REVISTA DE CIENCIAS LETRAS Y ARTES, ATENEO.

Trent Doctorate of Clinical Psychology

Institute of Work Health and Organisations University of Nottingham International House, B Floor Jubilee Campus Wollaton Road Nottingham NG8 1BB

The assessment of dementia severity using non-verbal

cognitive tests

Participant Information Sheet

Dear Sir / Madam,

Thank you for considering taking part in this research. Please read

the information in this letter for details of the research. If you would

like further information please contact the lead researcher on the

contact details at the end of this information.

What is the purpose of the study?

This study is interested in the assessment of older people with

mental health difficulties as a result of dementia. The purpose of this

study is to find alternative methods of assessing people’s difficulties

and needs, when the usual assessment methods cannot be used.

Dementia is an illness most common in people over the age of 65,

but can also affect people under 65. Dementia can cause difficulties

with mental abilities such as memory, attention, concentration, vision

and reading. This can make it harder for people to remember

information and cause them to become confused. It is important for

health care professionals to carry out assessments to find out what

difficulties the individual is experiencing and what treatment could be

helpful for them.

One method of assessing how individual’s memory, attention, vision

and language are working is to use assessments that test the

individual’s mental abilities. However, the most commonly used tests

Lead Researcher:

Sobia Khan

Trainee Clinical Psychologist

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are in English and people need to be able to understand and speak

English to do them. So, if a person cannot speak English or has

difficulty with spoken language it can be difficult to test their mental

abilities. The aims of this research are to examine whether

alternative tests which do not require you to be able to read, write or

speak English can be just as useful.

Why have I been chosen?

You have been chosen because you are over 65 and you can speak

English. You have also been chosen because you may be being

assessed or treated by a mental health professional because you

are experiencing difficulties with mental processes such as memory,

attention and concentration.

Do I have to take part?

No, it is up to you whether or not you take part. If you decide to take

part you will be given this information sheet to keep and be asked to

sign a consent form to show you have agreed to take. You are free

to withdraw at any time and without giving reason. This would not

affect the standard of care you receive.

What will happen to me if I take part?

You will complete some mental ability tests with the lead researcher.

This will take approximately one hour and fifteen minutes. The tests

are similar to puzzles, involving drawing, remembering objects or

carrying out tasks using instructions. We can do these tests at your

own home or you could come to a clinic near you. We would need to

make sure that there were no distractions so you can concentrate

and you have a table that you can lean on to write.

What are the possible disadvantages or risks of taking part?

We do not anticipate that there will be many disadvantages or risks

in taking part in this project. The tests cannot harm you, however,

some people can feel stressed when they are being tested. There is

no need to worry about your performance on the tests. You are not

expected to know all the answers because some of the tests are

designed to get progressively more difficult. We are not asking you

to do the tests to find out if you have an illness and your results on

the tests will not affect the care you are receiving.

If you have any concerns during testing you can talk to the lead

researcher. We would also like to remind you that you have the right

to withdraw from this study at any time and without giving a reason.

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What are the possible benefits of taking part?

The study will not have any direct benefit for you, but the information

we get from this study may be helpful for the investigation into

developing tests for people who have dementia but cannot speak

English.

What will happen to the results of this study?

The lead researcher will write up the results of this study for her

educational course, in the Doctorate in Clinical Psychology. It is also

hoped that this research will also lead to publications. If you would

like, we will give you a short report about how you performed on the

tests. If you wish to receive a summary of the results please contact

the lead researcher named at the end of this information.

Will any additional information be collected?

Information about your age, gender, general health, education level,

occupation, ethnicity and marital status will need to be collected.

This is important when conducting research, as people often want to

know some information about the people that were involved in the

research. If you are unable to provide this information a relative can

do this on your behalf. We would need for you to consent for us to

do this.

What if there is a problem?

If you have a concern about any aspect of this study, you can

discuss this with the lead researcher or with her supervisors. If you

remain unhappy and wish to complain formally, you can do this

through the NHS Complaints Procedure. Details can be obtained

from the hospital. In the event that something does go wrong and

you are harmed during the research and this is due to someones

negligence then you may have grounds for a legal action for

compensation against Nottinghamshire Healthcare Trust but you

may have to pay your legal costs. The normal National Health

Service complaints mechanisms will still be available to you.

Who will have access to information about me?

Only the researchers involved in the running of this study will have

access to your information. With your consent we will send a letter to

your consultant confirming your participation in this study. This is

standard practice for patients who are invited to take part in

research studies.

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Who is organising the research?

The study is being organised by the lead researcher and supervisors

from the University of Nottingham.

Who has reviewed the study?

All research in the NHS is looked at by independent group of people,

called a Research Ethics Committee to protect your safety, rights,

wellbeing and dignity. This study has been reviewed and given

favourable opinion by a Research Ethics Committee in your local

area.

In addition to this, research supervisors based at the University of

Nottingham will monitor the research and provide supervision to the

lead researcher. If you decide to participate you will be given a copy

of this information sheet and a signed consent form to keep.

Contacts for further information

If you would prefer independent advice from a body that is not

involved in this study, you can contact Alzheimer’s Society or the

Patient Advice and Liaison Services.

Lead Researcher

Sobia Khan (Trainee Clinical

Psychologist)

University of Nottingham

Mobile:

Clinical Research Supervisor

Dr David Connelly: (Consultant

Clinical Psychologist)

Highbury Hospital

Tel:

Academic Research Supervisor

Dr Roshan Nair (Consultant

Clinical Psychologist)

University of Nottingham

Tel:

Independent agencies who you can contact for further advice about

taking part in this study:

Patient Advice and Liaison

Services (PALS)

PALS

Duncan Macmillan House

Alzheimer's Society

7 Mansfield Rd

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Porchester Road,

Nottingham

NG3 6AA

Freephone Helpline: 0800

0153367

01

Tel: 0115 934 8468

Thank you for taking the time to read this information sheet and

considering taking part in this study.

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