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. Author manuscript; available in PMC: 2018 Jan 14.
Published in final edited form as: Health Aff (Millwood). 2014 Apr;33(4):650–657. doi: 10.1377/hlthaff.2013.1268

Alzheimer’s Disease And Nursing Homes

Joseph E Gaugler 1, Fang Yu 2, Heather W Davila 3, Tetyana Shippee 4
PMCID: PMC5767317  NIHMSID: NIHMS932455  PMID: 24711327

Abstract

Close to two-thirds of all US nursing home residents have some type of cognitive impairment such as Alzheimer’s disease, and the quality of care and quality of life of these people has long been called into question. In this overview we first clarify the ongoing importance of nursing home care for people with Alzheimer’s, even as policy makers “rebalance” long-term supports and services with home and community-based programs. We next identify the components of optimal care for people with Alzheimer’s in nursing homes, and we highlight care innovations already in use. Finally, we summarize policy-relevant challenges to implementing best practices and innovations and explore potential policy solutions. Federal and state policy makers have a critical role to play in ensuring that nursing home residents with Alzheimer’s disease have access to the appropriate, high-quality care that they and their families expect.

Currently 5.2 million people in the United States suffer from Alzheimer’s disease—a chronic neurological illness that can last anywhere from three to twenty years.1 Some approaches to diagnosis and treatment2 suggest that patients pass through multiple stages of Alzheimer’s disease, including no apparent cognitive decline; moderate cognitive decline, which might include forgetting the name of a spouse and being unaware of recent events, and which requires considerable assistance with activities of daily living (ADLs); and severe cognitive decline, at which stage the patient has largely lost verbal abilities and psychomotor skills and depends on others for ADL assistance.

As Alzheimer’s disease progresses in severity, the needs and treatment of the patient evolve as well. Much effort has been devoted to “rebalancing” long-term care services to support alternatives to nursing home care. However, by the later stages of Alzheimer’s disease, it could be argued that there are few viable substitutes for the round-the-clock, intensive, skilled care that nursing homes provide. This is particularly apparent when one considers the behavioral and psychiatric symptoms of Alzheimer’s disease, which are among the most challenging aspects of dementia for families to manage and often necessitate nursing homes’ level of supervision and care.1,3

Sixty-four percent of Medicare beneficiaries living in nursing homes have Alzheimer’s disease or a related dementia, which suggests that any efforts to improve nursing home care must address Alzheimer’s disease in some fashion.1 In 2008, Medicaid payments for “dual eligibles”—people who are eligible for some type of Medicaid benefit as well as Medicare Part A, Part B, or both—who had Alzheimer’s were nineteen times higher than for dual eligibles who did not, and much of this disparity is due to the costs of nursing home use.1

People with Alzheimer’s disease or a similar dementia are at an increased risk for falls, delirium, and other negative conditions once they have become residents of nursing homes.4 Although nursing homes might not necessarily create these problems, such findings emphasize the complexity of caring for people with Alzheimer’s as the severity of their dementia progresses.

So that people with Alzheimer’s disease can have an appropriate quality of life, policy makers must help ensure that high-quality nursing home care is accessible. This article aims to identify the components of optimal nursing home care for people with Alzheimer’s and existing innovations designed to achieve that level of care, to summarize the barriers to implementing innovative or high-quality nursing home care, and to explore policies that could improve nursing home care for people with Alzheimer’s.

Optimal Care

Optimal dementia care in the nursing home setting adopts a person-centered perspective and focuses on maximizing residents’ quality of life. Person-centered care refers to care that is individualized and adapted to the changing preferences, abilities, and needs of each person.

Quality of life is a complex and multidimensional concept involving domains of functional status, social functioning, comfort, security, personal agency, and emotional and physical health.5 Quality of life decreases as people with Alzheimer’s disease progress from the mild to the severe stages of the disease. A number of factors—such as depression, behavioral symptoms, and functional impairment—contribute to poor quality of life.6

The delivery of optimal care in nursing homes relies on the following components to ensure appropriate quality of life for people with Alzheimer’s disease.

