Policy Brief

Quality Care for Persons with Alzheimer's

by Tara Lubin

September 2005

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The Face of Alzheimer’s

Pervasive and debilitating, Alzheimer’s disease affects a large and growing number of American individuals and families. This disorder damages the brain’s nerve cells; impairs memory, thinking and behavior; and, eventually, leads to death. Approximately 4.5 million Americans now suffer from Alzheimer’s.¹ Since 1980, the number of diagnosed cases has more than doubled in this country, and it is projected to continue to grow; by 2050, 11.3 million to 16 million individuals will be diagnosed with Alzheimer’s.²

To understand why Alzheimer’s sufferers have special care needs, one must understand the disease and its effects. Cognitive impairments are varied, unique to the individual and often incapacitating. The most common deficits are memory loss, language problems, lack of perception skills, inability to organize physical movements, inability to think abstractly, attention deficit and impaired judgment.³ These disabilities manifest themselves in different ways in each individual, and without understanding them it is impossible to deliver quality care to those with Alzheimer’s.

The abundance of Alzheimer’s cases has had ramifications throughout the long-term care field. Many people with the disease no longer can be cared for at home, leading to an overwhelming number of cases in both nursing homes and assisted living residences. In nursing homes, half of all residents have Alzheimer’s disease or a related disorder.⁴ In assisted living residences, estimates of Alzheimer’s residents range from one-third to one-half of residents.

Some nursing homes and assisted living residences have attempted to deliver quality care to these residents by creating special care units (SCUs) that are designed to cater to the needs of people with Alzheimer’s and others with dementia. However, the sheer number of people with Alzheimer’s in these residences means that SCUs cannot begin to accommodate all of them. Because the majority of those with dementia-related disorders are not in SCUs, ensuring quality care for people with Alzheimer’s will require more than designating and regulating special care units.

Research Studies

State policymakers can gain a better understanding of the prevalence of Alzheimer’s disease in assisted living residences by looking at several studies that provide more specific information. Studies vary in their enumeration of people with Alzheimer’s or related dementia in assisted living residences for a few reasons. First, many cases are undiagnosed and because residence staff members may be unaware of the symptoms, they cannot identify the disorder. Study findings also vary if they include residences of differing sizes.

A 2002 study conducted in Maryland found that 68 percent of the residents in assisted living residences had some form of dementia. The study included both large and small residences (small is defined as fewer than 16 beds).⁵

The Collaborative Studies of Long-Term Care, conducted in 1997-1998 in four states—Florida, Maryland, New Jersey and North Carolina—found that 45 percent to 63 percent of assisted living residents had cognitive impairment indicative of dementia. The percentage varied depending on the size and type of residence, and was highest in small residences, where about a third (32 percent) of residents had mild to moderate cognitive impairment and a similar number (31 percent) had severe cognitive impairment.⁶

The 1998 National Survey of Assisted Living Facilities, a national random sample study of more than 1500 residences with 11 or more beds, found that about one-third of assisted living residents had moderate to severe cognitive impairment indicative of dementia.⁷

Care Recommendations

The Alzheimer’s Association recently published Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes, a well-researched comprehensive guide to improving the quality of life of people with dementia in nursing and assisted living residences. It includes recommendations on food and fluid consumption, pain management and social engagement. Twenty-four organizations involved in dementia care have endorsed these guidelines. The recommendations can help states craft and refine legislation aimed at quality care. ⁸

As outlined in the practice recommendations, studies show the importance of providing quality care to long-term care residents who have Alzheimer’s disease by ensuring they are treated with an emphasis on individuality.⁹ Care should be tailored to the changing abilities and needs of each resident. This allows well-trained staff to be aware of the particular situation of each person and sensitive to potential signs of pain or discomfort that he or she may be unable to voice.

Policy Challenges

A common problem in considering legislation for Alzheimer’s care in long-term care settings is focusing on special care units. Because most people with Alzheimer’s disease are not in SCUs, regulating only these units falls far short of helping the target population.

