General Information

Gadgets and Gizmos

The obvious things like having a diary, keeping a pen and notepad with you, and by every phone in the house, all work well.

Look out for solar powered and wind-up electricals – you won’t have to remember to shop for batteries.

Many people find that computers and computerised devices are helpful. If you are not computer literate, or want to brush up your skills, most local authorities offer computer classes for all comers at very reasonable cost.

Other Important Influences

There are a number of outside factors that might make your mental skills less efficient:

Having an infection, or being otherwise unwell. If this is the case, seek medical advice
Some drugs given for MS symptom management, including drugs for continence management and spasticity. If you think this may be the case for you, discuss with your doctor
Fatigue has been shown to affect mental skills in MS. Cognitive fatigue has more impact than physical fatigue on mental efficiency. Repeating the same mental task over and over again is especially vulnerable to fatigue in MS. You may find varying your mental tasks, taking breaks, being rested and choosing your best time of day all help. You are also less likely to employ your preparation and strategies when you are feeling fatigued, which reduces how well you can manage your cognitive difficulties.
Download 'MS Trust Publication living with Fatigue'
Anxiety may affect your mental performance, especially if you are “on the spot” and feeling tense. Try to stay relaxed and work round the immediate block.
Depression in MS reduces performance on cognitive tasks that need a lot of concentration. It seems to take up capacity (“thinking space in your brain”) with worries and recurrent bleak thoughts. Like fatigue, depression can also reduce your motivation to employ strategies to manage your cognitive difficulties. Because depression gives people a negative view of the world, you are also likely to view your cognitive difficulties as worse than they are and underestimate the effectiveness of your management strategies. If you think that you may be suffering from low mood or depression, seek medical advice.

Professional Help

If you feel that your own efforts at adopting strategies and other self-help measures are not enough, you may wish to seek professional help. If you are under the care of a neurologist, you may wish to contact him or her directly. They may be able to refer you to someone who can offer you an assessment and therapy. If you are not under the care of a neurologist, you can ask your GP to refer you to a specialist MS Centre. The pattern and impact of cognitive deficits in MS is individual to the condition and you should request that you be seen by someone who is an expert on MS.

A range of professionals may be able to help you understand and mange your cognitive difficulties:

Occupational Therapist

An Occupational Therapist (OT) is skilled in assessing how cognitive impairments may be impacting on your everyday life and suggesting ways of reducing this impact.

Occupational Therapist is a protected title, and anyone using this must be on the register held by the Health Professions Council. You can check whether your OT is registered using the search facility on the Health Professions Council's website.

Speech and Language Therapist

A Speech and Language Therapist (SALT) is skilled in assessing and treating communication and speech problems. The therapist can assess the cause and the impact of particular problems and develop programmes to provide effective management of symptoms. Referral to a speech and language therapist is usually made by a GP but most therapy services can also be contacted directly for advice. Speech and language therapists work in a variety of settings depending on a client's needs - in the community, people's homes and in hospitals. Royal College of Speech and Language Therapists.

Clinical Psychologist

A clinical psychologist is skilled in understanding the impact that MS may have on your life.

The number of people calling themselves psychologists and offering psychological services is increasing. Some of these people have no recognised qualifications and are not answerable to any recognised professional body. The title Chartered Psychologist is a protected title. Both the Register and The Directory of Chartered Psychologists lists Chartered Psychologists and can be viewed online.

Clinical Neuropsychologist

A clinical neuropsychologist is skilled in assessing the pattern and severity of a person’s cognitive impairments. They can develop individual treatment programmes based on cognitive neuropsychology, an evidence-based approach that models cognitive deficits and strengths to optimise function.

There is a “Find A Psychologist” section on the British Psychological Society website. You can look in the Directory of Chartered Psychologists to find a clinical psychologist or a clinical neuropsychologist in your area, by typing in your postcode. You can look in the Register of Chartered Psychologists to see if any particular psychologist is chartered, by typing in the name of the psychologist. You may be seen for part of the time by a trainee psychologist or psychology assistant, but they should be supervised by a chartered psychologist.

What happens when you meet a professional?

