forget not

    In developing this section, we have used material from a number of sources. Some people with a Dementia diagnosis appear able to retain their memory faculties much longer and as such are able to communicate quite well with the outside world even though scans of their brain show visible signs of shrinkeage, the classic dementia damage. As such, some sufferers have committed their thoughts to paper, written books or become dementia advocates. It is for those people we are grateful for telling us about their world

The Diagnosis

     The struggle begins with the testing for the initial diagnosis. It can be an agony of waiting, wondering and desperately hoping that whatever is wrong can be treated and life can go back to normal. Life will change dramatically when faced with the shock of diagnosis. It feels like a curse when the doctor says, 'You have dementia. There is no cure.' It's like the pointing-bone of a traditional curse, and what is said often leads to a terrible depression and withdrawal. Many will hear the standard dementia script: 'You have about five to eight years left until you become fully demented and pass away.' No wonder they suffer depression and despair. And the really frightening thing when diagnosed with dementia is that no one knows how fast you might deteriorate. Dementia and Alzheimer's are both words that create fear and dread. Many wish they had cancer. At least then there is usually talk of treatment, chemotherapy and a possible remission. There is none of that with a diagnosis of dementia. As Terry Pratchet said, he had never heard of anyone recovering from a dementia illness. What do you tell the patient at this critical time of diagnosis? 'It's best not to know' 'He doesn't really understand.' 'Go home and enjoy the rest of your life.' The assumption is that nothing can be done, so why bother. Now one thing you quickly learn about dementia stories is that cases are different in how the individual is affected. Anyone who has looked at the CHC assessment criteria will realise how the dementia symptoms vary. Some may want to get their life in order, to think about family relationships, legal and financial affairs etc. Others may be confused and upset and reliant on a carer whilst and others will expect more information in response to the shock of diagnosis, reinforcing the fear of losing 'the three Rs' (Reacting, wRiting and aRithmetic). However, and possibly, with the help of ant-dementia drugs, potential can still be realised.

Communicating With Us

    Some people with dementia, cared for at home, in day-care centres and in nursing homes struggle because they can't tell people what their world is like. So this is for them, to try and share what it is like.

“As we become more emotional and less cognitive, it's the way you talk to us, not what you say, that we will remember. We know the feeling, but don't know the plot. Your smile, your laugh and your touch are what we will connect with. Empathy heals. Just love us as we are. Visit us and just be with us even if you do not know what to say. We don't need words so much as your presence, your sharing of feelings with us. We're still here, in emotion and spirit, if only you could find us. We need you to listen carefully as we can't repeat our words. We struggle to speak and it often comes out in a very scrambled way, without proper grammar and syntax. Please try to make sense of the feelings we are trying to convey. The sense of being listened to, and of being heard, will make us feel valued and in a relationship with you. This is what we need as we cope with shattered thoughts and our fragmented selves. We operate in a different way to you, and need a different type of interaction, which is slower and more meaningful. People want to be busy, to talk fast, to ask for responses, but we can't cope with that. We need a restful, calm environment, with no visual or aural distraction, to listen to what you say and to be able to speak to you. We may be able to concentrate on what you are saying and will get very confused, so we need quiet time to restore energy. Please don't play music or have the TV on when you are talking to us. If the TV is on, please turn it off. We won't realise we need you to do this, though, and may even complain. One sound source is enough.Just because we can't express ourselves very well does not mean we have nothing to say. As our thoughts and words are tangled and confused, you will need good listening skills, being attentive to non-verbal cues. Take what we say in context, as the words and their order will be wrong. Try to find the meaning behind the words as we will make mistakes in tenses, words and grammar. Be sure we would like you to help fill in the gaps in our struggle to find words and sentences before you do so. Don't correct us, just try to understand the meaning of what we intend to say. Don't interrupt our thread of thought, but let us interrupt you when an idea comes into our head, because if we wait, it will disappear. Try the technique of reflective listening, where you repeat back what we have said to you, not exactly, but repeat the meaning of what we have tried to say. Give us time to speak, wait for us to find the word we want to use, don't let us feel embarrassed if we lose the thread of what we say.This will help ensure you have understood our true meaning, and help us feel listened to.” Try to avoid direct questions, which can alarm us or make us feel very uncomfortable. Questions also make us feel pressured for the immediacy we have lost. It is best to look at us, to make sure there is eye contact and that we are attending from the beginning of what you say. Don't shout at us, though - the problem is often not our hearing, but our understanding. Shouting simply distresses us, it feels as if you are hitting our head, causing even more confusion inside there.Touching us, to connect with us, may be helpful. Many of us may not like to be touched by people we do not know, but find it therapeutic to be touched by people we do know. Stroking is an important part of touch, and I find it lovely to touch and to stroke, and to be touched, to connect in this way."

  The way to improve communication with people with dementia has been usefully summarised (3):

• provide a restful environment
• be calm, reassuring and relaxed
• approach the person within their line of vision and identify yourself, maintaining eye contact at the same level
• use touch where acceptable to the person
• speak simply and slowly, but respectfully
• allow time for understanding
• be a good listener, allow pauses and look for meaning behind words
• use short sentences without double messages
• illustrate what you are saying where possible, with aids such as photos
• try to follow what they are saying, do not correct mistakes nor laugh at inappropriate responses
• be complimentary where appropriate
• do not be embarrassed by displays of emotion