Understanding Learning Disability and Dementia

Developing Effective Interventions

Diana Kerr

• Publisher: Jessica Kingsley Publishers
• Year: 2007
• ISBN:
  9781846426759
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

Understanding Learning Disability and Dementia covers all the essential issues in supporting a person with a learning disability when they develop dementia.

Like the population at large, people with learning disabilities are living longer, and therefore an increasing number are developing dementia. Service providers, planners, doctors, social workers, carers and direct support staff need to be equipped with relevant knowledge prior to the onset of dementia, so that they can devise appropriate therapeutic interventions and coping strategies, including health and medication management and palliative care.

This book will provide essential knowledge for anyone involved in the provision of services, assessment of need and direct care and support for dementia sufferers who also have a learning disability.

1

What is a Learning Disability?

In this book the term ‘learning disability’ will be used to describe the group of people who are its subjects. However, it should be noted that both nationally and internationally there is not one agreed term to describe this grouping. People in the UK use terms such as ‘learning disability’ or ‘learning difficulty’ and previously used the term ‘mentally handicapped’. In the USA the term ‘mental retardation’ has been used until very recently. A newer term of ‘intellectual disability’ is gaining popularity in both North America and Europe. Most people, however, recognise the need for an appropriate and meaningful description of people who may need specialised services or other support because of a significant intellectual deficit or disability.

It is not within the remit of this book to catalogue the various syndromes and types of learning disability. This chapter provides some basic information to people who do not generally work with people with a learning disability.

The group of people being described under the term ‘learning disability’ will have a significant lifelong condition, which has three facets:

•reduced ability to understand new or complex information or to use new skills

•reduced ability to cope independently

•a condition that started before adulthood (before the age of 18 years) with a lasting effect on the individual’s development (Scottish Executive 2000).

Sometimes the severity of the person’s learning disability is also recorded in terms of IQ (intelligent quotient). The broad categories are as follows:

•mild learning disability	IQ 70–50
•moderate learning disability	IQ 50–35
•severe learning disability	IQ 35–20
•profound learning disability	IQ less than 20.

About 66 per cent of the general population have an IQ of 85–115. About 1.5 million people in the UK have a learning disability of some sort. Every week 200 babies are born with a learning disability (Mencap 2006).

The number of people with a learning disability is expanding. In the 35-year period from 1960 to 1995 there was a 53 per cent increase that represented an annual increase of 1.2 per cent (McGrother et al. 2001). This increase is substantially the result of improvements in socio-economic conditions and improvements in neonatal care resulting in improved survival rates. A further increase between 1995 and 2008 of 11 per cent is predicted, the consequence of increased longevity of people with a learning disability (McGrother et al. 2001). People with a learning disability from causes other than Down’s syndrome would be expected to have a similar life span to members of the general population. People with Down’s syndrome would have a shorter expectancy but still often live into their late sixties and early seventies. It is also important to note that increased survival rates and subsequent longevity has led to an increase in people at all ages with severe levels of disability.

The term ‘learning disability’ covers a wide range of conditions. These have highly varied presentations and widely different consequences for the people who have them. The impact of the learning disability on people will be highly varied. No two people will experience their disability in the same way. People with a learning disability are individuals with highly varied abilities and personalities. Like people without a disability they are the product of their life experience, history and cultural expectations as well as their genetic inheritance.

People with a learning disability will often have difficulty with communication; but they do want to communicate. They will often look different in some way; this can be unnerving for some people. It is important to look beyond the physical differences and see the person that is there. What is important is that, no matter what the disability, the person has the same needs and rights as a non-disabled person.

There are many different causes of learning disability. Events before, during and after birth can all be responsible.

•Before birth

damage to the central nervous system

mother has an illness or a physical accident during pregnancy

genetic inheritance

•During birth

insufficient oxygen during the birth or premature birth

•After birth

early childhood illnesses or physical accidents.

Inherited causes of learning disability

The most common inherited causes of learning disability are Fragile X syndrome and Down’s syndrome. Because people with Down’s syndrome will have a higher prevalence of dementia than people with any other type of learning disability and it is the most common cause of developmental delay, intellectual impairment and learning disability, more attention has been given to this condition.

Down’s syndrome

•Two babies with Down’s syndrome are born every day in the UK. Around one in every thousand babies born will have Down’s syndrome.

•There are 60,000 people in the UK with the condition.

•Although the individual chance of a baby having Down’s syndrome is higher for older mothers, more babies with Down’s syndrome are born to younger women, reflecting the higher birth rate in this group.

•Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. It occurs by chance at conception and is irreversible.

•Down’s syndrome is not a disease. People with Down’s syndrome are not ill and do not ‘suffer’ from the condition.

Down’s syndrome results from the inheritance of a third copy of all or part of chromosome 21. People without Down’s syndrome have two copies of chromosome 21. There are three types of Down’s syndrome: Trisomy 21, Mosaic Down’s syndrome and Translocation Down’s syndrome.

Trisomy 21 is the most common form of the syndrome. It occurs just before or at the point of conception. It happens when chromosome 21 in either the sperm or the egg does not separate properly and then the chromosome is duplicated in every cell of the body. This means that the person has three rather than two copies of chromosome 21. Of people with Down’s syndrome, 95 per cent will have this form of the condition.

Mosaic Down’s syndrome occurs after conception. In this case the duplication of chromosome 21 is present only in some cells. The number of cells that have the duplicated chromosome will determine the extent to which the person is affected by the condition.

Translocation Down’s syndrome occurs as in Trisomy where there are three chromosomes 21 but in this case one of the chromosomes 21 attaches itself to another chromosome and does not separate. This type of Down’s syndrome occurs when one parent carries the gene that is responsible for the condition.

People with Down’s syndrome will have a number of physical characteristics. These are given below. Whilst this is interesting as information about the person’s physical appearance, it does not tell us anything about the person and it is important that we see beyond these characteristics.

The most common physical characteristics are:

•flat back of head

•abundant neck skin

•flat facial appearance

•slanted eyes

•epicanthic folds (a fold of skin of the upper eyelid that partially covers the inner corner of the eye)

•small teeth

•furrowed tongue

•high arched palate

•short broad hands

•curved fifth finger

•four finger crease on the palm

•wide space between the first and second toe

•speckling of the iris

•congenital heart defects

•gastro-intestinal abnormalities

•muscle hypotonia (decreased muscle tone)

•hyperextensibility or hyperflexibility

•cervical spine instability

•shortness of stature.

Some of these will have added significance when people grow older and also if they develop dementia. This is dealt with later in the book.

People with Down’s syndrome will have varying degrees of disability. Some people will be severely disabled and require lots of support and care. Others, perhaps the majority, will experience only minor problems and many, with the right support, will be able...

Table of contents

• Cover Page
• Other Books
• Title Page
• Copyright
• Contents
• Acknowledgements
• Introduction
• 1. What is a Learning Disability?
• 2. What is Dementia?
• 3. Getting a Diagnosis
• 4. Working with Different Realities
• 5. Maintaining Good Communication
• 6. Therapeutic Interventions
• 7. Challenging Behaviour
• 8. Responding to the Pain Needs of People with a Learning Disability and Dementia
• 9. The Experiences and Needs of Peers
• 10. Supporting People to Eat Well
• 11. Creating Supportive Physical Environments
• 12. The Role of Technology
• 13. Late and End Stage Care
• 14. Issues and Concerns for Relatives
• 15. Some Issues in Relation to Medication
• 16. Models of Care
• A Plea for the Future
• References
• Subject Index
• Author Index