Book: Later Stages Symptoms

1. Introduction and Learning Goals

Introduction

People in the later stages of dementia often experience problems. 

This week we will look into some of the common difficulties in Later Stage Dementia. These include:

• memory

• concentration, planning and orientation

• communication

• mobility

• eating and weight loss

• toilet problems and incontinence

• changes in behaviour.

This week we will look into the symptoms and how to manage them in some detail. 

You should expect to spend at least one hour reading through the resources this week. Participation in the forums and attending the online video tutorial will require extra time. 

2. Learning Goals

Learning Goals

By the end of this week you will have a better awareness of symptoms related to later stage dementia care.

3. Memory in later stages

By the time the person reaches the later stages of dementia, they are likely to have significant memory loss and 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 past memories.

The person may no longer be able to recognise themselves or other people such as their partner, friends and family.

The part of the brain that processes our emotions (Amygdale) is healthy far into the disease. Memories can be retrieved by reconstructing the emotion attached to the memory; focusing less on the cognitive part and more on the emotions; talk of past jobs, children, life’s events, looking at photos, watching sport etc. can help providing meaning to a life. The person won’t be able to draw on his own memory bank of topics so be prepared to start the conversations.

Enabling the person with dementia to be present in his or her own memories and emotions is our aim.

4. Communication

Is it possible to communicate with a person with advanced dementia who may not be able to talk and appears unresponsive? When you first meet someone with no language and apparently little of their personality remaining, it is easy to believe that it is not.

But there is clear evidence, through the use of sounds, sight, tastes, hugs, touch, warmth, odours (by using all the senses) people living with advanced dementia do not lose the ability to communicate. And we, as carers can communicate with people in all stages of dementia.

Even though they can’t talk you can tell. Their eyes are fixed on you and they’ll smile or they’ll be far more relaxed when you’re doing something.

4.1. Keep Communicating

We need to recognise that we are caring for someone who has a long life behind them and many stored memories and experiences. If we can find a bridge into these memories we can find a way to communicate with them and nurture their spirit at this final stage of life.

We believe we can communicate with the person with dementia until the end. Never assume that the person cannot hear or understand you. Try reminiscing about their past, talk to them about things of interest (for example, how the family are and what the grandchildren are doing). Pick up on a hobby or interest they may have had (if they enjoyed horse racing, talk about the races that day, the form of the horses, the odds and the jockeys involved).

Non-verbal communication is vital. Touch can be used to stimulate senses and provide reassurance. Try to achieve eye contact. Be aware of the tone of your voice. Remember that the expression on your face will convey more than the content of your words.

4.2. Making connections

When a person is at the end stage of dementia it may appear that they have completely withdrawn from our world and communication is difficult. At this stage it is worth considering alternative forms of stimulation to make a connection.

Smell: The sense of smell is very powerful. Scents and smells can create a link and bring back reassuring memories of times gone by (for example, the aroma of baked bread or flowers). Having these close by can produce a reaction and a connection.

Touch: Holding hands, stroking a person’s face or arms, or brushing their hair can be soothing and be pivotal in making a connection. A woman may like the feel of a silk scarf on her neck. Men might like a wet shave.

Vision:  A family photograph or a picture of a favourite view can produce a reaction. Detailed notes written on the back of photos can help Carers prompt memories.

Music: Playing or humming favourite tunes can bring back happy memories. Music can lead to finger or foot tapping, a smile, perhaps a tear. Poetry, prayers and sayings/proverbs may also produce interaction.

Singing: Often people with dementia who stopped speaking a long time ago can sing along to a familiar tune, remembering the words.

Dancing and movement: Depending on their mobility, the person with dementia may connect through dancing. Perhaps they will get up and move around or put their arms in a familiar dance hold or move their feet to the rhythm of the music.

Art: Connections can be made through art by the simple sensory act of holding a brush or pencil and scribbling, painting or drawing on paper.

 (If you are interested in more details, read Creative arts in the Keeping active and occupied section on the web site of Social Care Institute for Excellence)

5. Mobility Symptoms

Dementia is likely to have a big physical impact on the person in the later stages of the condition. People in later stage dementia 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 the dementia itself, or by medications, other medical conditions (for example stroke), sight loss, balance problems and the environment. However, not all people will have problems with mobility.

Many people with dementia (especially in the later stages) 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.

5.1. Supporting mobility

The person should be supported and encouraged to move around as much as they are able, for example through support to walk or chair-based exercises.

