Aging with Multiple Sclerosis Rebecca Gray Programs Services

Aging with Multiple Sclerosis Rebecca Gray Programs & Services Specialist National MS Society / San Antonio 1

Learning Objectives Ø Increase awareness of Multiple Sclerosis Ø Discuss access to care for individuals and their families living with MS by Healthcare Providers Ø Increase knowledge of resources provided by the National Multiple Sclerosis Society 2

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. 3

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 4

Demyelination of the Central Nervous System 5

Your first thought…. . ? 6

And next …. 7

Living with Multiple Sclerosis in 2016 8

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 21 -40 2. 1 million world-wide – estimated over 500, 000 U. S. National costs are over 8 Billion 9

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 10

CLINICAL CHARACTERISTICS • While most diagnosed 20 -40; Older adults can be diagnosed in their 50 s • 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 11

Comorbidities…………. • • 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 12

Which comorbidities are more frequent in MS? Hypertension Diabetes Heart disease Fibromyalgia Depression Anxiety Chronic lung disease* 13

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. 14

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. 15

(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 16

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 17

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 common 3 – Depression and anxiety (>50% and common in support partners as well) – Impact Qo. L, self-care (↑ co-morbidities), planning, problemsolving, communication, relationships, other MS symptoms 18

What should optimal care look like? • Education for individuals, families and healthcare providers • Early and ongoing screening 4 -5 • Effective management of mood changes 2 • Compensatory strategies for cognitive challenges 6 • 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 19

Psychological Functioning: Always include Mental Health Assessment 20

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 21

Families Living with Advanced MS 22

Isolation? 23

Overload? 24

Caregivers • Caregiver ‘burden’ objective and subjective – Subjective: higher risk of depression and reduced Qo. L (Aronson, 1997) • • 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 25

What should optimal care and services look like? • • 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 26

What are the challenges? • • • Need for more HCP training Loss of contact with neurologist Societal disregard Difficult getting help at home Financial drain on family 27

UNMET NEEDS • • 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 28

Recommended Intervention • Encourage Assistive Devices Fall Prevention • Interdisciplinary Collaborations • Caregiver Support • Practical Strategies • Cognitive Functioning Screening • Mental Health Assessment 29

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 30

Generativity* “GIVING BACK” – Finding Purpose *Being Mortal by Atul Gawande, M. D. 31

REMEMBER: The National MS Society • • Website Health Professional Resources Direct Support for Individuals with MS & their Families Bike MS: October 1 -2, 2016 & Walk MS – March 2017 • • 1 -800 -344 -4867 rebecca. gray@nmss. org Direct Line: 210 -694 -3249 National MS Society – San Antonio Office 9830 Colonnade Blvd. Suite 130, San Antonio, TX 32

Questions? 33