States have a few policy options to help ensure that all those with Alzheimer’s in long-term care settings receive the best possible quality care. One popular route is to mandate dementia training for nursing home and assisted living employees. Staff who understand Alzheimer’s and its symptoms are much better equipped to provide appropriate care for those with the disease. Other steps states can take to ensure quality care for all Alzheimer’s residents include implementing procedures to prevent unsafe wandering and physical harm, mandating 24-hour awake staff, and offering special activities that cater to those who suffer from dementia.

Although policies that focus only on special care units are insufficient to meet the needs of Alzheimer’s residents in long-term care settings, legislation pertaining to SCUs is an important component of state oversight. Requiring SCUs to disclose the kinds of services provided, as well as information about what behaviors can be managed and what behaviors would cause discharge, would be a constructive step. Until recently, SCUs were not required to meet any standards beyond those of the residences—often, they would be used as marketing tools with no special features other than providing a separate locked area.¹⁰

State Approaches

States continue to respond to the needs of Alzheimer’s residents by regulating nursing homes and assisted living residences. As of 2004, 44 states reported provisions for long-term care settings to serve people with Alzheimer’s disease or dementia, an increase from 36 in 2002 and 28 in 2000.¹¹ This includes all states that have any kind of provisions for settings that serve people with Alzheimer’s or dementia. Also in 2004, 36 states had dementia training requirements and 27 states had disclosure requirements.¹²

A prime example of legislation for training requirements is Arkansas’s law. It requires that nurse aides in all nursing homes and assisted living residences receive at least 90 hours of training, including at least 15 hours of Alzheimer’s and dementia training.¹³ Oklahoma provides another significant example of mandatory training legislation. The state requires a minimum of 10 hours of training on how to care for residents with Alzheimer’s disease for certified nurse aides.¹⁴

Illinois is one state that is leading the way in disclosure legislation. The Illinois law—the Alzheimer’s Special Care Disclosure Act—requires that nursing homes and assisted living residences that include a special care unit disclose to the state licensing agency or potential or current client, upon request and in writing, detailed information about the care that is offered. This information includes how the care or treatment provided is uniquely appropriate for people with Alzheimer’s; the philosophy of care for Alzheimer’s residents; the pre-admission, admission and discharge procedures of the residence; the evaluation, planning process and implementation guidelines for the care and treatment of those with Alzheimer’s; activities available to residents; the role of family members in the care of residents; and the costs of care and treatment.¹⁵

In addition, Illinois has implemented strict penalties for noncompliance with these disclosure requirements. The state has made violating the Alzheimer’s Special Care Disclosure Act analogous to a business offense, and violators can be fined up to $500 for the first offense and up to $1,000 for a subsequent offense.¹⁶

Some examples follow of how other states are addressing training and disclosure issues in both legislation and regulation.

In Kentucky, an assisted living community must disclose, among other things, a description of any special programming, staffing or training if the residence markets itself as having any of these features for individuals with particular needs or conditions, including Alzheimer’s disease. The community also must retain a description of dementia-specific staff training that is provided, including the content, the number of offered and required hours, the schedule and the staff who are required to complete the training.¹⁷ Although these are positive steps, one limitation is that the large numbers of Alzheimer’s residents who live outside SCUs do not benefit from these provisions.
Minnesota’s disclosure requirements are quite specific. Special care units are required to submit written disclosure to people seeking residence, or their representatives, and it must include: a statement of the unit’s philosophy; criteria for determining who may be admitted to the unit; description of the process used for assessment and establishment of the service plan; staff credentials; physical environment, including security features; description of programs and activities; availability of family support programs; and fee schedules. Supervisors and direct care staff must be trained in dementia care, which will include an explanation of Alzheimer’s disease and related disorders, problem solving with challenging behaviors and communication skills.¹⁸
Missouri legislates requirements for a spectrum of long-term care settings. In particular, in assisted living residences, staff involved in the delivery of care to Alzheimer’s residents must participate in dementia-specific training in specified areas—an overview of Alzheimer’s disease and related dementias, communication with people who have dementia, behavior management, promotion of residents’ independence in daily activities, and family issues. In addition, those who have daily contact with Alzheimer’s residents but do not provide care must receive dementia-specific training in two of these five areas—the overview of dementia and communication with people with dementia.¹⁹
In Rhode Island, any long-term care setting that has a special care unit must fill out a standard form to be submitted to the licensing agency and to any potential resident. The form must disclose the residence’s philosophy; information on pre-occupancy, occupancy and termination of residence; assessment; service planning and implementation; staffing patterns and training; physical environment; activities offered; family role in care; and program costs. Training is required for staff in all assisted living residences in Rhode Island; in addition, within 30 days of hire and prior to working alone, staff in settings licensed for dementia care must receive at least 12 hours of training on understanding various dementias, communicating with dementia residents and managing behaviors.²⁰

