BICAMS Study Feedback

B
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 www.stayingsmart.org.uk.  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 www.bicams.net.
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.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

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