered – so our differences are even more obvious.

(anonymous)

While it has become a mantra within social care to say that each person with dementia is different, people with dementia tell us that in their experience this doesn’t seem to have got through to everyone.

I saw one of those ‘top ten tips’ about dementia at the doctor’s surgery. Why is it always ten?

(Stan)

Make an effort to get to know me

Getting to know a person with dementia is really important if you want to be able to support them well.

Remember though that getting to know someone is not a single act: it’s an ongoing process that will take time.

Get to know the person, not the dementia. Otherwise the stigma sets in – get to know the person first. Know me not the dementia. Dementia comes second.

(Ken)

Getting to know me is a gradual process, you will pick things up later to slowly build up a picture.

(Mick)

Things change – so it’s important to get to know someone over time.

(Ken)

We wouldn’t expect to know much about anyone after a short meeting – and people with dementia are no exception.

So – spending time with the person and allowing them time to get to know you and vice versa is important. After all, we wouldn’t necessarily want to open up to people we have just met, especially if it’s about subjects which are close to our heart. Building a trusting relationship is important – and that can take time.

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

(Peter)

Find out about my life story

Time spent with the person with dementia learning about their life can be valuable in so many ways.

You can find out a bit, or sometimes quite a lot about the events and experiences that have shaped the person you see today. It can help you learn about key experiences that have shaped the way they see the world. It can help you to learn about what the person values in life, and what they see as important in themselves, in others, and in the world around them.

Learning through memories and experiences

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This in turn can help us to understand what the person wants from life, how they want to spend their time, and with whom.

You have to be at ease with others to discuss your past. Some people might be reluctant to give answers, especially if they think they are not the ‘right answers’ or ‘good answers.

(David)

Working with the person with dementia to create or maintain a life story book can be useful. If the person's dementia worsens over time, people working with them can turn to the life story book to maintain insight into the person and their perspective on the world.

A life story book may be of help if I go into a place where people don’t know me and I can’t tell them because I don’t remember or can’t communicate with them.

(Ken)

Well I think it would be good to help me to remember things in the future, but also to help other people to understand more about me as well.

(Sandy)

For more on these ideas, look at the feature on The person behind the dementia in the section on Communicating well.

Positive changes, painful changes

It is important that we recognise that people continue to change, as do their tastes, opinions and interests.

It’s important that life story work is seen as a process, and not a one-off. You are a different person at 20, at 30, at 40 and what you like and dislike changes over time. In fact, you might be a very different person at 51 than you were at 50. The danger is, especially if life story work is done at a very early stage, which it should be of course – is that the person becomes set in stone and defined by that life story for the rest of their lives.

(Brian)

It is also important to realise that not all memories and life experiences are positive – many people will have areas of their lives that they do not want to discuss, or which are difficult or distressing to them:

Well, it’s like [the dementia expert and academic] Dawn Brooker says – there are three drawers. In the top draw are all the things you don’t mind anyone knowing about. In the middle one are things you might share with close family and friends, and you can guess what’s in the bottom draw. So we need to have safeguards in place, and proper training so that whoever is doing the life story work with you knows and respects the bottom and middle draws. It might also be that you end up thinking about or discussing things that are really upsetting for you – so the person needs to be really sensitive to that – and again make sure that stuff in your bottom drawer stays there.

(Ken)

Make a connection with me

There are various ways to make a connection with someone with dementia. Music is a powerful tool, so is reminiscing about the past or talking about interests such as hobbies, sport or pets.

Talking about and listening to music can be a really good way of finding out more about someone.

Some people will have particular pieces of music that are relevant to, and evocative of, very specific experiences, events or relationships in their lives. Sometimes, people may not have heard a piece of music for years, but will often remember the words or tune, as well as lots of other memories associated with it.

Music is important to me – it reminds me of good times, it reminds me of bad times.

(Roy)

It’s important to remember that, like many people, Roy’s interest in music is not just about reminiscence – it’s about enjoying music in the here and now, and how it makes him feel.

My musical taste has changed.

(Ken)

However, people with dementia have stressed the need to avoid an assumption that the life of a person with dementia is all about looking back.

People with dementia have a variety of other interests. Sometimes people continue with interests they have had for many years, but sometimes they pick up new interests, as Harry explains:

Well the camera – it’s definitely something new – I really enjoy the camera, I really do. It’s my window – what I see of the world – it reminds me of where I have been.

(Harry)

Appreciating the interests and skills that people with dementia have can really help us to see the person behind the diagnosis as well as giving us a useful focus for discussion or activity. And you never know, you might learn some new skills or develop some new interests yourself.

There are many resources available that feature pictures, videos and other reminders of the past, designed to stimulate memories and aid discussion. These can be really useful and very enjoyable to use.

For more on these sorts of ideas, look at the section Keeping active and occupied.

Talk to my friends and family

Friends and family can often tell you a lot about the person, and with the permission of the person with dementia can be a valuable source of information.

Before my dementia, I would say don’t talk to anyone but me. But, as things are, I’d say talk to whoever you want. If you want to help me, you’ll need to know something about me. If I’m not in a position to tell you, by all means talk to friends and family.

(David)

However, tread carefully, as there can be pitfalls. Talk to my family? Yes – but this is not always the answer, some people don’t tell their family everything, some are too close, some not close enough. Lots of people don’t have family.’

(Peter)

Talking to my family is a very good idea, but people need to be sensitive and careful about some subjects and the questions you ask – for example dragging up why I got divorced.

(David)
For more on these sorts of ideas, go to the feature Working alongside carers in the section Working in partnership.

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