What happens in the later stages of dementia

Because everyone experiences dementia differently, everyone’s symptoms will be slightly different. Many of the symptoms that are common in the later stages may also be present in the earlier stages.

However, the symptoms listed below are most likely to happen in the later stages of most people’s condition.

Memory loss is likely to be very severe in the later stages of dementia. People may be unable to recognise family/whānau members or people that they see regularly, or even their own reflection. They may no longer be able to find their way around familiar surroundings or identify familiar everyday objects.

However, the person may occasionally experience sudden flashes of recognition. The person may believe they are living in a time from their past and may search for someone or something from that time. It can be reassuring if people around them use this opportunity to talk about the past.

Even if a person has severe memory loss, they may still be able to appreciate or respond to stimuli such as music, scent and touch. That’s why it’s important that visitors and people who care for the person with dementia continue to talk to them, even if they don’t appear to understand, and can’t or don’t respond.

Along with memory loss, a person with dementia will become less able to understand what’s going on around them, and what’s being said to them.

They are likely to find it difficult to communicate with others verbally. They may gradually lose their speech, or they may repeat a few words or cry out from time to time. This is when the ability to read someone’s body language, facial expressions and gestures is very important as these may give us clues to how the person with dementia is feeling.

Many people with dementia can still understand and display emotional signals long after they can no longer speak. Again, family/whānau members and visitors should keep talking to the person as normal, even if they don’t think they’re being understood. Aside from still stimulating the person with dementia, it preserves their dignity and helps them feel included. And there may still be moments when the person seems to understand and make an appropriate response.

Many people with dementia gradually lose their ability to stand, to walk and to do everyday tasks without help. Some of the first signs of mobility problems is that the person is unable to stand up from a chair or bed, or they begin to shuffle or walk unsteadily. They may also seem slow or clumsy and more likely to bump into things, drop things or fall over.

Some people with dementia eventually become confined to a bed or chair. When that happens, those who are caring for them should ask a health professional about specialist equipment and to show them how to move the person without causing injury to themselves or to the person with dementia.

There are many techniques, pieces of equipment, aids and adaptions available to help move people who are less able, or unable, to move themselves.

It’s common for people in the later stages of dementia to lose a considerable amount of weight. People may forget how to eat or drink, or they may not recognise the food they are given. Some people become unable to swallow properly. Try offering a little food that is easily swallowed. At this time, nutritional supplements could be considered.

Many people lose control of their bladder and bowel in the later stages of dementia. When someone can’t control when to do their urine (wees) or faeces (poo), it’s called incontinence. For the person with dementia, this could happen all or most of the time, or there could be just the occasional ‘accident’.

There are a number of reasons why people with dementia can become incontinent. While it can be because the brain can no longer send and receive the signals needed to control the bladder and bowel, it could be because of treatable medical conditions.

Possible causes include:

• a urinary tract infection
• severe constipation
• the side-effects of medication
• prostate gland trouble
• forgetting how to go to the toilet or forgetting where the toilet is
• not recognising the need to go to the toilet.

If a person develops problems with continence, discuss it immediately with a doctor. Incontinence pads and other aids are available to help manage the incontinence. The doctor can put you in touch with specialist nurses who can give you expert advice and support.

People in the later stages of dementia sometimes behave in ways others find unusual or puzzling – basically it’s behaviour that’s changed from what they usually do or used to do.

‘Changed’ or ‘puzzling’ behaviour varies from person to person but some common examples are described below.

Becoming agitated at the end of the day: Some people with dementia become more agitated and confused in the late afternoon and early evening. This used to be known as ‘sundowning’. It might help to give them more support at this time, or to arrange extra help at this time of day. The person with dementia may also be more prone to walking about at this time.

Restlessness: Some people are restless because they need more physical activity. They may feel calmer if they are helped to walk at different times throughout the day or to do gentle exercises. Even being able to rock themselves in a rocking chair can help.

Aggressive behaviour: The person may react in an aggressive way if they feel threatened or cannot understand what’s going on around them. Often they are acting out of fear, and may even be frightened by their own behaviour, so try to keep calm and reassuring.

Rocking: Some people use repetitive actions such as rocking backwards and forwards, tapping on something or calling out the same sound or word. If they are calm they may be using it as a form of comfort, so don’t worry about it. But if they seem tense, the repetitive action may be a sign of distress. If you think this is the case, check they’re not unwell or uncomfortable: they may be hot, cold, have some pain, be hungry or they may need the toilet (any of these things can trigger a change in behaviour.)

Hallucinations and delusions: Some people see, smell, hear, taste or feel things that aren’t really there (an hallucination) and some may have incorrect beliefs about what is happening (a delusion), e.g., that they are in danger or that someone is stealing from them. If they’re distressed, try to distract and comfort them.

Hand wringing: People in the later stages of dementia often move their hands a lot. They may constantly wring their hands, pull at their clothes, tap or fidget, or touch themselves inappropriately in public. A rummage box, made of an old shoe box or biscuit tin containing things related to the person‘s past, such as pictures, knitting wool or tools (so long as they’re safe), may help to keep their hands occupied.

Inactivity: People in the later stages of dementia may have long periods of physical inactivity where they remain still, with their eyes open but not doing anything, or seeming to see anything. This is common for this stage of the condition.

The reasons why these types of behaviour occur is not always clear, but they may simply be as a result of the progressive damage that is happening in the brain, or may be due to something more ‘practical’ that is happening which is upsetting or distressing the person.