How Do Dementia and Neuropsychiatric Symptoms—Including Hallucinations and Delusions Associated With Dementia—Impact Patients, Caregivers, and Society?

For optimal viewing quality, please expand video to full screen.

Hello. I’m Dr. George Grossberg. I’m the Samuel W. Fordyce Professor and director of geriatric psychiatry in the department of psychiatry and behavioral neuroscience at the St. Louis University School of Medicine in St. Louis, Missouri.

As healthcare professionals, we are learning more about the presence and prevalence of neuropsychiatric symptoms in our patients with dementia. These symptoms, including hallucinations and delusions, have an important impact on patients, their caregivers, and society, and in this presentation, I’ll explore these consequences.

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, 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.

Hallucinations and delusions are associated with behavioral, psychological, and cognitive problems in people with dementia. A retrospective review examined 101 individuals with Parkinson’s disease dementia. Thirty-six of these individuals had hallucinations and/or delusions. The study found statistically significant greater rates of behavioral and psychological symptoms—as shown in the bar graph—as well as more impairment on cognitive and functional measures—as shown in the table—among the subjects with hallucinations and/or delusions compared to the subjects without these symptoms.1

Moreover, important outcomes may be affected by the presence of hallucinations and/or delusions in people with dementia. To explore this potential association, Scarmeas and colleagues followed 456 individuals with early Alzheimer’s disease for up to 14 years. Participants were enrolled from a US cohort and an international cohort. Hallucinations were present in 7% of subjects at initial visit and in 33% at any subsequent visit. Delusions were noted for 34% of subjects at baseline and for 70% at any subsequent evaluation.2

Cognitive and functional outcomes were assessed in addition to the occurrence of institutionalization or death. Cognition was assessed via the Columbia Mini-Mental State Examination, or MMSE, and function was assessed via the Blessed Dementia Rating Scale, or BDRS.2

In Cox adjusted models, the presence of hallucinations was significantly associated with all 4 variables: cognitive decline, functional decline, institutionalization, and death; and the presence of delusions significantly predicted cognitive and functional decline as time-dependent covariables.2

Research has also shown that the disease course of older adults with dementia-related delusions is severe compared to that of older adults with dementia who do not experience delusions.3

A prospective, longitudinal study of 78 people with Alzheimer’s disease who were followed for 2 years found that, at the final examination, delusions were associated with greater severity of cognitive and functional impairment. Specific delusions were predictive of specific negative outcomes. At the last evaluation in the 2-year observational period3:

  • The delusion of theft was related to the degree of cognitive dysfunction as measured by the MMSE, as well as to functional disabilities, as measured by the Dementia Scale.
  • The delusion of abandonment was related to the severity of cognitive impairment as measured by the Cambridge Cognitive Examination.

Hallucinations were also examined in this study and were not associated with the degree of cognitive and functional impairment.3

Finally, the consequences of dementia-related psychosis can be dire. In a population-based study of individuals aged 65 years or older, 335 incident cases of possible or probable Alzheimer’s disease dementia were identified, and these individuals were followed for 3 years to 5 years. Hallucinations and delusions were present in 18%.4 Individuals with dementia-related hallucinations and delusions were 2 times more likely to progress to severe dementia, as indicated by a hazard ratio of 2 and a P value of 0.03. Furthermore, this population was 1.5 times more likely to progress to death, as shown by a hazard ratio of 1.5 and a P value of 0.01.4

Adults with dementia are not the only individuals who are impacted by dementia-related hallucinations and delusions. The burden of dementia and dementia-related hallucinations and delusions typically falls on family caregivers.

The 2015 National Health and Aging Trends Study, or NHATS study, and its companion study, the National Study of Caregiving, included 2204 caregivers of 2417 people with dementia aged 65 years or older, who lived in community settings. These caregivers supported their loved ones with self-care, mobility, or household activities.5 For context on the prevalence of informal caregiving for older adults with dementia, approximately 70% received support from family caregivers, such as their spouse or children.5 Yet, some common delusions in people with dementia-related hallucinations and delusions target those closest to them—the caregivers. These delusions include theft, abandonment, Capgras syndrome, and spousal infidelity.6

