What to Expect in Late Stage Dementia?

Written by Active Minds on Wednesday the 10th of July 2019.


The later stages of the dementia journey can be hard to define as they are generally different for each person. There are however, a few common denominators which are similar across many people. Here we will discuss just some of the things which you may expect to see in later stage dementia and how to deal with these changes in your loved one.


The later stages of dementia are typically characterised by significant memory loss. In general, recent memories will be lost completely and your loved one may only remember small parts of the past. Your loved one may believe they are living in an earlier time in their life, for example at school. Due to this, frustration can often occur as the individual’s emotions can become tied to that time in which they believe they are living, for example they may think they have to complete tasks from this time in their life and are being prevented from doing so. It can also be common for someone living with later stage dementia to no longer be able to recognise themselves or others and for associated feelings towards people to become confused.

If your loved one is experiencing memory loss, it is important to be patient and understanding. Try not to cause agitation and should they become confused, try different relaxation techniques to calm and de-stress your loved one.

Behavioural Changes

Changes in behaviours can come about as a result of a number of things, usually related to confusion or frustration. Common changes involve agitation and distress, aggression and repetition. Agitation is usually a result of confusion whereas aggression can occur if your loved one feels threatened by a situation. Repeating activities can be sign of anxiety and usually happens if your loved one is trying to make sense of something. Hallucinations and restlessness are amongst other behavioural and cognitive changes experienced by those living with late stage dementia.

When noticing these changes in your loved one why not keep a diary of their behaviours to see what could be triggering them. This way you can try to avoid those situations in the future. It is also useful to keep a diary of techniques which calm your loved one and see what works best for them over time. If your loved one is experiencing behaviours which may put their safety at risk, you should contact a healthcare professional.


As your loved one progresses along their dementia journey, verbal communication can become increasingly more difficult. You loved one may not understand what is being said to them and may not be able to respond verbally themselves. It is common therefore that communication will change to other forms such as facial expressions or gestures. It is important to try and support the person in communication as much as possible and to keep trying to communicate and looking for opportunities for meaningful engagement. Other methods such as using flash cards are images may be useful for communicating should your loved one struggle verbally.

Care Needs

It is quite common for those living with dementia to have detailed what their wishes are regarding care in their later stages; you can support them by trying to meet these wishes. As a person progresses on their dementia journey it should be considered where and how they will be cared for and this is usually dependent on their wishes and the support which is already available to them, such as do they have people available and able to care for them.

The local authority can carry out an assessment for those in need and there are a number of places where those with later stage dementia can be cared for. These include continuing to live in sheltered accommodation, or perhaps moving to a care home should the persons needs become more complex. Hospice may also become a consideration for those nearing the end of their life. For someone living with later stage dementia it is important to ensure they have the correct levels of care and are both safe and comfortable.

As dementia progresses some of the things to expect include altered concentration, reduced mobility and a change in eating habits amongst others. Whilst these are just general changes, and each journey is different, it is important to be as prepared as possible for your loved one as they move into late stage dementia.