Newsletter #2 of 4
Dementia is common in older adults in the United States (US); approximately 7.9 million people are living with dementia, of whom 3.95 million carry a diagnosis of at least one dementia type.1-3 However, data from 2 large databases indicate that more than half of individuals with dementia had mixed neuropathologies.4 According to the 2015 National Health and Aging Trends Study (NHATS), the prevalence of dementia increases with age, although some individuals experience symptom onset at a younger age.5 Moreover, as the US population ages, the number of people with dementia is expected to grow.5
Dementia involves more than cognition
Neuropsychiatric symptoms are common among people with dementia, and their onset can occur at various times in the course of the illness.6-8
Neuropsychiatric symptoms are a common feature across the dementias and include hallucinations, delusions, agitation/aggression, depression, apathy, elation, anxiety, disinhibition, irritability, and aberrant motor behavior.6
Hallucinations and delusions are prevalent across the dementias
Although the rates of hallucinations and delusions vary based on the dementia type, approximately 2.4 million people in the US have dementia-related psychosis, ie, experience hallucinations and delusions (Table 1).9-23
|Table 1. Hallucinations and delusions are prevalent across the dementias.|
|No. of People in US with Dementia||Overall Psychosis Prevalence||Hallucinations Prevalence||Delusions Prevalence|
|Alzheimer’s Disease Dementia10–17||~5.5 million||30%||11%-17%||10%-39%|
|Vascular Dementia10,13,15,17||~1.6 million||15%||5%-14%||14%-27%|
|Dementia with Lewy Bodies9,13,18–20||~430,000||75%||55%-78%||40%-57%|
|Parkinson’s Disease Dementia13,16,19,21||~320,000||50%||32%-63%||28%-50%|
|~2.4 million people in the US have dementia‑related hallucinations and delusions|
Impact of Dementia-related Hallucinations and Delusions
Neuropsychiatric symptoms—specifically, hallucinations and delusions—are a potentially burdensome healthcare challenge for patients, caregivers, and society and can have considerable consequences.
In a retrospective study of 101 people diagnosed with Parkinson’s disease dementia, individuals with hallucinations and/or delusions were significantly more likely to have insomnia, confusion, agitation (as assessed by the clinical team), personality change, self-care problems, and complaints by caregivers regarding agitation than people without dementia-related psychosis (Figure 1).24 Further, subjects with symptoms of psychosis had more impairment on several cognitive/functional measures, including the Mini-Mental State Examination (MMSE), Blessed Information-Memory-Concentration Test (BIMCS), and Blessed-Roth Dementia Rating Scale (BRDRS).24
|Figure 1. Adults with Parkinson’s disease dementia-related hallucinations and/or delusions experienced significantly higher rates of behavioral and psychological problems.|
Thirty-six (35.6%) of the 101 individuals in a retrospective review from the State of California Department of Public Health Alzheimer’s Disease Diagnostic and Treatment Centers database had hallucinations and/or delusions. The study found statistically significantly greater rates of behavioral and psychological symptoms among the subjects with hallucinations and/or delusions compared to those without hallucinations and/or delusions.24
Hallucinations and/or delusions associated with dementia-related psychosis may be associated with worse patient outcomes
The presence of delusions in older adults with dementia has been shown to be related to a severe disease course. A prospective, longitudinal study of 78 people with Alzheimer’s disease (mean age, 74 years) who were followed for 2 years found that, at the final examination, delusions were associated with greater severity of cognitive and functional impairment.25 Moreover, specific delusions were predictive of specific negative outcomes. At the last evaluation in the 2-year observational period, the delusion of theft was related to the degree of cognitive dysfunction (as measured with the MMSE) and to functional disabilities (as measured with the Dementia Scale), and the delusion of abandonment was related to the severity of cognitive impairment (as measured with the Cambridge Cognitive Examination).25
In older people with dementia, neuropsychiatric symptoms may increase the likelihood 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 the study initiation (352 cases; mean age, 84 years) versus those who remained in the community (289 controls; mean age, 83 years).26 A 10% increase in the total NPI score was associated with a 30% increase in the odds of nursing home placement (odds ratio, 1.30; 95% CI, 1.14-1.50).26 Delusions, in addition to some other NPI items except hallucinations, were significantly associated with increased odds of nursing home placement.26
Dementia-related psychosis may also increase the risk for serious patient outcomes. A population-based study of 335 individuals aged ≥65 years with possible or probable Alzheimer’s disease dementia who were followed for 3 years to 5 years found that symptoms of psychosis were present in 18% of the population.27 Individuals with dementia-related psychosis were 2 times more likely to progress to severe dementia (hazard ratio [HR], 2.0; P=0.03) and 1.5 times more likely to progress to death (HR, 1.5; P=0.01).27
The burden of dementia typically falls on informal caregivers. In a 2015 population-based analysis, approximately 70% of older adults with dementia receive support from family caregivers (eg, their spouse or adult children).5
Common delusions in dementia target the caregiver9
- Theft: “You’re stealing my things!”