The stress of caring for people with dementia may have physiological consequences and poor outcomes for caregivers. One study, which examined 33 family caregivers of individuals with Alzheimer’s disease, found that caregivers performed significantly worse on memory tests compared with 34 noncaregiver controls, and that nighttime cortisol levels showed a significant negative correlation with contextual memory performance.7 To assess cognitive reserve, caregivers were compared to noncaregivers in a contextual memory task, which required the recognition of previously presented objects and the contexts in which they were shown. Caregivers and controls were further divided into 2 training conditions: One emphasizing the association of objects and contexts and one not emphasizing it. As already mentioned, caregivers performed significantly worse than controls on the contextual memory task, but for those caregivers who received a cue to facilitate the association of an object to its context, their performance improved to the level of controls.7

A meta-analysis that surveyed 228 studies of family caregivers, such as spouses and adult children, to older adults found statistically significant correlations between the presence of behavioral symptoms and caregiver burden and depression.8

Caregiver burden is important not only because of the suffering it can involve for both informal and professional caregivers, but because its severity is associated with institutionalization of the individual with dementia.

A study of more than 9000 community-dwelling older adults with dementia identified that 326 of these individuals were receiving care from informal caregivers. These subjects were followed for 5 years, during which 166 individuals were institutionalized.9

In a multivariate analysis, the only factors associated with caregiver burden were patient’s behavioral disturbances assessed via the Dementia Behavior Disturbance scale and caregiver’s depressive mood.9

The severity of caregiver burden was associated with a higher adjusted odds of institutionalization, with patients whose caregivers reported moderate burden about 1.5 times more likely to be institutionalized, those who reported severe burden about 3 times more likely, and those who reported extreme burden about 8 times more likely.9

Even after institutionalization, behavioral disturbances can also take a toll on professional caregivers in a long-term care setting and contribute to burnout. 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. Notably, one of the determinants of burnout was caring for residents with agitated behavior.10,11

Multiple measures of psychiatric and behavioral symptoms in people with dementia and psychosis or agitation correlate significantly with caregiver burden, depression, and distress. Mohamed and colleagues used data from the Clinical Antipsychotic Trials of Intervention Effectiveness in Alzheimer’s Disease, or CATIE-AD study, to examine the relationship between neuropsychiatric symptoms in 421 ambulatory patients with Alzheimer’s disease and burden, depression, and distress in their caregivers.12 Neuropsychiatric symptoms, as measured with the Neuropsychiatric Inventory—or the NPI—and Brief Psychiatric Rating Scale, and mood symptoms, as measured with the Cornell Scale for Depression in Dementia, were significantly correlated with Burden Interview, Beck Depression Inventory, and the Caregiver Distress Scale.12

Delusions, specifically, are among the most distressing neuropsychiatric symptoms for family caregivers of people with dementia. One US study of 177 family caregivers sought to identify the most problematic dementia-related neuropsychiatric symptoms—as measured by the NPI and Revised Memory and Behavior Problem Checklist, or the RMBPC—across the following criteria: symptom prevalence, symptom intensity, and caregivers’ distress ratings.13 Via the NPI, caregivers reported the presence of these symptoms in their care recipients over the past month, as well as the frequency, severity, and their distress rating of each symptom. Via the RMBPC, caregivers reported the frequency of these symptoms and their related distress score.13

The researchers found that the most frequent or intense symptoms were not necessarily the most distressing to caregivers. In other words, the most prevalent symptoms were apathy, depression, and agitation/aggression, and the most intense were appetite problems, aberrant motor behavior, and apathy. However, caregivers identified delusions, agitation/aggression, and irritability as the most distressing symptoms.13

It is also interesting to note that caregivers of subjects with young-onset dementia reported significantly higher burden levels compared with caregivers of individuals with late-onset dementia. Researchers found that multiple NPI domains contributed to this high caregiver burden, including hallucinations and delusions: 23% of caregivers of young-onset dementia patients with hallucinations and 40% of caregivers of young-onset dementia patients with delusions reported a high burden level.14

