Training for Self-Help Group Leaders: Mood and Cognition Issues. Rosalind Kalb, PhD April 21, 2010

Transcription

1 Training for Self-Help Group Leaders: Mood and Cognition Issues Rosalind Kalb, PhD April 21, 2010

2 SCHEDULE AND CALL-IN INFORMATION Call One Wednesday, April 21, :30 pm ET (12 pm CT, 11 am MT, 10 am PT) Participant Dial-In Number: Conference ID: Call Two Wednesday, April 21, :30 pm ET (6 pm CT, 5 pm MT, 4 pm PT) Participant Dial-In Number: Conference ID: When asked after dialing in, please provide your First and Last Name, and City and State. This information is required for purposes of tracking attendance.

3 Outline for today What we know about mood changes Depression, mood swings, anxiety, pseudobulbar affect Dealing with these changes in your group What we know about cognitive changes Memory, attention, information processing, spatial relations, executive functions Dealing with these changes in your group Q&A with submitted questions

4 Historical Perspective Depression and cognitive changes were described as a feature of MS as early as 1877 in Charcot s case reports

5 Why are mood issues so important? Depression in MS: Affects cognitive function Compromises quality of life Is associated with time lost from work Interferes with self-care/adherence to treatment Is the greatest risk factor for suicide Mood changes adversely affect relationships Mood can be affected by medications

6 What do we mean by depression? Feeling down in the dumps ; having a bad day ; feeling blue bummed low Depressive symptoms Dysthymia chronic low mood Major depression/clinical depression/major depressive episode

7 What are the DSM-IV diagnostic criteria for a major depressive episode? For at least two weeks: Depressed mood most of the day nearly every day with markedly diminished pleasure in most or all activities Significant weight change ( or ) in a month Inability to sleep or sleeping too much Motor agitation or significant slowing Fatigue or loss of energy Problems with thinking or concentrating Feelings of worthlessness/excessive guilt Recurrent thoughts of death

8 How does depression in MS differ? People with MS are: more likely to exhibit irritability less likely to exhibit feelings of worthlessness and excessive guilt

9 How common is depression in MS? Lifetime risk for major depressive disorder in the MS population is 50 percent When milder depressive symptoms are included, the risk is even higher Risk is much greater in MS than in the general population or in other chronic diseases

10 How are depression and MS related? Evidence of lesions in mood-related areas of the brain Evidence of immune system abnormalities Reaction to altered life circumstances Depression seems to be related to underlying disease activity but not to severity of physical disability

11 What psychosocial factors contribute to depression? Emotion-focused coping vs. problemsolving coping Unpredictability and uncertainty of MS Social stressors (marital discord, social isolation, financial strain, etc.) Self-help groups are an ideal setting for improving problem-solving skills

12 What do we know about MS-related suicide? Suicide risk is significantly higher in MS than in the general population Risk factors for suicide Depression Social isolation Recent loss of function Moderate disability Alcohol abuse More than a quarter of people with MS have suicidal thoughts or intentions during their lifetime

13 So what do we know so far? Depression in MS probably has multiple causes Factors causing depression may differ from one person to another Diagnosis and treatment should take individual differences into account Depression can have life-threatening consequences Regardless of the cause, depression is depression and responds well to treatment

14 Why is depression sometimes difficult to diagnose in people with MS? People may be reluctant to report depressive symptoms to their doctors Doctors typically don t ask about it Even when doctors ask about it, they may not do anything about it Sleep disturbance, psychomotor slowing, fatigue, and cognitive changes can all overlap with symptoms of MS Depression symptoms sometimes difficult to distinguish from normal grieving

15 What is normal grieving in MS?

16 How should depression in MS be treated? Psychotherapy + antidepressant medication is the treatment of choice Cognitive behavior therapy SSRI antidepressants Exercise Support group participation is not sufficient for treating significant depression

