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Alzheimer’s disease (AD) is a progressive neurodegenerative disease that creates complex challenges and significant burdens for patients and relatives. Although the underlying pathological changes due to AD can be detected in research studies decades before the onset of symptoms, many patients in the early stages of AD remain undiagnosed in clinical practice. Rising evidence suggests the importance of early and accurate diagnosis of AD in optimizing outcomes for patients and their families, but there are still many obstacles throughout the diagnostic journey. Through a series of international working group meetings, different groups of experts contributed their perspectives to create a plan for a patient-centered diagnostic journey for individuals in the early stages of AD and an evolving interdisciplinary nursing team. Here we discuss important experiences, implications and recommendations.
Different Levels Of Dementia
Alzheimer’s disease (AD) is a progressive neurodegenerative disease associated with high economic costs and care burden (1). The presentation of AD includes a continuum that includes asymptomatic individuals with pathological signs of AD (i.e., preclinical AD) (2) in patients with mild cognitive impairment (MCI) due to AD (first stage of clinically detectable disease) and finally in patients with AD dementia (3). Pathological signs of AD, β-amyloid plaques and neurofibrillary tangles can be detected in the brain decades before clinical symptoms appear (3). Many individuals with AD at an early stage remain undiagnosed, as subtle cognitive deficits may not overtly affect daily activities. Subtle changes can be interpreted as normal aging of patients, families and healthcare providers (4). As the disease progresses to AD dementia, symptoms of cognitive decline become more pronounced, disrupting daily activities more frequently and may encourage patients to seek medical attention (5).
Stages Of Dementia: The 3 Stage And The 7 Stage Models
Accurate diagnosis in the early stages of the disease is important for the prognosis and planning of advanced care (1). Although approved treatments for early stages of AD that can delay disease progression are not yet available, delayed AD diagnosis delays the start of advanced care planning and non-pharmacological interventions, such as cognitive stimulation, psychological treatment, and lifestyle changes that can maintain or improve cognitive function. quality of life (6-9). Lifestyle changes and increased social support can reduce the burden on carers, delay institutionalization, and reduce health costs (10). Overall, timely and accurate diagnosis is the key to developing an effective care plan that requires coordination between patients, caregivers, family members, HCPs, specialists, social services, and payers (5).
Early and accurate diagnosis of AD for individuals in the United States born on and before 2018 can result in cumulative savings of approximately $ 7 trillion in medical and nursing expenses (1). Although there is ample evidence to support the benefits of early detection (10-12) and studies showing that most patients and caregivers prefer detection of AD diagnosis (13), the current process of diagnosis in the early stages of AD improves (14). Although the recently published U.S. The Preventive Services Task Force Statement of Recommendations concluded that there is insufficient evidence to properly weigh the benefits and risks of screening for cognitive impairment in older adults (15), experts have been quick to contextualize these findings and emphasize the benefits during the inspection. for MCI and states that the approval of therapies targeting the underlying pathophysiology of AD will add additional value to the initial screening (16).
Worldwide, about 82 million people will have dementia by 2030 at a cost of $ 2 trillion a year (17); 60 to 80% of these cases are most likely due to AD (1). To properly screen and manage the growing population of potential patients, more resources are needed. In the current system, individuals suspected of having AD may be involved in a continuous referral cycle, awaiting years of diagnosis or treatment (4). Without an early detection paradigm, the already limited infrastructure will become more strained with the hospitalization of patients seeking treatment once therapies targeting the underlying pathophysiology of AD are approved (14).
Interventions targeting the pathophysiology of AD are thought to be more successful when used earlier in the course of AD, before significant neurodegeneration occurs (2, 18, 19). If such therapies are available, one of the biggest limitations to their expected use is the limited availability of specialists to assess and diagnose patients (14). While the shortage of trained specialists cannot be remedied quickly, it is possible to develop and implement strategies to improve the current infrastructure and focus on patient-centered care.
