What Is the Impact of Dementia and Dementia-related Psychosis on Long-term Care and Transitions of Care?

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Hi. I’m Dr. Amita Patel. I’m a geriatric psychiatrist affiliated with the Institute for Psychiatric Education and Dayton Psychiatric Associates in Dayton, Ohio. I also have a clinical private practice in geriatric psychiatry in Dayton.

In this program, I’m going to share with you how dementia and dementia-related hallucinations and delusions impact long-term care and transitions of care. I will also present data from several studies and put it into the context of my own clinical experience in geriatric psychiatry.

Please note that this disease-awareness, non-CME program is intended only for healthcare professionals involved in the management of people with dementia-related hallucinations and delusions. It is sponsored by Acadia Pharmaceuticals Inc., and I’m presenting on behalf of Acadia as a paid consultant. This presentation is not meant to discuss specific treatment options for dementia-related psychosis.

For older adults with dementia, transitioning between care environments is common. These transitions can be between home, hospital, post-acute care services, long-term care or assisted living facilities, and hospice. From what I have observed, transition directly from home to hospice is not common, although I have seen it more frequently since the beginning of the global health emergency in 2020. Transitions across settings and between healthcare providers may increase the risk of fragmented care and poor outcomes.1

In my experience, the presence of hallucinations or delusions associated with dementia-related psychosis can add additional challenges to transitions of care, which we will discuss in more detail throughout this program.

Care transitions, in general, can be a stressful time for older adults and their caregivers. Inadequate attention to the continuum of care for people with dementia contributes to these transition challenges.1 For example1:

  • Clinicians are not trained in best practices for transitional care.
  • Organizations do not have processes in place to facilitate smooth care transitions.
  • And, people with dementia and their caregivers are not aware of the likelihood of pitfalls with common care transitions.

In my experience, one of the major challenges associated with care transitions for older adults with dementia is the large variety of care team members, each with varying levels of training, who may be involved in coordinating the transition. As an example, let’s consider the transition from a hospital to a post-acute care facility:

  • When a patient leaves the hospital, there may be a physician discharging the patient, a nurse providing the report, a social worker coordinating the discharge, a discharge planner, and a family member or care partner involved in the transition.
  • When the patient enters the post-acute care facility, there may be an admission coordinator or a nurse receiving the report, a unit manager, a physician or a nurse practitioner, and a team of consultants—all of whom must communicate about the patient’s care plan.
  • I have observed that without straightforward guidelines to help coordinate the transition, there can be misalignment among the care team, and the patient often falls through the cracks.

Specifically, transition-of-care challenges can include1:

  • Breakdowns in communication
  • Confusion about medication
  • Lack of follow-up care
  • Inaccuracies in information exchange
  • Ineffective care coordination
  • And inadequate patient and caregiver preparation

In my experience, if the patient has dementia-related psychosis, these challenges can be even greater. The patient may be suspicious and paranoid, may not want to give information, and may distrust the care plan. Since the discharge plan is often not solidified, the patient’s suspicion and distrust can become further amplified.

Ultimately, ineffective care transitions can lead to poor outcomes for the patient. These outcomes can include2,3:

  • Inappropriate treatment
  • Delay in diagnosis
  • Severe adverse events
  • Patient complaints
  • Increased healthcare costs
  • And increased length of hospital stay or long-term care stay

The number of transitions between care environments, which can be problematic for patients, is greater for those with dementia than for those without.4 A longitudinal cohort study described these transitions of care in older adults with dementia.4 The study evaluated 16,186 people aged 65 years or older from the Health and Retirement Study database.4 Of these individuals, 12,739 had no history of dementia, 2278 had a diagnosis of mild dementia, and 1169 had a diagnosis of moderate-to-severe dementia.4 Data was assessed over a 10-year period between 1998 and 2008.4 Transitions of care occurred between home with formal services, home without formal services, hospitals, and nursing facilities.4 The study found that the mean number of transitions of care per year increased with severity of dementia, from 1.1 for those without dementia to 2.2 for those with moderate-to-severe dementia.4

This is consistent with what I have observed in my clinical practice. Older patients with dementia may need to transition from an assisted living facility to another level of care, due to challenges such as worsening memory, noncompliance with medication, and eating difficulties or risk of food aspiration. As the dementia progresses, especially when the patient is experiencing hallucinations or delusions, these challenges can accelerate, further increasing the likelihood of additional care transitions.4

According to data published by the National Center for Health Statistics in February 2019, dementia is common across many different types of long-term care settings.5 These prevalence statistics are calculated based on5:

  • The number of current patients enrolled in adult day service centers or living in nursing homes or residential care communities, which included assisted living facilities, on the day of data collection in 2016
  • Patients who received services from home health agencies any time in 2015
  • And patients who received hospice care any time in 2015

The number of patients for each group is shown on the bar graph. The majority of long-term care services users were age 65 years or older.5 The prevalence of Alzheimer’s disease or other dementia was highest in nursing homes, at 48%, and lowest in adult day services centers, at 31%.5 Within nursing homes, the prevalence of Alzheimer’s disease or other dementia was 59% among long-stay residents and 37% among short-stay residents.5

In my opinion, when reviewing these data, it is important to keep in mind that in adult day care service centers and home health agencies, the diagnosis of dementia is often missed. Even though patients often participate in these programs because of cognitive impairment, the caregivers in these programs typically are not qualified to make the diagnosis of dementia.

