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STAR Training | courses.stratraining.eu | Module 2 | Living with Dementia 1

What is Dementia?

Welcome to the module ‘Living With Dementia’. Here you will find materials to

help you to understand:

The person with dementia as a unique individual;

The importance of knowing their background and life history;

Abilities people with dementia retain in spite of the difficulties

they face;

How dementia impacts on families, friends and community and

the support that is needed.

After finishing this module you will have:

Knowledge of, and awareness on dementia;

Understanding of the behaviour of people with dementia;

Knowledge on person centred care.


1. The person with dementia as a unique individual

Even though a person has dementia, they are still a valuable and unique

individual. They deserve to be treated with respect and consideration. In general,

we show respect and consideration for an individual by behaviour like this:

affectionate, in a way that the person feels comfortable with.

attentive, taking time to listen to the persons thoughts, fears and desires

and to respond

flexible, adapting our behaviour to the other’s needs and desires on the

day

We should bring all of these general patterns of behaviour to our relationship

with the person with dementia. But in addition, many people with dementia have

a fragile sense of self-worth; it's especially important that people continue to

treat them with courtesy, however advanced their dementia.


A person with dementia is experiencing the loss of some important skills and

capacities. They may feel fearful and vulnerable; they may feel worthless and sad.

For these reasons, they may need extra reassurance from the people around

them.

Relatives, friends and carers can help to maintain the person’s sense of identity

and self-worth by the way they behave towards them. Here are some practical

tips from the Alzheimer’s Society, UK:

Be kind and reassuring to the person you're caring for without talking down

to them.

Never talk over their head as if they are not there - especially if you're

talking about them. Include them in conversations.

Avoid scolding or criticising them.

Look for the meaning behind their words, even if they don't seem to be

making much sense. Whatever the detail of what they are saying, the

person is usually trying to communicate how they feel.

Try to imagine how you would like to be spoken to if you were in their

position.

Think about how they would prefer to be addressed: some people may

prefer to be addressed more formally (as Mr X , Mrs Y, Professor Z) unless

they know you very well; others may feel you are being ‘cold’ if you use a

formal title rather than a first name or nickname.

How does it feel to have dementia?

Please watch and listen to one man's story.

What are the challenges of caring for someone with dementia?

Please watch and listen to Ken and Joan's story.

http://dementia.uow.edu.au/understandingdementiacare/video/Alzheimer_vid.html

http://dementia.uow.edu.au/understandingdementiacare/video/Journey_vid.html


2. The importance of knowing the background and life history

In order to care for somebody, we need to understand something of the things that are important for them and what makes them who they are. This means we need to know something about their background. For people with dementia, this might be especially important because:

they may lack the capacity to tell us about it themselves; but we may need to know, for example what is religiously or culturally important to them; which are their most precious possessions; or who they want close to them.

as they lose adaptability to new experiences and more recent memories, ingrained patterns and early memories may become an important source of security and comfort.

some puzzling or challenging behaviour may make sense from a life-history perspective., For example, somebody who spent their teenage years in the army may revert to ‘army discipline’.

For these reasons, it is becoming common practice to compile a ‘memory box’

and/or journal with the person with dementia, which gathers together and

explains those things which they find important to them. For a short explanation,

see the video here.

http://nhslocal.nhs.uk/story/features/explanation-memory-box-dementia-project


3. Abilities people with dementia retain in spite of the difficulties they

face

When somebody close to us has dementia, we may naturally want to help them

out by organising their life, taking responsibility for them and giving them as little

worry as possible. But this can be an aspect of what Tom Kitwood has named

‘malignant social psychology’: by treating somebody like an invalid, we can leave

them feeling powerless, frustrated, passive and lacking in confidence. This can

make their symptoms worse.

John Zeisel lists 4 sorts of memory that are ‘compromised’ in people with

Alzheimer’s, but 14 other sorts which remain intact until late in the disease. By

working with the abilities somebody has, rather than stressing the abilities they

have lost, it is often possible to maintain your relationship with them, as well as

their wellbeing and confidence.

See a short video of John Zeisel’s work here.

http://www.youtube.com/watch?v=6CElu6lRt84&noredirect=1


The Alzheimer’s Society offers some useful tips for how to work with somebody

with dementia so that they make best use of the abilities they still have:

Try breaking the task down into sections. For example, the person may find it

easier to continue dressing themselves if you put the clothes out for them in the

order that they need to put them on. Or you could pass the next garment to the

person, holding it out ready for them to grasp at the right place, or encourage

them to put their vest on over their head before you straighten it down for them.

Even if the person can't complete a full task, carrying out one or two steps of it -

particularly the final step - can give them a sense of achievement.

Make sure that any reminders or instructions are simple. Use short sentences,

with gestures and body language to add meaning.