PROPER STAFFING

Adequate staffing, consistent staff assignments, staff training, and the quality of staff-resident relationships strongly influence the quality of life of nursing home residents with Alzheimer’s.7 Efforts are under way nationally to increase the knowledge about Alzheimer’s disease and competency in caring for people with the disease on the part of nursing home staff, including social workers, recreational therapists, floor nurses, and nursing assistants.8 Training programs for these workers have been shown to increase their knowledge and feelings of competence in caring for residents with Alzheimer’s disease.9

REGULAR AND THOROUGH ASSESSMENTS

Federal and state regulations require regular formal assessments of all nursing home residents using the Minimum Data Set of the Centers for Medicare and Medicaid Services (CMS). However, these assessments are insufficient for individualizing care for people with Alzheimer’s.10 More in-depth assessments are required to measure the stage of a resident’s Alzheimer’s disease and related issues (Exhibit 1).

EXHIBIT 1.

Areas To Be Included In A Comprehensive And Holistic Assessment For People With Alzheimer’s Disease

General domain Specific areas to be assessed
Cognitive Dementia stage (early, middle, or late; or mild, moderate, or severe)a
Decision-making capacitya
Communication abilitiesa
Medical Medical history of acute and chronic conditions
Risk for the following components of geriatric syndromes: hearing loss, visual impairment, malnutrition, obesity, weight loss, polypharmacy (concurrent prescribing of multiple antipsychotic drugs), delirium, falls, frailty, pain, sleep disorders, and urinary incontinence
Affective Mood disorders such as depression and anxiety
Behavioral and psychological symptoms of dementiaa
Social Personal background (education, employment history, personality, habits, hobbies and other recreational activities, smoking, and alcohol use)
Social support network
Cultural preference (for example, Hispanic, African American, LGBT culture)
End-of-life planning
Advance directives
Economic Ability to pay for needed care
Environmental Environmental safety, personalization of bedroom, and respect for privacy
Spiritual Spiritual needs and preferences
Functional status Physical fitness, including muscular strength and aerobic fitness
Physical functioning, such as the ability to transfer into and out of bed, lower extremity strength, balance, gait speed, and mobility
Basic activities of daily living
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SOURCE Authors’ analysis. NOTE LGBT is lesbian, gay, bisexual, transgender.

a

Specifically affected by Alzheimer’s disease. The other items are routinely assessed in nursing homes using the Minimum Data Set of the Centers for Medicare and Medicaid Services.

CARE PLANNING AND PROVISION

Effective care planning and provision must include the resident, his or her family, and staff. It must also build on the remaining abilities of residents with Alzheimer’s instead of merely focusing on their deficits. For example, facility staff could allow adequate meal time so that residents who can still use utensils and feed themselves could eat at their own pace, instead of being fed by staff to finish meals on a predetermined schedule. A cure for Alzheimer’s is not yet on the horizon, and current drugs offer limited benefits.11 However, care planning that involves a variety of available pharmacological and nonpharmacological approaches can meet the needs of people with Alzheimer’s and improve their quality of life once they are in a nursing home.1,12,13

APPROPRIATE MANAGEMENT OF SYMPTOMS

Behavioral and psychological symptoms of dementia are among the most troublesome aspects of the disease, and they affect 50–80 percent of people with Alzheimer’s.14 Behavioral and psychological symptoms such as aggression, depression, or disinhibited behavior are increasingly recognized as efforts by residents to communicate their unmet physical or emotional needs.15

The initial management of these symptoms should be nonpharmacological (Exhibit 2) and delivered by trained staff.1,10,16,17 If such interventions are ineffective, drugs may be appropriate for people with psychosis and those with severe behavioral and psychological symptoms such as aggression. However, the use of drugs for behavioral and psychological symptoms is associated with serious adverse effects.17,18 Thus, alternative strategies should be considered before drug treatments are initiated.16

EXHIBIT 2.

