Understanding dementia

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.

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

Professor Tom Kitwood

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.

For more on these sorts of ideas, from the point of view of people with dementia themselves, go to the feature Each person is different – so get to know me in the section Getting to know the person with dementia.

The effect of dementia

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.

Damage to thinking

The most common problem that people with dementia struggle with is 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 often misunderstood.

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the person with dementia is being awkward, manipulative, attention seeking, aggressive, ignorant or unusually quiet and withdrawn (see the Aggressive behaviour feature in the Behavioural challenges section).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

Give a person with dementia a little more time to talk, express their feelings and explain what they are thinking or trying to say. It may be helpful to offer suggestions for what they may be thinking or saying, checking any assumptions or guesses that you make.

Changes to memory

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 Behavioural challenges section).

It often helps a person with dementia to talk about the past if their short-term memory is impaired. The person may have vivid memories of their childhood days, a former job or career and places they have visited – and would like to talk or reminisce about those times. In the person’s home you may notice photographs on the mantelpiece or trophies or mementoes in a glass cabinet – all helpful clues as to what they have done and achieved. Talking about the past may give the person confidence to talk about recent events. Memory loss – or experiencing a different reality – highlights the importance of adapting approaches to provide meaningful help and support.

For more on these ideas, from the point of view of people with dementia themselves, read the feature Each person with dementia is different so get to know me in the section Getting to know the person with dementia.

Finding the right words

Another impact of dementia is 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.

If someone you are caring for is struggling to speak or find the right words, listen carefully, be patient and give them time to communicate. Think about what the person is doing or trying to do, the theme of any conversation that has been taking place and look for clues as to what the person is trying to tell you (for example, suggesting a word or words or touching an object the person may be looking at). It is important to be clear about what the person is saying or indicating – and not just assume what word or words they are trying to express.

Understanding requests and instructions

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, and frustration levels will rise on both sides (for more on this, see two related features: A different reality in the Behavioural challenges section, and Toilets and bathrooms in the Dementia-friendly environments section).

Try to use easy to understand language. Keep requests or instructions as simple as possible and do your best to minimise choice. For example, if you’re helping a person to dress, offer them a choice of two or three items to wear rather than a whole wardrobe of clothes. Offer clues as to how you are trying to help – for example, pick up a knife and fork to demonstrate you would like them to eat, put an arm through a cardigan to indicate you would like them to get dressed, or put a foot into a shoe or slipper to show that you would like them to put on footwear.

Perceiving the world differently

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.

It may be possible to reduce confusion over a shiny floor by covering it with a mat or rug, provided there are no safety concerns. Rooms can be made easier and safer to use by reducing clutter and creating clear pathways around furniture (ensuring a person can get to a favourite armchair or a dining table without tripping over or bumping into other household items). Doors, cabinets, drawers and everyday objects (for example, tea and coffee containers) can be labelled to make it easier to find and use them.

For more tips on making a home as dementia-friendly as possible, see Dementia-friendly environments section.

The effect on emotions

Although there is a decline in cognitive abilities over time, 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. They are also likely to be aware of any emotions expressed by others around them (picking up, for example, on a person’s body language and tone of voice).

Think about your own emotions when caring or providing support for a person with dementia. When you arrive at the home of a person with dementia, are you feeling stressed or rushed after a previous home visit? If so, pause before going into the person’s home, relax – and smile as you enter. The person will see from your body language and tone of voice how you are feeling. If you are calm, patient, positive and reassuring, you are more likely to be successful in providing help and support.

For more on these sorts of ideas, from the point of view of people with dementia themselves, go to the feature My life is changing because of dementia in the section Getting to know the person with dementia.

We are all different

No two people experience dementia in the same way – and the way a person reacts to their dementia will be shaped by their personality and personal history.

A person who struggles to speak – or to carry out basic tasks such as eating or drinking – can express themselves in different ways.

Talking about her grandmother, who was diagnosed with dementia in 2004, Bafta-winning star Carey Mulligan says:

She didn’t know how to use a knife and fork, but after dinner she went to the piano and played for half an hour with both hands. It was amazing. One of the ways we communicate with her now is through music. I make her mixed tapes... she loves male voice choirs and opera singers.

Watch Carey's video on YouTube discussing her grandmother’s dementia.

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