Supporting a loved one with Late Stage Dementia

1. The progression of dementia

Dementia is a progressive condition. This means it will get worse over time due to the damage to the loved one’s brain, and this will have a big impact on their mental abilities, including memory and communication.

It is important to remember, the speed at which dementia worsens varies widely.

2. Symptoms in the later stages

The loved one’s reactions are likely to be influenced by their environment and how they feel. For example, they may react more positively if they are in a familiar environment or one where they feel comfortable.

Loved one’s in the later stages of dementia often experience problems with the following:

• memory
• concentration, planning and orientation
• communication
• mobility
• eating and weight loss
• toilet problems and incontinence
• changes in behaviour

3. Memory in the later stages

By the time someone reaches the later stages of dementia, they are likely to have significant cognitive difficulties. Recent memories may be lost completely (for example, what they had for breakfast or when they last saw a friend) and they may only remember parts of memories.

Even if the loved one with dementia is not able to place someone, they are still likely to experience feelings they associate with that person. Keeping in touch with the people they know where possible will help them to continue to have these positive feelings and enjoy their company.

4. Concentration, planning and organisation

Your loved one may also develop increasing difficulties with other mental abilities. They may only be able to carry out simple activities or not be able to concentrate for too long. However, they may still get enjoyment from past hobbies, interests, and activities. Find opportunities to make these meaningful. This could be doing anything that the person benefits from whether this is enjoyment, fulfilment, or comfort.

5. Mobility

They may gradually lose their ability to walk, stand or get themselves up from the chair or bed. They may also be more likely to fall. These problems can be caused by dementia, medication, other medical conditions (for example stroke), sight loss, balance problems and the environment. However, not all people will have problems with mobility.

Many people find themselves staying in one position for a long time (such as sitting in a chair) and not moving around much. This means they are at risk of pressure ulcers (bedsores). They can be easy to prevent early on, but if they go unnoticed, they can get worse and become painful and infected.

6. Communication

Tips for communicating during the later stages of dementia:

• keep eye contact when communicating
• non-verbal communication (such as gestures, facial expression, and body language) can help
• smile
• use appropriate physical contact (such as holding hands) to let the person know you are there and offer reassurance
• don’t rush – allow plenty of time and look for non-verbal clues from the person
• even if you don’t think the person can follow what you’re saying, continue talking to them. They may still feel a certain way even if they do not fully understand what you’re saying
• consider responding to them in the way they respond to you (‘mirroring’ them)

7. Eating and weight loss

Many people with dementia lose weight in the later stages. Weight loss can affect the immune system and make it harder for the person to fight infections and other illnesses. It can also increase the risk of falling and make it harder for the person to remain independent.

Your loved one should be supported to eat and drink for as long as they show an interest and can do so safely (even if they just take a mouthful or a sip). There are ways to help make this easier for the person. For example:

• choosing a plate that is a different colour to the food (so they can see it more clearly)
• giving the person enough time
• putting the drink in their hand if they are struggling to see it
• changing the consistency of food and drinks (for example serving it in liquid or puree form). Only do this following advice from a professional such as a dietitian or speech and language therapist.

8. Toilet problems and continence

Having dementia doesn’t mean your loved one will become incontinent, but there are several reasons why they could be or have problems using the toilet. These include various medical conditions, many of which can be treated. Possible causes include:

• urinary tract infection (UTI)
• severe constipation
• side effects of medication
• prostate gland trouble
• forgetting to go to the toilet or forgetting where the toilet is
• not recognising the need to go to the toilet

9. Changes in behaviour

Changes in behaviour may include:

• Distress or agitation
• Sundowning (more agitated in the late afternoon/evening)
• Aggression
• Repetition
• Hallucinations and delusions
• Restlessness

Ways to manage changes in behaviour

• Ensure that any glasses or hearing aids are clean and functioning properly. Arrange regular sight and hearing checks.
• Check whether their medication is appropriate or whether they might be ill or in pain
• Check that they are not being disturbed by too many people, too much activity, loud noises, sudden movements, or an uncomfortable environment (for example, one that is too hot or too bright).
• Consider whether they may be bored or in need of stimulation. Engage them in meaningful activities. Gentle activities such as a hand massage, listening to their favourite music or stroking a soft piece of fabric may help.
• Make sure they are comfortable – for example not in pain, too hot, cold, hungry, thirsty, or needing the toilet.

10. Illness and discomfort

If the person with dementia is unwell and there is a sudden change in their mental abilities or behaviour that lasts several hours, it is often a sign they have delirium. Symptoms of delirium include:

• not paying attention or concentrating
• confused and muddled thinking
• disturbed language (for example, speech that doesn’t make sense)
• change in consciousness (for example, feeling drowsy or much more alert)
• change in the person’s sleep/wake cycle
• hallucinations and delusions.

11. Pain

Your loved one still feels pain in the later stages of dementia even though they may not be able to verbally communicate it. They may be unable to tell you that they are in pain, and as a result, they may start to behave in unusual ways. It’s important to consider pain as a cause and make sure that it is properly managed.

12. Treatment and care

If your loved one with dementia has made their wishes known regarding care in their later stages, you can support them and help them to meet these plans. These may consist of various things.

At Cavendish Homecare, we can help support you and your loved ones with our expertise in delivering Dementia Homecare. We know that being diagnosed with Dementia can have a huge emotional, social, and psychological effect on both the person suffering and their family. Therefore, we ensure specialist care in the comfort of one’s own home.

To find out more about how best we can help you in the days and weeks ahead please call us on 0203 008 5210 or email info@cavendishhomecare.com.