The Administration on Aging, a division of the U.S. Department of Health and Human Services (USDHHS; 2018), estimates in 2017 there were 50.9 million people older than 65 living in the United States, comprising 15.6% of the population. Furthermore, the U.S. Census Bureau (2010) predicts that number will double to 88 million by the year 2050, accounting for >20% of the U.S. population. The Centers for Disease Control and Prevention (CDC; 2013) attribute the rapid growth in this special population to two major factors: the post-World War II baby boom and increased life expectancies of Americans.
Alzheimer's disease is the most common form of dementia and is estimated to affect approximately 5 million Americans age ≥65 (CDC, 2014). Increasing age is the single greatest risk factor for the development of Alzheimer's disease and other dementias, although there are developing theories of other risk factors, such as family history, environmental factors, and the presence of other chronic conditions. Alzheimer's disease is currently the sixth leading cause of death in the United States accounting for 93,500 deaths in 2014 (CDC, 2017). However, data suggest Alzheimer's disease may actually be the third leading cause of death just behind heart disease and cancer (National Institute on Aging, 2015). James et al. (2014) reported findings from a study to support this theory concluding deaths from Alzheimer's disease and Alzheimer's-related conditions (e.g., aspiration pneumonia) are vastly underreported.
The economic burden of Alzheimer's disease and other dementias is estimated to cost the United States approximately $290 billion annually, a number that is expected to grow to $1.1 trillion by 2050 (Alzheimer's Association of America, 2019a). Timeliness of diagnosis is an important factor, which has a direct impact on access to high-quality, cost-effective care.
The purpose of the current article is to discuss policies that address the needs of older adults with Alzheimer's disease.
Challenges in Health Care
One of the major challenges of the evolving health care system in the United States is ensuring there are adequate numbers of health care providers to care for its ever-growing aging population. Evidence suggests Americans are living longer and presenting to health care providers with increasing complex chronic diseases (CDC, 2013). Alzheimer's disease, a progressive neurological disease characterized by cognitive and functional deterioration, is one of the many common chronic diseases that may affect older clients. Alzheimer's disease and other forms of dementia cost the United States billions of dollars annually (Alzheimer's Association of America, 2019c). The ability to sustain quality and accessibility to health care systems for this special population is a valid concern.
Assessment and Planning CMS G0505
The Alzheimer's Association of America, an advocacy organization established in 1980, promotes advanced care and support for older adults and caregivers affected by Alzheimer's disease. The organization supports legislation to improve the care for individuals with Alzheimer's disease through increased accessibility to cost-effective, quality health care. One major issue affecting clients' accessibility to patient-centered care for persons with Alzheimer's disease and other dementias is lack of an appropriate diagnosis. It is estimated that 50% of Americans living with dementia have not received an accurate diagnosis, resulting in interventions not becoming mainstream in the Alzheimer's disease care plan (Knight Alzheimer's Disease Research Center, 2016). Fragmentation of care affects all members of the interdisciplinary health care team.
There have been several legislative movements to improve the quality of care for older adults with Alzheimer's disease. In 2015, the Alzheimer's Association of America (2019b) endorsed H.R. 1559, Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act of 2015. The proposed legislation provided resources for diagnosis and care planning for older adults with dementia and their caregivers. Although the bill was not enacted in the 2015 legislative session, the Centers for Medicare & Medicaid Services (CMS) formed billing code G0505, which went into effect in January 2017. This billing code allows physicians and other qualified health professionals (e.g., nurse practitioners, physician assistants) to be reimbursed for care planning services for older adults with Alzheimer's disease. Thornhill and Conant (2018) outlined the specific requirements to qualify for the reimbursement. The visit documentation from the provider encounter must include:
- a cognition-focused evaluation, including a pertinent history and examination;
- a functional assessment (e.g., basic and instrumental activities of daily living), including decision-making capacity;
- use of standardized instruments to stage dementia;
- medication reconciliation and review for high-risk medications, if applicable;
- evaluation for neuropsychiatric and behavioral symptoms, including depression, using standardized instrument(s);
- evaluation of safety (e.g., home), including motor vehicle operation, if applicable;
- identification of caregiver(s), caregiver knowledge, caregiver needs, social supports, and the willingness of caregiver(s) to take on caregiving tasks;
- advance care planning and addressing palliative care needs, if applicable and consistent with beneficiary preference; and
- creation of a care plan, including initial plans to address any neuropsychiatric symptoms and referral to community resources as needed (e.g., adult day programs, support groups); care plan shared with the patient and/or caregiver with initial education and support.
Despite this policy change, statistics show there has been minimal use of the billing code. Data revealed since enactment of this policy change, <1% of older adults eligible for this benefit received the benefit provided by CMS (Alzheimer's Association of America, 2019b). In the current legislative session (116th Congress), bill H.R. 1873/S880 was introduced, making provisions for a one-time educational outreach session to educate physicians and other qualified health professionals on the importance of dementia care planning services using the CMS billing code G0505.
National Alzheimer's Project Act
Alzheimer's disease research and advocacy has been promoted through several national initiatives. The most recent initiative, the National Alzheimer's Project Act, was signed into law on January 4, 2011, by President Obama to establish a national strategy to improve care for older adults with Alzheimer's disease and their caregivers. The mission statement of the organization established by President Obama reads:
For millions of Americans, the heartbreak of watching a loved one struggle with Alzheimer's disease is a pain they know all too well. Alzheimer's disease burdens an increasing number of our Nation's elders and their families, and it is essential that we confront the challenge it poses to our public health.