An important part of any assessment is to identify and understand what is the most troublesome problem that you are experiencing. It is likely that some formal assessments will be made of your mental abilities. These may seem like quizzes and puzzles. They might include remembering word lists, reading word lists, arranging pictures to tell a story, or remembering pictures or faces. These tests usually work by comparing your scores to people of your own age. You shouldn’t feel uncomfortable or worried about this. The first stage to making changes is to fully understand the problem. Various strategies will be tried and evaluated. Targets will then be agreed, to measure improvement in the area(s) that concern you most. If you are comfortable to involve others and give your permission, it may be appropriate to involve family members or even workmates in helping you manage your cognitive difficulties. Your cognitive problems may be affecting how well you manage your MS. If this is the case, it may be appropriate to involve other professionals (e.g. continence specialists, physiotherapists).

MS Trust Publications

Cognition Factsheet

This factsheet describes the range of cognitive problems that can occur with MS difficulties with short-term memory, concentration, verbal fluency - and discusses ways to approach managing the various problems.

Cognition problems chatroom Transcript

Transcript of an open forum chatroom where issues raised about cognitive problems are answered by health professionals. The views expressed by participants are not necessarily those of the MS Trust.

More general information about MS

MS explained

MS Explained is a book for anyone who wants to understand the mechanisms of MS and what is causes symptoms to occur.

It describes the immune system and the central nervous system and then explains how MS is thought to cause them to malfunction and the symptoms that result.

MS: what does it mean for me?

If you have recently been diagnosed with MS, you will almost certainly have a number of questions about how it will affect your life.

In our experience, one of the best ways of learning to adjust to your new circumstances is to have access to clear and accurate information. This booklet provides a practical introduction to MS to help you to maintain a positive attitude to managing your MS.

At work with MS

The book considers some of the ways in which MS might affect work, the protection afforded under the Disability Discrimination Act and what adjustments can be made for a successful working life with MS.

Tips for living With MS

A compilation of nearly 150 useful ideas sent in by people with MS. The book contains practical suggestions on saving time and energy, getting around, making the most of benefits and getting equipped and more. There is also an extensive section of contact details for useful organisations.

Living with fatigue

Fatigue is one of the commonest symptoms of MS and can have a major impact on daily life. Living With Fatigue was written in conjunction with an MS specialist occupational therapist and illustrated with comments by people with MS who know what it is like to live with the symptom.

Open Door

Quarterly newsletter that contains articles news and research relevant to people living with MS and their families.

Practical management of cognitive impairments associated with MS

Patrick Carroll, Clinical Specialist Occupational Therapist, Gosport War Memorial Hospital, Gosport Way Ahead 2004;8(2):4-5.

Other Resources

Facing the cognitive challenges of multiple sclerosis

Gingold JN. New York: Demos; 2006 ISBN 1932603603

A personal account of experiencing cognitive difficulties. Jeffrey Gingold is a policy advocate and peer supporter for the National MS Society in America, he was diagnosed with MS in 1996.

Mental sharpening stones: manage the cognitive challenges of multiple sclerosis

Gingold JN. New York: Demos; 2008 ISBN 1932603654

A collection of anecdotes and real-life techniques, collected from people with MS and health professionals who work with them.

Multiple sclerosis: understanding the cognitive challenges 2nd ed.

LaRocca, N, Kalb R New York: Desmos Medical Publishing;2006 ISBN 193260331x

This book examines how cognitive changes experienced in MS might impact socially and emotionally, and features strategies to manage some of these changes.

The owner's manual for the brain everyday applications from mind-brain research 3rd ed.

Howard PJ Austin: Bard Press; 2006 ISBN 1885167652

Examines how findings from brain research may be practically applied to everyday work and life situations.

Involving Family and Friends

It can sometimes be hard to broach the subject of difficulties in thinking and remembering with those around you. It means dealing with your own worries head on. And then sharing them with someone else, who may have anxieties and worries of their own about your thinking and memory. Most people around you want to help and are pleased to be able to help, whether this means listening to your experiences, or more actively supporting and helping you. Once your family and friends are in the picture, you may well find you feel more relaxed. You will no longer need to hide or cover up slips. You will no longer need to avoid activities that you fear may reveal your difficulties.