Benefits of High-Quality Care

Improving quality of care depends upon availability of funds to implement such measures. It is important to remember, however, that strategies to improve the quality of care have a great deal of potential to save money over time. First, by training certified nurse aides (CNAs) thoroughly and compensating them well, nursing homes and assisted living residences encourage staff loyalty, often resulting in less turnover. Turnover also is avoided by providing CNAs with the knowledge necessary to deal with challenging care situations that can prove frustrating. Staff knowledge can translate to significant savings in terms of time spent recruiting and training new staff. Improving the quality of dementia care also has the potential to avoid costly lawsuits, and can help to improve survey and certification issues. This, in turn, can improve the residence’s reputation and enhances its ability to attract new residents. Finally, it is appropriate and moral to provide the highest quality dementia care possible. Failing to appropriately care for people with Alzheimer’s disease diminishes their quality of life and puts the residence at risk of excess staff turnover and liability for poor quality care.

Notes

Alzheimer’s Association, "Statistics about Alzheimer’s Disease," http://www.alz.org/AboutAD/statistics.asp, May 25, 2005.
Ibid.
Jitka M. Zgola, Doing Things: A Guide to Programming Activities for Persons with Alzheimer’s Disease and Related Disorders (New York: The Johns Hopkins University Press, 1987).
Alzheimer’s Association, "Statistics about Alzheimer’s Disease."
Alzheimer’s Association, "People with Alzheimer’s Disease and Dementia in Assisted Living," (Advocacy and Public Policy Division), Oct 2004.
Ibid.
Ibid.
Alzheimer’s Association, "Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes," (Chicago: Alzheimer’s Association, 2005).
Ibid.
Alzheimer’s Association, "Special Care Units," http://www.alz.org/advocacy/priorities/longtermcare/specialcare.asp, June 2, 2005.
Robert Mollica, senior program director, National Academy for State Health Policy, email from author, "Requirements for Facilities Serving Residents with Dementia," June 12, 2005.
Ibid.
State of Arkansas, House Bill 1442, 85th General Assembly, Regular Session 2005, http://www.arkleg.state.ar.us/ftproot/bills/2005/public/HB1442.pdf.
State of Oklahoma, Senate Bill 950, http://www.sos.state.ok.us/documents/Legislation/50th/2005/1R/SB/950.pdf.
State of Illinois, House Bill 1486, Public Acts, 90th General Assembly, http://www.ilga.gov/legislation/publicacts/pubact90/acts/90-0341.html.
Ibid.
Lyn Bentley, "Assisted Living State Regulatory Review 2005" (Washington, DC: National Center for Assisted Living, March 2005), http://www.ncal.org/about/2005_reg_review.pdf.
Ibid.
State of Missouri, revised statute, Chapter 660 Department of Social Services Section 660.050, http://www.moga.mo.gov/statutes/c600-699/6600000050.htm.
Lyn Bentley, "Assisted Living State Regulatory Review 2005" (Washington, DC: National Center for Assisted Living, March 2005).

This Policy Brief was prepared by the Forum for State Health Policy Leadership at the National Conference of State Legislatures. This paper was produced with the generous support of the Alzheimer's Association.

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