SERVING INDIVIDUALS WITH MULTIPLE SCLEROSIS IN THE HOME Guidelines and Recommendations for Home Care Providers and Personal Assistants SERVING INDIVIDUALS WITH MULTIPLE SCLEROSIS IN THE HOME: Guidelines & Recommendations for Home Care Providers and Personal Care Assistants Editors: Dorothy E. Northrop, MSW, ACSW Debra Frankel, MS, OTR CONTENTS Contributors/Reviewers .................................................................................................... 6 Section 1: Introduction ...................................................................................................... 7 Home Health Care for Individuals Living With MS .................................................. 8 The Home Care Team .................................................................................................... 12 What is Multiple Sclerosis? ........................................................................................... 13 Section 2: Clinical Issues and Symptom Management ....................................... 17 Balance Problems ........................................................................................................... 18 Bladder Dysfunction ...................................................................................................... 19 Bowel Dysfunction ......................................................................................................... 21 Cognitive Changes ......................................................................................................... 24 Fatigue ...............................................................................................................................25 Hearing Loss ..................................................................................................................... 27 Pain .....................................................................................................................................29 Respiratory Muscle Weakness ..................................................................................... 31 Seizures .............................................................................................................................. 32 Sensory Disturbances .................................................................................................... 33 Sexual Dysfunction ........................................................................................................ 35 Spasticity ...........................................................................................................................36 Speech Problems ............................................................................................................39 Swallowing Difculties ..................................................................................................40 Vision Defcits .................................................................................................................. 42 Weakness ..........................................................................................................................43 Section 3: Assessment ......................................................................................................45 Section 4: Primary Health Care Needs ......................................................................49 Section 5: Daily Care Issues ........................................................................................... 55 Section 6: Safety .................................................................................................................63 Addressing Safety Issues ..............................................................................................64 Developing an Emergency Plan .................................................................................65 4 SERVING INDIVIDUALS WITH MULTIPLE SCLEROSIS IN THE HOME Section 7: Emotional and Family Issues .................................................................... 67 Family and Caregiver Issues .........................................................................................68 Emotional Issues..............................................................................................................69 Depression ........................................................................................................................ 70 Afective Disorders ......................................................................................................... 71 Finding New Meaning for Concepts of Self, Independence, and Control ......72 Emotional Issues Related to Seeking Home Care Services .................................72 Risk of Abuse and Neglect ...........................................................................................73 Section 8: Rehabilitation ................................................................................................77 Rehabilitation Referral ...................................................................................................78 Exercise ..............................................................................................................................79 Adaptive Equipment ......................................................................................................80 Use of Mobility Devices .................................................................................................80 Wheeled Mobility ........................................................................................................... 81 Section 9: Wellness and Community Integration .................................................83 Health Promotion and Wellness .................................................................................84 Community Resources ..................................................................................................87 Transportation .................................................................................................................87 Appendix A: Disease-Modifying Medications for MS .........................................89 Appendix B: Catheter Care .............................................................................................99 Appendix C: Braden Scale for Predicting Pressure Ulcer Risk ......................105 Appendix D: Intrathecal Baclofen Therapy ........................................................... 111 Appendix E: Emergency Preparedness ................................................................... 117 Appendix F: Financial Aspects of In Home Care .................................................123 Appendix G: The Need for Rehabilitation in MS .................................................129 Appendix H: Resources ..................................................................................................133 GUIDELINES AND RECOMMENDATIONS fOR HOME CARE PROVIDERS & PERSONAL CARE ASSISTANTS 5 CONTRIbUTORS/REVIEWERS National MS Society Home Care Services Task Force Barbara Bernbaum Debra Frankel, MS, OTR Janie Brunette, RN, MSN Diann Geronemus, LCSW Linda Y. Buchwald, MD Kent C. Griswold, PhD Tami L. Caesar Nancy Holland, EdD, RN, MSCN Mary Carr, RN, MPH J. Richard Homlar, PT Susan Cohen, MSW, ACSW, LCSW-C Ann B. Howard, MA Mike Corrao Maureen Howard, RN, BS Kevin Dougherty, MA, LPC Peggy Neufeld, PhD, OTR/L, FAOTA Diane Etienne Faxon Margie O’Leary, RN, MSN, MSCN Anna Fay Dawn Seibel, RN, BSN, HCS-D Rachael Stacom, RN, BSN, MSCN Reviewers Jed D. Johnson, MBA, MSW, Assistant Vice President, Adult and Senior Services, Easter Seals, Melissa Potts, BSN, RN Program Coordinator, Easter Seals National Multiple Sclerosis Society © 2010 Disclaimer The content of this document is based on best practices and clinical experience of health care professionals specializing in the care of people with multiple sclerosis. It is intended to provide a guide for serving people with MS in the home setting, but is not meant to substitute for, or to supersede, individualized physician treatment and advice. 