Challenge of Cognitive Impairment in MS

1. Challenge of Cognitive Impairment in MS Dr Anita Rose BA(Hons), DClinPsy Highly Specialist Clinical Psychologist, The Walton Centre NHS Foundation Trust

2. Facts and Figures Problems in these areas occur to some degree in 43% - 65% of people with MS (Britell, 2000, Winklemann et al., 2007) NB: Not everyone with MS experiences cognitive problems Was considered rare Charcott (1868) noted cognitive impairment 1980’s research indicated otherwise (Bobholz & Rao, 2003) 80% are mildly affected Relate to everyday activities and quality of life (Higginson et al., 2000) Variability (Rao, 1986) The most commonly affected cognitive functions in PwMS are those involving recent memory, sustained attention, speed of cognitive processing and conceptual reasoning (Schiffer, 1999)

3. Localisation of function

4. Pathology Disconnection of large cortical areas and between cortical and subcortical structures (Filley, 1989) “Multiple disconnection syndrome” (Calabrese, 2006) White matter volume & corpus callosum size correlate with cognitive dysfunction (Rao 1985, 1989) Lesion burden (Swirsky & Sacchetti, 1992; Stoneham, 1995) Severity of cognitive deficits associated with damage noted on MRI (Foong, 2000)

5. Demyelination in the sub-cortex of the brain Thinking and behaviour Concentration Comprehension of complex issues compromised Gaps can appear in memory Emotions blunted Thoughts can become uncoordinated Lack of insight (Longley 1995) Subtle changes in the frontal lobe can indicate difficulties in executive function (Foong, 2000)

6. Cognitive Deficits in MS Most commonly reported difficulties are: Memory Attention Planning and problem solving (Executive Functions) Information processing Word finding Visuospatial Intellectual Functions usually intact Rare cases deficit induces subcortical dementia (Cummings and Benson, 1984)

7. “Hidden” Symptom PwMS can present with relatively well-preserved language and social skills, but sometimes a marked difficulty with problem solving and insight Having preserved language and social ability means that in ordinary conversation, cognitive problems may not be apparent Might not be apparent on “bedside testing” Stigma – within family and wider society Fear – PwMS Therefore cognition as a symptom is often ignored but it is an important correlate with quality of life

8. Impact Frightening Think they are going mad, are stupid or are crazy Causes problems in relationships, with family life Major impact can be seen in employment Concerns around safety, independence, ability to self-care can arise Insight

9. Assessment & Intervention Assessment Cognitive deficit might be present in early stages (Simioni et al., 2007) Longitudinal studies suggest cognitive deficit could be used as predictive parameters of MS evolution and severity (Amato et al., 1995 & 2001; Kujala et al., 2001) Impairment predictor of low quality of life, employment issues, carer stress Assessment assists patient, family, healthcare professionals (Roig & Bagunya, 1997) Treatment Cognitive rehabilitation Aim to improve quality of life Environmental adaptation Increase autonomy

10. Memory in MS 40 – 60% report memory deficits (Brassington & March, 1998) On assessment (Beatty et al., 1996): Mild – Moderate = 53% Severe 22% 25% show normal performance Core deficit in MS Global affects can be seen Recent memory Retrieval Encoding Working memory (? Slowed processing) Recognition relatively unaffected

11. Rehabilitation of Memory Modify Environment e.g. Signposts Colour coding Encourage Repetition Compensation: memory aids External Internal

12. Helping Memory MODIFY ENVIRONMENT Reduce clutter Key ring by the door Special place for wallet/purse, glasses etc A tray for letters BE AWARE Get organised Stop and think Be extra vigilant ROUTINES Standing orders Certain activities on certain days Timetable BREAK TASKS DOWN

13. REMEMBERING IMPORTANT CONVERSATIONS Write down what people say – or use a Dictaphone Keep a diary of important events or discussions Write things down in an organised way Use headings Bullet points Underline Capital letters DIARIES Essential addition to anyone’s memory whether for forward planning or for remembering past event – Powell (1994) Page a day diary Diaries entries can act as cues or triggers Check diary regularly Cross out things you have done Write in future activities/events MEMORY AIDS Prompts, Post-it notes, Dry-wipe board, Notice boards, Calendars, Notebooks, Lists, Signs, Labels, Timers, Alarms, Watch alarms, Pill boxes, Key finders, Electronic Organisers etc.

