Access and Quality Issues for People with Dementia and Other Mental Disorders


Dementia and mental disorders such as depression, anxiety, and schizophrenia are major causes of disability in the adult population. Cognitive impairment caused by Alzheimer’s disease and other types of dementia primarily affect older adults, and their occurrence increases with age. Acquired brain injuries—the result of either trauma or a medical condition such as a stroke—can cause cognitive impairment as well as mental disorders.

One in ten people age 65 and older have Alzheimer’s or another dementia, and the diseases are considerably more prevalent in adults age 85 and older. In 2018, the Alzheimer’s Association reported that 40 percent of people in assisted living facilities had a diagnosis of dementia. By comparison, 61 percent of nursing facility residents had dementia. The association estimates that approximately one-third of family caregivers (roughly 16 million people) provide care for someone with cognitive impairment (see also Supporting Family Caregivers in this chapter).

Mental disorders among older adults encompass a range of serious conditions, such as clinical depression, bipolar mood disorders, schizophrenia, and delirium. They also include depression, anxiety, and conditions that are the secondary consequences of physical ailments or medical interventions. A National Institutes of Health panel has noted that depression in the aging and aged is a major public health problem.

Too often, mental disorders and cognitive health issues among older adults are undiagnosed or misdiagnosed. Diagnosis and treatment for mental illness and other cognitive health problems among older people are generally provided by primary care physicians who lack training in psychiatric treatment. This problem is exacerbated by the shortage of mental health professionals trained in geriatrics, attributed in part to inadequate Medicare and Medicaid reimbursement. Few staff in all long-term services and supports settings have education and training in the care of people with mental disorders.

Another barrier to mental health services is a lack of coordination among personnel in long-term services and supports settings.

Despite the prevalence of cognitive impairment and other mental disorders among nursing facility residents, few of these residents have adequate access to mental health services. Research has shown frequent, inappropriate administration of psychotropic medications to nursing facility residents. Facilities with fewer than 120 beds are not required to employ a full-time clinical social worker. The Nursing Home Reform Act required nursing facilities to develop and administer a resident assessment-and-care-planning instrument to be used upon a resident’s admission and every year thereafter. The instrument assesses care needs related to cognitive impairment and behavioral problems, among other issues (see also Ensuring Quality in Skilled Nursing Facilities in this chapter for additional information on the reform act and inappropriate use of antipsychotic medications).

The federal government requires all nursing facilities participating in Medicaid to conduct Preadmission Screening and Resident Reviews (PASRR) to prevent the inappropriate placement in nursing facilities of people with serious mental illness and intellectual and other developmental disabilities, as well as ensure that people with such conditions receive necessary treatment and services in the most appropriate care setting.

In October 1996, Congress repealed a requirement for an automatic annual review of people who were identified by PASARR screening as having mental disabilities. Now referred to as Preadmission Screening and Resident Review (PASRR), nursing facilities must conduct subsequent reviews only in response to a “significant change in the physical or mental condition of mentally ill nursing facility residents or residents with intellectual disabilities.” There are no federal guidelines that define a significant change that would trigger reassessment under PASRR. However, CMS recommends states use the protocol in MDS 3.0 to determine when a significant change in status assessment should be performed. According to CMS, a significant change is defined as a decline or improvement in a resident’s status that:

  • will not normally resolve itself without intervention by staff or by implementing standard disease-related clinical interventions (or, in the case of a decline only, is not self-limiting);
  • impacts more than one area of the resident’s health status; and
  • requires interdisciplinary review, revision of the care plan, or both.

Giving nursing facilities the discretion to determine when a reassessment is needed (as opposed to having a mandatory annual evaluation) may enable them to circumvent the program’s main objective: ensuring that residents with mental illness and developmental disabilities receive the services they need in the most appropriate setting (see also Chapter 7, Health - Health Care Coverage—Medicare—Mental Health for additional information and policies on mental health).

