Access and Quality Issues for People with Cognitive and Mental Disorders


Cognitive disorders including Alzheimer’s disease (AD) and other forms of dementia primarily affect older adults. Their occurrence increases with age. One in nine people age 65 and older (11 percent) have AD or other dementia and the diseases are considerably more prevalent in adults age 85 and older. In 2016 the Alzheimer’s Association reported that 42 percent of people in assisted living facilities had a diagnosis of dementia. By comparison, 64 percent of nursing facility residents had dementia. The Alzheimer’s Association estimates that approximately one-third of family caregivers (roughly 16 million people) provide care for someone with a cognitive impairment (see this chapter’s section Supporting Family Caregivers).

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 such as depression go undiagnosed or are misdiagnosed. Moreover treatment for mental disorders among older people is generally provided by primary care physicians or physicians who lack training in psychiatric care. This problem is exacerbated by the shortage of mental health professionals trained in geriatrics. Similarly, few nursing facility staff have education and training in the care of people with mental disorders.

Professionals who can provide older people with mental health services include gerontological social workers and gerontological nurse practitioners. Yet both are also in short supply. Other barriers to mental health services are inadequate Medicare and Medicaid reimbursement and a lack of coordination among personnel in long-term services and supports settings.

Nursing facilities—despite the high prevalence of cognitive and mental disorders among nursing facility residents, few have access to mental health professionals. In addition, 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 (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 this chapter’s section Nursing Facilities for additional information on the Reform Act and inappropriate use of antipsychotic medications).

The Reform Act also mandated the Preadmission Screening and Annual Resident Review (PASARR) program for states participating in Medicaid. PASARR aims to prevent the inappropriate placement in nursing facilities of people with serious mental illness, intellectual disabilities/developmental disabilities, and related disorders. It also seeks to 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 “significant change” that would trigger reassessment under PASRR. However, Centers for Medicare & Medicaid Services (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 and/or revision of the care plan.

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 Chapter 7, Health: Health Care Coverage—Medicare—Mental Health, for additional information and policies on mental health).

Supportive housing—requirements for assisted living residences and board and care homes that serve residents with cognitive impairments vary greatly from state to state. Almost all states have specific requirements for assisted living residences or other residential care settings serving people with dementia.

Special care environments—special care environments (SCEs) provide specialized care either through tailored services or programs or in a discrete unit or facility. Because there is no consistent definition or set of standards for SCEs, there is much variation in the types of services they provide. A National Institute on Aging study found that SCEs, on average, had better-trained staff, programming, and facilities than did non-SCEs. Many nursing facilities, other settings residences, continuing care retirement communities, and home-care service providers have developed SCEs or services for residents with dementia.

Access and Quality Issues for People with Cognitive and Mental Disorders: Policy

Availability of treatment

In this policy: FederalState

Federal and state governments should ensure that people with cognitive impairment (such as Alzheimer’s disease and other forms of dementia) and 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 through steps such as:

  • passage and enforcement of informed consent laws;
  • 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 Annual Resident Review (PASARR) 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 people who may require LTSS.

Preadmission Screening and Annual Resident Review screening

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 PASARR. The rules must recognize that people with serious mental illness may not show significant change but still may have mental health needs.

CMS should evaluate why the PASARR appears to have been effective in meeting its objectives in only some states.

Nursing facility and supportive housing care

In this policy: FederalState

Residents of nursing facilities and supportive housing 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, and 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 (AD) 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 LTSS training programs for direct-care workers address the care of people with acquired brain injuries or mental disorders, such as serious mental illness and intellectual disabilities/developmental disabilities, in addition to the care of people with cognitive disorders such as AD and other types of dementia.

Coordination of mental health services

In this policy: LocalState

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.