Dementia
How to read the stories

Dementia

It is worrying when someone you know well begins to act strangely, or becomes forgetful or muddled about things. If no one tells you what is wrong, this can be very confusing and can even make you feel cross. It is reassuring to be properly informed about what is happening. The person with dementia will have additional needs which require more attention. It is important that anyone sharing their home does not have their own needs overlooked.

Early signs of dementia

It is important to be aware of these possible signs and symptoms and to act on them:

the person’s behaviour may change
they may seem confused or disorientated
they may develop memory problems
there may be changes in their communication
they may seem more dependent on their senses
they may have marked changes in their mood or personality
they may express pain or discomfort through a change in behaviour
they may seem more susceptible to stress
they may seem preoccupied
their sleep patterns may change
they may be anxious about going out
they may become confused and wander off
there may be a deterioration in their abilities
they may have difficulty in perceiving depth, such as going up a kerb or changing from one surface to another.

If there is any concern, it is important to see a doctor as soon as possible so that the symptoms can be checked out. It is crucial to rule out all other possibilities and to get a clear diagnosis.

How to get a diagnosis

As with everyone else, the first point of contact should be the person’s GP, who will discuss their concerns and decide with the individual and their family the best way to obtain an assessment and diagnosis. The usual referral route is to a memory assessment service or memory clinic. Many people with learning disabilities may already be receiving support from a Community Learning Disability Team or other secondary service, and so this may be where the best expertise is located and therefore the most appropriate service to undertake the assessment. Many community teams have a nurse or other professional who specialises in dementia and who can offer advice at an early stage.

Baseline assessments

It can be difficult to recognise the signs of dementia in anyone and perhaps especially in people with learning disabilities. The first step is to establish how the person is when they do not have dementia or when the first suspicions of dementia have occurred. A specialist health professional can carry out a number of tests to establish a baseline of cognitive and other abilities. This then needs to be reviewed regularly by this professional to check on whether and how things change and, if they do, whether there is any sign of dementia. It is important to do this in order that the earliest signs of dementia can be recognised.

How to read the stories

There is no right or wrong way to read the stories.

Some people are not used to reading stories. Start at the beginning and read the story in each picture. Encourage the reader to move through the pages at their own pace.
Encourage the person to tell the story in their own words. You will discover what they think is happening, what they already know, and how they feel. If you are using the pictures to help explain a procedure to someone, you may need to describe or clarify the actions being shown in each picture to help them understand. Try not to challenge the reader(s) or suggest their ideas are wrong.
Some pictures may be more difficult to understand. It can help to prompt the people you are supporting, for example:
•   Who do you think that is?
•   What is happening?
•   How is he or she feeling?
•   Do you feel like that? Has it happened to you/ your friend/ your family?
Allow people enough time to follow the pictures at their own pace. Allow time for discussion of each picture.
Some people may benefit from reading the larger story from which the extract has been taken. This will allow them to explore their feelings and experiences in more depth. To buy the complete book, follow the link to the bookshop that appears at the end of the story.