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


In 2021, an estimated 58.7 million adults age 18 and older in the U.S. had a mental illness. That is 22.8 percent of all adults. Prevalence among those over age 50 is 15 percent. 

Mental health problems among older adults encompass a range of serious conditions, including dementia and mental illnesses such as clinical depression, bipolar mood disorders, and schizophrenia. They are major causes of disability in the older adult population. A National Institutes of Health panel has noted that depression in older people is a major public health problem. 

Cognitive impairment and dementia caused by Alzheimer’s disease and other diseases and conditions primarily affect older adults. Their occurrence increases with age. Acquired brain injuries—resulting from either trauma or a medical condition such as a stroke—can also cause cognitive impairment. 

One in ten people age 65 and older have Alzheimer’s disease or another dementia. Among adults age 85 and older, 32 percent have dementia. In 2020, the Alzheimer’s Association reported that 42 percent of people in residential care facilities, which include assisted living, and 61 percent of nursing facility residents had a diagnosis of dementia. The association estimates that approximately one-third of family caregivers (more than 16 million) provide care for someone with cognitive impairment (see also Support for Family Caregivers in this chapter). 

Cognitive impairments and mental health conditions among older adults are often undiagnosed or misdiagnosed. A major reason is that diagnosis and treatment for these conditions 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 for their services. Few staff in all long-term services and supports settings have been educated and trained to care for people with mental disorders. 

Pain is widely understood to be under-identified and undertreated among people with cognitive impairments in long-term services and supports (LTSS) settings, contributing to behavioral disturbances. 

Another barrier to mental health services is a lack of coordination among personnel in LTSS settings. 

Despite the high prevalence of cognitive impairment and other mental disorders among nursing facility residents, few residents have adequate access to mental health services. In addition, research has shown frequent, inappropriate administration of psychotropic medications to nursing facility residents with dementia. This is particularly true for Black residents: an issue that needs further research and policy attention. 

According to the 2020 Alzheimer’s Facts and Figures report, The American Geriatrics Society estimates that, due to the increase in vulnerable older Americans who require geriatric care, an additional 23,750 geriatricians should be trained between now and 2030 to meet the needs of an aging U.S. population. There were 272,000 nurse practitioners in the U. S. in 2019, but only 11 percent had expertise in gerontological care. Less than 1 percent of registered nurses, physician assistants, and pharmacists identify themselves as specializing in geriatrics. 

Although 73 percent of social workers serve consumers age 55 and older, only 4 percent have formal certification in geriatric social work. Furthermore, the overall aging of the LTSS workforce may affect the number of paid caregivers in the direct-care workforce. 

Nursing facilities with fewer than 120 beds are not required to employ a full-time clinical social worker. The Nursing Home Reform Act requires 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 Quality in 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). It can prevent inappropriate placement in nursing facilities of people with serious mental illness and intellectual and other developmental disabilities. 

For residents, 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.” In 2017, the Centers for Medicare & Medicaid Services (CMS) provided guidance to nursing facilities about when a significant change requires referral for a PASRR evaluation if a mental illness, intellectual disability, or related condition is present or is suspected to be present. 

CMS recommends states use the protocol in Minimum Data Set (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 primary objective. That is, 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—Medicare Mental Health Services for additional information and policies on mental health). 

Supportive housing for people with cognitive impairments: Almost all states have specific requirements for assisted living and other residential care settings that serve people with dementia, but they vary from state to state. Some residential care settings and nursing facilities have special care units that provide specialized care for people with dementia. This is done 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, residential care settings, continuing care retirement communities, and home-care service providers have developed SCUs or services for residents with dementia. 

New language from CMS requires facilities to “provide care consistent with professional standards of practice, the comprehensive person-centered care plan, and the residents’ goals and preferences.” 

Pain is widely understood to be under-identified and undertreated among people with cognitive impairments in LTSS settings. 



Appropriate health and long-term services and supports (LTSS)

Federal and state governments should ensure that people with dementia and other mental disorders receive necessary treatment and 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 residential care settings. 

This can be done through activities such as: 

  • training health care professionals about the use of antipsychotic medications, including the dangers of antipsychotic drugs for people with dementia and best practices for nonpharmacological treatments; 
  • passage and enforcement of informed consent laws, including requiring that people with dementia and their representatives be provided information about both pharmacological and nonpharmacological treatments—and the benefits and disadvantages of each—so that they can make fully informed choices about dementia treatment; 
  • physician 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; 
  • enforcement of penalties for inappropriate use of antipsychotic drugs; and 
  • research on the use of antipsychotic drugs across LTSS 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 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. 

Preadmission Screening and Resident Review (PASRR)

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

The Centers for Medicare & Medicaid Services should determine why the effectiveness of the PASRR program varies among states and should enforce its application uniformly across states. They should also assess the effectiveness of the PASRR screening among communities of color, particularly for Black residents, for whom the screening may reinforce preexisting biases. 

Provision of mental health services in all LTSS settings

LTSS consumers should have access to a full range of mental health services. These services should be provided by qualified mental health professionals with 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 other mental disorders receive supervision from licensed health care professionals 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. This will ensure that residents with mental health issues and psychosocial problems receive professional help and that physical illness and disorders do not exacerbate cognitive and mental symptoms. 

Research and funding

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

The federal government should provide stable funding for research on nonpharmacological treatment interventions for people with different degrees of cognitive impairment. 

Mental health and direct-care workers training

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

Mental health services coordination

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.