It may be easiest to start with an everyday slip, perhaps you missed a meeting with them, or forgot to get an item of shopping. You could either raise the general issue of your thinking and memory when the slip comes to light. Or, if there are too many people around at that time, or you would rather wait for a calmer moment when you are better prepared, mention it later. You could start off by talking the particular slip, and then speak more broadly about times when your concentration or memory has let you down. You can tell how interested and comfortable the other person is by how much eye contact they make, whether they ask questions to get more information and if they volunteer that they have noticed these difficulties on occasion.

It can seem like a rough deal when people who have any kind of illness or symptom sometimes have to support and reassure the people around them about the illness. This is no less true of MS. You may find your friend or relative is confident and pleased to talk about your difficulties. Or you may find that they are less eager, because of their own fears, worries and imaginings about your experiences. Common worries are that any change in any aspect of mental skill means that the person is “falling apart”, even “going mad”, which is certainly not true. Another fear is that any problems with memory and concentration will lead to a general dementia, such as they may have observed in Alzheimer’s Disease, but that is a very different condition to MS. Very few people with MS indeed ever experience a severe widespread loss of cognitive function, which most people would call a dementia. Also some family members who are not aware of the memory problems that MS can bring, might interpret forgetting household chores and errands as “bloody mindedness”, or an unwillingness to help, which is certainly not the case. Explaining that your thinking and remembering is affected by your MS will take away these negative views.

When someone offers help, it can be hard to accept it. But the way forward with family and friends is to share your experiences and let them support you appropriately. They will need feedback and guidance to know what to say and do. If you have told them that you can’t remember what you need to buy at the shops and a friend buys you a smart shopping list pad to stick on the fridge, that is a positive act and should be acknowledged. You could always let them know you have used the pad and how much it helped you. If they respond by offering to take you shopping, which is more help than you need and doesn’t overcome the real problem, try to acknowledge their offer warmly, but explain that isn’t exactly the help you need right now. Suggest another concrete way they can help you overcome a difficulty, or say would it be OK for you to come back to them with another problem that they could help with another time.

It can be helpful to give family members information about cognitive difficulties in MS. There are some good introductory fact sheets and leaflets, or they might want to look at this website.

Research

Cognitive difficulties

Just under half of people with MS say that they experience significant cognitive difficulties. When their cognition is formally assessed on psychometric tests in group studies, approximately half will have some demonstrable inefficiency. When the people with MS are recruited from the community, slightly less than half will show this effect on tests. When the people with MS are recruited from a university clinic, slightly more than half will have a demonstrable inefficiency. Test scores do not relate to how people manage in everyday life in a simple way. This is partly because of external factors influencing test performance (see contributory factors).

The types of tasks that are most likely to be affected in MS are those requiring complex attention (for example, difficult arithmetic problems done without paper and pencil) and memory for information that has just been heard or seen (e.g. remembering a list of words). Increasingly, research is pointing towards an underlying slowing in mental processing that explains all other cognitive difficulties.

Change in cognitive abilities over time is often slow or non-existent. In very long studies, which collect information over 10 years or more, it seems that there is a gradual accumulation of cognitive difficulties over time. Such studies indicate that those individuals most at risk of acquiring cognitive difficulties are those who present with them in the earliest stages of the study.

While some studies have pointed towards different cognitive profiles for the different MS subtypes (relapsing/remitting, primary progressive, secondary progressive and benign), such differences are small and very subtle.

cognitive retraining through drills and exercises (often computerised);
neuropsychology-model based interventions, which rely on theories of how the brain stores and processes information to develop and teach strategies which the person with MS can apply to different situations;
eclectic, drawing on neuropsychology, cognitive psychology and behavioural psychology;
holistic, addressing motivation, emotion and other psychological needs, in addition to specific cognitive skill training.

When a drug treatment is evaluated, a randomised controlled trial is carried out. Participants are randomly allocated to receive either treatment or placebo. It is relatively hard to tell a placebo tablet from a real tablet, when they have been designed to look the same. But it is much harder to devise a placebo rehabilitation programme. This means that the therapists delivering the programme and usually the participants as well, know who is receiving the “real” treatment. This can compromise the objectivity of the evaluation of the treatment.

Most rehabilitation studies rely on using neuropsychology tests of different mental skills. The scores before and after training are used to determine if positive change has occurred. Not all studies ask the participants if they found the programme useful. Very few attempt to find out if managing in daily life improved.