Dementia and Alzheimer's: Solving the Practical and Policy Challenges

Dementia and Alzheimer’s

Dementia and Alzheimer’s

Solving the Practical and Policy Challenges

James O’Reilly and Rhonna Shatz

Anthem Press

An imprint of Wimbledon Publishing Company

www.anthempress.com

This edition first published in UK and USA 2019

by ANTHEM PRESS

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and

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© James O’Reilly and Rhonna Shatz 2019

The author asserts the moral right to be identified as the author of this work.

All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of both the copyright owner and the above publisher of this book.

British Library Cataloguing-in-Publication Data

A catalogue record for this book is available from the British Library.

Library of Congress Cataloging-in-Publication Data

Names: O’Reilly, James T., 1947– author. | Shatz, Rhonna, author.

Title: Dementia & Alzheimer’s : solving the practical and policy challenges / Prof. James O’Reilly & Prof. Rhonna Shatz.

Other titles: Dementia and Alzheimer’s

Description: London; New York, NY: Anthem Press, 2019.

Identifiers: LCCN 2019012569 | ISBN 9781783089253 (hardback) | ISBN 1783089253 (hardback)

Subjects: LCSH: Dementia – Patients – Care. | Caregivers. | Health care teams. | BISAC: HEALTH & FITNESS / Diseases / Alzheimer’s & Dementia. | PHILOSOPHY / Mind & Body.

Classification: LCC RC521.O74 2019 | DDC 362.1968/31–dc23LC record available at https://lccn.loc.gov/2019012569

ISBN-13: 978-1-78308-925-3 (Hbk)

ISBN-10: 1-78308-925-3 (Hbk)

This title is also available as an e-book.

Contents

1Introduction

2The family dynamics of dementia

3Tort liability related to dementia

4Dementia and private insurance

5Medicare, Medicaid, disability and other government benefits

6Dementia and residential care facilities

7Adult protective services in dementia cases

8Dementia and financial issues

9Dementia in probate and guardianship

10Dementia and employment issues

11Drug research and new product developments for dementia

12Dementia and criminal justice

13Understanding your expert’s advice about brain deterioration

14Understanding the causes of Alzheimer’s disease

Appendix: Finding medical reference sources about dementia

Index

Chapter 1

Introduction

1.1 Looking inside the brain

The brain is a wonderfully complex system. Its secrets are hidden until death, when an autopsy can help to retrospectively explain some of the unusual behaviors which had been loosely grouped together by doctors with a diagnosis of dementia. Dementia is a broad term for brain disease, a term that includes multiple stages of severity within a chronic disease of cognitive impairment. Alzheimer’s is one of the best-known subcategories, among the several forms of dementia, but the subcategories have surprising characteristics and variations.

The key problem that counselors face with diagnosing the medical and psychological problem of an individual has been expressed as you don’t know what you don’t know regarding a patient’s brain and its deterioration over time. Until the autopsy is done, we cannot accurately answer all the questions about how dementia has been actually impacting on the brain of this patient. Those counselors and attorneys who want certainty in every case, or a clear winner every time, should not accept roles in which dementia is a factor for that individual or, more frequently, a factor against the defendant driver, midnight shoplifter or agitated homeless person wandering in a city park.

1.2 How big the issues are, and will be

Counselors who wish to succeed with claims need to understand the large and growing wave of dementia illness, which is emerging from demographic trends and especially from older aging Americans, a product of relatively healthier living among younger and middle-aged persons.

Yes, there will be a market, especially for legal services. There are estimates of between 3.8 million and 5.3 million adults with dementia in the United States today,¹ projected to grow to approximately 12 million to 15 million by 2050 as baby boomers move through the system. Their caregivers, family members and heirs total in the millions as well.

Three of the relevant systems to be addressed in this text, the US legal system, the for-profit and voluntary long-term care system, and the caregiver/medical personnel system, are not well equipped to deal with the imminent and massive volume increase among the post–World War II youth who are today’s elder patients. Advising this market is a challenge, but it needs to be satisfactorily completed.

The growth in the number and proportion of older adults is unprecedented in the history of the United States. Two factors—longer life spans and aging baby boomers—will combine to double the population of Americans aged 65 years or older during the next 25 years to about 72 million. By 2030, older adults will account for roughly 20% of the US population.²

A major shift has been observed by the US Centers for Disease Control in the leading causes of death for older adults, away from infectious diseases and acute illnesses, to chronic diseases like cardiac problems and degenerative illnesses like dementia. More than a quarter of all Americans and two out of every three older Americans have multiple chronic conditions, and treatment for this population accounts for 66% of the country’s health care budget.³ But some research has found that cautious optimism appears justified as medical research may cause improvements in reducing the future rate of cognitive problems.⁴

Dementia has a prominent place in the future of US health care expenditures. A 2011 estimate of $156 billion in worldwide spending on dementia suggested these costs would quadruple as the number of patients increased.⁵ Development of a new set of medications, and earlier care for younger patients at risk, will lead the promises of benefit and the estimates of future spending.

