Because it is a slowly progressive neurodegenerative condition that may continue for a decade or more after diagnosis, management of AD must change over time. The majority of patients with AD (and their caregivers) receive their medical care from PCPs.2 PCPs are key to ensuring the care provided is appropriate to the patient's needs and situation.
Assessment
Appropriate treatment plans and goals that meet all of a patient's needs require ongoing comprehensive assessment of the patient, the family, and the living situation. This assessment should include daily functioning, cognitive status, comorbid medical conditions, behavioral symptoms, medications (prescription and OTC), living arrangement and safety, and need for palliative and/or end-of-life care. The use of standardized instruments to assess function, cognition (Table 1), and behavior (Table 2) can help the PCP monitor changes.
Longitudinal monitoring of disease progression and response to therapy, along with regular health maintenance examinations, are essential.3,4 The frequency of visits depends on a number of factors, including the patient's clinical status, likely rate of change, current treatment plan, need for any specific monitoring of treatment effects, and the reliability and skills of the patient's caregivers and support system. Assessment should occur at least every six months or any time there is a sudden change in behavior or increase in the rate of decline.
It is essential that assessment also include identification of the primary caregiver and the adequacy of family and other support systems. Assessment of the caregiver should include knowledge, social support, health status (including psychiatric symptomatology), and ethnic and cultural issues.5 Family caregivers are central to the PCP's assessment and care of the person with AD.6 Therefore, establishing and maintaining a relationship with caregivers is crucial in the ongoing care of patients with AD.7 This relationship is most important as the disease progresses into the moderate and severe stages, at which time family members who oversee day-to-day care and implement and monitor treatment become the real managers.8
Beginning at the time of diagnosis and continuing throughout the course of the disease, ongoing assessment of a patient's decision-making capacity is essential. Capacity assessment is decision-specific, with more complex decisions requiring higher cognitive function than simpler decisions.9 Since patients with AD experience decreasing cognition and will eventually lose all decision-making ability, identification of a surrogate decision maker early in the course of the disease is important. In the beginning stages of AD, patients typically retain their decision-making capacity and are able to appoint a surrogate decision-maker for the time in the future when they will no longer retain this capacity.10 In addition, identification of the patient's and family's culture, values, primary language, and literacy level is necessary to assure that an appropriate treatment plan is developed and can be carried out.
Treatment
In addition to monitoring function and cognitive decline, ongoing regular management of general health and other medical conditions is essential to the care of the patient with AD. Management goals and interventions need to be appropriate to the patient's (if capable) and family's preferences and modified as the disease progresses. When prescribing medications (whether for AD, associated behaviors, or other comorbid conditions), it is important to assess the ability of the patient and family member or caregiver to adhere to the regimen. Medications should be reviewed with attention to discontinuing nonessential medication, simplifying the dosing schedule, and using aids (e.g., pillboxes).
Appropriate treatment of comorbid medical conditions is crucial and may require extra vigilance and adjustment depending on where the AD patient is in the course of the illness. The degree of cognitive impairment impacts the ability to manage other chronic and acute medical conditions, and the appropriate management of these other conditions can impact both cognition and function in AD. Whenever a new treatment or intervention is considered or a change in the current treatment is anticipated, the health-care provider must assess the patient's and the caregiver's ability to understand and participate in the decision-making process.11
Schedule a meeting with every patient and his or her family about the use of FDA-approved medications for the treatment of cognitive decline. The currently available cholinesterase inhibitors (i.e., donepezil, galantamine, rivastigmine) all work by blocking acetylcholinesterase. These medications have similar efficacy and side effects. Patients and family members must be given realistic expectations about the medications, which are aimed at slowing—not reversing—cognitive decline.
Reports from clinical trials and meta-analyses of individual agents and the class of acetylcholinesterase inhibitors demonstrate a small, statistically significant benefit in cognition, activities of daily living, and behavior over a period of six to 18 months.12-15 GI side effects, primarily nausea or diarrhea, occur in 10%-15% of patients and may require discontinuation of the treatment. Rivastigmine is available in a patch form, which makes it more tolerable. Patients with bradycardia or bradyarrhythmias have an increased risk for syncope or dizziness with cholinesterase inhibitors.12 Treatment with one of these agents should be started on diagnosis or after six months' duration of AD symptoms. Evaluation for adverse drug reaction should occur after two to four weeks of treatment. Reassess effectiveness every six months.
Memantine, an N-methyl D-aspartate receptor antagonist widely used in Europe, is currently approved for use in the United States for moderate AD. Memantine has also been shown to have a small effect on cognition, function, and behavior.16 Use this medication either alone or in conjunction with an acetylcholinesterase agent.
At this time there is insufficient evidence to support the recommendation of other pharmacologic treatments for patients with AD. Studies of antioxidant therapy with vitamin E,17,18 ginkgo biloba,19 estrogen,20,21 and nonsteroidal anti-inflammatory agents22 have failed to demonstrate any clear benefit in preventing or postponing cognitive decline or affecting function or behavior.