Ask for advice on the best ways to support the person to move without injuring themselves. Speak to a GP, or public health nurse (PHN) , occupational therapist (OT) or physiotherapist for more advice. 

An occupational therapist (OT) can give advice about equipment and adaptations to help with mobility. 

For information on accessing OT equipment and adaptations for the home in Ireland please click here..

Click here to learn more about Occupational Therapy.

Read more about equipment and adaptations to the home (please note that this is a link to a UK website).

5.2. Dementia and the use of hoists

If mobility becomes very difficult for the person  with dementia, they may be no longer able to bear weight on their legs. If this occurs, they may need a hoist to assist with transferring. The public health nurse may arrange a review by an occupational therapist and if suitable a hoist may be provided in the home to allow the safe transfer of the person with dementia.

It is important that this is done in advance if possible, therefore, early contact with the public health nurse and occupational therapist around difficulties with mobility is essential.

6. Eating and drinking

The person 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

• Sharing a meal, spending time eating and drinking with the person can help. Mimicking can happen, during a shared meal, I take a sip and the person takes a sip.

• 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 (SALT).

Eating and drinking can bring the person pleasure. It’s important to support people with dementia to eat and drink things that they enjoy. Many people’s tastes will change as they get older and as dementia progresses (for example, they might start to prefer sweet food).

Think about the person’s oral health as this will have an impact on their ability to eat and communicate (as well as helping with their general health and well-being). If the person has poor oral health it may lead to pain, which could mean they don’t want to eat or they behave in ways that are out of character.

Have you any experience of finding good solutions to eating and drinking issues?

Feel free to share these on our Forum: Unit 2 Discussion.

6.1. Swallowing problems

As dementia progresses it may affect the area of the brain that controls swallowing. In later stage dementia the person may have a weak swallow or lose the ability to swallow safely, for example they may cough or choke after swallowing food or drinks.

Swallowing problems can also be caused by general weakness and frailty of the person, that is, their swallowing muscles become very weak.

Other problems – such as having a sore mouth or sensitive teeth – can cause a person to take in less food or develop swallowing problems. 

Signs of swallowing difficulties are coughing when/after eating, holding food in the mouth, excessive clearing of the throat or recurrent chest infections, and or excessive spitting. You should bring these issues to the attention of your doctor, public health nurse or speech and language therapist as soon as possible.

For more information on swallow difficulties (dysphasia) for the person with dementia please watch the following video (3mins) 

7. Toileting and incontinence

Having dementia doesn’t mean a person will definitely become incontinent.

7.1. Prompted toileting

Prompting someone to use the toilet may be helpful. It involves asking, prompting , guiding someone to use the toilet on a regular basis.

8. Personal Care

For most adults, washing is a personal and private activity. As dementia progresses the person with dementia may need reminders or help to wash. Sometimes the person with dementia may be reluctant to wash and you will need to find ways to encourage them which do not cause distress. It is important to respect the person’s dignity at all times.

If you are finding it difficult to persuade the person to wash or if they need more assistance than you can give, contact the public health nurse, who may be able to advise or to arrange help. You can contact the public health nurse through your local health centre.

Tips for assisting with personal care:

• Encourage independence

• Encourage the person to wash themselves for as long as possible.

• Continue with familiar washing routines established before they developed dementia e.g. a morning shower or a weekly bath with a stand up wash on days in between

• Try reminding them of the next step, tactfully indicating the part to be washed or they might like to have some assistance from you like handing them the soap or towel.

More information on personal care is available from The Alzheimer Society of Ireland's website.

8.1. Dressing, Washing and Bathing

General tips for dressing, washing and bathing:

• Make sure everything is in place before you start

• Use the opportunity to communicate and, if necessary, to explain what you are doing

• Give enough time for dressing, take it slow. This can make the experience far more comfortable and relaxing for everyone involved. Rushing a person through the steps can cause distress and anxiety.  
  

  Help the person stay comfortable, making sure the room is warm enough

• Ensure that there is enough light

• A suitable chair with arms, may be helpful if the person has poor balance

• Think about privacy - make sure that blinds or curtains are closed and that no one will walk in and disturb the person while they are dressing

• Be aware of toilet needs before getting dressed
  

• Try to keep to a routine - for example, they may usually put on all their underwear and socks before putting on anything else.
  

