Rationale
Over the last decade it has become increasingly clear that MS can cause permanent cognitive problems and, along with this, that most people with MS have concerns and fears regarding their cognitive abilities.
Therefore the Danish MS Society has developed courses for people with MS who experience cognitive problems that influence their daily life and social activities.
Objectives
The objective of the course is to improve the cognitive and psychological coping of people
with MS.
Background
Research shows that the majority of people with MS who have cognitive problems experience mild or moderate degrees of impairment. These symptoms may negatively affect a person’s self-esteem and cause embarrassment, the consequences of which may lead to social isolation. Research also shows that people with MS can learn to compensate for some of these impairments and that this is of crucial importance for their quality of life and social well-being.
Experience shows that basic knowledge of potential cognitive difficulties helps those affected to cope. For the individual with MS, it is important that they are psychologically aware and open about any “invisible” and potentially socially disabling cognitive symptoms, as this will help them to adjust and cope. Participating in a group with others in a similar situation provides the opportunity to exchange experience and knowledge. This may help the person expand his or her own coping resources, and reduce anxiety and the feeling of being stigmatised.
Marketing the programme
The course is advertised in the MS Society magazine and through brochures distributed locally. More recently the MS Society website has been used to advertise MS Society courses.
Programme Structure
Each course has between eight and 12 participants with mild or moderate cognitive problems. The programme consists of lectures, discussion and activities aimed to help the individual:
• learn how the brain functions
• learn about what types of cognitive problems are related to MS
• increase awareness of one’s own cognitive approach and thought patterns
• increase awareness of one’s cognitive weaknesses and strengths in order to find suitable ways of compensation
• explore strategies for compensating for cognitive problems
In order to meet the needs of each and every participant, it is important that sufficient time is incorporated to absorb key points. Participants are asked to use a variety of techniques in the process of memorising, and time is allowed for them to reflect and comprehend, repeat and recall, and to take notes.
An important teaching strategy used throughout the courses is based on the principle of learning by doing. Participants are given the opportunity to practice newly learned strategies in the group setting, and are encouraged to talk about which strategies can be useful in daily life and where further special attention may be required.
The combination of lectures, discussion and exercises challenges the participants’ ability to find the strategies to aid memory and problem-solving. The participants work individually, in pairs and in small groups. The duration of each course is from three to four hours and is held locally. The course is led by a psychologist from the MS Society with relevant knowledge and experience in group psychology and neuropsychology.
Outcome/results
There is a great demand for the course. Due to the number of accessible locations available for hosting courses, limited expenses and minimal practical preparations, it has been possible for the MS Society to meet the demand in most regions of Denmark. To date approximately 20 courses have been held.
Expenses
Include the following:
• venue*
• psychologist’s salary (planning and carrying out the course)
• audio/visual equipment
• lunch for participants
• brochures
*Facilities that can be used at no charge, such as MS Society branch office, libraries, community centres and schools, are convenient.
Limitations
It is obvious that with the limited time and range of the course, it cannot be considered a complete training programme on cognition. Neither is it an individual-focused programme, so a person with particular needs may require additional one-on-one consultation with the psychologist. Also, it is a type of programme that cannot meet the needs of people with serious cognitive impairment. Finally, participant recruitment does not involve a thorough neuropsychological assessment.
Suggestions:
• Offer follow-up courses, so that participants can provide feedback on what they were able to apply to daily life and refresh their recently learned skills.
• Apply the same general format to courses that involve the partner and/or the family members.
For further information contact the authors info@scleroseforeningen.dk
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