Neuropsychiatric symptoms are also associated with a financial burden—that is, an increased cost of care for people with dementia-related hallucinations and delusions. Rattinger and colleagues examined the relationship between costs of informal caregiving for 280 people with dementia in the Cache County population and neuropsychiatric symptoms.15 Informal costs increased approximately 2% with each point increase in the NPI total score and 7.6% with agitation/aggression, 6.4% with affective symptoms, and 5.6% with psychosis subdomains. However, the interaction with time as a variable was not significant for the NPI total score and the subdomains of agitation/aggression, affective symptoms, and psychosis.15 Informal costs of care were based on caregiver estimates of time spent assisting the person with dementia over a period of 24 hours, including answering questions, leaving reminders, providing transportation, and helping with activities of daily living. Time was capped at 16 hours, and informal cost was calculated using the Utah median hourly wage in 2015 dollars.15

In conclusion, adults with dementia-related hallucinations and delusions may experience higher rates of behavioral and psychological problems and a severe disease course. Psychiatric and behavioral symptoms also have an impact on caregiver burden, depression, and distress, which factor into an increased risk for patient institutionalization and increased costs of care. The aging US population and the prevalence of dementia-related hallucinations and delusions represent a significant healthcare challenge for patients, caregivers, and society.

Thank you for joining me for this presentation.

References

  1. Naimark D, Jackson E, Rockwell E, Jeste DV. Psychotic symptoms in Parkinson’s disease patients with dementia. J Am Geriatr Soc. 1996;44(3):296-299.
  2. Scarmeas N, Brandt J, Albert M, et al. Delusions and hallucinations are associated with worse outcome in Alzheimer Disease. Arch Neurol. 2005;62(10):1601-1608.
  3. Haupt M, Romero B, Kurz A. Delusions and hallucinations in Alzheimer’s Disease: results from a two-year longitudinal study. Int J Geriatr Psychiatry. 1996;11(11):965-972.
  4. Peters ME, Schwartz S, Han D, et al. Neuropsychiatric symptoms as predictors of progression to severe Alzheimer’s dementia and death: the Cache County Dementia Progression Study. Am J Psychiatry. 2015;172(5):460-465.
  5. Chi W, Graph E, Hughes L, et al. Community-Dwelling Older Adults With Dementia and Their Caregivers: Key Indicators From the National Health and Aging Trends Study. Washington, DC: The Office of the Assistant Secretary for Planning and Evaluation; January 2019.
  6. Ballard C, Saad K, Patel A, et al. The prevalence and phenomenology of psychotic symptoms in dementia sufferers. Int J Geriatr Psychiatry. 1995;10(6):477-485.
  7. Corrêa MS, de Lima DB, Giacobbo BL, Vedovelli K, Argimon IIL, Bromberg E. Mental health in familial caregivers of Alzheimer’s disease patients: are the effects of chronic stress on cognition inevitable. Stress. 2019;22(1):83-92.
  8. Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Pyschol Sci Soc Sci. 2003;58(2):P112-P128.
  9. Hébert R, Dubois MF, Wolfson C, Chambers L, Cohen C. Factors associated with long-term institutionalization of older people with dementia: data from the Canadian Study of Health and Aging. J Gerontol A Biol Sci Med Sci. 2001;56(11):M693-M699.
  10. Costello H, Walsh S, Cooper C, Livingston G. A systematic review and meta-analysis of the prevalence and associations of stress and burnout among staff in long-term care facilities for people with dementia. Int Psychogeriatr. 2018:1-14. doi:10.1017/S1041610218001606.
  11. Duffy B, Oyebode JR, Allen J. Burnout among care staff for older adults with dementia: the role of reciprocity, self-efficacy and organizational factors. Dementia. 2009;8(4):515-541.
  12. Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: cross-sectional and longitudinal patient correlates. Am J Geriatr Psychiatry. 2010;18(10):917-927.
  13. Fauth EB, Gibbons A. Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with caregiver depressive symptoms. Int J Geriatr Psychiatry. 2014;29(3):263-271.
  14. Lim L, Zhang A, Lim L, et al. High caregiver burden in young onset dementia: what factors need attention? J Alzheimers Dis. 2018;61(2):537-543.
  15. Rattinger GB, Sanders CL, Vernon E, et al. Neuropsychiatric symptoms in patients with dementia and the longitudinal costs of informal care in the Cache County population. Alzheimers Dement (N Y). 2019;5:81-88.

Faculty

St. Louis University School of Medicine
St. Louis, MO

Faculty Insights

I, too, feel distressed when a patient with dementia is experiencing distressing symptoms, such as hallucinations and delusions.

–George T. Grossberg, MD