The initiative initially established five ongoing goals and actively publishes implementation milestones readily available for review through the USDHHS, Office of the Assistant Secretary for Planning and Evaluation. Although many of the project's activities are ongoing, stakeholders can acquire knowledge on funding sources and implementation strategies to obtain additional funding and assist in designing evidence-based interventions to improve access to quality cost-effective care for Alzheimer's disease through replication. In addition, equipping stakeholders with the knowledge of current national initiatives to improve dementia care provides platforms and talking points for contacting legislative representatives for support or opposition.
Through outreach and provider education, the H.R. 1873/S880 seeks to provide access to high-quality, cost-effective care to all older adults with dementia and their caregivers. Caregivers of older adults with Alzheimer's disease often experience caregiver fatigue and stress. Passage of H.R. 1873 would boost emotional and financial wellness in caregivers who are often overwhelmed with the daily activities necessary in the care of older adults with Alzheimer's disease. The U.S. economy would also benefit with early diagnosis and treatment of Alzheimer's disease, demonstrating a reduction in Medicare dollars spent. The Alzheimer's Association of America (2019a) cites Alzheimer's disease as the number one most expensive chronic disease to manage in the United States.
Health care providers hold a key position in the bill. The only potential negative identified by the passage of this legislation is lack of qualified providers to provide the comprehensive care planning intervention. However, one positive solution to this unintended consequence is the extension of the bill to allow physicians and other qualified health professionals to provide the same interventions. The Alzheimer's Association of America (2019b) fully endorses this legislation and is actively engaging in advocacy strategies for bipartisan support of this bill in Congress.
One recommendation to improve the legislation would be to expand the definitions and reimbursements to allow a multidisciplinary approach to care planning inclusive of other professionals such as dieticians, social workers, and chaplains. Success of the bill passage could be measured in a variety of ways looking at several different outcomes, including incidence of the diagnosis of Alzheimer's disease and other dementias, time from diagnosis to death, caregiver fatigue rates, and provider competency surveys.
One of the original goals of the National Alzheimer's Project Act was to prevent and effectively treat Alzheimer's disease by the year 2025. The success of this initiative as a part of the National Alzheimer's Project Act should be measured over this time period. Members of the National Alzheimer's Project Act are accountable to Congress on an annual basis in which they must report on implementation activities and project successes or failures.
Many studies exist in the literature supporting increased funding and advocacy for dementia screening and improved treatment guidelines. However, a landmark study was published that examined racial disparities in the incidence of Alzheimer's disease. The study analyzed dementia incidence in approximately 300,000 health care consumers age ≥64. The researchers concluded dementia incidence was higher in African American and American Indian/Alaska Native individuals than any other ethnic group (Mayeda, Glymour, Quesenberry, & Whitmer, 2016). This study was unique because most of the research on racial disparities in older adults with dementia focuses on African American compared to Caucasian individuals. The research provides implications for advanced nursing practice in the form of appropriate screening tools and prompt treatment. Furthermore, the findings revolutionize evidence-based practice for advanced practice nurses and medical providers by the identification of valid risk factors for Alzheimer's disease and other dementias.
In addition to racial disparities, social injustices and economic challenges may also have impacts on access to cost-effective quality care for minority aging adults with Alzheimer's disease and other dementias. Dilworth-Anderson, Pierre, and Hilliard (2012) identified poverty, health illiteracy, and inequitable geographic areas as major barriers that limit access for this special population. Furthermore, the authors expanded on health illiteracy as a major reason for lack of identification of early disease recognition (Dilworth-Anderson et al., 2012). Delays in diagnoses occurred when using improper and non-culturally sensitive screening methods, contributing to inappropriate management plans for minority individuals with cognitive complaints.
Implications for Practice, Policy, and Research
Health care professionals need to be cognizant of assessment models and resource availability for persons with cognitive decline and Alzheimer's disease. According to the Institute for Health Care Improvement (2019), age-friendly health care systems were developed to guide the health care practitioner through the model, What Matters, Medication, Mentation, and Mobility (The 4Ms), designed to promote positive health care outcomes in older adults. One must remember patient-centered care or what matters most is at the pinnacle of the decision process aligning with evidence-based practices. The framework continues to highlight medication safety to ensure that mobility and mentation are not affected by medication consumption. Assessment protocols suggest identifying, treating, and managing symptoms of dementia or delirium. Health care practitioners must also maintain client safety by enabling function and mobility by promoting patient-centered care or what matters most for the client.
The Alzheimer's Association of America (2019d) has created and provided a tool kit to educate health care professionals and health systems on best practices for Alzheimer's dementia management and billing. Although G0505 implementation had been selectively utilized, the knowledge deficit in coding practices can be addressed by using the evidence-based tools provided by the Alzheimer's Association of America (2019b).
As with any legislation, proponents and opponents need to consider cost factors and economic effects. The provision of high-quality comprehensive chronic care to all older adults with dementia is a major benefit. Given the economic and emotional burden incurred by this progressive, debilitating disease, a chronic care model may be the answer to improve the quality of life for caregivers and older adults with Alzheimer's disease and other dementias.
The current authors discovered reliable evidence regarding a gap in care related to lack of knowledge of current policies created to benefit the health care needs of individuals with Alzheimer's disease and their families. Due to the economic impact of debilitating diseases, it is important for health care professionals to be patient care advocates and change agents to administer comprehensive care plans for individuals with Alzheimer's disease. The current research can be used to inform other health care professionals of legislation impacting national initiatives. Further research is necessary to guide policy in older adults with Alzheimer's disease.
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