Compendium of Treatment of End Stage Non-Cancer Diagnoses

Transcription

1 Compendium of Treatment of End Stage Non-Cancer Diagnoses Patrick J. Coyne, MSN, APRN, ACHPN, ACNS-BC, FAAN, FPCN Compendium Editor Hospice and Palliative Nurses Association One Penn Center West, Suite 425 Pittsburgh, PA

2 HPNA Mission Statement: To advance expert care in serious illness. Copyright 2014 by Hospice and Palliative Nurses Association ISBN-13: HPNA has the exclusive rights to reproduce this work, to prepare derivative works from this work, to publicly distribute this work, to publicly perform this work, and to publicly display this work. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written permission of the Hospice and Palliative Nurses Association. Printed in the United States of America.

3 CONTENTS Disclaimer... Introduction... iv v DEMENTIA... 1 HEART FAILURE HEPATIC HIV/AIDS NEUROLOGICAL DISEASES AND TRAUMA PULMONARY RENAL iii

4 Compendium of Treatment of End Stage Non-Cancer Diagnoses DEMENTIA Second Edition Constance M. Dahlin, APRN-BC, ACHPN, FPCN, FAAN North Shore Medical Center Salem, MA Anne Carr, RN, MSN, GNP-BC Boston Medical Center Boston, MA Anne Mahler, GCNS-BC, ACHPN Hebrew Rehabilitation Center Boston, MA Jason Telles, MSN, ANP-BC, GNP-BC, ACHPN Masseschusetts General Hospital Boston, MA Patrick J. Coyne, MSN, APRN, ACHPN, ACNS-BC, FAAN, FPCN Compendium Editor Copyright 2014 Hospice and Palliative Nurses Association One Penn Center West, Suite 425 Pittsburgh, PA

5 CONTENTS OVERVIEW... 5 Definitions... 6 TYPES AND PATHOPHYSIOLOGY... 8 Neurocognitive Disorder Due to Alzheimer s Disease Vascular Neurocognitive Disorder Neurocognitive Disorder with Lewy Bodies Frontotemporal Neurocognitive Disorder Alcohol-Induced Neurocognitive Disorder Neurocognitive Disorder Due to Human Immunodeficiency Virus (HIV) Infection ASSESSMENT OF DEMENTIA History Physical Exam Functional Assessment NONPHARMACOLOGICAL INTERVENTIONS: PERSON-CENTERED CARE Developing a Supportive Environment Supporting Memory EARLY INTERVENTIONS Neurocognitive Disorder Due to Alzheimer s Disease Vascular Neurocognitive Disorder Neurocognitive Disorder with Lewy Bodies Frontotemporal Neurocognitive Disorder Alcohol-Induced Neurocognitive Disorder Neurocognitive Disorder Due to Human Immunodeficiency Virus (HIV) Infection Medications for Common Symptoms Medications to Avoid ALTERNATIVE THERAPIES Continued on next page. 3

6 Table of Contents continued. LATER INTERVENTIONS The Course of Advanced Dementia Interventions for Physical and Behavioral Changes Pain Depression Constipation Skin Integrity Incontinence Infections Nutrition Hospitalization Social Interaction Safety Communication ADVANCE CARE PLANNING ECONOMICS CARE SETTINGS Home Care Support Assisted Living/Nursing Home Hospice PSYCHOSOCIAL ISSUES Responsibility of Caregiving Caregiver Fatigue and Burden Caregiver Coping Caregiver Support POTENTIAL RESEARCH OPPORTUNITIES CONCLUSION APPENDIX A: Criteria for Neurocognitive Disorders APPENDIX B: Comparison of the Stages of Alzheimer s Disease and the Progression of Dementia APPENDIX C: Alzheimer s Disease Medications APPENDIX D: Medications for Dementia Symptoms CITED REFERENCES RESOURCE LIST