- Abandonment: “You’re going to abandon me!”
- Capgras syndrome: “You’re not my spouse. You’re an imposter!”
- Spousal infidelity: “You’re having an affair!”
The stress of caring for people with dementia may have physiological consequences and poor outcomes for caregivers. A study that examined 33 family caregivers of individuals with Alzheimer’s disease found that caregivers performed significantly worse on memory tests compared with 34 noncaregiver controls (P<0.05), and that nighttime cortisol levels showed a significant negative correlation with contextual memory performance (P<0.001), which may be reversible.28
Psychiatric and behavioral symptoms in people with dementia may correlate with caregiver burden, depression, and distress
A meta-analysis that surveyed 228 studies of family caregivers (eg, spouses and adult children) to older adults found statistically significant correlations (P<0.001) between the presence of behavioral symptoms and caregiver burden and depression (Figure 2).29
|Figure 2. Caregiver outcomes are more strongly associated with older care recipients’ behavioral problems in the presence of dementia than with other stressors.|
A meta-analysis that surveyed 228 studies of family caregivers (43% focused exclusively on caregivers of people with dementia; mean age of care recipients, 75.7 years) found multivariate associations between behavioral symptoms in older people with dementia and family caregiver burden and depression (*P<0.001).29
A study of 421 patients with Alzheimer’s disease found that neuropsychiatric and mood symptoms were significantly correlated with burden, depression, and distress in their caregivers (Figure 3).30
|Figure 3. Multiple measures of psychiatric and behavioral symptoms in people with dementia correlated significantly with caregiver burden, depression, and distress.|
The Clinical Antipsychotic Trials of Intervention Effectiveness in Alzheimer’s Disease, or CATIE-AD, study examined the relationship between neuropsychiatric symptoms in 421 ambulatory patients with Alzheimer’s disease and burden, depression, and distress in their caregivers. To assess neuropsychiatric symptoms, the investigators used the Brief Psychiatric Rating Scale (BPRS) and the NPI. Mood symptoms in patients with dementia were assessed with the Cornell Scale for Depression in Dementia (CSDD). Both neuropsychiatric symptoms and mood symptoms were significantly correlated with Burden Interview, Beck Depression Inventory, and the Caregiver Distress Scale (*P<0.0001, †P<0.001).30
Behavioral problems in older adults factor into caregiver burden and patient’s risk of institutionalization
Caregiver burden is important not only because of the suffering it can involve, but because its severity is associated with the institutionalization of the individual with dementia. In the Canadian Study of Health and Aging of 9008 community-dwelling older adults with dementia, 326 were identified as receiving care from an informal caregiver.31 These subjects were followed for 5 years, during which 166 (50.9%) were institutionalized. 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 (r=0.55).31 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 (95% CI, 0.69-3.99) to be institutionalized, those who reported severe burden about 3 times more likely (95% CI, 1.34-7.59) to be institutionalized, and those who reported extreme burden about 8 times more likely (95% CI, 3.44-22.04) to be institutionalized.31
Even after institutionalization, behavioral disturbances can also take a toll on professional caregivers in long-term care settings and contribute to their burnout. Findings from 3 studies in a non-US meta-analysis noted that 22.1% to 68.6% of staff caring for patients with dementia in a long-term care setting reported high levels of emotional exhaustion.32 Another 3 studies found a significant association between residents’ behavior and care staff burnout and stress, and in one study, caregivers described 75% of residents’ challenging behavior as having emotional difficulties.32,33
Neuropsychiatric symptoms contribute to societal burden by increasing the cost of care in people with dementia. A study of 280 individuals diagnosed with dementia (72.1% with Alzheimer’s disease) examined the relationship between costs of informal caregiving and neuropsychiatric symptoms for people with dementia in the Cache County population.34 The study assessed neuropsychiatric symptoms using the NPI—a scale that measures the frequency and severity of 12 neuropsychiatric disturbances, including delusions and hallucinations, with a maximum total score of 144—and modeled the relationship of the NPI total (and individual subdomains) with informal care costs.34 Informal costs of care were based on a caregiver activity survey in which the caregiver estimated how much time he or she spent assisting the person with dementia over 24 hours. Assistance was defined as answering questions, leaving reminders, providing transportation, and helping with activities of daily living (eg, dressing, grooming, meals and eating). Total caregiving time was capped at 16 hours, and informal cost was calculated using the Utah median hourly wage and represented in 2015 dollars.34 Informal costs increased approximately 2% with each point increase in the NPI total score and 7.6%, 6.4%, and 5.6% with each unit increase in the agitation/aggression, affective symptoms, and psychosis subdomains, respectively.34 However, the interaction with time as a variable was not significant for NPI total, agitation/aggression, affective symptoms, and psychosis.34
Hallucinations and delusions are prevalent across the dementias. Adults with dementia-related psychosis may experience higher rates of behavioral and psychological problems, a severe disease course, and an increased likelihood of nursing home placement. Psychiatric and behavioral symptoms also have an impact on caregivers’ burden, depression, and distress, which factors in to an increased risk for patient institutionalization and increased costs of care. The aging US population and the prevalence of hallucinations and delusions associated with dementia-related psychosis represent a significant healthcare challenge for patients, caregivers, and society.