Nonpharmacological Interventions For Behavioral And Psychological Symptoms of Dementia

Type of intervention Specific interventions
Sensory therapy Sensory stimulation
Music
White noise
Massage or therapeutic touch
Activity therapy Physical activities
Recreational activities
Social contact One-on-one interaction
Pet visits
Simulated presence therapy and videos
Behavior therapy Cognitive behavioral therapy
Differential reinforcement
Stimulus control
ADL modification Modification of ADL care to meet individual needs
Environmental modifications Access to the outdoors
Outdoor walks
Wandering areas
Natural environment
Enhanced environment
Reduced-stimulation environment
Medical or nursing care interventions Bright-light therapy
Sleep therapy
Pain management
Hearing aids
Removal of physical and chemical restraints
Staff training Educational programs that address specialized dementia knowledge and skills; communication issues; strategies for providing person-centered care; management of behavioral and psychiatric symptoms; understanding and managing the emotional needs of people with dementia and their family members; specific aspects of care (for example, treating pain and providing food, fluid, and social engagement)
Combination therapies Use of multiple interventions that are either individualized or group based, including a comprehensive, integrated multidisciplinary approach that combines psychiatric and nursing interventions for severe behavioral problems; and a combination of educating nursing staff and physicians, cognitive screening, an interdisciplinary review of treatment, and consultation with a nurse practitioner with expertise in the evaluation and management of dementia
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SOURCE Authors’ analysis of the following sources: Thies W, et al. 2013 Alzheimer’s disease facts and figures (Note 1 in text); American Geriatrics Society, American Association for Geriatric Psychitary. Consensus statement on improving the quality of mental health care in U.S. nursing homes (Note 7 in text); Seitz DP, et al. Pharmacological treatments for neuropsychiatric symptoms of dementia in long-term care (Note 13 in text); and Seitz DP, et al. Efficacy and feasibility of nonpharmacological interventions for neuropsychiatric symptoms of dementia in long term care (Note 14 in text). NOTE ADL is activities of daily living.

ENVIRONMENTS CONDUCIVE TO CHANGING ABILITIES

People with Alzheimer’s disease become unable to find their way around even familiar environments and lose the ability to initiate meaningful activities or social interactions as the disease progresses.19 Characteristics of the physical environment such as floor plans, furnishings, lighting, and colors can affect residents’ environmental orientation—that is, their ability to find their way in the facility or unit. Of these characteristics, the floor plan is the most influential.

Personalized habits or rituals of bathing and showering, such as the use of warm “towel baths,” as well as the use of individualized non-pharmacological interventions can effectively manage behavioral symptoms and reduce depression in nursing home residents with Alzheimer’s disease.20,21

Innovations

THE CULTURE-CHANGE MOVEMENT

The culture-change movement aims to dramatically transform nursing homes by incorporating many of the components of optimal care described above.22 The core principles of culture change entail the following: altering physical environments to create a more homelike atmosphere that allows residents to direct their daily activities; making the most of opportunities for collaborative decision making (in particular, involving direct care staff—such as social workers, recreational therapists, floor nurses, and nursing assistants); changing staffing patterns to encourage closer relationships between staff and residents; and increasing the focus on systematic quality improvement processes.22 In the culture-change model, residents’ quality of life is prioritized along with the delivery of high-quality clinical care.

Some of the culture-change models that have received the most attention in the United States are the Eden Alternative, the Wellspring model, and the Green House design.

The Eden Alternative was one of the first culture-change models. It focuses on environmental design and social programming intended to make nursing facilities more homelike and to engage residents to counter feelings of boredom, loneliness, and helplessness.22,23 An overarching goal is to connect residents with the larger world; thus, pets, plants, and children are regularly brought into the facility.24 The program stresses the important role of direct care staff in meeting residents’ quality-of-life needs, and facilities that adopt this model are designed to resemble neighborhoods or homes.24

The Wellspring model prioritizes empowering staff to make decisions that affect residents’ care, uses consistent staff assignments, and focuses on clinical quality improvement and collaboration. It sets up learning collaboratives consisting of eight to ten facilities that are designed to share ideas, empower care staff, and build partnerships between managers and residents.22

