Psychosocial Aspects of Wellness

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

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

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

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

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)

What is normal grieving in MS?

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

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?

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

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)

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

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

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”

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

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”

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

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

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

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

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

Society Resources for Clinicians • MS Clinical Care NetworkorkWebsite: www.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

Recommended Readings Feinstein A. The Clinical Neuropsychiatry of Multiple Sclerosis (2nd ed.).Cambridge: Cambridge University Press, 2007. An 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 (3rd. 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.

Psychosocial Aspects of Wellness