- Goodman RA, Lochner KA, Thambisetty M, et al. Prevalence of dementia subtypes in United States Medicare fee-for-service beneficiaries, 2011-2013. Alzheimers Dement. 2017;13(1):28-37.
- 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.
- Hebert LE, Weuve J, Scherr PA, et al. Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Neurology. 2013;80(19):1778-1783.
- Brenowitz WD, Keene CD, Hawes SE, et al. Alzheimer’s disease neuropathologic change, Lewy body disease, and vascular brain injury in clinic- and community-based samples. Neurobiol Aging. 2017;53:83-92.
- 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.
- Margallo-Lana M, Swann A, O’Brien J, et al. Prevalence and pharmacological management of behavioral and psychological symptoms amongst dementia sufferers living in care environments. Int J Geriatr Psychiatry. 2001;16(1):39-44.
- Steinberg M, Shao H, Zandi P, et al. Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: the Cache County Study. Int J Geriatr Psychiatry. 2008;23(2):170-177.
- Jost BC, Grossberg GT. The evolution of psychiatric symptoms in Alzheimer’s disease: a natural history study. J Am Geriatr Soc. 1996;44(9):1078-1081.
- 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.
- Ballard C, Neill D, O’Brien J, et al. Anxiety, depression and psychosis in vascular dementia: prevalence and associations. J Affect Disord. 2000;59(2):97-106.
- 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.
- 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.
- Johnson DK, Watts AS, Chapin BA, Anderson R, Burns JM. Neuropsychiatric profiles in dementia. Alzheimer Dis Assoc Disord. 2011;25(4):326-332.
- Lyketsos CG, Lopez O, Jones B, et al. Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: results from the cardiovascular health study. JAMA. 2002;288(12):1475-1483.
- Lyketsos CG, Steinberg M, Tschanz JT, et al. Mental and behavioral disturbances in dementia: findings from the Cache County Study on Memory in Aging. Am J Psychiatry. 2000;157(5):708-714.
- Leroi I, Voulgari A, Breitner JC, et al. The epidemiology of psychosis in dementia. Am J Geriatr Psychiatry. 2003;11(1):83-91.
- Lopez O, Becker JT, Sweet RA, et al. Psychiatric symptoms vary with the severity of dementia in probable Alzheimer’s disease. J Neuropsychiatry Clin Neurosci. 2003;153:346-353.
- Nagahama Y, Okina T, Suzuki N, et al. Classification of psychotic symptoms in dementia with Lewy bodies. Am J Geriatr Psychiatry. 2007;15(11):961-967.
- Aarsland D, Ballard C, Larsen JP, et al. 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.
- 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.
- Lee WJ, Tsai CF, Gauthier S, et al. The association between cognitive impairment and neuropsychiatric symptoms in patients with Parkinson’s disease dementia. Int Psychogeriatr. 2012;24(12):1980-1987.
- Mendez MF, Shapira JS, Woods RJ, et al. Psychotic symptoms in frontotemporal dementia: prevalence and review. Dement Geriatr Cogn Disord. 2008;25(3):206-211.
- Mourik JC, Rosso SM, Niermeijer MF, et al. Frontotemporal dementia: behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord. 2004;18(3-4):299-306.
- Naimark D, Jackson E, Rockwell E, et al. Psychotic symptoms in Parkinson’s disease patients with dementia. J Am Geriatr Soc. 1996;44(3):296-299.
- 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.
- Porter CN, Miller MC, Lane M, et al. The influence of caregivers and behavioral and psychological symptoms on nursing home placement of persons with Alzheimer’s disease: a matched case–control study. SAGE Open Medicine. 2016;4:1-9.
- 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.
- Corrêa MS, de Lima DB, Giacobbo BL, et al. 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.
- Pinquart M, Sörensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol: Psychol Serv. 2003;58B(2):P112-P128.
- Mohamed S, Rosenheck R, Lyketsos CG, et al. Caregiver burden in Alzheimer’s disease: cross sectional and longitudinal patient correlates. Am J Geriatr Psychiatry. 2010;18(10):917-927.
- Hébert R, Dubois MF, Wolfson C, et al. 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.
- Costello H, Walsh S, Cooper C, et al. 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.
- Duffy B, Oyebode JR, Allen J. Burnout among care staff for older adults with dementia. Dementia. 2009;8(4):515-541.
- 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 (NY). 2019;5:81-88.