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Navigating Alzheimer's and Related Dementias: a Roadmap for Families

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Navigating Alzheimer's and Related Dementias: a Roadmap for Families Navigating Alzheimer's and Related Dementias A Roadmap for Families Volume 1 | 2019 Index 0 Forward 6 1 Overview of Dementia 7 1.1 Prevalence 1.2 What is Alzheimer’s? 1.3 Causes and Risk Factors 1.4 10 Warning Signs You Should Know 1.5 Visual Representation of Alzheimer's Disease 1.6 Stages of Alzheimer’s Disease 2 Diagnosis and Treatment 22 2.1 Getting a Diagnosis 2.2 Medication Intervention 2.3 Medications and Overmedication 2.4 Behavioral Intervention 3 Newly Diagnosed 37 3.1 Telling Others About a Diagnosis 3.2 Coping with Dementia 3.3 Living Well 3.4 Making A Plan 3.5 Safety 3.6 Advocacy 4 Health Care Considerations 46 4.1 Capacity for Health Care Decisions 4.2 Advance Directives 4.3 Health Care Surrogate 4.4 Caregiver Act in Mississippi 4.5 Family Communication about Health Care Values 4.6 Treatment Withdrawal / Refusal 5 Hygiene and Personal Care 50 5.1 Grooming 5.2 Dressing 5.3 Incontinence 5.4 Bathing 5.5 Eating 6 Making Every Day Count 60 6.1 Effective Communication 6.2 Planning Daily Activities 6.3 Visiting 6.4 Going Out 6.5 Adult Day Care and Group Respite 7 Holiday Hints 76 7.1 Caregiver 7.2 Person with Dementia 7.3 Visitors 7.4 Gift-giving Ideas 8 Safety 80 8.1 Home Safety 8.2 Travel Safety 8.3 Driving 8.4 Wandering 8.5 Alert Systems 8.6 Disaster Preparedness 8.7 Advanced Preparation 8.8 Tips for When You are Relocated 8.9 Protecting Against Exploitation 9 Understanding Behavior Changes 95 9.1 Repetition 9.2 Hallucinations 9.3 Aggression or Combativeness 9.4 Suspicious Thoughts 9.5 Sexuality 9.6 Sundowning 9.7 Rummaging and Hiding Things 10 Late Stage Care 105 10.1 Encouraging Food and Liquid Intake 10.2 Use of Gastrostomy or Feeding Tubes 10.3 Maintaining Healthy Skin and Body 10.4 Maintaining Bladder and Bowel Function 10.5 Decreasing the Risk of Infections and Pneumonia 10.6 Recognizing Pain or Illness 10.7 Staying Connected to the Person with Alzheimer’s or Dementia 10.8 Deciding to Move Your Loved One to a New Home 10.9 Deciding on Hospice Care 10.10 How does Alheimer's or Dementia Cause Death? 11 Finding In-Home Care 113 11.1 Steps to Finding Care at Home 11.2 Types of Home Care 12 Choosing a New Home 117 12.1 Begin with a Plan 12.2 Determine the Type of Setting Preferred 12.3 Making Site Visits 13 Caring for the Caregiver 127 13.1 Signs of Caregiver Stress 13.2 Helping Children Understand Alzheimer’s Disease 14 Healthy Aging 134 14.1 Brain Health 14.2 Nutrition 14.3 Physical Health 14.4 Social Activities and Engagement 14.5 MS State Deptment of Health Motivated to Live a Better Life Chronic Disease Self-Management Program Fact Sheet 15 Research 143 15.1 Treatment Pipeline 15.2 Mississippi Leads the Way 15.3 Participating in Clinical Trials 16 References 149 17 Information and Referral Services 150 17.1 Geriatricians 17.2 Psychiatrists 17.3 Neurologists 17.4 Counseling Services 17.5 Sitter Services & Home Health 17.6 Hospice 17.7 Adult Day Care & Group Respite Centers 17.8 Nursing Homes (with Alzheimer's Care Units) 17.9 Personal Care Homes & Assisted Living Facilities 17.10 Nursing Homes 17.11 Alzheimer's Geriatric & Psychiatric Units 17.12 Mississippi Legal Services 17.13 Mississippi Resources 17.14 Alzheimer's and Dementia Research Centers 17.15 Area Agencies on Aging 17.16 National Resources 17.17 Helpful Websites 17.18 Suggested Reading 17.19 Suggested DVDs 17.20 GPS Devices 17.21 Phone Apps Foreword Navigating Alzheimer’s and Related Dementias – A Roadmap for Families is a consolidated source to assist families as they live through the disease process. It was designed primarily for family caregivers and is intended to supplement rather than replace the recommendations of physicians and other health care professionals providing direct care to you or your loved one. The information contained in Navigating Alzheimer’s and Related Dementias is a compilation of publications from the National Institutes of Health, the National Institute on Aging, the Centers for Disease Control and Prevention, and other reputable sources. Contributors to the guide include Alzheimer’s Mississippi, The MIND Center at the University of Mississippi Medical Center, and The Mississippi Department of Mental Health. Many thanks to the following individuals who dedicated countless hours to the development of this resource: Kathy Van Cleave, Denise Lafferty, Patty Dunn, TJ Harvey, Sue Ann Meng, Melora Jackson, Rebecca Brookshire, Andi Agnew, Jennifer Knight, Maria Allen, and Virgilio Guardado. Every effort has been made to assure the accuracy of resources known to the collaborators at the time of this printing. Please direct any questions you might have, or recommended additions or changes, to one of