If you have noticed that your loved one has recently deteriorated – maybe they have lost the ability to speak clearly, their mobility is very limited, and they may be living in the past, they may be approaching the later stages of the condition. It’s understandable that you may not want to think about what lies ahead in the later stages but identifying later-stage symptoms will help so that you can ensure the person has appropriate care.

In the later stages of dementia (sometimes known as ‘advanced’ or ‘severe’ dementia), a person’s memory loss will be significant, and they may only recall much earlier memories. They may also believe they are living in an earlier stage of their life. In the last two years of her dementia, my mum (who was in her late seventies) believed that she was a teenage girl. She was flirting with male staff at the nursing home and even thought that one of the carers was her boyfriend. It was harmless, and I went along with it as she seemed happy, but it was clear that she had no idea what stage of her life she was at and was completely detached from reality. She also showed signs of being very childlike. Sometimes she would behave like a child having a tantrum.

The person may no longer recognise themselves or other people. They may look at themselves in the mirror and think that ‘an old person’ is looking at them. My mum berated herself in the mirror as she thought a stranger was staring at her. In the end, we removed her mirrors.

Mobility can be severely affected in the later stages of the condition. The person may lose their ability to walk, stand or get up from a chair. This of course can increase the risk of falls, so the person needs to be carefully monitored.

Other symptoms of late stage dementia include weight loss, as the person’s appetite may fade, and this can affect the person’s immune system and make it harder for them to fight off infections. The person may become incontinent and also struggle to speak. My mum lost the ability to construct clear sentences and words became jumbled and seemingly irrelevant. Speech can often be limited to a few words.

In the late stages the person may also struggle to swallow and chew food and could be at risk of choking. Medication may help with this so it’s important to speak to the person’s GP.

The person may also become bed bound or spend a lot of time seated in the same chair, barely moving, and as a result, they may develop pressure ulcers (bed sores). Always seek medical help if this occurs. It’s important for the person to have regular skin checks and there are devices that may help, such as putting a piece of foam at the end of a person’s bed that they can put their feet on or placing a pillow under their calves so that their heels are floating instead of resting directly on a mattress. Regularly turning and shifting the person in bed can also help so that different areas of the body can bear the person’s weight, and not just the same body parts.

You can see at this stage that the person is likely to require round-the-clock care. Don’t try to cope on your own. My mum was in a nursing home at this stage and received good care, but if the person is living with you, enlist help from a professional care agency if need be.

In the final stages where the person is dying, they may lose consciousness, become agitated or breathe irregularly. They may also have cold hands and feet. While it’s extremely distressing for family carers to watch this, person is likely to be unaware of what is going on. Speak to a healthcare professional as medication may be available.