Quiz Results: Prevalence and Impact of Hallucinations and Delusions in Dementia

Find out how your peers responded to questions from the MD-IQ Quiz.

With commentary from Stephen A. Brunton, MD, and Elaine R. Peskind, MD

The graphs below depict the percentage of respondents who correctly or incorrectly chose each answer. The key at the bottom of each graph contains the answer options for each question, with the correct answer indicated.

Question 1 of 5: In the United States, approximately _____ people are affected by dementia (diagnosed and undiagnosed).

Finding: About one-quarter of respondents underestimated the prevalence of dementia in the United States.

Commentary from Dr. Peskind: In older patients with dementia, it is common for neuropathologies to overlap. Data from 2 large databases demonstrated that dementia can be caused by Alzheimer’s disease plus vascular brain injury, Alzheimer’s disease plus Lewy body disease, and even all 3 pathologies, with more than half of patients with dementia having mixed neuropathologies.

This information is derived from a knowledge quiz completed by healthcare professionals on MoreThanCognition.com;
data collected from July 2019 to April 2020 (N=668).

Key: A. 10.9 million; B. 7.9 million; C. 3.9 million; D. 1.9 million

Explanation
Dementia is common in older adults, with approximately 7.9 million total dementia patients (diagnosed and undiagnosed) in the United States (US), of whom 3.95 million carry a diagnosis of at least 1 dementia type.1-3

  • The most common type of dementia is Alzheimer’s disease dementia. It accounts for approximately 69.6% of dementia and about 5.5 million people in the US.1-4
  • Vascular dementia is the next most common, accounting for about 20% of dementia and about 1.6 million US individuals.1,2
  • Dementia with Lewy bodies represents approximately 5.4% of dementia, which is equivalent to approximately 430,000 people in the US.1,5-7
  • Approximately 4% of adults with dementia in the US have Parkinson’s disease dementia, or about 320,000 people.6,7
  • Frontotemporal dementia occurs in about 1% of all individuals with dementia in the US, which is approximately 80,000 people.1

For additional information, see:

  1. Goodman RA, Lochner KA, Thambisetty M, Wingo TS, Posner SF, Ling SM. Prevalence of dementia subtypes in United States Medicare fee-for-service beneficiaries, 2011-2013. Alzheimers Dement. 2017;13(1):28-37.
  2. Plassman BL, Langa KM, Fisher GG, et al. Prevalence of dementia in the United States: the Aging, Demographics, and Memory Study. Neuroepidemiology. 2007;29(1-2):125-132.
  3. Hebert LE, Weuve J, Scherr PA, Evans DA. Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Neurology. 2013;80(19):1778-1783.
  4. Alzheimer’s Association. 2017 Alzheimer’s disease facts and figures. Alzheimers Dement. 2017;13(4):325-373.
  5. Vann Jones SA, O’Brien JT. The prevalence and incidence of dementia with Lewy bodies: a systematic review of population and clinical studies. Psychol Med. 2014;44(4):673-683.
  6. Hogan DB, Fiest KM, Roberts JI, et al. The prevalence and incidence of dementia with Lewy bodies: a systematic review. Can J Neurol Sci. 2016;43(suppl 1):S83-S95.
  7. Aarsland D, Zaccai J, Brayne C. A systematic review of prevalence studies of dementia in Parkinson’s disease. Mov Disord. 2005;20(10):1255-1263.

Question 2 of 5: Among all the individuals living with various types of dementia in the United States, approximately _____ have dementia-related hallucinations and delusions.

Finding: More than half of respondents underestimated the prevalence of hallucinations and delusions among all the individuals living with dementia in the United States.

Commentary from Dr. Peskind: Across the different types of dementias, hallucinations and delusions are common, though at various rates. Awareness of the prevalence of dementia-related hallucinations and delusions may help healthcare professionals detect and manage these symptoms earlier in the course of illness. For example, visual hallucinations are often a hallmark of dementia with Lewy bodies.

This information is derived from a knowledge quiz completed by healthcare professionals on MoreThanCognition.com;
data collected from July 2019 to April 2020 (N=668).

Key: A. 2.4 million; B. 1.34 million; C. 340,000; D. 34,000

Explanation
Among the approximately 7.9 million individuals living with various types of dementia in the United States (US), approximately 2.4 million have dementia-related hallucinations and delusions. These symptoms are prevalent across the dementias, and their rates vary based on dementia type.1-15 The prevalence rates of dementia-related hallucinations and delusions by dementia type are shown in the table below:

No. of People in US with Dementia Overall Psychosis Prevalence Hallucinations Prevalence Delusions Prevalence
Alzheimer’s Disease Dementia1–8  ~5.5 million  30%  11%-17%  10%-39%
Vascular Dementia1,4,6,8  ~1.6 million  15%  5%-14%  14%-27%
Dementia with Lewy Bodies4,9–12  ~430,000  75%  55%-78%  40%-57%
Parkinson’s Disease Dementia4,7,11,13  ~320,000  50%  32%-63%  28%-50%
Frontotemporal Dementia14,15  ~80,000  10%  1.2%-13%  2.3%-6%

