Monday, 28 July 2014

BICAMS Study Feedback

Where you a participant in the UK BICAMS study? Thank You! #MSResearch #MSBlog

Dear Participant

Re: Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS): UK Standardisation

Firstly I want to say a huge thank you for taking part in this research to validate a measure of memory and information processing speed in MS.  This project would not have been possible without you and I want you to know your time and efforts are appreciated.  This project brings us a step closer to making cognitive testing more widely available to people with MS.

I am writing to you as you requested an overview of the research findings.  As I explained I am not able to provide individual test scores.  You may recall completing a 90-minute, “gold standard” collection of cognitive assessments often used in MS research (Minimal Assessment for Cognitive Functioning for Multiple Sclerosis, MACFIMS).  BICAMS is a subset of MACFIMS tests that this research sought to validate.  BICAMS consists of three tests and takes 15 minutes to administer.  It can be administered by a nurse or neurologist and requires only pen and paper.

Main findings:
  1. BICAMS is comparable to MACFIMS in its ability to detect cognitive difficulties in MS. 
  2. BICAMS can differentiate between participants with MS and control participants.
  3. BICAMS offers a practical, short neuropsychological assessment tool that can be used in routine clinical practice.
  4. Once published, data from this study can be used by UK clinicians and researchers to interpret cognitive assessment scores.
  5. This research supports previous findings that people with MS who experience cognitive difficulties are most likely to have difficulties with information processing speed and learning new information.
If you think you may have cognitive difficulties please see the next two pages of this letter for some ideas on how to compensate for these problems.  See also  Please be aware it is normal to forget things every now and again!  This does not necessarily mean you have cognitive difficulties. 

Spreading the word:

I have already shared findings from the project with MS researchers and clinicians through poster presentations at the International MS Cognition conference in June 2013 (IMScogs) and a much larger conference in October 2013 (ECTRIMS). I also plan to publish the research in a journal so we can move towards making cognitive assessment more widely available to people with MS.  BICAMS is gaining international recognition and now has its own website

Thank you again for taking part.  Kind regards and best wishes for the future.
Dr Alex Orchard
Clinical Psychologist

Memory Tips

Remember it is normal to forget things every now and again; so don’t be too hard on yourself.  Factors such as a busy life, low mood, stress and anxiety can all decrease our ability to process and remember information, whether you have MS or not

The suggestions below are not exhaustive but give some ideas of what can be helpful both to people with MS and those without.  It is helpful to know yourself and work to your strengths so pick the bits that could work for you.

General tips:
·        Structure your day/have a routine
o   This lightens the load on your brain and means you have more space to focus on processing and remembering new information.

·        Pace yourself/slow down
o   Don’t pack your week full of activities so you become tired.
o   Doing too much will reduce your ability to process new information and remember things.

·        Friends, family and technology can be great aids to processing and remembering information.
Reduced processing speed tips:

·        Avoid “information overload”
o   Don’t be afraid to ask people to slow down during conversations.
o   Ask people to repeat or summarise what they have said.
o   Summarise/repeat back what people say to you.
o   Plan your day so you don’t do lots of new things at once.

·        Summarise/clarify new information
o   During conversations repeat back/summarise important points/instructions.
o   Minimise the amount of information you have to process:
§  Block out extraneous information:
·        Use easy read versions of websites.
·        Use pieces of blank paper to block extraneous information on a page.
§  Highlight important points in documents.
§  Write bullet points of conversations/documents you have read as you go along.

·        Minimise distractions
o   Reduce background noise whilst completing tasks.

·        Do one task at a time

Memory tips:

Our memory can only hold so much information so we have to be realistic in what we ask of ourselves.  Structure and routine can allow us to go through the day on autopilot and reduce the load on our memory freeing us up to deal with and remember novel information.

·        Repetition, repetition, repetition
o   Repeating information you hear or see by saying it or writing it down can significantly improve your chances of remembering it.

·        Pace yourself
o   Be realistic about what you can manage. The more you do the more there is to forget.

·        Use a range of senses
o   It often helps to receive information both verbally and visually
§  e.g. if someone shows you something, describe what you see.  This increases your chances of remembering information you are given.
External Strategies

·        Visual prompts
o   Post-it notes and whiteboards in an obvious place can provide invaluable reminders of tasks to do, birthdays, appointments etc.
o   Use bullet points to remember the most important points.
o   Make sure these are in places you will see them easily.
o   You may find drawing or taking pictures helps you remember better than writing or verbal cues.

·        Diaries and electronic organisers
o   Develop the habit of checking these regularly so you know what you have to do for the day/week.
o   Keep diaries/electronic organisers with you to note down reminders throughout the day.

·        Reminders on your mobile/electronic organiser
o   This can help you to be on time for appointments and remind you to check your diary.
o   It can help you take medication on time.

·        Lists
o   Write down things you have to do and what shopping you need to get.
o   Information on a list is information your brain doesn’t have to remember and frees your brain up to do other things.

·        Organisation
o   Everything in its place
§  Choose one place to put your possessions e.g. keys in the pot, coat on a hook.
o   Use a filing system
§  You can retrieve information when you need it rather than using memory space.
Internal Strategies

·        Repetition, repetition, repetition
o   Repeating information you hear or see by saying it or writing it down can significantly improve your chances of remembering it.

·        Categorisation
o   Categorise information to be learnt into different groups.
o   E.g. remembering a shopping list by grouping what needs to be bought into vegetables, tinned food, meat etc.

·        Chunking
o   Most people can only remember 5-7 pieces of information.
o   When reading or listening to something containing lots of information break it up into small units so you only have 5-7 small units or keywords.  These can act as prompts to help you recall all the information.
o   A common example of chunking is remembering telephone numbers
§  Instead of 02078977385 we remember 0207 697 7395.

·        Storytelling
o   Some people find making a story makes remembering a list of unrelated items easier.

·        Rhyming
o   This can help you create links with information you already know.
o   It works well for remembering names e.g. Jean-Bean, Tall-Paul etc.

·        First letter association
o   Make up a word using the first letters of the items you need to remember.
o   e.g. Colours of the rainbow become Richard Of York Gave Battle In Vain.

·        Visualisation
o   You can create a mental picture of what you need to remember
o   You may want to picture things you need to remember from a list in a series of locations e.g. in rooms in your house.

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