What are the later stages of dementia?

By the time the dementia patient reaches the later stages of dementia, they will be noticeably more frail. The cruel effects of the disease will now be much more visible than they were in the earlier stages. The sad reality is that the damage within their brain will be more significant and the impact to various functions from cognitive parts of the brain and motor functions will be more noticeable. They may now struggle with stability, or walking without an aid and thinking ability or the way in which we approach tasks, depending on the type of dementia that they have been diagnosed with. Dementia progresses differently in patients but in general the latter stages will involve these sorts of declines. As always, it is important to remember, that they are still them and their illness impacts the way they could do things. This can still create feelings of anxiety or agitation in the patient. There is a person there but their interaction with the world will be very different to how it once was. 

This is a distressing time for loved ones and relatives. Both for the dementia patient who can become locked into their new reality, which is very different to the one they once knew. And for the family members and friends, who are supporting their needs, it is very challenging to witness the state of decline of your loved one. There are still activities that you will be able to engage in together. 

You may feel like you don’t want to know what will happen to your loved one, or if diagnosed as dementia patient, what can happen towards the end of the disease. However the more you know about it then the more you can plan and prepare for. It is not something you have to read alone. Why not go through the information with someone else, so you can discuss it at the same time?

Memories

With the reduction in cognitive function, memories are one of the areas that become significantly impacted. The dementia patient may not remember when they last saw someone and even some of their past memories may have been lost. Sadly, they may not recognise their husband or wife, but it does not mean that they have completely forgotten emotions linked to people that matter to them, and so this adds to their confusion even more. Some patients believe that they are still at school, or living in an earlier time period of their lives. This can lead to anxious times and confusion, and distress for family members.

Tasks and activities

Tasks may become more problematic for the dementia patient and take much longer to complete. They may only be able to concentrate on short easy tasks and will require more support than they did. They may still be able to enjoy hobbies that they did, although to a lesser extent. Knitting, music and sensory therapy are thought to be activities that help to engage the dementia patient and give them enjoyment also. However if their motor skills are impaired, they may no longer be able to knit, or play music as they once did, so easier sensory activities, even touching different yarns of wool, or creating sounds and listening to music can be tried instead.

Communication

By the late stage of dementia, patients tend to have lost the ability to communicate verbally. Activities which stimulate their senses are enjoyable to dementia patients, as it encourages emotions and reactions from the patient. However they are communicating, try and understand what they are trying to convey, watch their body language and try to match it. This will help them to feel more comfortable and confident. Even the power of touch and a hand massage can promote the feeling of security, while reviewing old photographs or listening to their favourite music can elicit a non-verbal response. To help with their communication, it might be worth supporting them with simple flash cards, to give them a way in which to communicate. We cover a range of sensory activities that you can try here in our full article here. Things like smells, favourite food and memorable pictures are some examples.

Including the dementia patient in a conversation, as much as possible even if they cannot respond verbally, is still really important. Remember that they are still a person, the symptoms of the disease may have removed their ability to speak and communicate but they still have the ability to feel emotions and will feel frustration, anger and anxiety over their own changing state. It helps to encourage them to stay involved, as one of the negative sides of dementia is that patients can switch off socially, all the more reason to encourage as much as possible. 

Difficult behaviours

We cover difficult behaviours in more detail here, but in summary these include:

• Sundowning

• Anxiety, anxiousness or aggression

• Lack of sleep

• Wandering

• Hallucinations and delusions

• Incontinence 

As communication is impacted, there is more chance that the dementia patient may become more agitated and anxious. It is important to try and support them and give them a way to communicate. If they suffer with sundowning, it is possible that their anxiety is stemming from another reason and while you try to work out what is causing this, you can carry out some of the calming activities that we discuss in our article here to calm them.

If the patient is suffering from interrupted sleep patterns or has difficulty sleeping, light therapy may be an option to help regulate their body clock and encourage a normal night time sleeping routine.

Help with toileting 

Try not to let your emotions get the better of you as they are not deliberately trying to be difficult. Something simple like going to the bathroom, becomes a real challenge. They may become angry and anxious because of the changes they are experiencing and the brain fog that is replacing their cognitive thinking. Just try to be as supportive as possible and if you are their main carer, make sure that you are getting support and breaks. This is just as important as their care. 

Help with eating and drinking

As dementia progresses into the later stages, it is quite common for dementia patients to lose weight. They will struggle more with eating and can have challenges swallowing food. Always supervise a dementia patient when they are eating or drinking, in case they start to have difficulties. 

Required care

It is likely that by this stage they will require someone to be with them around the clock. That doesn’t mean that they will need 24 hour awake care, but that they will need support in case they are up and about during the night and to help them if they need to go to the bathroom. Care home options can be expensive and cause a lot of upheaval, particularly if the dementia patient has a strong connection with their home, if it is a family home that has been a significant part of their life. 

As a family member, you may feel happier that they are able to be cared for in their own home or it may become a necessity if the dementia patient lives in an area not well serviced by care homes. There are live in care options that can provide the required around the clock care. It helps the dementia patient not to feel lonely or isolated, and they can become close friends with their live-in support. This also helps to support their mood and self esteem if they are happier in themselves and confident in their surroundings.

If you make the decision to opt for a care home, then this will give them access to 24 hour care, should they need it at any point, although they will have to share that care support with other people. Care homes can sometimes be noisier than living in their own home, but they will have the opportunity for social interaction also. We cover care homes in more detail in our article here.

Summary

Dementia impacts patients in different ways and their rate of decline varies, dependent on other factors such as overall health and dementia diagnosis. At all times, try and think how it may feel to be facing the challenges that they are and engage in some of the calming methods should they be having a difficult day. What is important is that the dementia patient is happy and in the best environment for them, to keep them as comfortable and secure as possible during the last stages of dementia.