Improving the quality, comprehensiveness, and coordination of health care for people with dementia is a primary goal of the National Alzheimer’s Plan. In this article, the key principles of high-quality dementia care for nonspecialist clinicians and health care leaders are synthesized, a framework for operationalizing its components is presented, and simple steps for developing dementia-capable health care systems are offered.

Keywords

Dementia

Alzheimer disease

Primary care

Comprehensive management

Care coordination

Partnership

Quality measurement

Annual wellness visit

Key points

The problem

Alzheimer disease (AD), the most common cause of dementia in later life, affects nearly 5 million people in the United States.1 But for patients and families, finding clinicians prepared to navigate the diagnostic process, offer treatment, and provide knowledgeable and compassionate long-term management, remains a matter of luck. Physicians, other primary care providers (PCPs), and health care systems in the United States do not adhere to uniform expectations or evidence-based approaches to recognizing dementia, or to providing long-term health management and support for dementia patients and their caregivers. Compounding this problem are the limited access to dementia specialist consultations and the absence of quality monitoring to evaluate the care that patients receive, leaving little practical opportunity to achieve real-time improvement.

The mood in health care at the national level is one of energetic innovation, giving rise to a wealth of chronic disease management programs, a rapidly evolving science of implementation, and broad engagement of many stakeholders in improving chronic care. The health care and societal costs of dementia care are high (at least comparable with those of heart disease and cancer),2 and many thoughtfully conducted clinical demonstrations and intervention trials have identified where gaps exist in health services and defined what works in dementia care. However, health care systems have been slow to translate the evidence into practice; barriers to change, such as entrenched attitudes and the costs inherent in innovation, are substantial. Our aim is to help bring solutions within reach by outlining steps to promote implementation of sustainable systems of dementia care. We term such health care systems “dementia-capable”.

PCPs (who may be physicians, nurse practitioners, or physician assistants) play an essential role in implementation of dementia-capable health systems, but they vary broadly in knowledge, skill set, and system resources,3 all of which affect their level of engagement in managing patients with dementia. It is useful to consider how professionals and health systems respond to heart failure, another similarly complex challenge in chronic disease care. Some PCPs diagnose heart failure themselves, obtain the necessary diagnostic tests, prescribe medical and lifestyle interventions, schedule regular follow-up, and make adjustments in the treatment plan as clinical changes warrant. Some PCPs may prefer that the patient be managed by a cardiologist from diagnosis onward. In the second scenario, the PCP mainly acts as a monitor: on observing a new symptom, the PCP encourages an earlier-than-planned visit to the cardiologist. If lack of PCP capability and heart failure prevalence overwhelm the supply of cardiologists within a health care system, an administrator can choose to hire more, and solve the problem of clinical capacity at the system level. Similarly, in dementia, some PCPs take on all aspects of diagnosis and management, whereas others would, if they could, refer even the most straightforward patients to a specialist (geriatrician, geriatric psychiatrist, or neurologist). However, the specialty-trained physician workforce is too small to care for the large and increasing numbers of patients with dementia, and it is decreasing (Fig. 1). Hiring more specialists to manage the need is not a viable health system response, nor is simply expecting PCPs to do more without structural changes in the delivery of care.

A recent modeling study4 estimated that a typical PCP can manage between ∼1300 and 2000 patients, varying with the level of task delegation that is built into the practice structure. If the age distribution of primary care patients reflects national demographics,5 about 13% of a typical 2000-patient panel (260 patients) are older than 65 years. Of these patients, 5% to 10% (13–26 patients) have AD and perhaps 3 to 10 more have other dementias, but only half are recognized. However, the numbers of older adults with some cognitive disability are potentially larger, reflecting the wide spectrum of systemic and cerebral conditions that are associated with cognitive impairment. Moreover, the disproportionate use of health care by older patients means that a still larger percentage of clinical encounters involve individuals with cognitive impairment, but much of that impairment goes either unnoticed or unremarked,6 never becoming a focus of clinical care. The combination of low frequency of frank dementia and low rates of provider recognition means that on-the-job experience by itself does not materially improve clinicians’ ability to provide high-quality care for affected patients.

The solution

In this article, we outline an incremental approach to health care redesign to achieve high-quality dementia management in health care systems. This approach includes what PCPs can accomplish now, the additional resources they require, how nonphysician staff can be used, retrained, or added to support PCP time and effort, and what clinical and institutional intelligence must be cultivated for sustainable improvements in care. Despite the shortage of providers with dementia expertise, smarter, dementia-capable health care systems can use their precious specialist resources more effectively by establishing coordinated systems that are supported by well-designed electronic health records (EHRs), tailored to assist in dementia care.7 Our goal is to show how redesign can be achieved in 12 steps linked to focused strategies that address each of the major deficiencies in health care for dementia and to show the ways that patients and their caregivers benefit through prevention or resolution of dementia-driven health care complications. Steps 1 to 3 deal with preparation for improving dementia management by increasing recognition, diagnosis, and clinician engagement; steps 4 to 7 address the 4 distinct domains that comprise high-quality clinical care; and steps 8 to 12 address health system changes needed to support this care and measure its quality...