The Green House design focuses on providing skilled nursing care in small, homelike settings, with seven to ten residents per house who are encouraged to engage in meaningful activities.25,26 The radical redesign of nursing homes’ physical environments and staffing are central to the Green House model, which considers both flexibility in scheduling and person-centeredness as central to providing homelike care.25,26 The Green House model uses “universal workers,” or staff who take on multiple roles related to resident care and life in the house.25

The physical environment of Green House facilities is distinctive: The homes are freestanding and small by nursing home standards, and they have private bedrooms and bathrooms and shared common areas, including a kitchen, dining room, and hearth area.25

Some studies of culture-change models have emphasized their implementation processes instead of residents’ outcomes. Research findings related to the efficacy of culture-change models have been mixed.27

OTHER MODELS

A number of other innovative models and practices aim to improve the experience of people with Alzheimer’s disease in residential settings. For example, the Lakeview Ranch program provides care for people in advanced stages of Alzheimer’s disease who have exhibited challenging behavioral symptoms such as aggression in other care settings. Established in 1999, the program operates in two residential homes in rural Minnesota. The program uses high ratios of staff to residents (1:3) to increase residents’ quality of life by taking the most advantage of their remaining abilities. Trained using a specialized curriculum, staff members offer a variety of tailored psychosocial activities such as interactions with animals, music, and spiritual therapy. Lakeview Ranch has reduced hospitalizations and the use of behavior-related medications for particularly disruptive people with Alzheimer’s disease who had frightened staff or injured residents in other facilities, and for whose care the existing health care system has few alternatives.28

A number of programs have attempted to change the culture of Alzheimer’s disease care in long-term care settings by focusing on the training of nursing assistants. One program, called Awakenings, has been implemented by Ecumen, a nonprofit organization that operates a variety of senior services and housing options. One of the program’s key features is that specially trained nursing assistants (known as Awakenings aides) spend meaningful one-on-one time with residents with Alzheimer’s disease to improve their quality of life. For example, an assistant will massage a resident’s hands or play games with a resident. The emphasis is on human relationships and nonpharmacological interventions.

PAY-FOR-PERFORMANCE APPROACHES

Pay-for-performance approaches have also been heralded as innovative ways to improve the quality of nursing home care for people with Alzheimer’s disease as well as other residents. Minnesota’s Performance-Based Incentive Payment Program funds quality improvement efforts initiated by providers, who also identify the measurable outcomes to be improved. The program began in 2006 and is administered by the Minnesota Department of Human Services. Providers are chosen for funding through a competitive proposal process. Each applicant’s proposal describes the context of the problem, the goals to be addressed, the program’s sustainability, and other key issues. Grants are usually for one to three years. Accountability measures include a 20 percent reduction in funding if providers do not demonstrate improvement in their selected outcomes.

A comparison of providers who participated in the program to nonparticipating providers suggested that the participating providers exhibited greater improvements in their quality of care.29

INTEGRATED MODELS

Several innovations have attempted to integrate long-term care with acute or primary care services to reduce the negative outcomes that can occur when older people transition across care settings. Several of these integrated models, such as the Program of All-Inclusive Care,30,31 are part of community-based long-term care programs. However, models that blend acute and long-term care services have also been implemented in nursing homes. For example, the Evercare model is designed to offer managed care to nursing home residents via Medicaid and Medicare waivers. Originally tested in nine states in the early 2000s, Evercare enrolls residents into health maintenance organizations with Medicaid or private insurance covering the nursing home costs.32 Geriatric care specialists—both geriatricians and nurse practitioners—offer more intensive primary care to residents than is usually offered in such settings. Another key component of the model is an emphasis on coordinating these activities with the facility’s nurses and direct care workers.

Evercare covers the costs of all care provided to nursing home residents, instead of shifting costs from one payer to another—as happens when, for example, a nursing home uses a hospital to provide certain services, which could shift costs from Medicaid to Medicare. By offering more comprehensive geriatric care to residents, Ever-care is designed to reduce hospitalizations and other costly transitions of nursing home residents. Initial evaluations suggest that Evercare has achieved this goal.33

Challenges To Implementing Innovations

TIMELY ACCESS TO NURSING HOME CARE

Given the fiscal constraints that many states are confronting, there is the risk of limiting or tightening eligibility criteria for Medicaid nursing home care to reduce costs.34 State eligibility assessments generally include whether a person can perform ADLs and instrumental activities of daily living independently, as well as other domains.

