Promoting EmotionalSocial Wellness
for People with MS and
Their Families:
Challenges for
Clinicians
Psychosocial Aspects of Wellness
Intellectual
Spiritual
Emotional
WELLNESS
Physical
Kennedy, P. Adapted from Anspaugh D. et al, 1991
Interpersonal
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 MSfree 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
•
•
•
•
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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
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•
•
•
•
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 Networkork
Website: www.nationalMSsociety.org/MSClinicalCare
Email: [email protected]
 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, highlyreadable, 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. Evidencebased overview of diagnosis and treatment; discussion of psychosocial
impact; vignettes illustrating compensatory strategies.