Supportive housing for people with mental or cognitive impairments—requirements for assisted living residences and board and care homes that serve residents with cognitive impairments vary significantly from state to state. Almost all states have specific requirements for assisted living and other residential care settings serving people with dementia. Some of these settings, as well as some nursing facilities, have special care units that provide specialized care for people with dementia, either through tailored services or programs. Because there is no consistent definition or set of standards for such units, they vary considerably in the type and level of services provided. A National Institute on Aging study found that special care units (SCUs), on average, had better-trained staff, programming, and facilities than did non-SCUs. Many nursing facilities, other settings residences, continuing care retirement communities, and home-care service providers have developed SCUs or services for residents with dementia.


Ensuring appropriate health and long-term services and supports

In this policy: FederalState

Federal and state governments should ensure that people with dementia and other mental disorders receive necessary treatment and long-term services and supports (LTSS) in the most appropriate and integrated setting of their choice.

The federal government and states should support efforts to reduce and prevent the inappropriate use of antipsychotic drugs as a means of chemical restraint among residents of nursing facilities and other settings.

This can be done through steps such as:

  • training health care professionals on the use of antipsychotic medications, including the dangers of antipsychotic drugs for people with dementia and best practices for non-pharmacological treatments;
  • passage and enforcement of informed consent laws, including requiring that people with dementia and their representatives be provided information about both pharmacological and non-pharmacological treatments—and the benefits and disadvantages of each—so that they can make fully informed choices about dementia treatment;
  • prescriber education programs;
  • provision of information to current and potential nursing facility residents, their families, the public, and others regarding the misuse of antipsychotic drugs in nursing facilities;
  • ongoing reporting requirements and data collection efforts to monitor inappropriate use of antipsychotic drugs in nursing facilities;
  • consideration and enforcement of penalties for inappropriate use of such drugs; and
  • research on the use of antipsychotic drugs across settings.

States should ensure that people with mental illness or intellectual disabilities who are not admitted to a nursing facility as the result of a Preadmission Screening and Resident Review (PASRR) are provided with appropriate treatment in the most appropriate setting.

States should establish mechanisms to ensure that LTSS agencies and mental health authorities address the mental health needs of individuals receiving LTSS.

States should establish mechanisms to ensure that LTSS agencies and mental health authorities address the mental health needs of people who may require LTSS.

Preadmission Screening and Resident Review

In this policy: Federal

Regulations should be developed defining the “significant change” in a person’s physical or mental condition that triggers reassessment under the PASRR. The rules must recognize that people with serious mental illness may not show significant change but still may have mental health needs.

CMS should determine why the effectiveness of the PASRR program varies among states.

Ensuring the provision of mental health services in nursing facilities and supportive housing

In this policy: FederalState

Residents of nursing facilities should be ensured access to a full range of mental health services provided by qualified mental health professionals who have training and experience in treating mental health problems specific to this population.

Federal regulations should require that staff in special care units for residents with cognitive and mental disorders receive supervision from a licensed health care professional with gerontological training or experience. Such staff should also participate in annual continuing education relevant to such care.

States should require facilities without a social worker or registered nurse (RN) on staff to contract for social work, RN, and other psychiatric and psychological services, as needed, to ensure that residents with mental disorders and psychosocial problems receive professional help and that physical illness and disorders are not exacerbating cognitive and mental symptoms.

Research and funding

In this policy: Federal

Federal funding for research on prevention, person-centered care practices, and evidence-based treatment of mental disorders and cognitive impairments (including Alzheimer’s disease and other forms of dementia) that affect older people should be increased.

The federal government should provide stable funding for research on nonpharmacological treatment interventions for people at different stages of cognitive impairment. Funding should address a holistic approach to treatment that minimizes the symptoms of dementia, including social and behavioral challenges.

Training of mental health workers

In this policy: State

States should ensure that all training programs for direct-care workers in all LTSS settings address the care of all populations with mental disorders, including dementia, serious mental illness, and intellectual and other developmental disabilities.

Coordination of mental health services

In this policy: StateLocal

States should coordinate mental health services among all appropriate health, LTSS, and aging-network services. At the local level, area agencies on aging should have cooperative working agreements with community mental health centers.