For additional information, see:

  1. Ballard C, Neill D, O’Brien J, McKeith IG, Ince P, Perry R. Anxiety, depression and psychosis in vascular dementia: prevalence and associations. J Affect Disord. 2000:59(2):97-106.
  2. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease. I: Disorders of thought content. Br J Psychiatry. 1990;157:72-76, 92-94.
  3. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease. II: Disorders of perception. Br J Psychiatry. 1990;157:76-81, 92-94.
  4. Johnson DK, Watts AS, Chapin BA, Anderson R, Burns JM. Neuropsychiatric profiles in dementia. Alzheimer Dis Assoc Disord. 2011;25(4):326-332.
  5. Lyketsos CG, Lopez O, Jones B, Fitzpatrick AL, Breitner J, DeKosky S. Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: results from the cardiovascular health study. JAMA. 2002;288(12):1475-1483.
  6. Lyketsos CG, Steinberg M, Tschanz JT, Norton MC, Steffens DC, Breitner JC. Mental and behavioral disturbances in dementia: findings from the Cache County Study on Memory in Aging. Am J Psychiatry. 2000;157(5):708-714.
  7. Leroi I, Voulgari A, Breitner JC, Lyketsos CG. The epidemiology of psychosis in dementia. Am J Geriatr Psychiatry. 2003;11(1):83-91.
  8. Lopez OL, Becker JT, Sweet RA, et al. Psychiatric symptoms vary with the severity of dementia in probable Alzheimer’s disease. J Neuropsychiatry Clin Neurosci. 2003;15(3):346-353.
  9. Ballard CG, Saad K, Patel A, el al. The prevalence and phenomenology of psychotic symptoms in dementia sufferers. Int J Geriatr Psychiatry. 1995;10(6):477-485.
  10. Nagahama Y, Okina T, Suzuki N, Matsuda M, Fukao K, Murai T. Classification of psychotic symptoms in dementia with Lewy bodies. Am J Geriatr Psychiatry. 2007;15(11):961-967.
  11. Aarsland D, Ballard C, Larsen JP, McKeith I. A comparative study of psychiatric symptoms in dementia with Lewy bodies and Parkinson’s disease with and without dementia. Int J Geriatr Psychiatry. 2001;16(5):528-536.
  12. Ballard C, Holmes C, McKeith I, et al. Psychiatric morbidity in dementia with Lewy bodies: a prospective clinical and neuropathological comparative study with Alzheimer’s disease. Am J Psychiatry. 1999;156(7):1039-1045.
  13. Lee WJ, Tsai CF, Gauthier S, Wang SJ, Fuh JL. The association between cognitive impairment and neuropsychiatric symptoms in patients with Parkinson’s disease dementia. Int Psychogeriatr. 2012:24(12):1980-1987.
  14. Mendez MF, Shapira JS, Woods RJ, Licht EA, Saul RE. Psychotic symptoms in frontotemporal dementia: prevalence and review. Dement Geriatr Cogn Disord. 2008;25(3):206-211.
  15. Mourik JC, Rosso SM, Niermeijer MF, Duivenvoorden HJ, Van Swieten JC, Tibben A. Frontotemporal dementia: behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord. 2004;18(3-4):299-306.

Question 3 of 5: According to one study, individuals with dementia-related hallucinations and delusions were:

Finding: The majority of respondents were aware that individuals with dementia-related hallucinations and delusions were more likely to progress to severe dementia and death. However, of these respondents, about half overestimated the increase in likelihood of progression to severe dementia and death.

Commentary from Dr. Brunton: There is no question that the development of hallucinations and delusions in dementia is a bad prognostic sign. This deterioration in cognitive status reflects a progression of disease that is ominous, doubling a patient’s risk of severe dementia and increasing the likelihood of demise by 1.5-fold.

This information is derived from a knowledge quiz completed by healthcare professionals on MoreThanCognition.com;
data collected from July 2019 to April 2020 (N=668).

Key:
A. 2 times more likely to progress to severe dementia and 1.5 times more likely to progress to death
B. 4 times more likely to progress to severe dementia and 3 times more likely to progress to death
C. 2 times less likely to progress to severe dementia and 1.5 times less likely to progress to death
D. 4 times less likely to progress to severe dementia and 3 times less likely to progress to death

Explanation
The presence of hallucinations and delusions predicts greater likelihood of progression to severe dementia and death in people with incident dementia. In a population-based study of individuals aged ≥65 years, 335 subjects with possible or probable Alzheimer’s disease dementia were identified and followed for 3 years to 5 years. Hallucinations and delusions were present in 18%. Individuals with dementia-related hallucinations and delusions were:

  1. 2 times more likely to progress to severe dementia (hazard ratio [HR], 2.0; P=0.03)
  2. 1.5 times more likely to progress to death (HR, 1.5; P=0.01)

For additional information, see:
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.

Question 4 of 5: In the United States, which of the following is true about caregiver burden related to dementia?