7 Case Study Elizabeth is a 77-year-old widowed female who lives alone in the three-story house where she raised her family. Her husband of 26 years died 22 years ago. One daughter, Jeanne, lives nearby, and is a chaplain. Two other daughters, both healthcare professionals, live out of state, but are involved in her care. Elizabeth retired from her job as a university development director at age 68. Since retirement, she has remained active; visiting grandchildren, participating in book clubs, attending financial seminars, and enjoying cultural events. At age 75, Elizabeth began experiencing memory issues. She does not retain details, forgets appointments and family birthdays, and is unable to organize or manage her house. Over the next two years, she developed frailty and is now unable to care for herself in her typically meticulous fashion. Her male companion describes the increasing difficulty of traveling together due to her care needs. Her family is worried and plans to take her for a medical evaluation. OVERVIEW Dementia results from myriad of reversible and irreversible complex processes, stemming from neuronal loss that causes changes in the brain (see Table 1). 1 Due to the aging baby-boomer generation, longer life expectancy from improved preventative healthcare, and better care for comorbid and chronic conditions, the number of people with dementia is expected to escalate dramatically over the next ten years. It is estimated that 5.2 million Americans have Alzheimer's disease, the most common type of neurocognitive disorder; an increase from an estimated 4.5 million in the early 2000s. 1 By 2025, predictions estimate that the number of Americans with Alzheimer s disease is expected to rise to 7.1 million. 1 In a study of over 2,500 people older Americans, researchers found that, death certificates do not accurately reflect the actual number of people who die from Alzheimer s disease, which could indicate an increased number of people with dementia. 2 Of significance, new guidelines to diagnose and classify dementia were proposed by the National Institute on Aging and the Alzheimer s Association. It is anticipated that these new criteria will increase dementia estimates because it includes both persons diagnosed with preclinical Alzheimer s disease as well as mild cognitive impairment due to Alzheimer s disease. 1 Without a treatment breakthrough by Table 1: Causes of Dementia 3 Reversible Etiologies Cardiac disorders Depression Drug toxicity Hydrocephalus (potentially reversible) Brain lesions (e.g., hematomas, brain tumors) Metabolic disorders related to thyroid & parathyroid, imbalances in sodium & sugar levels, & liver function Inflammatory diseases Nutritional deficits thiamine (B 1), niacin (B 6), & folate (B 12) Irreversible Etiologies Degenerative Alzheimer s disease, Lewy body disease, frontotemporal (Pick s disease), Huntington s disease, amyotrophic lateral sclerosis, Parkinson s disease Vascular multi-infarct disease Cerebellar degenerations Toxins alcoholism, heavy metals Infections prion (e.g., Creutzfeldt-Jakob disease), human immunodeficiency virus, neurosyphilis, tuberculosis, sarcoidosis Neoplasms primary or secondary tumors 5

8 6 Compendium of Treatment of End Stage Non-Cancer Diagnoses the year 2050, the projected Alzheimer s disease population in the United States will reach 13.8 to 16 million. 1 The increased care needs for the burgeoning population with dementia will strain our current healthcare system. Such costs include out-of-pocket medical expenses, Medicare expenditures, formal and informal home care, and net nursing home costs. 4 Within the United States, the monetary cost of dementia is estimated at $214 billion; $46,669 per person per year. 1 In 2010, the worldwide estimated costs for dementia were over $604 billion. 5 By 2050, the cost is predicted to increase to $1.2 trillion. 1 This compendium reviews a variety of neurocognitive disorders or dementia types with an emphasis on advanced end stage illness and palliative care issues for patients and families across the illness trajectory are discussed. The individual types of dementia are described according to pathophysiology and presentation, along with the most common progressive, palliative care conditions. Universal approaches to care are discussed inclusive of assessment, advance care planning, and locations of care. DEFINITIONS The most recognized definition of dementia was derived from the American Psychiatric Association (APA) 2000 DSM-IV diagnostic guide. It defined dementia as the development of deficits in memory associated with one of the following areas: aphasia (language disturbances), apraxia (impaired ability to carry out motor activities despite intact motor function), agnosia (failure to recognize or identify objects despite intact sensory function), or disturbances in executive function. 6 However, in the long-awaited DSM-5 published in 2013, 7 the American Psychiatric Association eliminated the term dementia from all diagnoses; replacing it with the term neurocognitive disorder. Criteria for a neurocognitive disorder diagnosis are based on alterations in the defined neurocognitive domains of complex attention, executive function, learning and memory, language, perceptual-motor, and social cognition (see Table 2). The APA recommends first determining that a person has a neurocognitive disorder, then identifying its subtype (e.g., neurocognitive disorder due to Alzheimer s disease, vascular neurocognitive disorder, frontotemporal neurocognitive disorder). The APA defines neurocognitive disorders as major or mild based on level of severity. 7 For the purposes of this compendium, the full DSM-5 title will be used in the section headers (e.g., neurocognitive disorder due to Alzheimer s disease) with the shorter name being used throughout the text (e.g., Alzheimer s disease). See Appendix A for a brief review of the criteria for diagnosing neurocognitive disorder. The World Health Organization defines dementia as a syndrome of brain disease characterized by loss of higher cortical functions. 5 While consciousness is maintained, cortical function impairments include intellectual deterioration (e.g., memory, thinking, orientation, comprehension, calculation, learning capacity, language, judgment). The deterioration of the intellect causes declines in functional, motor, social, and cognitive capacities. Specifically, memory loss, behavior, decision-making, and language skills all irrevocably deteriorate. 5 Simply