Training for Self-Help Group Leaders: Mood & Cognition Part II Rosalind Kalb, PhD September 22, 2010

Starting with a Brief Review – Grieving is Healthy

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!

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

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.

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.

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.

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

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.

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

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

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

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

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.

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

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

The Needs You Identified 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

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

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

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

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

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

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!).

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.