17 What are the challenges? Many share the misconception that anyone with MS would be depressed People may resist the idea of needing treatment Non-psychiatrists often aren t trained to deal with the complexities of treatment Medication side effects pose problems Dry mouth, nausea, sexual dysfunction, insomnia, palpitations, tremor, anorexia or weight gain

18 So, what is the reality in MS? Depression in general tends to be underdiagnosed Two-thirds of MS patients with major depression within neurological clinics receive no antidepressant treatment Three-quarters of those treated are given an inadequate dose Many people with MS are living with more distress and discomfort than they need to You may have several group members who are dealing with depressive symptoms

19 What other emotional disorders occur in MS? Mood swings Anxiety Pseudobulbar affect

20 What do we know about mood swings in MS? Moderate to severe shifts in mood may occur May shift between happiness, sadness, irritability, and/or rage Affect self-esteem and the sense of personal control Strain relationships at home and at work May be treated with a combination of psychotherapy and mood-stabilizing medications Steroid Alert

21 What do we know about anxiety in MS? Affects at least a quarter of people with MS May lead to an increase in physical complaints, suicidal thinking, and alcohol consumption Related to the unpredictability and uncertainty of MS symptoms, course, and outcomes Treatment includes psychotherapy, support groups, and medication Relationship with healthcare providers seems to be important Steroid Alert

22 What do we know about pseudobulbar affect in MS? Episodes of uncontrollable laughing and/or crying that are unrelated to how the person is actually feeling Differs from mood swings Tends to be related to more advanced MS, but not always Tends to be related to cognitive impairment Generally responds to amitriptyline; may also respond to SSRI antidepressants Zenvia under review by FDA

23 Take-Aways about Common Mood Issues Significantly affect quality of life and healthcare May be related to disease process itself and/or altered life circumstances May overlap with other MS symptoms Are often under-diagnosed or mis-diagnosed Respond best to medication + counseling Depression and anxiety are more common in caregivers as well!

24 Call to Action for Group Members Report significant mood changes to their healthcare professional(s) Ask their doctor or contact their chapter for referrals to specialists in their area: *Psychiatrists physicians who specialize in the diagnosis and treatment of emotional problems *Nurse practitioners nurses with specialized training in mental health issues Psychotherapists (psychologists, social workers, counselors) provide individual/family therapy *Licensed to prescribe medication

25 Challenging Group Scenarios A group member who: Expresses suicidal thoughts/feelings Begins to miss meetings and lose contact with others Displays severe crankiness and/or frequent outbursts Seems paralyzed by anxiety over the future Cries and/or laughs uncontrollably, with no apparent connection to the situation

26 Long-Standing Misconceptions about MS and cognition Cognitive impairment (CI) is rare in MS CI only occurs in late stage MS or severe MS MS is a white-matter disease and does not affect: 1) brain volume, 2) gray matter, 3) the cerebral cortex If a person with MS can pass the mental status exam, everything is OK Memory problems in MS are caused by stress, anxiety, and/or depression Cognitive problems are too scary to talk about.

27 Cognitive Changes in Multiple Sclerosis Severity of Cognitive Changes in Multiple Sclerosis None 50% Mild 40% Moderate to severe 10%

28 Cognition and Other Disease Characteristics Cognitive function correlates with MRI changes Cognitive dysfunction can occur at any time but is more common later in the disease Cognitive dysfunction can occur with any disease course, but is slightly more likely in progressive MS Being in an exacerbation is a risk factor for cognitive dysfunction Depression can worsen cognition, particularly executive functions

29 Cognitive Functions Affected in MS Memory - acquisition and retrieval Attention & concentration - working memory Speed of information processing Executive Functioning Visual/spatial organization Verbal fluency - word finding

30 Cognitive Functions Unaffected in MS General intellect Long-term (remote) memory Recognition memory Conversational skill Reading comprehension

31 Recognizing Memory Problems Difficulty learning new material or needing to spend longer to make it stick Forgetting recent conversations, TV shows, movies Forgetting appointments Losing track of medication schedules Neglecting to do planned tasks Losing or misplacing things Forgetting names, phone numbers, etc.

