Activity in the later stages of dementia

Do activities matter for a person in the later stages of dementia?

It can be easy to assume that when a person is no longer communicating with words or is spending much of their day in bed, the emphasis will be on keeping the person physically comfortable and activities become less relevant. However, a person in the advanced stages of dementia can still experience emotions such as loneliness, boredom or frustration.

A person might no longer be able to move independently or hold a conversation. However, many people with dementia will respond positively to close one-to-one attention using the eyes to communicate or hands to touch and make a connection.

Nearly all the external things, the ones we take for granted and which the world values, may be swept away, but the real Malcolm, the essence he was born with, was there right to the end.

Barbara Pointon cared for her husband Malcolm, who had dementia

For more on these ideas, you might like to look at the feature on ‘Communication in the later stages’ in the section on Communicating well.

Just be with the person

If you are comfortable ‘just being’ with the person, you may choose to simply sit and spend time with the person, and respond to anything that they might be doing or noises they might be making.

Sometimes there will be lovely moments when the person’s facial expressions – sparkling eyes, a smile or a grip of the hand – will indicate that the person is noticing and responding to our attempts to reach out to them. However, there will be other times when the person doesn’t open their eyes or even appears to turn their head or body away from us, which can make us wonder whether we are getting through to the person. It is important to continue to relate to the person as if they are still able to understand what you are saying.

Barbara Pointon cared for her husband Malcolm, who had dementia, right until his death. She says Malcolm had a very expressionless and stoney face in the very late stages of his illness. She believes that he had lost his ability to synchronise his facial muscles to smile (interestingly it takes babies several weeks to learn this as we are not born with it). As a result care staff and visitors thought their efforts were having no effect. Barbara had to remind them that, although Malcolm could no longer outwardly express pleasure, they had no way of telling what his feelings were inside. As she said, ‘We must always trust that feelings are still there.’

Learning to give full attention

Care staff will need to allow themselves the time to sit beside a person and to be as fully present as they can. It is all too easy to be distracted, to be thinking about the next job that needs to be done and not to be focused fully on the ‘here and now’ relationship. One volunteer visitor in a care home said the most important thing she offered was sitting down with residents, ‘showing that she is here to stay rather than just hovering to get away’.

Many people with dementia will sense when we are not fully present and are less likely to connect with us in any meaningful way if this is the case. If we are not paying full attention we might also miss simple movements or sounds from the person attempting to communicate something.

If you are going to sit with a person with dementia for longer than a few moments, consider the following: Your colleagues will need to know that you going to spend say 10 to 15 minutes in the person’s room and should not be called away to another resident or task. You may want to take a book to read out to the person or a piece of music to play or perhaps something that you can do in front of the person such as folding towels. Make sure you are in the eye line of the person if they are lying in bed or staring in a particular direction.

What activities work for people with advanced dementia? Some practical suggestions

Sarah Zoutwelle-Morris is a visual artist living in Holland. She describes a range of different practical activities which might hold the interest or attention of a person in the later stages of dementia:

(These ideas appeared in an article by Sarah Zoutwelle-Morris in the Journal of Dementia Care, 2010.)

Music

Music can be a vital tool in working with people with limited verbal communication. Musical memories seem well stored for many people with dementia and individuals can come to life on hearing a particular favourite song or a dance. For any person who spends large amounts of time in their own room, a good investment will be a CD player and a collection of music which relates to their background and interests.

Care staff should speak with relatives or close friends to find out whether the person loves Mozart, Elvis Presley, Scottish ballads or Bollywood music. A key worker will also need to know the times of day that a person might respond particularly well to music (for more on this see the feature on Creative arts in this section).

Dolls

Many people with dementia will respond very positively to toys or objects that they can cuddle or grasp. From a psychological perspective these can be seen to provide an attachment object or a focus for security and comfort for an individual who is feeling vulnerable in a strange and frightening world. Dolls or cuddly toys will not appeal to everyone, but they should be available to offer all older people who are in the moderate to later stages of dementia in order that you can observe how the individual responds (for more on this, see the feature Activity resources and approaches in this section).

Ideas for how to stimulate the senses

A multisensory approach becomes even more important with people with limited verbal communication. Bright colours, playful movements, funny sounds and tactile objects can all catch the attention of an individual in a way that more complicated activities no longer can.

Barbara Pointon gives some specific examples of how she tapped into all the senses in caring for her husband Malcolm:

Some creative work has been tried in relation to applying the ideas of ‘coma work’ (an approach to working with people in withdrawn states, such as a coma) to working with people with dementia. This approach was developed in the United States in the 1980s by Arnold and Amy Mindell.

Anna Lidzey (2004), an English art therapist, describes the aim of coma work as ‘to provide a loving sense of companionship and to allow the creative spirit to unravel, to trust, follow and honour each person’s unique journey’ (p 20).

This approach requires the care worker to pay particular attention to the non-verbal aspects of a person’s communication: their breathing, their eye movement, any changes in the skin, vocalisations such as repeated noises and the general atmosphere and mood surrounding the person. The key feature of the approach is that the worker should watch for signs of any kind of activity from the person with dementia and be led by these rather than taking over and dominating the communication themselves.

Coma work: an example

Rosemary Clarke attended a course on coma work and found it to have amazing benefits in her caring role with her mother. In an article for the Journal of Dementia Care, Rosemary describes how she learnt to sit very close to her mother so she could talk into her ear. She would pay attention to what her mother might be doing, for example, she would be chewing or moving one finger a tiny bit or sighing. She would then focus on one of these activities and support her mother to ‘go with’ that impulse, ‘to give it its fullest expression’. She would therefore encourage her chewing with ‘that’s good, you really chew it’ or ‘that’s fine, you chew it over’.

Sometimes Rosemary would respond to her mother’s moving finger by having a finger ‘dance’ with her own index finger, ‘talking’ to each other through applying pressure from the finger – whether slow and soft or firm and persistent. All the time Rosemary would be giving verbal encouragement ‘What an energetic/busy/strong finger!’, ‘This is lovely, our fingers are talking.’

As a result of this approach, Rosemary describes how her mother started to ‘speak’ more often than she had before, sometimes with words and sometimes with sounds. On one occasion, even before Rosemary had sat down beside her, she looked up and said ‘hello darling’ (see Clarke 2004).

Support for staff doing this difficult work

Being with people in the advanced stages of dementia is personally challenging and you will need support. Managers need to give time to their teams to discuss these difficult encounters but most importantly still to praise the effort and encourage the member of staff to try again – in a different moment, the person with dementia might respond very differently.

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