People with Alzheimer’s disease may be at a disadvantage in many eligibility screening protocols because the needs that are counted to establish eligibility may inadequately reflect their degree of dependence. For example, functional impairments may be weighted more heavily than behavioral or cognitive impairments, resulting in restricted eligibility for nursing home care for some people with Alzheimer’s disease.34

DISPARITIES IN INNOVATION

Another potential challenge is the disparity in nursing home quality and innovation. Vincent Mor and others have characterized this disparity as the two tiers of nursing home care in the United States.35,36 The “lower” tier includes nursing homes that largely serve Medicaid recipients, are for profit, are located in the poorest areas of the country, and have a history of care deficiencies.35,36

Recent studies of the implementation of culture change have suggested that such efforts are more likely to occur in nonprofit, resource-rich nursing homes that are not funded by Medicaid.36,37 Some of the reasons why culture change does not take place in less wealthy nursing homes are leadership turnover and the lack of infrastructure needed to initiate it.36

Similar trends in disparity have emerged in the implementation of pay-for-performance in nursing homes.29 Thus, it is possible that efforts to make innovations in nursing home care for people with Alzheimer’s disease, if not adequately encouraged across facility types, could further exacerbate the existing disparity between nursing home tiers.

INTEGRATION OF ACUTE AND LONG-TERM CARE SERVICES

The barriers to integrating acute and long-term care services in nursing homes include fragmented funding sources,38 fear of financial risk on the part of providers (and the tendency to cut costs and services), and the dearth of training and knowledge necessary to seamlessly combine the two types of services.39

Another related problem is that nursing homes are increasingly focused on providing postacute and rehabilitative services for Medicare beneficiaries. The percentage of Medicaid long-term stays in nursing homes has declined considerably during the past fifteen years, and nursing homes have sizable financial incentives to continue this trend. For example, Medicaid pays an average of $125 a day for a long-stay resident. In contrast, Medicare typically reimburses nursing homes approximately $500–$600 a day for rehabilitative or postacute stays.40

RELUCTANCE TO ENGAGE IN INNOVATION

Comprehensive culture change in nursing homes has proceeded slowly. In a 2007 national survey, 5 percent of nursing homes reported that full culture change had occurred at their facilities, and one-third said that they had implemented some level of culture change.41 Staff turnover, providers’ reluctance to engage in quality improvement efforts, a focus on singular quality indicators at the expense of others, regulatory requirements that often conflict with efforts to change systems, and reimbursement models were cited as barriers to culture change or nursing home innovation by the survey respondents.41

Potential Policy Solutions

INCREASED ACCESSIBILITY

The Alzheimer’s Association has developed a series of recommended policies that states could adopt to ensure that people with Alzheimer’s receive equal access to needed nursing home care. These policies include the expansion of ADL dependency assessments to include the need for verbal assistance (or cueing) in performing tasks; the proper weighting of Alzheimer’s disease symptoms in eligibility assessments, such as behavioral and psychological symptoms; and the removal of the eligibility requirement that people must have medical or nursing needs.34 Adopting these policies would avoid excluding people with Alzheimer’s who truly require nursing home care.

CULTURE CHANGE

Tools are now available to facilitate the direct engagement of nursing home administrators with state officials to understand culture-change efforts.42 Revising construction codes and creating tax credits or reducing interest rates with the objective of replacing obsolete nursing homes (many of which resemble or occupy old hospitals) may also be needed to implement overall culture change.