the contributors listed below. This resource is made possible through funding from the Mississippi Department of Human Services, Mississippi Department of Mental Health, Mississippi State Department of Health – Motivated to Live a Better Life Program, Mississippi Health Care Association, Independent Nursing Home Association, and The MIND Center at the University of Mississippi Medical Center. • Alzheimer's Mississippi • Mississippi Department 855 South Pear Orchard Road of Mental Health Suite 501 239 North Lamar Street Ridgeland, MS 39157 Jackson, MS 39201 www.alz.org www.dmh.ms.gov (601) 987-0020 (877) 210-8513 • The MIND Center University of Mississippi Medical Center (UMMC) 2500 North State Street Jackson, MS 39216 www.umc.edu/mindcenter (601) 815-4237 6 1. Overview of Dementia 1.1 Alzheimer’s disease (AD) was identified over 100 years ago but research into Prevalence its causes, risk factors and symptoms has progressed in only the last 35 years. Today, this progressive and irreversible brain disease is recognized as one of the most devastating maladies of our time. Alzheimer’s disease causes a steady decline in memory and is the leading type of dementia or the loss of intellectual abilities, thinking, remembering and reasoning – severe enough to interfere with a person’s activities of daily living at work or at home. Overview of DementiaOverview of • Over 5 million Americans are living with Alzheimer’s disease, including an estimated 53,000 in Mississippi. • By 2050, that number is projected to rise to 16 million Americans. • Alzheimer’s disease is: - One of the top 10 causes of death in the United States. - The 6th leading cause of death among US adults. - The 5th leading cause of death among US adults aged 65–85 years. - The only cause of death among the top 10 in the US without a way to prevent it, cure it, or even slow its progression. Death rates for Alzheimer’s disease are increasing, unlike heart disease and cancer death rates that are on the decline. Dementia, including Alzheimer’s disease, has been shown to be underreported in death certificates and therefore the proportion of older people who die from Alzheimer’s may be considerably higher. The current growth in both the number and proportion of older adults in America is on the rise. This growth in numbers is driven by Americans living longer and growth in proportion due to the baby boom generation. 7 According to the Centers for Disease Control and Prevention (“CDC”), the baby boom generation has begun to reach the age range where the risk of developing Alzheimer’s disease is elevated. In America in 2016, over 15 million families and friends provided 18.2 billion hours of unpaid care to those with Alzheimer's disease and other demetias - care valued at $220.1 billion. In Mississippi in 2016, over 206,000 families and friends provided an estimated 234 million hours of unpaid care to those with Alzheimer's disease and other dementias - care valued at $2.9 billion. 1.2 Alzheimer's disease (pronounced AHLZ-hi-merz) is one of several disorders What is that cause the gradual loss of brain cells. The disease was first described by Alzheimer’s? German Physician Dr. Alois Alzheimer in 1906. Although the disease was once considered rare, research has shown that it is the leading type of dementia. 1.2.1 All dementias are now identified as Major or Mild Neurocognitive Disorders Dementia in the Diagnostic and Statistical Manual of Mental Disorders Version 5 (DSM5). The DSM5 includes all diagnosis references for mental or brain disorders. Overview of DementiaOverview of Dementia is an umbrella term for several symptoms related to a decline in thinking skills. Common symptoms include a gradual loss of memory, problems with reasoning, judgment, disorientation, difficulty in learning, loss of language skills, and decline in the ability to perform routine tasks. People with dementia may exhibit changes in their personalities and behavior such as agitation, anxiety, delusions (believing in a reality that does not exist), and hallucinations (perceiving things that do not exist). All types of dementia involve mental decline that: • occurred from a higher level (for example, the person didn’t always have a poor memory) • is severe enough to interfere with usual activities and daily life • affects more than one of the following four core mental abilities: – recent memory (the ability to learn and recall new information) – language (the ability to write or speak, or to understand written or spoken words) – visuospatial function (the ability to understand and use symbols, maps, etc., and the brain’s ability to translate visual signals into a correct impression of where objects are in space) – executive function (the ability to plan, reason, solve problems and focus on a task) 8 1.2.2 Several disorders similar to Alzheimer’s can cause dementia.
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