Behavioral symptoms and mood disorders are common in people with AD as well as their caregivers, affecting up to 90% of patients at some time during the illness.23 These include a broad spectrum of symptoms (e.g., apathy, wandering, agitation, verbal and physical aggression, and psychosis) that can vary from intermittent and mildly annoying to life-threatening. Behavioral symptoms in AD patients are among the most difficult aspects of care for patients, caregivers, and health-care providers. There is agreement that except in emergency situations, nonpharmacologic strategies are the preferred treatment approach for behavioral problems.24,25 This should include such approaches as environmental modification, task simplification, appropriate activities, and physical exercise. Consider psychotropic medication only when nonpharmacologic approaches have been exhausted and have failed to reduce agitation or improve behavioral symptoms. The use of psychotropic medications is controversial, and no agents are currently approved by the FDA for use in people with AD or other dementias. If used, medication should be targeted to a specific behavior, for narrowly specified and predetermined goals, with close monitoring for side effects and drug interactions.26,27 Start with a low dose, and increase slowly until the behavior improves or adverse effects emerge.3
Education and support
Education and support services for AD patients and their families are critical for effective long-term management of this progressive disease. Medical care must be integrated with education that connects patients and caregivers to support organizations. Patients and caregivers should be provided with linguistically and culturally appropriate educational materials and referrals to community resources, including support groups, legal counseling, financial resources, respite care and counseling, and consultation on care needs and options.
Discuss the diagnosis, progression, treatment choices, and goals of AD care in a manner that is consistent with the patient's and family's values, preferences, culture, education, and ability. This discussion should occur at the time of initial diagnosis and recur periodically throughout the course of the disease. If feasible, encourage patients to complete an advance directive with identification of surrogates for making medical and legal decisions along with statements of their care preferences.
Caregiver assessment, education, and community referral have been shown to lead to improved well-being and enhanced quality of life for the caregiver as well as the recipient.28,29 This counseling is often beyond the scope and time of a routine office visit and may require an additional appointment. At a minimum, providers should be familiar with agencies and services in their community that can provide assistance and routinely and repeatedly refer families and caregivers.
Legal considerations
Since cognitive decline over time will deprive the patient with AD of the ability to think clearly, major legal and financial decisions should be addressed early in the course of the disease, while the patient is still capable. Health-care providers occupy a unique position of trust and influence that provides an ideal opportunity to discuss the importance of basic legal and financial planning.
A capacity evaluation may be required before a patient's chosen surrogate or substitute decision-maker can be authorized to act on his or her behalf. Utilize a structured approach to the assessment of capacity with attention to the relevant criteria for the kind of decisions being required of the patient. Depending on the state, a capacity declaration is usually required when one or more clinicians consider conservatorship of a patient with AD.
AD patients are at increased risk for abuse and neglect.30 Because of their cognitive and functional decline, it is particularly challenging to obtain information about potential abuse from these patients. Providers need to actively monitor for evidence and report all suspicions of abuse to the proper authorities. Abuse can take many forms, including physical, sexual, and financial. Abuse may also involve neglect, isolation, abandonment, or abduction. Monitoring requires that the provider be alert to both the patient's and the caregiver's circumstances. In addition, be aware that the patient's behavior may be a reaction to a disturbing or dangerous situation in his or her environment.31
The cognitive, visuospatial, and other impairments associated with AD increase the risks associated with driving. In some states, the diagnosis of dementia in a licensed driver requires automatic reporting. Patients with moderate or severe AD should not drive.32 In patients with mild or early disease, careful consideration of the ability to safely operate a motor vehicle is required.22
SPECIAL CONSIDERATIONS
Early-stage AD
Improved recognition of signs of cognitive decline has led to earlier diagnosis of AD. This is resulting in a growing population of early-stage individuals who are able to benefit from active involvement, education, and support interventions. Patients in the early stages of AD have unique concerns that need to be recognized and addressed. These individuals should be involved in planning their own care. Discussions about the implications of the diagnosis with respect to work and family may require more frequent medical visits and/or referral to community resources. Clinicians need to be able to provide patients in early-stage AD with recommendations that promote continued functioning, assist with independence, and maintain cognitive health (including physical exercise, stimulation, and social support). Support groups specifically for individuals with early-stage AD and their caregivers are being developed in many communities to address the special concerns and needs of this population.
End-of-life care
The course of AD is one of slow, gradual decline. As the dementia worsens and the ability to understand treatment options and participate in decision making declines, care should shift to a focus on relief of discomfort. The advisability of routine screening tests, hospitalization, and invasive procedures should be made based on a previously discussed care plan, patient wishes, and severity of the dementia. As the end of the patient's life nears, emphasize options that maximize comfort and avoid futile treatments that may not provide relief and could prolong the dying process. Generally, tube feeding is not recommended for patients with severe dementia.33 Consider referral to hospice sooner rather than later to provide the patient and family optimal support.
A diagnosis of AD is often the beginning of a long period of decline in cognition and function that is frequently accompanied by behavioral changes. These changes can be challenging for everyone, including health-care providers. Evidence-based recommendations for ongoing assessment, treatment, education, support, and legal considerations enable clinicians to better meet the needs of patients and assist families and caregivers over the course of the disease.
Dr. Segal-Gidan is director of the Rancho/University of Southern California Alzheimer's Disease Research Center in Los Angeles. She has no relationships to disclose relating to the content of this article.
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By Freddi Segal-Gidan, PA, PhD
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