Transcript Aging with Multiple Sclerosis

Aging with
Multiple Sclerosis
Rebecca Gray
Programs & Services Specialist
National MS Society / San Antonio
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Learning Objectives
 Increase awareness of Multiple Sclerosis
 Discuss access to care for individuals and
their families living with MS by Healthcare
Providers
 Increase knowledge of resources provided
by the National Multiple Sclerosis Society
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Mission Statement
People affected by MS can live
their best lives as we stop MS in
its tracks, restore what has been
lost and end MS forever.
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Definition of Multiple Sclerosis (MS)
A neurodegenerative autoimmune disease of the Central
Nervous System characterized by recurrent episodes of
inflammation and demyelination, followed by loss of axons and
neurons.
OR
Multiple sclerosis involves an immune-mediated process in
which an abnormal response of the body’s immune system is
directed against the central nervous system (CNS), which is
made up of the brain, spinal cord and optic nerves. The exact
antigen — or target that the immune cells are sensitized to
attack — remains unknown, which is why MS is considered by
many experts to be "immune-mediated" rather than
"autoimmune.“
Simply Put: Unable for the brain (CNS) to send and receive
messages!
Unpredictable Disease
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Demyelination of the Central Nervous System
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Your first thought…..?
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And next ….
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Living with Multiple Sclerosis in 2016
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Epidemiology
More women
are diagnosed
than men 3:1
ratio
Most common
cause of
neurological
disability in
young adults
Compared with direct all-cause
medical costs for other chronic
conditions – MS ranked second
behind Congestive Heart Failure
Annual Costs per patient $8,500 $54,000
70% manifest
symptoms
between 2140
2.1 million
world-wide –
estimated
over 500,000
U.S.
National costs are over 8 Billion
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Demographic Characteristics
• > 55 ages and above are 72% Female, 92%
Caucasian, 43.9% had graduated college
• Marital Status 25% widowed
• Live alone
• Employment status reduced
• Income reduced
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CLINICAL CHARACTERISTICS
• While most diagnosed 20-40; Older adults can be
diagnosed in their 50s
• Older MS populations can include living with MS
longer than 20 years
• Older individuals less likely to have ongoing MS
care
• Two-Thirds likely to be Primary Progressive MS
Unpredictable Disease
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Comorbidities………….
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The MS population is aging
Comorbidities increase with age
Increasingly common in MS
Comorbidities are associated with delay of diagnosis
and delay of treatment initiation
• Comorbidities are associated with more hospitalization
• Comorbidity impacts MS progression, mortality, and
quality of life
Adapted with permission from WJ Culpepper 2016
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Which comorbidities are more frequent in MS?
Hypertension
Diabetes
Heart disease
Fibromyalgia
Depression
Anxiety
Chronic lung disease*
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Other Health Issues…
Let’s Talk: Bladder, Bowel and Skin
Issues
• Neurogenic Bowel Dysfunction (NBD):
Altered bowel habits
• Results: Constipation, bloating, diarrhea (fecal
incontinence). Fecal impaction leads to chronic overdistention of bowel, GERD, diverticulosis and
megacolon.
• Neurogenic Bladder Dysfunction causes either a
bladder with poor emptying or a spastic bladder with
sudden loss of large amounts of urine.
• Both present additional problems for skin integrity and
increase both caregiver burden and social isolation.
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What do we know? (continued)
• Breaks in skin integrity from incontinence is primarily
an Outside-In issue. Starts on top layer from irritation.
Barrier creams are essential, as are highly absorbent
adult briefs or pads.
• Doubling up briefs or extra liners within briefs
interferes with the wicking action, interferes with
pressure relief and increases shear injury but is a
common practice in the home setting.
• Catheters can cause breaks in skin from rubbing or
pressure if not properly secured
• Skin breaks down much more quickly in warm moist
conditions or when a person is febrile.
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(more) What do we know?
• Pressure injury to the skin is generally an inside out
process. The blood vessels are “pinched” between
bone and soft tissues.