Be tactful. Try to imagine that you are the person receiving help, and speak in a

way that you would find helpful if you were in their position.

Try doing things together, such as folding clothes or drying dishes.

Try integrating opportunities to do things into the daily routine.

Make sure that the person doesn't feel that they are being supervised or criticised

in any way. This means checking your tone of voice as well as the words that you

use.

When the dementia is at a more advanced stage, try pointing, demonstrating, or

guiding an action rather than giving a verbal explanation. For example, the

person may be able to brush their own hair if you hand them the brush and start

by gently guiding their hand. Use your voice to make reassuring and encouraging

sounds rather than using actual words.


4. How dementia impacts on families, friends and community and

support that is needed

If you are caring for someone with dementia, be prepared for the fact that you will need support at some point. As a carer, you can become quite isolated, for several reasons:

You may feel embarrassed to be seen with the person you care for,

particularly if their behaviour has become different, or

challenging.

You may be too tired to socialise; or you may be unable to leave

the person you care for unattended.

You may want to spare family members from the physical and

emotional demands of becoming involved with caring for a person

with dementia

You may not know where to turn for sources of support.

You will probably need a lot of different types of help and support, ranging from practical care to give you time off caring, to having someone to talk to about your feelings and concerns. Think about what help you might need, and where you can get it, before you actually need it. That way, when the time comes, you'll know where to turn.


We will be covering this topic in much more detail in module 7, but here are some basic tips for the present:

It is important that you look after yourself. Caring can be hard

work, and you need to be healthy and happy if you are to manage

it.

Be very clear about the support you need: from friends, family,

medical and social services. Nobody can be expected to care for a

person with dementia on their own without support, however

much they love them. Furthermore, welfare services are starting

to realise how much money and effort people like you are saving

them! Do not be afraid to ask them for the support you need to

continue in your caring role.

Seek out and develop links with understanding professionals, such

as GPs or counsellors;

Discover and join local support groups where you can chat to

others who have had similar experiences and who really

understand what it's like.

Make use of online resources such as this course, and the websites of the major dementia societies. Discussion forums can be a particularly useful place to exchange information, get support at all hours of the day and night, pick up practical tips and just talk to people who know what it’s like!


Game

Build a ‘memory box’ of your own that includes the elements you would want others to know about you.

Exercise

Based on Zeisel’s lists, sort the following memory-abilities in two columns:

Memory-abilities that people often lose

in dementia

usually retain

in dementia

(1) How to find the way to the shop

(2) How to set the table

(3) How to perceive colours and textures

(4) Recent facts (e.g. the present leader of the country)

(5) How to get dressed properly

(6) Key events from childhood

(7) What was just said in a conversation

(8) How to cook a complex meal

(9) What a bird sounds like

(10) Times of sadness and joy

(11) How to behave at formal events

(12) How to dance

Oft

en lo

st: 1

, 4, 5

, 7, 8

; usu

ally

ret

ain

ed: 2

, 3, 6

, 9, 1

0, 1

1, 1

2


How did you get on?

Here are some questions you can use (if you wish) to test your own knowledge of

the content of this module.

True False

1. If a person with dementia is not behaving properly, they should be told off

2. Even if the person with dementia seems rude, it is important to treat them with courtesy and consideration

3. Some behaviour that seems strange or challenging may make better sense when we understand somebody’s background and training

4. People with dementia are like children, and should be spoken to like children

5. Although dementia affects some aspects of a person’s memory, there are other forms of memory that they may retain for a long period of time

6. The carer of a person with dementia also needs to look after themselves properly, because caring can be difficult and demanding

7. Every person is different, and so every person with dementia is different. Each one has unique needs and abilities

8. When a person has dementia, the best way to help them is to do everything for them

9. A person with dementia may need extra reassurance, because their symptoms my make them feel worthless and afraid

10. If the person cannot complete a task, they should not be allowed to start it

Test key: 1 – F; 2 – T; 3 – T; 4 – F; 5 – T; 6 – T; 7 – T; 8 – F; 9 – T; 10 – F.


References

Alzheimer’s Society (n.d.), Understanding and respecting the person with dementia,

obtainable from

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=84

Alzheimer’s Society UK (2010) Maintaining Everyday Skills factsheet. Obtainable from


Alzheimers Society UK (2012) Carers: looking after yourself factsheet. Obtainable from


Kitwood, T. (1997) Dementia Reconsidered: the person comes first Maidenhead: Open

University

NSW/ACT Dementia Study Training Centre (n.d) What is Dementia? Obtainable from

http://dementia.uow.edu.au/understandingdementiacare/module1/impact.html

Zeisel, J (2010) I’m Still Here: a breakthrough approach to understand someone living

with Alzheimer’s London: Piatkus




http://dementia.uow.edu.au/understandingdementiacare/module1/impact.html

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