Dementia Gateway: Getting to know the person with dementia

Understanding dementia

When you've met one person with dementia, you've met one person with dementia.

Professor Tom Kitwood

Explore the links below now to read more about this topic:

• 1. Introduction Open

  Some people are easier to get to know than others. Each person is different. Even people who belong to the same family can be very different from each other. Some people are very at ease with themselves and happy to share their feelings quickly.

  Other people are much more reserved and difficult to connect with. People living with dementia are no different.

  Dementia happens at the stage in life when people's personalities are well formed. A person living with dementia does not cease to be the person they once were. The dementia may make it more difficult for them to be the way they used to be with others or more difficult to do things that they once found easy.

  At the core of their being, however, the person still remains. The key challenge for those helping the person with dementia is to find ways of connecting with that person.

• 2. The person remains Open

  Dementia happens at the stage in life when people's personalities are well formed. A person living with dementia does not cease to be the person they once were. The dementia may make it more difficult for them to be the way they used to be with others or more difficult to do things that they once found easy.

  At the core of their being, however, the person still remains. The key challenge for those helping the person with dementia is to find ways of connecting with that person.

• 3. The effect of dementia Open

  In order to get to know someone with dementia it is helpful to appreciate how the dementia affects a person's view of what is going on around them. There are many types of dementia (for example, Alzheimer's disease and vascular dementia) and most are caused by damage to the brain which gets worse over time. In this feature, we'll look at some of the most common problems that people with dementia struggle with as a result of this damage to the brain.

• 4. Recognising damage to thinking Open

  The most common disabilities that people with dementia struggle with are their thinking abilities – sometimes called 'cognitive abilities'. The disability is not obvious, like being able to see that someone has a damaged leg. Cognitive disabilities are much more subtle and unfortunately are often misunderstood by people who are there to help the person with dementia.

  Common misperceptions are that the person with dementia is being awkward, manipulative, attention seeking, aggressive or ignorant (see the 'Aggressive behaviour' feature in the 'Difficult situations' section). If we believe these explanations of someone's behaviour then we are less likely to want to get to know them.

• 5. Changes to memory Open

  Dementia often disables those parts of the brain that allow us to remember events, particularly new information that has come to us after the onset of the dementia. Even events that are very important – such as the death of a loved one – may not be remembered consciously or consistently.

  This is not to say that this is not important to the person with dementia or that they do not have any memory for the event. It may be that they simply cannot recall it when asked about it directly.

  On the other hand, memories that the person has had throughout their lifetime, since long before the onset of dementia are usually quite clear and seem to them to be much more 'the present' than recent ones. As human beings we are programmed to try to make sense of the world.

  Misunderstandings can occur when the person is trying to make sense of what is happening to them in the here and now by calling on those long-held memories rather than on recent events (see 'A different reality' feature in the 'Difficult situations' section).

• 6. Finding the right words Open

  Another impact of dementia is an increasing difficulty in finding the right words for things and to express oneself in a clear way. Over time this can result in speech becoming very limited. If by the time you get to meet someone with dementia they have lost a lot of speech then getting to know them becomes more of a challenge.

• 7. Understanding requests and instructions Open

  The ability of people with dementia to understand the words that are being said to them gets worse over time. Following direct instructions may be particularly difficult.

  So, if you are telling someone to move a particular part of their body while helping them dress, if the part of their brain has been affected that means they can no longer follow direct requests, then frustration levels will rise on both sides (see 'A different reality' feature in the 'Difficult situations' section, and the 'Toilets and bathrooms' feature in the Environment section).

• 8. Perceiving the world differently Open

  Another subtle type of cognitive disability that is often misunderstood is around visual perception and body perception. Although eyesight and movement may be intact, if the parts of the brain that interpret perceptions have become damaged, then the person you are caring for will literally see and feel the world differently from you.

  Where you see a nice polished floor, the person with dementia may see a wet and slippery surface. Where you see a sink, the person with dementia may see this as a toilet. This can lead to misunderstandings.

• 9. The effect on emotions Open

  Although there is a decline in cognitive abilities, there is no decline in depth of feeling or the range of emotions that people with dementia experience. Indeed, for many people, emotions appear stronger than ever, and they can express anger, joy, grief and excitement without difficulty.

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