32 Recognizing Impaired Attention and Concentration Difficulty with focus Easily distracted Difficulty with divided attention tasks, e.g., listening to a family member talk while cooking Brain fatigue when trying to concentrate on reading material or other intellectual tasks Poor recall due to lack of attention when information is being learned

33 Recognizing Slowed Information Processing Quality of work is the same but output is much less Cannot respond quickly when a lot of information is being presented Trouble dealing with tasks having a time element, e.g., card games, word games, deadlines Difficulty processing information coming from several different sources simultaneously

34 Recognizing Problems in Executive Functioning Inability to perform jobs requiring analytic skills Difficulty following complex arguments or explanations; missing the point Trouble with multi-step tasks Being too literal or concrete Need for increased direction on the job because of difficulty in setting priorities, organizing time, and meeting deadlines Trouble with multi-tasking

35 Recognizing Impaired Visual/Spatial Organization Gets lost when driving; confused about right/left, north/south Can t do puzzles or assemble some assembly required items Trouble operating machines Difficulty understanding diagrams Problems visualizing objects without a picture e.g., from a description, incomplete picture, or disassembled picture

36 A Word about Cognition and Fatigue Physical fatigue has less impact on cognitive performance than people think Cognitive fatigue refers to a decline in cognitive performance following cognitively challenging tasks Cognitive fatigue can occur even in the absence of physical fatigue

37 The Psychosocial Impact of Cognitive Changes Cognitive changes: Threaten sense of self, self-esteem and selfconfidence Affect interactions with others Alter communication patterns Impact other people s perceptions Interfere with role performance Affect the balance in a partnership

38 When Cognitive Evaluation is Appropriate To establish a baseline There are reported changes in ability Person is being started on a new treatment When considering an application for SSDI or vocational rehabilitation When the person just wants to know

39 Cognitive Evaluation Battery of tests designed to assess areas of reported difficulties, as well as pre-existing and current strengths Clinical neuropsychologist, occupational therapist, speech-language pathologist Full test battery = 6-8 hours over two days Expensive may not be fully covered by insurance Various screening batteries available

40 Guidelines for Treatment (for now) Symptomatic Treatments slow progress Not much of real value has emerged (donepezil or methylphenidate may help) Disease Modifying Agents may be most important Modest results so far, but if they can slow or halt accumulation of cerebral lesions... Cognitive Rehabilitation common-sense help Compensatory measures are best strategy

41 Call to action for group members Get someone to work with you. Make up your mind that it s OK to do things a little differently than in the past. Although abilities may not improve, function can be enhanced. Compensation is key e.g., many memory problems can be solved with better organization. Consistency is essential. Keep the mind active and stimulated.

42 Summary More that 50% of people with MS experience cognitive changes. Cognitive dysfunction is more related to MRI changes than to other disease characteristics. While many functions can be affected, some are more likely to be affected than others. Compensatory strategies are essential. Adequately treating depression may improve cognitive functioning.

43 Challenging Group Scenarios The group member who: Repeats stories/questions over and over again Never seems to be able to implement the suggestions of others Consistently comes late or misses group meetings Has difficulty keeping up with the flow of the discussion Always seems to be off-topic Tends to ramble

44 Recommended Readings from Demos Medical Publishing ( Gingold J. Mental Sharpening Stone: Managing the Cognitive Challenges of Multiple Sclerosis LaRocca N. Cognitive Challenges: Assessment and Management. In R. Kalb (ed.) Multiple Sclerosis: The Questions You Have; The Answers You Need (4th ed.) LaRocca N & Kalb R. Multiple Sclerosis: Understanding the Cognitive Challenges LaRocca N., Kalb R. Multiple Sclerosis: Understanding the Cognitive Challenges

45 Recommended Web Sites