• Several thin layers of clothing can be helpful. Particularly in cold weather, rather than one thick layer, as they can then remove a layer if it gets too warm, as  the person with dementia may no longer be able to tell you if they are too hot or cold, so keep an eye out for signs of discomfort.

• Change clothes regularly  

9. Changes in behaviour

As we already know, as dementia progresses symptoms may change. A change in behaviour is closely linked with a communication need. For us Carers, it is important to try to find the meaning behind the behaviour? What is he/ she trying to say?

Watch Una's short video below in which she talks about changes in behaviour while dressing.

9.1. Possible behavioural changes

Changes in behaviour can be one of the most difficult aspects of living with dementia, both for the person with the condition and those around them.

It’s important to see beyond the behaviour itself and think about what may be causing it. There may be specific reasons why the person with dementia is behaving differently, such as:

• difficulties relating to dementia (such as memory loss, language or orientation problems)

• Distress or agitation – this may be because the person is confused about where they are, who they are with or what they are meant to be doing. They may be in pain or feel threatened, they may not understand what is going on (for example, if a carer tries to change their clothes without explaining why) or because of frustration brought about by not being able to communicate a need.

• Sundowning – some people may become more agitated and confused in the late afternoon and early evening. There are a number of theories as to what can cause this predicable pattern;  it may be caused by a range of factors including disturbance to the body clock, too much or too little sleep, or medication. It may help to give the person something meaningful to do at this time of day and make sure the environment is suitable (more peaceful and less light). Going outside during the day (if possible) can help.

• Repetition – the person may repeat certain behaviours (for example, carrying out the same activity or making the same gesture over and over). This may be because they feel anxious or want comfort.
  

• Hallucinations and delusions – some people with dementia experience hallucinations, in which they see, hear, smell, taste or feel things that are not really there. Others may develop delusions, where they strongly believe things that aren’t based on reality but feel real to them (for example, they may be convinced that someone is stealing from them). Talking calmly to the person, offering reassurance and meaningful activity (such as going for a walk or doing something around the house) can help. If you think the person is experiencing hallucinations or delusions and its upsetting them you should speak to a GP.

• Restlessness – This could be for a range of reasons such as pain or discomfort, needing the toilet, a need for more physical activity or problems with their environment (for example if they are just sitting in the same place with no stimulation for much of the day).

9.2. Considerations when behaviours have changed

As we have seen, the reasons for changes in behaviour may not always be clear. They may be due to, or a combination of; difficulties caused by dementia (such as orientation problems), mental and physical health, habits, personality, interactions with others and the environment.

·         If the change of behaviour is very sudden, it may be caused by delirium - this means there is a medical cause for the behaviour change e.g. infection, dehydration, severe constipation. If this might be a possibility then immediate medical care is important to prevent severe complications.

·         Consider the environment:  too much activity, loud noises, any noise. Would they like peace and quiet time? Is it too hot, cold or too bright? Is the smell off putting? Do they know where they are? Is this place familiar?

·         Ensure that any glasses or hearing aids are clean and functioning properly. Arrange regular sight and hearing checks.

·         Consider whether they may be bored or in need of stimulation. Engage the person in meaningful activities. Gentle activities such as a hand massage, listening to their favourite music or stroking a soft piece of fabric may help. Stay and be with the person, they may need to ‘chat ‘ to someone

·         Make sure the person is comfortable – for example not in pain, too hot, cold, hungry, thirsty, or needing the toilet. Check whether the person’s medication is appropriate or whether they might be ill or in pain. A visit to the GP to rule out any physical problems is a good idea.

Try and understand what may be causing the person’s behaviour. Keep a diary. Finding a trigger might help find a solution.

If you cannot find a solution, speak to your GP or Public Health Nurse. The person with dementia may need a review of medications or assessment by the Consultant Psychiatrist of Later Life.

10. Case Study Exercise

It is two years later and Tony is now 76 and has been living with Alzheimer's for 9 years. Tony is in late stage dementia, his communication is poor and he has physically declined in the last number of months.

Tony has been in hospital for the last two weeks being treated for a chest infection. While in hospital his mobility has deteriorated a lot. He was seen yesterday by a physiotherapist. He walked a few steps and the Doctors are now saying he is ready to be discharged home. Tony's wife Maura provides all of his care needs and is anxious about taking him home.

Consider the following questions:

1. What questions should Maura ask in relation to Tony’s care once he leaves hospital?
2. How can Maura prepare for taking Tony home?

Post your answers and thoughts on these questions to our Unit 2 Case Study Forum.