Stages of dementia - middle stage dementia

It is generally accepted that there are three main stages of dementia – early, middle and late.

People with dementia and their family often want to know how their condition will progress so they can make decisions and plan for the future.

However, this is difficult to predict as dementia affects people in different ways depending on factors like the type of dementia, age, general health and lifestyle.

Some people’s dementia progresses rapidly, while for others, the changes happen more slowly over the course of months or years.

While dementia progresses differently for everyone, in the middle stages, the mild problems that the person first experienced become more pronounced and start to affect their ability to live without some form of support.

These are some of the changes you might notice.

In the middle stage of all forms of dementia it is likely that the person will exhibit some behaviour changes. These could include:

• following their partner or family member around the home and becoming anxious if they lose sight of them
• disinhibited behaviour in speech or actions
• difficulty getting to sleep, or waking during the night and behaving as though it is in the daytime
• not recognising that they are at home, and believing that they need to ‘go home’ to another place – usually their childhood home
• repetitive behaviours eg rubbing at clothing, asking the same thing repeatedly and not remembering or paying attention to the answer
• restlessness and inability to sit still to rest
• false beliefs that they are going to be harmed or that people are taking things from them
• problems with balance, which may lead to falls

Sundowning is a term that refers to a state of intense anxiety that typically occurs around sunset.

The person with dementia will often have a strong sense that they are in the wrong place – for example, they may insist that they need to go home, even if they are already at home, or that they are late for work, even if they are retired.

They might also be disorientated in time – for example, they may believe that their adult children are still young and need to be collected from school.

As each evening drew in, my grandad would become distressed. He started to insist he needed to go home – even though he was already at home. He seemed to have gone back in time, and thought that his parents and siblings, who had long since passed away, were waiting for him.

– Family carer

In some cases, the person with dementia may experience changes in perception, false beliefs and delusions or hallucinations. They might:

• think there are other people or animals in the house
• talk or mutter to themselves, as if they are having a conversation with someone you cannot see
• react to things other people can’t see or hear
• think that someone is trying to steal from them or harm them
• feel like something is on their skin, such as bugs, leading to scratching and skin-picking

Hallucinations are most commonly visual (seeing something that is not there) or auditory (hearing something that is not there), but people may also smell, taste or feel things that other people don’t. They are more common in people with Lewy body dementia.

Mum started to make accusations that someone had broken into her home and damaged her property. I asked to see the evidence and she said that she had cleaned it all up. It didn’t quite add up.

– Family carer

In middle stage dementia people typically become more forgetful and may find it difficult to retain information. This could lead to difficulties with planning, problem-solving and making decisions.

The person may not recognise where they are or who their partner or family member is. They might forget names – even the names of the people who are closest to them.

Communication often becomes difficult in middle stage dementia, with the person having problems with word-finding, distinguishing and understanding sounds, and following a conversation.

Some people also become disinhibited in their speech and behave in a way that is not normal for them, such as swearing or making tactless or inappropriate comments.

Many people in middle stage dementia lose their motivation and interest in activities that they previously enjoyed.

The person may also feel anxious or depressed or become withdrawn due to the changes they are experiencing. This can have an impact on their partner, other family members or friends – for example if they shy away from social contact and are reluctant to take part in their usual activities.

While this stage can be upsetting for both the person with dementia and those around them, it is still possible to live well.

My advice to anyone who has had a diagnosis of dementia is to know that your life isn’t over. Do what makes you happy, whether that’s painting, walking, staying socially engaged – whatever it is that you enjoy.

– Person living with dementia

To speak to a dementia specialist Admiral Nurse about middle stage dementia or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email helpline@dementiauk.org or book a telephone or video call with an Admiral Nurse in our virtual clinics.