Finding: Most respondents were familiar with the correlation between psychiatric and behavioral symptoms in people with dementia and caregiver burden, depression, and distress. However, respondents underestimated the proportion of older adults with dementia who receive care from family members and that caregivers are often the object of the patient’s delusions.

Commentary from Dr. Brunton: Dementia is a family disease. As it progresses, the significant effects on caregivers can be measured using any number of depression and distress scales. As the patient’s psychiatric and behavioral symptoms become more florid, so do their impact on the caregiver.

This information is derived from a knowledge quiz completed by healthcare professionals on MoreThanCognition.com;
data collected from July 2019 to April 2020 (N=668).

Key:
A. Approximately 40% of older adults with dementia receive care from family caregivers.
B. Delusions in dementia rarely target the caregiver.
C. Multiple measures of psychiatric and behavioral symptoms in people with dementia correlated significantly with caregiver burden, depression, and distress.
D. Caregivers of subjects with late-onset dementia report significantly higher burden levels than caregivers of individuals with young-onset dementia.

Explanation
An analysis of the Clinical Antipsychotic Trials of Intervention Effectiveness in Alzheimer’s Disease (CATIE-AD) study examined the relationship between neuropsychiatric symptoms in 421 ambulatory patients with Alzheimer’s disease and their impact on caregivers. The researchers found that multiple measures of psychiatric and behavioral symptoms in people with dementia correlated significantly with caregiver burden, depression, and distress.1 Both patient neuropsychiatric symptoms (as measured with the Neuropsychiatric Inventory and Brief Psychiatric Rating Scale [BPRS]) and mood symptoms (as measured with the Cornell Scale for Depression in Dementia) were significantly correlated with Burden Interview, Beck Depression Inventory, and Caregiver Distress Scale (P<0.0001, except for the correlation of BPRS and Beck Depression Inventory, for which P<0.001).1

The 2015 National Health and Aging Trends Study and its companion study, the National Study of Caregiving, included 2204 caregivers of 2417 people with dementia aged ≥65 years who lived in community settings and received help with self-care, mobility, or household activities.2 For context on the prevalence of informal caregiving for older adults with dementia, approximately 70% received care from family caregivers, ie, their spouse or children.2 Yet, some common delusions in people with dementia target those closest to them—the caregivers. These delusions include theft, abandonment, Capgras syndrome, and spousal infidelity.3

Further, in a cross-sectional, prospective study of 183 patient-caregiver dyads (57 young-onset dementia dyads and 126 late-onset dementia dyads; patients diagnosed with Alzheimer’s disease, vascular dementia, or frontotemporal dementia) from a tertiary neurology center who were studied for 1 year, caregivers of subjects with young-onset dementia reported significantly higher burden levels (mean Zarit Burden Inventory [ZBI] score, 17.36) compared with caregivers of individuals with late-onset dementia (mean ZBI score, 13.94; P=0.015).4 More than half (52.6%) of the young-onset dementia caregivers experienced high burden, categorized as a ZBI score of at least 17, compared with 32.5% of late-onset dementia caregivers.4 The researchers found that multiple Neuropsychiatric Inventory 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.4

For additional information, see:

  1. Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer’s disease: cross-sectional and longitudinal patient correlates. Am J Geriatr Psychiatry. 2010;18(10):917-927.
  2. Chi W, Graf 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.
  3. Ballard CG, 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.
  4. 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.

Question 5 of 5: According to one study of caregivers of individuals with dementia, which neuropsychiatric symptoms experienced by care recipients were identified as “most distressing” to caregivers?

Finding: The majority of respondents correctly identified delusions, irritability, and agitation/aggression as the neuropsychiatric symptoms of dementia that were the most distressing to caregivers.

Commentary from Dr. Brunton: The development of neuropsychiatric symptoms is upsetting to the patient with dementia and can be overwhelming to family members and caregivers. When these symptoms manifest as aggression toward these caregivers, the situation can become quite difficult to handle. Typically, patients with dementia-related neuropsychiatric symptoms need a high level of support and care, potentially resulting in the increased likelihood of their placement in a nursing home.

This information is derived from a knowledge quiz completed by healthcare professionals on MoreThanCognition.com;
data collected from July 2019 to April 2020 (N=668).

Key:
A. Apathy, depression, and agitation
B. Delusions, irritability, and agitation/aggression
C. Memory, sleep, and disinhibition
D. Hallucinations, appetite, and elation

Explanation
One study of 177 family caregivers (eg, spouses and adult children) who were enrolled in a statewide program evaluation by the Alzheimer’s Association Utah chapter identified the neuropsychiatric symptoms, as assessed via the Neuropsychiatric Inventory, that were most distressing to these caregivers of older people with dementia (mean age of care recipients, 64 years): delusions, irritability, and agitation/aggression.

For additional information, see:
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.

Faculty

Touro University
Vallejo, CA
University of Washington School of Medicine
Seattle, WA

Faculty Insights

I feel the need to do my best to manage the symptoms of dementia-related hallucinations and delusions and the associated caregiver distress.

–Jeffrey Cummings, MD, ScD