A 2012 summary by the Alzheimer’s Association noted that one in eight older Americans has Alzheimer’s disease, and it is the sixth leading cause of death in the United States. Over 15 million Americans provide unpaid care for a person with dementia. Payments for care were estimated to be $200 billion in 2012.⁶

1.3 What types of dementia will be covered in this text?

Alzheimer’s disease is the most common cause of dementia, accounting for approximately 70 percent of all US dementia cases.⁷ The next chapter of this text will offer medical insights into the risk of acquiring dementia, including the condition identified as Alzheimer’s disease. It is not exclusively an inherited genetic disease, but the risk is higher if an individual has a first-order relative with the disease.⁸ Vascular dementia is widely considered the second most common cause, accounting for approximately 17 percent.⁹ The remaining causes include dementia with Lewy bodies, Parkinson’s disease, frontotemporal lobar dementia and mixed dementia types (e.g., Alzheimer’s with Lewy body pathology and Alzheimer’s with vascular pathology).¹⁰ More will be said about these later.

1.4 Why chronic diseases like dementia matter

Patients who are living with one or more chronic diseases often experience diminished quality of life, generally reflected by a long period of decline and disability associated with their disease. Chronic diseases can affect a person’s ability to perform important and essential activities, both inside and outside the home. The Centers for Disease Control and Prevention (CDC) reports this quality of life decline:

Initially, they may have trouble with the instrumental activities of daily living (IADLs), such as managing money, shopping, preparing meals, and taking medications as prescribed. As functional ability—physical, mental, or both—further declines, people may lose the ability to perform more basic activities, called activities of daily living (ADLs), such as taking care of personal hygiene, feeding themselves, getting dressed, and toileting.¹¹

Disengaged from mobility and networks of community activities, the person has lessened outlets and activities while spending more time on medical needs. The CDC observed the pressure toward more expensive residential care arrangements for the elderly:

Loss of the ability to care for oneself safely and appropriately means further loss of independence and can often lead to the need for care in an institutional setting. The need for caregiving for older adults by formal, professional caregivers or by family members— and the need for long-term care services and supports—will increase sharply during the next several decades, given the effects of chronic diseases on an aging population.¹²

1.5 How costly is dementia?

The RAND Corporation has estimated the annual total costs of dementia to the United States to be between $159 billion and $215 billion, rising to more than $500 billion by 2040.¹³

Dementia has imposed a remarkable economic burden on the family caregivers. Its global annual cost as of 2011 was estimated to be $156 billion.¹⁴ Nationally, among all health care costs for older Americans, the CDC has reported that

95% are for chronic diseases. The cost of providing health care for one person aged 65 or older is three to five times higher than the cost for someone younger than 65. By 2030, health care spending will increase by 25%, largely because the population will be older. This estimate does not take into account inflation and the higher costs of new technologies. Medicare spending is projected to increase from $555 billion in 2011 to $903 billion in 2020.¹⁵

Two-thirds of older Americans have multiple chronic conditions, and treatment for this population accounts for two-thirds of the country’s health care budget. The US health care system is built on the fee for service model and largely designed to treat one disease or condition at a time, but many Americans have more than one, and often several, chronic conditions.

Elders with chronic diseases may also have other health problems, such as dementia or other cognitive impairments. The varied nature of these conditions leads to the need for multiple health care specialists, a variety of treatment regimens, and prescription medications that may not be compatible. People with multiple chronic conditions face an increased risk of conflicting medical advice, adverse drug effects, unnecessary and duplicative tests, and avoidable hospitalizations, all of which can further endanger them.¹⁶

1.6 How to utilize this text

Our audience for this text are counselors and policy makers whose interactions with dementia issues arise from family counseling, client advising and the many commercial and legal interactions with persons impacted by dementia issues.

We conclude in Chapters 13 and 14 with a broad ranging set of medical insights by world-class neurology expert Dr. Rhonna Shatz. These chapters are arranged to respond to a framework of typical questions often asked in counseling. We cover the aspects of dementia which intersect with the US legal system: injury liability and defense; private and government health insurance systems; employment and criminal issues; finance and family issues; guardianship and probate matters; and the long-term care issues for the dementia patient. We all recognize that the brain is a remarkable organ, and it is a remarkable place for issues of law and medicine to be examined. Please apply your best judgment to the needs of clients, employees, defendants and their families, as you utilize the insights that are offered throughout this text.

1 Esther Friedman, Demographics add urgency for action on dementia long term care, Modern Healthcare , 25 (July 28, 2014).

2 US Centers for Disease Control & Prevention, The state of aging health in America (2013), at http://www.cdc.gov/aging/pdf/state-aging-health-in-america-2013.pdf.

3 http://www.cdc.gov/aging/pdf/state-aging-health-in-america-2013.pdf.

4 Walter Rocca et al., Trends in the incidence and prevalence of Alzheimer’s disease, dementia and cognitive impairment in the United States, Alzheimer’s Dementia Journal , 7(1) (2011), 80.