• Pressure injury prevalence (NPUAP) averages 15%
both at home and in nursing homes. 9% in hospitals.
• Multiple international studies are finding that turning
schedules are NOT that effective in prevention of skin
injury.
• It’s the pressure relief from mattresses and cushions
that make the difference
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What should optimal care look like?
• Minimize incontinence/maximize control over when
defecation/voiding occurs.
• Balances risk and benefit of medications for other
symptoms and their impact on the bowel/bladder
• Support as the disease progresses and adjustments
are needed.
• TIMELY surgical intervention when needed.
• Skin integrity is maintained
• QOL is optimized
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Cognition and Mood
• Cognitive changes are common (50-65%)1
– Affect information processing, memory, attention, executive
functions (planning, problem-solving, judgment, decisionmaking), visual-spatial skills
– Impact self-care (↑ co-morbidities), relationships
– Along with bowel/bladder and ambulation / self-care, are
primary risk factor for nursing home admission.2
• Mood changes are common3
– Depression and anxiety (>50% and common in support
partners as well)
– Impact QoL, self-care (↑ co-morbidities), planning, problemsolving, communication, relationships, other MS symptoms
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What should optimal care look like?
• Education for individuals, families and healthcare
providers
• Early and ongoing screening4-5
• Effective management of mood changes2
• Compensatory strategies for cognitive challenges6
• Care coordination services
• Inclusion of support partners/family members in
treatment planning
• Support for caregivers
• End-of-life planning that takes mood/cognition into
account
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Psychological Functioning: Always include
Mental Health Assessment
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What are the challenges?
• Cognition and mood issues are invisible
– Cognitive deficits may be a person’s most disabling symptom
– Mood issues can make other symptoms feel worse
• Disabling physical symptoms get more attention
– Depression is taken as a given rather than a condition in need
of treatment
– Untreated depression contributes to morbidity/mortality
– Lack of accepted treatments for cognitive problems
• The needs of caregivers are generally ignored
– “Caregivers are our invisible patients”6
• Mental health providers are in short supply
• Coordination of care/services is often lacking
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Families Living with Advanced MS
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Isolation?
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Overload?
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Caregivers
• Caregiver ‘burden’ objective and subjective
– Subjective: higher risk of depression and reduced QoL
(Aronson, 1997)
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Difficulty navigating health system (Cheung & Hocking, 2004).
Increased disability = new problems
Patients and families give up on neurologists
Home care is costly; care left to family members
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What should optimal care and services
look like?
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Unit of care = Family
Partner present in physician/PA appointments
Psychosocial evaluation and support for family
Assistance learning transfers, bowel/bladder
management
• Reduce isolation through connections
• Monitor health and mental health of caregivers
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What are the challenges?
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Need for more HCP training
Loss of contact with neurologist
Societal disregard
Difficult getting help at home
Financial drain on family
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UNMET NEEDS
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Physical Therapy – Rehab Therapy
Occupational Therapy
Eye Doctors
Dental Care
Health Insurance
Transportation
Neurologists and other Sub Specialties that
specialize in MS Care
• Wellness and Health Promotion
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Recommended Intervention
• Encourage Assistive Devices
Fall Prevention
• Interdisciplinary Collaborations
• Caregiver Support
• Practical Strategies
• Cognitive Functioning Screening
• Mental Health Assessment
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How does the National MS Society help?
Tier 3 – Case
Management
Tier 2 – Service
Management to include
Direct Financial
Assistance
Tier 1 – Information and Referral
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Generativity*
“GIVING BACK” – Finding Purpose
*Being Mortal by Atul Gawande, M.D.
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REMEMBER:
The National MS Society
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Website
Health Professional Resources
Direct Support for Individuals with MS & their Families
Bike MS: October 1-2, 2016 & Walk MS – March 2017
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1-800-344-4867
[email protected]
Direct Line: 210-694-3249
National MS Society – San Antonio Office
9830 Colonnade Blvd. Suite 130, San Antonio, TX
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Questions?
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