6 SERVING INDIVIDUALS WITH MULTIPLE SCLEROSIS IN THE HOME Section 1 INTRODUCTION This document was developed by the National Multiple Sclerosis Society to be a practical resource to home care providers involved in the daily care of persons living with multiple sclerosis (MS). It can serve as a resource to home care agency administrators and nurses, home health care aides, personal care attendants, in-home respite workers, private duty nurses, and others who want to learn more about the disease to better understand and assist their clients, whether on an acute, short-term or chronic long-term basis. These guidelines, while addressing clinical and personal care issues specifc to MS, could also apply to other chronic illnesses and/or disabilities as well. The National MS Society is a leader in the initiation, support, and promotion of high quality, age-appropriate care options for people living with MS. Consistent with this responsibility, the Society brought together an expert panel of National MS Society staf and specialists in the felds of neurology, nursing, social service, rehabilitation, and home care to identify the key components of care for persons with MS receiving services at home. This task force, that also included people with MS and caregivers, contributed knowledge and clinical expertise to the preparation of this document. GUIDELINES AND RECOMMENDATIONS fOR HOME CARE PROVIDERS & PERSONAL CARE ASSISTANTS 7 HOME HEALTH CARE FOR INDIVIDUALS LIVING WITH MS While some of the symptoms of MS are seen in other disorders and may be familiar to home care staf, MS presents unique challenges to the individual with MS and to his/her caregivers. It is important that care providers are aware of the ways these symptoms present in persons with MS, how they afect the individuals’ day-to-day life, potential treatments, and strategies for management. These guidelines provide recommendations that are intended to promote the independence, personal decision making, wellness, and dignity of the individual with MS. Although, the home care plan focuses on the person with MS, it must also involve family members and their network of friends and neighbors. Home care should facilitate self-direction—allowing the person with MS to be “captain of his/her ship”. To the extent possible, it should aim to enhance self-image and self-esteem, and maximize a sense of control over one’s life. Note: This document will be used by a wide range of home health care staf. Some may have an extensive clinical background, others social service expertise, and still others direct personal care experience. Therefore, the way this document is used will vary from reader to reader. What Are Our Assumptions About Home Care Services? Home care is intended to provide an individual who is living at home with individualized services that are developed collaboratively with him/her and the family to foster health and quality of life. Services that may be provided in the home include: ∫ Health-related services (e.g., skilled nursing, medication management). ∫ Social services (e.g., family and personal support/counseling, facilitating access to social and recreational activities, care management). ∫ Personal care services (i.e., assistance with activities of daily living). ∫ Homemaker and chore services (e.g., assistance with laundry, meal preparation). 8 SERVING INDIVIDUALS WITH MULTIPLE SCLEROSIS IN THE HOME ∫ Rehabilitation services (e.g., physical, occupational, speech therapies, durable medical equipment). ∫ Child care (special arrangements are generally required and availability and coverage vary from state to state). What Do We Know About People with MS Seeking Home Care Services? Research has been conducted comparing residents with MS and elderly residents living in nursing homes. Although similar studies have not been conducted in other long-term care settings, it is likely that the results of such research would be similar. Therefore, compared to the elderly home care client, individuals with MS are more likely to: ∫ Be younger. ∫ Be more mentally alert. ∫ Be more physically dependent. ∫ Experience greater incidence of depression. ∫ Have a larger network of family and friends involved in their daily lives. ∫ Have a greater need for socialization and mental stimulation. In addition to these diferences, younger people with disabilities experience a diferent set of losses due to where they are in their life cycle—work, building fnancial security, familial role, ability to actively parent, and loss of or diminished sexual functioning. Client Profles Here are the stories of two people living with MS who use home health or personal assistance services (PAS). These profles illustrate some of the situations and needs that may be characteristic of individuals with MS who use home health services. GUIDELINES AND RECOMMENDATIONS fOR HOME CARE PROVIDERS & PERSONAL CARE ASSISTANTS 9 Emma: Emma is a 59-year-old widow who lives alone in an apartment in a suburban neighborhood. She was diagnosed with MS at age 29 and while her disease slowly progressed over time, she raised two children and worked as an accountant until 3 years ago when her memory and ability to drive safely declined and her increased fatigue made it impossible for her to continue. Her adult children live out of town, but she has a sister and brother-in-law nearby who help out on the weekends and help with shopping and errands. She uses a manual wheelchair for mobility indoors and a scooter for long distances, and has extreme fatigue. Her immediate memory is poor and she experiences depression. Emma receives Social Security Disability Insurance (SSDI) and Medicare. She does not qualify for ongoing home health services through Medicare, so she pays for her home health aide with private, personal funds. She receives home health care every weekday for 2 hours in the morning and 2 hours in the evening. Her aide assists her with a shower, dressing and grooming in the morning, and preparation for bed in the early evening. Her aide puts out her medications each day. Emma is able to prepare simple meals on her own. Lately she has had a couple of hospitalizations for severe urinary tract infections. Following the hospitalizations Emma has experienced increased weakness and dependence in activities of daily living (ADLs). Medicare covered physical therapy through a home health agency immediately following the hospitalizations but discontinued the services as she improved. The services Emma receives are enabling her to stay at home and she hopes to continue to do so as long as she can manage. James: James is a 34-year-old single male who was diagnosed with MS at 27. The course of his disease has been rapidly progressive. He uses a power wheelchair for mobility, wears a catheter, has severe spasticity that makes transfers a challenge. He is dependent for all activities of daily living (ADLs) and instrumental activities of daily living (IADLs). ADLs that are impacted include walking, bathing, dressing, grooming, transferring, toileting, etc. IADLs include meal preparation, laundry, check writing, grocery shopping, etc. James receives Medicaid and SSI for personal care assistance through his state’s Medicaid personal care assistant (PCA) program. He receives 8 hours of personal care and IADL assistance each day including weekends from three assistants whom he has hired and trained himself. He has a large network of friends who visit and call regularly and he volunteers one afternoon per week at the local Independent Living Center. James’ home is outftted with environmental controls that operate his stereo, TV, phone and front door via voice commands. By helping him manage medical and personal care needs, his personal assistants help him to be as independent as possible. 10 SERVING INDIVIDUALS WITH MULTIPLE SCLEROSIS IN THE HOME