We have now seen that a dementia diagnosis increases the number of care transitions experienced by a patient, so it may not be surprising that a dementia diagnosis also increases the odds of nursing home placement. A Department of Veterans Affairs, or VA, study of almost 4 million individuals examined whether the presence of a psychiatric diagnosis, including Alzheimer’s disease and other types of dementia, increased the likelihood of nursing home placement.6 The study’s 33% random sample consisted of 223,856 VA patients diagnosed with at least 1 mental illness and no prior nursing home experience, 25% of whom were aged 65 years or older.6 The unadjusted odds of nursing home placement for people with Alzheimer’s disease or other dementia was 3.81.6

Another factor that correlates with the risk for institutionalization for patients with dementia is caregiver burden. Caregiver burden can involve both informal and professional caregivers, and its severity is associated with increasing risk of institutionalization for the individual with dementia. I think of the family caregivers as the “hidden patients,” because I have observed that they can sometimes neglect their own health in order to care for the patient.

An analysis of about 9000 community-dwelling older adults with dementia in the Canadian Study of Health and Aging identified 326 adults with dementia receiving care from informal caregivers.7 These subjects were followed for 5 years, during which 166 individuals were institutionalized.7

In a multivariate analysis, the factors associated with caregiver burden were patient’s behavioral disturbances (assessed via the Dementia Behavior Disturbance scale) and caregiver’s depressive mood.7 The severity of caregiver burden was associated with a higher adjusted odds of institutionalization.7 Patients whose caregivers reported moderate burden were about 1.5 times more likely to be institutionalized; those whose caregivers reported severe burden were about 3 times more likely to be institutionalized; and those whose caregivers reported extreme burden were about 8 times more likely to be institutionalized.7

After institutionalization, behavioral disturbances can take a toll on professional caregivers in a long-term care setting and contribute to burnout.8 A meta-analysis of 17 studies that examined workers caring for patients with dementia in a long-term care setting showed that 22.1% to 68.6% reported high levels of emotional exhaustion.9 Notably, one of the determinants of burnout was caring for residents with agitated behavior.8

Furthermore, while one might assume that the burden on the family ends when the patient is institutionalized, in my experience that is not the case. I have observed that many families do stay involved and have numerous responsibilities related to the institutionalization, especially in the context of assisted living facilities. These responsibilities can include doing laundry, acquiring supplies, paying bills, bringing meals, and more.

In older adults with dementia, the presence of neuropsychiatric symptoms may further increase the risk of nursing home placement. A case-control study using data from the South Carolina Alzheimer’s Disease Registry compared Neuropsychiatric Inventory (NPI) scores for older people with Alzheimer’s disease who entered nursing homes within 6 months of study initiation versus those who remained in the community.10 The NPI total, the NPI-4, and the individual items of the NPI were examined for main effects as models of interest.10 A 10% increase in the total NPI score was associated with a 30% increase in the odds of nursing home placement.10 For the NPI-4, a 10% increase was associated with a 21% increase in the odds of nursing home placement.10 Several individual NPI items also significantly increased the odds of nursing home placement per a 10% increase in each score: agitation or aggression, irritability, delusions, appetite, disinhibition, and sleep.10 Hallucinations did not significantly increase the odds of nursing home placement.10

The Centers for Medicare & Medicaid Services, or CMS, provides guidance that governs the care of residents with dementia explicitly or otherwise.11 Under CMS State Operations Manual part F744, residents with dementia are entitled to appropriate treatment and services to support their overall well-being.11

Part F756 requires that the drug regimen of each resident be reviewed by a licensed pharmacist at least once a month and that the pharmacist must report any irregularities to the attending physician, medical director, and director of nursing. These reports must be acted on.11

Part F605 details a broad requirement that residents be entitled to respect and dignity. The regulations have particular relevance for the use of psychotropic medications, as they explicitly state that medications must never be used for discipline or convenience or in a way not required to treat a resident’s medical symptoms.11

During this program, we have seen how dementia and hallucinations and delusions associated with dementia-related psychosis impact long-term care and transitions of care. We have reviewed the common challenges associated with care transitions for these individuals and most importantly, identified areas where improved communication might enhance patient outcomes.

Thank you for joining me for this program. For more resources on this topic, please explore MoreThanCognition.com.

Additional Contributor(s)

Amita R. Patel


Institute for Psychiatric Education
Dayton Psychiatric Associates
Dayton, OH

Faculty Insights

The number of transitions between care environments, which can be problematic for patients, is greater for those with dementia than those without, and the presence of hallucinations or delusions associated with dementia-related psychosis can add challenges.

–Amita R. Patel, MD, CMD, MHA, CPE