Starting with a Brief Review – Grieving is Healthy

1. Training for Self-Help Group Leaders:Mood & CognitionPart IIRosalind Kalb, PhDSeptember 22, 2010

2. Starting with a Brief Review – Grieving is Healthy

3. Depression is Not Healthy • The risk of major depression in MS is 50 percent—higher than in the general population or in other chronic diseases. • Depression is a symptom of MS as well as a reaction to its challenges. • It may appear as irritability, loss of interest, sadness, behavior change. • Depression is under-diagnosed and under-treated in MS. • Depression is a treatable with medication, psychotherapy, and exercise. • Depression affects cognition!

4. What We Know about Suicide in MS • The suicide risk in MS is much higher than in the general population. • The risk factors for suicide include: • Depression • Social isolation • Recent loss of function • Moderate disability • Alcohol abuse

5. Anxiety Plays a Role Too • Anxiety affects at least a quarter of people with MS. • It may lead to an increase in physical complaints, suicidal thinking, and alcohol consumption. • Anxiety is related to the unpredictability and uncertainty of MS symptoms, course, and outcomes. • It responds well to emotional support, active problem-solving, and medication, if needed.

6. Other Mood Changes Also Occur • Moderate to severe shifts in mood may occur, including ups, downs, and a short fuse. • Uncontrollable laughing and/or crying (pseudobulbar affect) occurs in about 10% of people.

7. Cognitive Changes are an Additional Challenge • More that 50% of people with MS experience cognitive changes. • Changes can occur at any point in the disease course, even as a first symptom. • While many functions can be affected, some are more likely to be affected than others. • Recent memory, attention/concentration, information processing are the most common. • Compensatory strategies are essential. • Adequately treating depression may improve cognitive functioning.

8. The Role of the Self-Help Group The self-help group is a place to: • Share helpful information and coping strategies • Give and receive emotional support • Engender hope • Develop personal insights • Feel less isolated – create personal connections • Feel more empowered The support group cannot provide psychotherapy or take the place of professional help

9. Optimizing Your Role as a SHG Leader • Take care of yourself—helping yourself is the first step to helping others. • Remember that you’re a member as well as a leader of the group. • Work with a co-leader whenever possible. • Know your limits/maintain your boundaries. • Use the information in your SHGL manual. • Engage chapter staff for help with problem situations.

10. Some Challenges You Identified • Dealing with negativity • Stopping the non-stop talker • Giving and getting support in the group • Staying positive when you’re feeling negative • Providing extra support to someone in need • Dealing with depression and suicidal feelings—someone else’s or your own • Dealing with cognitive challenges • Avoiding burnout

11. What They All Have in Common • Figuring out how to balance needs that sometimes conflict: • Your own • The needs of the group • The needs of an individual

12. Addressing Your Own Needs: • Isn’t selfish! • Is the first step to being a productive group member AND an effective group leader • Requires some important steps: • Acknowledging your feelings and needs to yourself and others; • Recognizing your own limitations • Making sure that you’re tapping the resources you need • Working with a partner

13. The Needs You Identified • Support related to your own symptoms and challenges (physical, cognitive, emotional) • Someone to step in when you’re feeling overwhelmed by your own stuff • Ideas about how to provide more to your group members than you feel able to manage • Help with your own feelings: grief, guilt, anxiety • Strategies for keeping the group upbeat

14. Some Practical Tips • Remember the flight attendant’s message. • Pay attention to you own feelings. • Check your gas tank (energy, emotional reserves) • Get professional help if you need it. • Take time to be a group member as well as a group leader. • The group is for you too.

15. Some Practical Tips • Work with a co-leader to: • Share the work • Help manage the difficult group members • Give each other breaks when needed • Bring in a speaker to address a particular topic • Local clinician to talk about a particular symptom • Chapter staff person to talk about local resources

16. Addressing the Needs of the Group • Requires acknowledgement that over time, the needs of the group are “bigger” than the needs of any single individual • Depends upon a mutually-agreed upon group culture and procedures • Involves limit-setting and reinforcement • Requires being able to exclude someone from a group if necessary

17. Tips for dealing with members who negatively impact the group experience for others The non-stop talker The boring repeater The endless complainer The perpetually angry person The severely depressed person The person who’s always out of synch The person who ignores/refuses help Keeping the group upbeat and positive The Needs You Identified

18. Some Practical Tips • Work with group members to establish group norms: • Culture of the group • Format for group meetings • Expectations for group members’ behavior • Time limits and mechanism for monitoring them

19. Some Practical Tips, cont’d • Identify strategies to enforce the norms • Group feedback to the individual • Private conversations to reinforce the norms and engage the person in solving the problem • Recognition of underlying problem: depression? cognitive problems? difficult personality? • Assistance from Chapter staff

20. Some Practical Tips, cont’d • Encourage the group to develop a strategy for maintaining positive vibes • Encourage open expression of feelings—positive and negative (no Pollyannas allowed) • Encourage each person to leave with at least one action plan (no matter how small) to be implemented before the next meeting • Sometimes a buddy system can be helpful • Celebrate each and every positive step taken by group members

21. Addressing the Needs of the Individual • Providing individuals with opportunities to help develop/maintain/enhance/ the group’s culture • Ensuring that each person has time to speak and share • Creating a climate in which each person feels heard • Providing opportunities for people to gain information/insight/resources/hope • Recognizing individuals who might be in need of support/assistance that is beyond the scope of the group • Resistance to norms • Inability/unwillingness to follow through • Constant belittling of everything and everybody

22. The Needs You Identified • Finding ways to prevent any single person from dominating the group • Supporting someone with extra stresses (e.g., a dual diagnosis, a crisis at home, a new loss of function, a job loss) • Helping the very angry or sad person to get to a more comfortable place • Identifying the at-risk person • Wanting people to leave the group feeling hopeful

23. Some Practical Tips • Establish/maintain group norms. • If necessary, get group buy-in to spend extra time on one person’s issues at a given meeting. • Brainstorm about ways that the group can provide extra support for those going through a difficult time (it’s not all on you!).

24. Some Practical Tips, cont’d • Remember that it often takes just one new resource, one new idea, one new strategy, to make things better. • Remember that it’s OK for group members to be sad and angry; the important thing is to use that energy in a positive way. • Be on the lookout for someone who can’t seem to make use of any helpful, supportive input.