1. The Challenge of Progressive MS May 19, 2012 Dorothy Northrop, MSW, ACSW VP, Continuum of Care Initiatives

2. Agenda for Today The Journey to Progression Managing the Disease Emotional Challenges Impact on the Family Changing Roles and Relationships Making Decisions as Needs Change Nursing Home Life Moving Forward

3. Journey to Progression Differs Transition from Relapsing-Remitting  Disease-modifying therapies an option  Remissions keep alive hope of ‘beating the disease’  Transition to progressive course often accompanied by a sense of ‘failure’ Disease Progression from onset  No FDA medications/ all focused on R/R  On-going losses; no ups and downs

4. Challenge of Progression the Same Worsening neurologic function Few or no recovery or remission periods when major symptoms abate Symptoms need to be dealt with on a daily basis Symptoms often lead to increasing disability

5. Clinically Managing the Disease Having a neurologist and other health care professionals that understand MS Being educated about MS and optimizing symptom management strategies Accessing both quality MS care and primary health care Optimizing assistive technology Preventing unnecessary complications Engaging in wellness activities

6. Emotional Challenges Fear of the unknown On-going change and loss Anger and frustration Not feeling in control Increasing dependence on others The impact of two very common symptoms, depression and cognitive changes

7. Depression Differs from normal grieving People with MS at greater risk than the general population or those with other chronic conditions Over 50% will experience a depressive episode Depression is both situational and physiological Medication and therapy bring positive results

8. Cognitive Changes 50-60% of people with MS experience cognitive change  Not dementia  Usually affects memory, information processing, executive functioning  Not related to level of physical disability Cognitive changes and fatigue are primary reasons for leaving work Sometimes medications can impact cognition Compensatory strategies are the most effective interventions

9. Addressing the Emotional Challenges Acknowledging and talking about the challenges with others who understand Redefining control and independence Redefining self, finding and nurturing an MS-free zone Balancing the need for safety with the need for independence Nurturing what gives your life meaning

10. Impact on the Family Family members cope in different ways Family members are in different stages of life and have different life goals and expectations Family members have different histories with illness Guilt and anxiety can impact everyone Financial concerns can be significant

11. Changing Roles & Relationships MS impacts the rhythm of the family Roles begin to shift at diagnosis & continue Misunderstandings happen Renegotiation becomes an on-going process Stress and anxiety build…on-call state Caregiver role of family members evolves Family life becomes centered around MS

12. Addressing Family Issues Knowledge about MS important for the whole family Open communication and respecting each other’s feelings and needs is critical Reaching out to healthcare professionals can help families get through the challenges of the disease Problem solving together brings the best results Networking with other families dealing with similar issues can be very supportive Seeking financial expertise to minimize financial impact

13. Monitoring Quality of Life Quality of life depends on the following needs being met: Availability of quality hands-on assistance A safe environment Accessibility Appropriate mobility equipment and other assistive technology Socialization Pursuit of interests and activities that give value to life

14. Addressing Changing Needs When living at home the focus is usually on building up family care, modifying/changing housing for accessibility, and seeking more personal assistance services If more support and socialization is needed, adult day services and/or assisted living may be sought When complex care needs generated by MS make living at home no longer a viable alternative, moving to a nursing home often becomes necessary. No matter what the setting, when needs critical to quality of life are not being met, it is time to do some thinking and planning.

15. Triggers to Moving to a Nursing Home Significant functional decline and/or challenging clinical issues that are beyond a family’s capacity to address 24 hour skilled care and monitoring required to address symptoms such as bowel or bladder incontinence, nutritional compromise, respiratory issues or significant cognitive issues Serious complications such as skin breakdown and urinary tract infections become increasingly difficult to manage at home Significant safety and/or accessibility issues in the home Feelings of isolation due to limited opportunity for socialization Health issues or life events impact family’s ability to provide care Family members want to be relieved of caregiving duties so they can return to being spouses, parents, or children again

16. Challenges of Nursing Home Life Separation from loved ones and ‘home’ Limited personal and private space Staffing issues and challenges Less personal attention Preserving independence and dignity Sadness…fellow residents and friends often dealing with difficult or life-threatening health issues Tension between staff responsibility to get tasks done and resident desire to do things for themselves Foods not necessarily cooked to personal taste

17. Benefits of Nursing Home Life Professionals available to provide complex, multi-disciplinary care Social enrichment: a community with whom to connect and share activities and experiences Companionship; less isolation and loneliness Access to assistive technology to promote independence Family members now able to give up their daily caregiving roles and become spouses, parents, and children again There is someone to plan activities and arrange for outings There is opportunity to grow, learn, enjoy new experiences, and contribute

18. Hope for the Future Progressive/advanced MS getting much more attention Research is aggressively looking for answers More is being written by and for people living with progressive disease Assistive technology is growing rapidly and expanding opportunities for connection and independence Quality age-appropriate adult day and nursing home programs are growing The concept of “Person and Family-Centered Care’ is expanding and generating a change in nursing homes from a medical to a home-like model You are part of Inglis, a leader in driving innovation to meet the needs of younger people with MS and other disabilities.