14. Attention Research produced inconsistent findings (Higginson et al. 2000) Definition of attention Measuring instruments very varied However all note Attention difficulties: Selective Divided Sustained Alternating

15. Attention People with MS report: difficulty in concentrating difficulty in keeping track of what they are doing following storylines when reading following a conversation All of the above are not helped if distracted or interrupted Even mild attentional problems have significant impact(Langdon & Thompson, 1996)

16. Helping Attention/Concentration Break information into small steps Turn off distractions like TV/radio/mobile phone Repeat Ask person to repeat back Write things down Avoid over-stimulating environment Have patience Encourage practice – small achievable goals

17. Information Processing Primary deficit (Rao et al., 1991) Significant impact (Langdon & Thompson, 1996) Evidence indicates that people with MS require a longer time to digest new information Takes longer to process information and formulate the proper response Accuracy rarely affected, just takes longer(Demaree, 1999) Takes longer to complete tasks Given additional time = improved accuracy Working memory deficits due to impaired speed

18. Helping Information processing Permission to take longer Break information into small steps Turn off distractions like TV/radio/mobile phone Avoid over-stimulating environment Have patience Encourage practice – small achievable goals e.g. use cancellation tasks

19. Language difficulties Verbal fluency Some difficulty with forming words quickly in an co-ordinated fashion Slow speech Change in tone

20. Helping Language Difficulties Encourage people not to provide the word Encourage self-cueing Using the first letter of a word Going through different categories and sub-categories Encourage use of talking around the subject Describe it Talk around it Don’t get hung up on finding the right word Getting the message across it what is important Give them permission to use gestures

21. Visual Processing One study suggests 26% impairment (Vleugels, 2000) Visual processing (Warren, 1993) Visual Cognition Visual Memory Pattern Recognition Scanning Visual Attention In people with MS impairments reported as: difficulty in recognising objects accurately difficulty in reading maps difficulty in driving problems finding way around ability to draw or assemble things is impaired

22. Helping Visual/spatial Difficulties Raise awareness by providing feedback Promote compensation and self management so predictions can be made If you keep walking into doors Put tram lines of tape on the floor to walk between Forgetting passages or missing the end of sentences when reading Use a piece of paper to cover text and guide reading Reading Rulers Reduce clutter Keep things in consistent places Increase contrast Scanning Dark objects on white background or vice versa Coloured tape on sharp corners Use written and visual cues

23. Executive Functions Capacities that enable a person to engage in independent, goal directed, self-serving behaviour appropriately In MS deficits seen in: Planning Problem solving Sequencing Organisation and prioritisation Concept formation Utilising feedback

24. Ways of Improving Executive Skills Base intervention/support on individuals level of: environmental dependency cognitive strengths and weaknesses self awareness Stepping Back Take a step back – Don’t rush in Think about it for a few moments Starting Set specific goal Schedule activities Reward f for achieving a task Sequencing Make a list of steps needed to achieve the task Simplify the task – Break it down into small steps, and write these down Follow the steps in the correct order Keep these templates and use when doing tasks Shifting or solving problems Look at, and recognise, errors and then do the task differently Try to be flexible Look at the problem from a different angle Allow longer to do the task

25. Contributing Factors Include: Physical difficulties Fatigue Depression/anxiety Engagement Pain Medications

26. Mood and Cognition A vicious cycle of mood and cognitive problems can develop. Feel embarrassed, anxious, depressed or angry because of problems. Leads to poorer concentration, which in turn leads to more emotional distress and so the cycle continues. Increased emotions Experience difficulty Less likely to pay attention or think clearly about task

27. Misconceptions Cognitive problems are permanent…. Not necessarily. Can come and go like other MS symptoms Cognitive problems will get worse… Possibly. If they do it appears to be slowly progressive Cognitive problems are only seen in Secondary Progressive MS…. Not true. Those who experience cognitive deficits are emotionally unstable or are mentally ill…. Definitely not true Cognitive deficits can be assessed asking a few questions e.g. MMSE…. Mental status can only detect severe problems If patient is diagnosed with cognitive deficits it is classed as a dementia…. No!

28. Conclusion Cognitive impairment is common Important to consider and assess as: Frightening Think they are going mad, are stupid or are crazy Causes problems in relationships, with family life Major impact can be seen in employment Later stages concerns around safety, independence, ability to self-care Patient management Intervention can have a positive impact on quality of life, mood, employment and relationships

29. Useful resources • www.stayingsmart.org.uk • www.mindtools.com • www.mssociety.org.uk • www.mstrust.org.uk

30. Acknowledgement The UKMSSNA is grateful to Dr Anita Rose for permission to use this slide presentation