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At a glance
- Maintaining a relationship with caregivers is crucial in the ongoing care of patients with Alzheimers disease.
- When prescribing medications, it is important to assess the patient’s ability to adhere to the regimen.
- Integrate medical care with education that connects patients and caregivers to support organizations.
- Address major legal and financial decisions early in the course of the disease while the patient is still capable.
With the aging of the population, the incidence and prevalence of Alzheimers disease (AD), already the most common type of dementia, are projected to rise. A diagnosis of AD has implications for ongoing care across all settings and providers—whether you are the primary-care provider (PCP) and made the diagnosis, assuming the care of a new patient with AD, or a consultant asked to provide input for a chronic problem of someone with AD. A diagnosis of AD adds to the complexity and cost of care. This article focuses on post-diagnostic care and is based on the 2008 report from the California Workgroup on Guidelines for Alzheimer’s Disease Management.1
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.
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.