MS: Busting the Myths
There are some common misunderstandings about cognitive problems related to MS.
MS does not equal Dementia
People with Alzheimers, for example, have difficulty storing information from moment to moment. People with MS tend to have a difficulty with retrieval of information.
MS does not mean that intelligence has declined
Although some people with MS may not be able to think as flexibly as they once did, intelligence itself tends to remain stable. Overall, people with MS experience only minor declines in intelligence. Only a small group (thought to be around 10%) experience cognitive dysfunction that is severe.
MS is not a mental illness
Some people with MS may have difficulties with specific thinking processes, but this is due to the nature of the disease process. Treatment and rehabilitation for cognitive dysfunction in people with MS is usually co-ordinated by medical (rather than mental health) services. However, people with MS sometimes experience depression, and this requires medical and psychiatric treatment.
Cognitive functioning can be assessed
The cognitive status of a person with MS can be formally assessed using a series of tests administered by a neuropsychologist. If cognitive problems are impacting on work or study, then an assessment would generally be warranted.
Cognitive problems can occur at any level of physical disability
People with MS who are severely disabled physically may have no cognitive problems, while those who may exhibit few physical symptoms may have a number of cognitive problems. There is no clear link between either disease severity or duration and cognitive dysfunction.
In MS, inflammation and scarring damage nerve fibres and interfere with the transmission of messages from one part of the brain to another. When inflammation disrupts the messages relating to important motor or sensory actions the effects are likely to be immediately obvious, although they vary from person to person. Damage to less significant parts of the brain will still cause problems, but may be more subtle, and take longer to be noticed.
Common MS-related problems with cognitive functions include:
Note: Not all cognitive dysfunction is a direct result of damage within the nervous system. It can have a number of other causes, including occurring as part of a person’s natural ageing process. Thus, it is very important to advise your doctor about any difficulties you are experiencing, so they can be investigated and the appropriate treatment used. Many factors will determine your response to cognitive problems, including the impact of the disability on your normal way of life, previous ways of coping, and the support you receive from others. Carers and family members should also note any changes to cognitive functioning in people with MS. Changes should be discussed with the person with MS, and referred to a medical professional if there is any concern.
Multiple Sclerosis and Employment Issues
Although MS can affect your ability to work, staying employed for as long as possible is important. It may be necessary to make changes to the job or to be re-assigned within the work environment where your skills, expertise and experience can be used. As long as you are able to manage your responsibilities, or can be re-assigned to an area more suited to your symptoms and abilities, then continuing to work is to be encouraged. Admittedly, some jobs may no longer be suitable if you have cognitive problems (or physical problems like impaired balance). Involvement in volunteer work can be a good alternative and there are many organisations looking for help. It may be that early ‘retirement’ is the only option. If you do stop working, the transition from being employed to not being employed should be planned carefully. It is a good idea to consider involving your employer, your GP, and your Regional Community Support Staff in the process. It may also pay to contact Work and Income — especially if the principal income earner in your family.
Getting Help With Cognitive Problems
Cognitive dysfunction is best managed by learning new and different ways of dealing with any problem areas. Often input is needed from a professional trained to assess and treat people with cognitive problems. The health professionals who can help are neuropsychologists, occupational therapists, and speech language therapists. Neuropsychologists understand the relationship between brain functioning and behaviour. They assess brain functioning and can recommend treatment programmes for many of the affective (emotional) and cognitive (thinking and memory) disturbances associated with MS. Occupational therapists can help with learning compensatory strategies for the workplace and at home. It is important to involve a professional early to ensure independence (and employment) for as long as possible. Speech and language therapists provide assessment and assistance for communication problems, as well as other MS-related issues such as swallowing and saliva management. As the impact of cognitive changes can be stressful, it may also be helpful to talk to a counsellor or your doctor about how you are feeling.
Practical Ideas For Cognitive Problems – Ideas for managing memory problems
It might help to get an ‘organiser’. Set it up with sections for everything that affects your day-to-day living. Sections for appointments, for phone numbers, addresses etc. Anything that you need to remember. Keeping to a routine is important, as is being consistent. For example, when you open the door to your house, put your keys in the same place every time, so you will always know where to find them. Setting routines also helps with the completion of tasks. Using mental pictures or images to remember something can be a good technique to aid memory. For example, to remember a dentist appointment, in addition to writing the appointment in your daily schedule planner, picture a giant tooth with a giant drill, and a giant of a dentist hovering over it. Mental imagery can also be used when trying to remember a person’s name, by focussing on some particular feature of the person. Having people repeat or write down instructions often helps. It is important that the person conveying the message, instructions or directions to you knows that you have understood. Repeat it back to the person, and ask for clarification if necessary. Keep your mind as active as possible. Reading, doing crosswords and puzzles are good ways of keeping mentally challenged, and it is best to find activities that suit you. However, you do need to be aware of your energy levels and be careful not to tire yourself out.
Ideas for managing fatigue
Regular rests to recharge your brain (and body) become important when you have MS. Use energy conservation and work simplification techniques to ensure the best possible use of your physical and mental energy. Be aware of and alert for mental fatigue (a decline in cognitive performance following a task requiring continuous mental effort). If fatigue is an issue for you, occupational therapists can offer strategies to help you to manage both physical and cognitive fatigue. It is also best to avoid noisy and/or distracting environments as these can make it difficult to concentrate. It is also important when learning a new task that you allow plenty of time to learn it. If you are having trouble, shift your attention to another task and come back to it later.
Other coping strategies
Having MS may mean that you are less responsive to feedback from others and find it harder to adapt to changes in routines or the environment. Information gathering, planning, and goal setting will help. Positive reframing, (looking at your situation in a positive way) is a useful approach. Benefits from positive reframing include improved family relations, increased compassion and enhanced appreciation of life. Information on the effects of cognitive changes due to MS can be obtained several ways: publications such as this booklet, books at your local library, resources from local and international MS Societies, other people with MS, or by seeking help from professionals. It is important that you know that you are not going crazy, that many people with MS experience similar problems with their thinking and memory. In particular, it is important for friends and family members to be aware of the relationship between MS and cognitive dysfunction. This will help them understand what you are going through, how having MS is affecting you, and that it is the MS that is causing your difficulties. Knowledge, understanding and communication are essential for everyone. Depression and anxiety can also affect concentration and information processing, and may need specific treatment.
Finding Support for Cognitive Problems
Your doctor is your main health care provider, so it’s important to communicate your worries and symptoms as clearly as possible to ensure appropriate assistance. The following information and referrals are available from your doctor. These are invaluable sources of help, supplies, and government funding should you require their services. Not only are they very important; they’re completely free.
Community Occupational Therapist
A Community OT knows how to access funding from regional agencies for aids such as handrails or tools for ease of living and safety around the home. They are able to submit applications for mobility aids and make referrals to Disability Support Link (DSL) who assess and fund personal care and housekeeping hours.
Community Physiotherapist
A community physiotherapist is available to provide home visits to help with issues relating to physical limitations. They can advise on exercises and ways of reducing the strain on weakening muscles. Referrals to speech therapists, neuropsychologists, and any other support services, can also be accessed through your doctor.
Regional MS Societies and Community Support Staff
Each Regional Society has skilled and experienced Community Support Staff who, if required, can assist you in finding the services you need, including:
Many of our Regional Societies run the Minimise Fatigue, Maximise Life Programme providing assistance and advice for managing fatigue and creating a balance with Multiple Sclerosis. Contact your Regional Society today to find out when their next course is.
For more information please view our MSNZ Information Series booklet: Multiple sclerosis and changes to thinking and memory