Policy makers should consider revising regulations to encourage person-centered care practices, establishing programs that reward innovation in culture-change efforts, and—perhaps most important—increase efforts to ensure a supply of flexible long-term care staff members who are adequately trained and paid and can implement culture change in nursing homes. Policy makers must also develop incentives, fellowships, and other initiatives to expand geriatric care training. The United States is expected to need an additional 3.5 million health care professionals by 2030 to adequately care for its aging society.43

Recent studies of the implementation of culture change have suggested that more generous state Medicaid reimbursement rates are linked to more extensive culture change.36 This is one potential way to reduce the disparity in culture change between resource-rich and resource-poor nursing homes. In particular, increased state Medicaid payments to nursing homes have been associated with environmental improvements such as single rooms and staff compensation packages that are indicative of culture change.37

It is likely that increasing Medicaid payments is only the first step toward culture change. As David Grabowski and colleagues suggest, it is also necessary to craft innovative payment approaches that help nursing homes meet the substantial up-front costs of implementing culture change.36 For example, Arkansas is using funds collected from civil monetary penalties to help cover the up-front costs of implementing the Green House and Eden Alternative initiatives.36

MEDICAID MANAGED LONG-TERM CARE SERVICE INTEGRATION

The Alzheimer’s Association has developed recommendations to improve Medicaid managed long-term care programs for people with Alzheimer’s disease.44 One recommendation is to involve all stakeholders when developing Medicaid long-term plans or initiatives to integrate services. A second is that plans should specifically include provisions to identify and address the needs of people with Alzheimer’s. This means adapting the structures and processes—from enrollment to outcome assessment—of integrated programs.

A third recommendation is that Medicaid recipients with Alzheimer’s disease and their family caregivers should be informed about various acute and long-term care service options. A fourth is that plans should incorporate a number of quality assurance provisions. These provisions include ensuring the availability of managers and providers who are trained to meet the needs of people with Alzheimer’s; having nursing home residents participate in regular care assessments and including family members, where possible and appropriate, in care delivery; and ensuring that plans include evidence-based guidelines, data collection, and analysis to inform improvements relevant to care delivery.44

PAY-FOR-PERFORMANCE

The CMS Quality Assurance and Performance Improvement (QAPI) initiative is designed to promote quality improvement on the part of nursing homes via an emphasis on data-driven measures and evaluation.45 The goals of state-level initiatives such as Minnesota’s Performance-Based Incentive Payment Program are aligned with the objectives of QAPI. As Greg Arling and coauthors suggest, however, one reason why the Minnesota program has had considerable success is its use of grants to make financial resources available to providers so that facilities “can use these supplementary funds to implement evidence-based solutions to their highest-priority quality problems within a local facility context.”29(p1637)

As currently designed, QAPI will depend upon the existing regulatory environment to motivate quality improvement for nursing homes. Given the success of the Minnesota program, the adoption by QAPI of similar incentives to facilitate quality improvement might be warranted.

Conclusion

People with Alzheimer’s disease are disproportionately represented in nursing homes, and the costs and challenges involved in providing appropriate care to people with Alzheimer’s disease require a number of innovations in nursing home care, systems organization, and relevant federal- and state-level policies. Entrenched funding streams and increasing disparities between resource-rich and resource-poor nursing homes are barriers to innovative Alzheimer’s disease care in nursing homes.

Policies to make assessments of people with Alzheimer’s disease more appropriate to ensure their eligibility for needed nursing home care; to increase state Medicaid payments to nursing homes that implement culture change so that disparities among nursing homes are eliminated; and to expand pay-for-performance models that create financial incentives (as opposed to penalties) to achieve provider-identified quality objectives that are aligned with QAPI or similar initiatives could improve the quality of care and life for the growing number of US nursing home residents with Alzheimer’s disease.

Acknowledgments

Support for this research was provided by a grant from the National Center for Research Resources of the National Institutes of Health to the University of Minnesota Clinical and Translational Science Institute (Grant No. 1KL2RR033182-02).

Contributor Information

Joseph E. Gaugler, Associate professor and McKnight Presidential Fellow in the School of Nursing and Center on Aging, University of Minnesota, in Minneapolis

Fang Yu, Associate professor in the School of Nursing, University of Minnesota.

Heather W. Davila, Research coordinator in the School of Nursing, University of Minnesota

Tetyana Shippee, Assistant professor in the School of Public Health, University of Minnesota.

NOTES

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