5 Ibid.

6 Alzheimer’s Association, Facts & Figures (2012).

7 B. L. Plassman, K. M. Langa, G. G. Fisher, S. G. Heeringa, D. R. Weir, M. B. Ofstedal, … R. B. Wallace, Prevalence of dementia in the United States: The aging, demographics, and memory study, Neuroepidemiology , 29(1–2) (2007), 125–32.

8 S. Lovestone, Early diagnosis and the clinical genetics of Alzheimer’s disease, Journal of Neurology , 246(2) (1999), 69–72.

9 Plassman et al., Prevalence of dementia in the United States, 125–32.

10 Ibid. Also N. Mahendra and T. Hopper, Dementia and related cognitive disorders, in I. Papathanasiou, P. Coppens and C. Potagas (eds), Aphasia and Related Neurogenic Communication Disorders (pp. 397–430) (Jones & Bartlett Learning, LLC, 2013).

11 http://www.cdc.gov/aging/pdf/state-aging-health-in-america-2013.pdf.

12 Ibid.

13 V. Freedman et al., Trends in late-life activity limitations in the United States: An update from five National Surveys, Demography , 50(3) (2013), 661.

14 Rocca et al., Trends in the incidence and prevalence of Alzheimer’s disease.

15 http://www.cdc.gov/aging/pdf/state-aging-health-in-america-2013.pdf.

16 Ibid.

Chapter 2

The family dynamics of dementia

2.1 Care consultations

We begin with a realistic scenario for the counselor: You have been called for help after a family has experienced the grave difficulty of confronting dementia in a parent, sibling or relative. This chapter discusses the family context within which our later chapters on detailed legal solutions will be presented by the attorney.¹

Diagnosis of dementia in a loved one brings slow heartbreak, and experience with that sad event carries this message to family members: Don’t try dealing with this alone! Yes, counselors say, life is unfair, but you must get over it, and assume the helper role that your loved one needs for you to perform. Each dementia patient will need multiple caregivers, allies and respite care providers for those caregivers. This requires a family’s close attention to their newly discovered responsibilities. It takes a village for a family to come out of the dementia experience with a positive unity among the family members.

Though each case is different, the patterns can be recognized and responded to by experienced nurses and social workers. The diagnosing physician is likely to hand over the dementia patient’s continuing oversight of care to the nurse or the psychiatric social worker. Dementia specialist social workers start with gathering information for the Care Consultation. This event is a summit meeting of those who care enough to be supporting the patient in the face of the dementia diagnosis.

Because the dementia patient can be expected to live several years with the brain degeneration process under way that can lead to death, social workers help that family to understand the stages and the process that they are entering. Build a Foundation for the Future is their theme in dealing with the family.

Social workers will meet with the patient’s family to set up short-term and long-term goals. What is needed for this patient now? What is likely to be needed in her or his future care? How much will it cost? How will we allocate the care roles and the funding needed?

2.2 Facilitating the family dialogue

Caregivers or key members of the patient’s family typically call the local affiliate of the Alzheimer’s Association after the medical diagnosis of dementia, and a meeting time/place is arranged for that family.

It is very important that the family members come together face-to-face for the Care Conference, because everyone has a role in the care team for their loved one. Sadness and fear of an adverse stigma are likely to be primary initial responses.

2.3 Anticipatory grieving

The dementia diagnosis is hard to accept among the family of the patient, as she or he is still present and alive, with no external signs of the progressively severe disease. This may be the first time that the family members begin to worry about their own fate, because it is at least statistically possible that a genetic factor in causation of the parent’s condition might be dormant in their own brains. The forewarning should encourage more adept preplanning for their own future needs.

Be aware that there will inevitably be some background dynamics, some disagreements and some history that may come out when the family members are all together. Rivalries, resentment, guilt and so on are emotions that can frequently emerge. Face the reality and deal with it. Anticipatory grieving means they see Mom is slipping away and grief can be huge. In some families a frustration could develop (almost wish Mom could just die or wish my sister had told us earlier about Dad’s memory problems). Good counselors have the people skills needed to recognize these feelings and aid the family in coping with them.

2.4 Family organization

The patient’s support team begins with the irony that the parent, now the patient, had typically been the organized one, who could get things to move in the family. Now suddenly the flow is in reverse, caring for the longtime caregiver.

For example, from the group of family and friends, find which person has which strengths that can be called upon, for example, for paying bills or interacting with doctors about the therapeutic issues. Get the proper paperwork signed. Schedule a group call to be held each week to share updates about the patient. Agree on who is responsible for limiting her or his driving, what alternate mobility will be arranged for the patient and who will actually remove the car and keys. For example, a durable power of attorney might be accepted for the sale of a car, but some banks will demand a guardianship order to justify accepting the sale rights of a nonfamily member.

Caregivers may feel this is an unexpected role reversal—she cared for us, now we learn how to pay her bills and care for her. But the individual who is the primary caregiver must function in constant crisis mode despite stress and lack of sleep; this makes collective support essential.

The best option for the family’s active supportive members would be to visit a dementia support group.