1. Promoting Emotional- Social Wellness for People with MS and Their Families: Challenges for Clinicians

2. Psychosocial Aspects of Wellness WELLNESS Intellectual Emotional InterpersonalPhysical Spiritual Kennedy, P. Adapted from Anspaugh D. et al, 1991

3. Dilemma #1 The psychosocial aspects of wellness and the barriers to attaining those aspects of wellness are sometimes one and the same

4. Intellectual Challenges for People with MS Dealing with a changing self-image and the perceptions of others  Engagement and intellectual stimulation vs. the patient role (“MS career”)  Employment challenges  Cognitive dysfunction  Personality changes

5. Emotional Challenges for People with MS Dealing with one’s own feelings and the feelings of others  Grief—a “normal” response to MS-related losses (Kalb, 2008)  Stress—daily life stresses are compounded  Depression—25-50% lifetime prevalence (Minden &Schiffer, 1987)  Anxiety—as common but less recognized (Feinstein et al., 1999)

6. What is normal grieving in MS?

7. Interpersonal Challenges for People with MS Dealing with the impact of MS on relationships with family, friends, and strangers  Disclosing MS: the when, why, and how  Avoiding disability stereotypes  Sustaining old relationships; building new ones  Coping with a changing identity, shifting roles  Remaining visible to others

8. Spiritual Challenges for People with MS Finding meaning, direction, and comfort  Who am I now?  What did I do wrong?  Why did this happen to me?  What does this mean for my faith?  What gives me the strength to deal with this?

9. … the part that MS can ’ t touch Every person needs to find his or her MS- free zone

10. Challenges for Carepartners (McKeown, 2008) Intellectual  Two full-time jobs  Loss of time for personal development Emotional  Grief over changes and losses (Buhse, 2008)  Stress related to multiple demands (McKeown et al, 2008)  Anxiety about the unpredictable future (Buhse, 2008)  Depression (Aronson, 1997)

11. Challenges for Carepartners, cont’d Interpersonal  Re-defining the relationship (spouse; parent; child)  Maintaining balance in the partnership  Maintaining social network Spiritual  Who am I now?  Why did this happen to me?  What gives me the strength to deal with this? Physical  Making time for self-care

12. Dilemma #2 The psychosocial elements of wellness are not readily apparent to us; it takes time, effort, and expertise to identify them

13. Challenges for Clinicians: “Diagnose and Adios” was easier Seeing the whole person Intervening early to minimize crises Recognizing barriers:  Don’t ask, don’t tell  Not enough time; not enough resources  It takes a village… Utilizing screening tools Identifying referral options Promoting hope and effective planning Recognizing our “Invisible patients”

14. Dilemma #3 It’s not easy to sort out what’s what

15. Challenges for Clinicians Recognizing that depression is never “normal” (“Who wouldn’t be depressed?!?”) Distinguishing grief from depression Distinguishing symptoms of depression from symptoms of MS Distinguishing cognitive changes from depression Identifying the patient who “aims to please”

16. Challenges to Diagnosing Depression in MS For at least two weeks:  Depressed mood most of the day nearly every day  Markedly diminished pleasure in most or all activities  Significant weight change (>5% up or down 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

17. Dilemma #4 “It takes a village…” but coordinating care for people with MS is harder than herding cats

18. Challenges for Clinicians Finding clinicians with MS expertise in your area Identifying the team “leader” (PCP, ob/gyn, you) Finding time to communicate and collaborate with them Devising a communication system that works for the team Keeping the patient as the central focus

19. Recommended Strategies Teamwork—with other providers, with voluntary health organizations, with pharma Regular visits—every 6-12 months Routine screening assessments Periodic contact with carepartner during office visits to assess informally how things are going Educational materials from the National MS Society and other voluntary health organizations about important psychosocial issues Referral to local chapter

20. Society Resources for Your Patients 40+ chapters around the country Web site (www.nationalMSsociety.org) Access to information, referrals, support (1-800-344-4867) Educational programs (in-person, online) Support programs (self-help groups, peer and professional counseling, friendly visitors) Consultation (legal, employment, insurance, long-term care) Financial assistance

21. Society Resources for Clinicians MS Clinical Care Networkork Website: www.nationalMSsociety.org/MSClinicalCarewww.nationalMSsociety.org/MSClinicalCare Email: healthprof_info@nmss.org  Clinical consultations with MS specialists  Literature search services  Professional publications  Quarterly e-newsletter for healthcare professionals  Professional education programs (medical, rehab, nursing, mental health)  Consultation on insurance and long-term care issues

22. Recommended Readings Feinstein A. The Clinical Neuropsychiatry of Multiple Sclerosis (2 nd ed.). Cambridge: Cambridge University Press, 2007. A n excellent, highly- readable, evidence-based discussion of mood changes and cognitive dysfunction in MS. Kalb, R, Holland N, Giesser B. Multiple Sclerosis for Dummies. Hoboken, NJ: Wiley, 2007. A comprehensive, introductory overview. Kalb, R (ed.). Multiple Sclerosis: A Guide for Families (3 rd. ed). New York: Demos Medical Publishing, 2006. A review of family issues by MS specialist clinicians. LaRocca N, Kalb R. Multiple Sclerosis: Understanding the Cognitive Challenges. New York: Demos Medical Publishing, 2006. Evidence- based overview of diagnosis and treatment; discussion of psychosocial impact; vignettes illustrating compensatory strategies.