Ethical Foundations of Palliative Care for Alzheimer Disease

TWENTY-ONE: Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers

mc h a  t e r t w e n t y - o n e Drugs and Dementia Pharmacotherapy and Decision Making by Primary Caregivers Amy M. Haddad, R.N., Ph.D. The overall aim of this chapter is to review the literature regarding the experiences of primary caregivers (i.e., family members who care for a person with Alzheimer disease) and decisions about drug therapy. Specifically, the purpose is to describe the experience of acetylcholinesterase inhibitor (AChEI) therapy of primary caregivers of persons with Alzheimer disease (AD), outline the inherent ethical issues that are part of drug therapy decisions, and suggest areas for future, empirical research. Since there is no cure, the primary goals when treating patients with probable AD are enhancing independence and functional abilities and maintaining quality of life for patients and caregivers. Presently, there is only one group of drugs on the market that hold potential for amelioration of the symptoms of AD (i.e., acetylcholinesterase inhibitors, or AChEIs). So far, in the United States four AChEI drugs have been approved by the Food and Drug Administration for use in AD (i.e., tacrine, donepezil, rivastigmine, and galantamine). Of these, the last three have some advantages in that they can be given once daily and produce fewer side effects. All of these drugs have demonstrated some beneficial effects, albeit modest and unsustainable. At their best, these drugs could be classified as an intermediate type of antidementia drug. Intermediate drugs both improve decreased cognitive functioning and slow the rate of progression of dementia to some extent (Hirai, 2000). A drug that would completely arrest the progression of dementia is the ultimate goal, but the ideal drug is not yet available. It is unlikely that one class of drug will ever provide a cure for diseases as complex as AD, and patients and families must settle for drugs that work for some patients with varying degrees of benefit but that will not appreciably change the trajectory of the disease (Moghul & Wilkinson, 2001). Little empirical evidence exists to understand the varied experiences that patients and caregivers have with drug therapy decisions and AD. The unique nature of the disease, its impact on patients and families, the limited treatment options, and the action of AChEIs combine to produce numerous questions about decision making and drug therapy. For example: How do these primary caregivers identify and weigh the benefits and burdens of pharmacotherapy in AD? What do they expect will happen? Does hope play a role in drug decisions and AD? What factors impinge on decisions about drug therapy (e.g., caregiver factors such as age, education, work status, relationship to the patient, the care setting; factors in the patient, such as quality of life, drug side effects, severity of dementia, functional abilities, age; and cost of medication)? How do primary caregivers monitor the effectiveness of AChEI therapy when no specific marker exists? What sorts of ethical problems are involved in decisions about drug therapy? To provide partial answers to these questions, a review of the literature in three major areas follows: (1) decision making and AChEI therapy; (2) factors influencing primary caregivers’ decisions; and (3) ethical issues and pharmacotherapy . However, before exploring the literature, some background information on AChEI therapy is necessary. m Acetylcholinesterase Inhibitors Pharmacotherapy may benefit some patients with AD. During the last two decades, biomedical research on the neurobiology of AD has led to a profusion of pharmacological treatments. The most established and investigated of these are the cholinergic drug treatments (Davies & Maloney, 1976). The discovery of severe cholinergic cell loss in the basal forebrain has been the rationale behind a group of drugs designed to potentiate central cholinergic function (Bartus et al., 1982). Four AChEI drugs are currently approved by the FDA for treating AD: tacrine (Cognex®), donepezil (Aricept®), rivastigmine (Exelon®), and Drugs and Dementia 331 galantamine hydrobromide (Reminyl®). All four drugs increase the effective amount of acetylcholine available at the cholinergic receptor by binding at postsynaptic cholinergic receptors.“This prevents hydrolysis and increases the availability of acetylcholine, which is thought to prevent or slow memory loss” (Hanson & Galvez-Jimenez, 2000, p. 443). The overall possible action of these drugs is that of maintaining nerve signals. However, they are a chemically diverse group of drugs, which vary in mechanism of action and specificity for brain acetylcholinesterase. It should be emphasized...