Understanding Different Types Of Dementia
To better understand how to improve a patient’s diagnostic journey in the early stages of AD, a series of three international working group meetings were held between April 2016 and May 2017. Contributors represented a range of specialties, including geriatrics, internal medicine, neurology, neuropsychology, nursing, pharmacology and psychiatry. . One-on-one interviews with contributors were conducted to gather insights from personal practice experience to identify similarities and differences in care models. The meeting was organized and held with unlimited support from Biogen, with emphasis on existing interventions and agnostic towards any investigative therapy in clinical development. Here we present the group’s perspectives and recommendations.
Through a process of repeated meetings, the working group reached a consensus recommendation to establish a patient-centered diagnostic journey for individuals with early-stage AD (Figure 1). The journey consists of the following five phases: discovery, evaluation, differentiation, diagnosis and treatment as well as monitoring. The diverse HCP working group used key learning and implications from its collective observations to create a plan for an evolving interdisciplinary care team to support the course of this diagnosis (Figure 1).
Figure 1. The proposed inpatient plan in the integrated AD care team and the potential role of HCPs in the AD care team. AD, Alzheimer’s disease; gears, cognitive; HCP, healthcare professionals; MRI, magnetic resonance imaging; NP, nurse; PCP, primary care physician.
In clinical practice, the term “screening” of patients and other HCPs is used to refer broadly to a wide range of tools and practices that help make a diagnosis in the early stages of the disease. The working group recognized that screening should be divided based on HCP and the tools that may be involved. The early detection stage can occur in a variety of scenarios where HCP is informed about cognitive anxiety or the first sign of cognitive impairment. The next step, assessing individuals for cognitive impairment and / or high probability of AD pathology and distinguishing AD from other causes of cognitive impairment, will require more specialized training. To meet this need, the working group recommended introducing the role of AD specialists across different disciplines for diagnosing early-stage AD. Following the diagnosis of AD through biomarker testing and the determination of treatment options by a dementia specialist, treatment and patient monitoring can be left to a patient-centered interdisciplinary team with a range of expertise and skills to meet patients ‘and caregivers’ needs.
The Global Deterioration Scale: The Reisberg Alzheimer’s Stages
This manuscript provides a working template for how the clinical team can function at each stage of the diagnosis with active recommendations for implementing training and building collaborative team infrastructure. We identified three key focus areas (Table 1) that are important to achieve this goal, including: (a) increased awareness of the benefits of diagnosis in the early stages of AD; (b) develop patient-centered support through an integrated AD care team plan; and (c) strengthen the infrastructure to create the processes and capacity needed to create these care teams. The implementation of this paradigm can not only improve current patient care, but also prepare our healthcare system to predict an increase in the number of patients with AD seeking treatment after approval of one or more study therapies targeting the underlying pathophysiology of AD (20 , 21). ).
Detection of early stages of AD (e.g., MCI due to AD and mild AD dementia) in the clinic can occur in a variety of scenarios (Figure 1A). Some proactive patients with a family history of dementia but no signs of symptoms, or those with subjective cognitive impairment, may seek out their own dementia specialist. However, cognitive symptoms are often detected in other scenarios: in patients’ discussions about memory with HCPs at annual health visits or with non-AD specialists treating other comorbidities. This discussion may be limited due to patients’ reluctance to discuss minor cognitive complaints, the general belief that cognitive decline is part of normal aging, and / or limited HCP time, training, or resources to screen for cognitive impairment. on a routine basis. Although there are mechanisms for reimbursement of cognitive screening (eg Medicare Annual Wellness Visit), a widespread pattern suggests that some HCPs benefit from this option (5). Patients with AD are very diverse, and nuanced disease symptoms, paired with different family histories, comorbidities, cultural beliefs, and socioeconomic backgrounds, lead to a variable entry point into the AD care system. To facilitate access to AD care at an early stage, the working group agreed that increased awareness and identification of AD diseases at an early stage is important and structured Focus Area 1 (Table 1A).
In the general population, the understanding that there are now treatment options for AD may lead more patients to discuss cognitive complaints
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