Data from Tampi and Tampi,² Masopust et al,³ Casey,⁴ and Evans and Cotter.⁵

Impact of DRP on Patients

Cohen-Mansfield and colleagues⁶ analyzed the emotional and behavioral reactions of persons with dementia in relation to the delusions and hallucinations they experienced, based on family carer reports. The results showed that approximately half of the delusions resulted in discomfort while around 40% did not. Among the types of delusions, those related to abandonment, danger, and infidelity were associated with more discomfort than others. These findings highlight the need for clinicians to examine the emotional impact of delusions and hallucinations as part of patients’ assessment and as a consideration in treatment decisions.

Caregiver Perspectives

Caregivers have described both happy and fearful reactions of patients experiencing DRP:

“My Dad says he works for Congress and he is [President] Trump’s right-hand man. He tells me Trump calls him, and Trump thinks he is fantastic. My father never worked in politics.”⁷

“[My mother] recently had delusions/hallucinations of robbers/soldiers coming in through her window with guns, and she hid in the closet — not comfortably either.”⁷

Studies have examined outcomes for patients with DRP. For example, one study⁸ followed 456 patients with Alzheimer disease (AD) at early stages for up to 14 years and examined the time to cognitive and functional decline, institutionalization, and death. Delusions, which were present in 34% of patients at baseline and 70% at any visit, were associated with increased risk of cognitive and functional decline. Hallucinations were associated with not only more rapid cognitive and functional decline but also increased institutionalization and higher risk of death. Hallucinations were present in 7% of patients at baseline and 33% at any visit. Another study⁹ in patients with AD found that hallucinations, especially visual ones, were associated with more rapid cognitive decline and increased mortality. Thus, the presence of DRP indicates a more rapid disease progression of AD.

In addition to AD, DRP negatively impacts patients who have other types of dementia. For example, a study¹⁰ of individuals with Parkinson disease (PD) found that the presence of hallucinations was the strongest predictor of nursing home admission during the 4-year study period. Another study¹¹ compared psychiatric symptoms and functional decline in patients newly diagnosed with AD and dementia with Lewy bodies (DLB) over 5 years. Those who had fewer neuropsychiatric symptoms (NPS) had milder functional impairment, both in the AD group and the DLB group. Of the NPS, delusions and aggression were the strongest predictors of a more rapid functional decline.

DRP also has a negative effect in patients with mild cognitive impairment (MCI). A study¹² examined whether NPS were related to global functional impairment at baseline and over a 3-year period in normal older controls, subjects with MCI, and subjects with mild AD. At baseline, hallucinations, anxiety, and apathy were associated with greater global functional impairment. Baseline hallucinations and apathy were associated with greater global functional impairment during the 3-year period across all subjects.

Impact of DRP on Carers

DRP is associated with increased burden on care partners for several reasons. Delusions and hallucinations may directly impact the patient’s ability to perform cognitive and functional tasks,¹³ which can contribute to carer distress.^14,15 Patients experiencing hallucinations, such as seeing a person in the house who should not be there, may run after “the person” or even call the police for help.

Additionally, although some psychotic symptoms might not be dramatic, they are often accompanied by troublesome affective and behavioral symptoms, such as agitation, aggression, depression, or irritability/anger, which can be stressful for the carer. Sleep disturbances associated with psychotic symptoms may not only lead to increased agitation and reduced daytime functioning in patients, which are challenging for carers to address, but also cause lack of sleep for carers.¹⁶ Furthermore, DRP is often treated with antipsychotics, which can have a range of negative effects on patients, including parkinsonism and tardive dyskinesia, contributing to carer burden.¹³

Psychotic symptoms can also adversely impact the emotional connection between the care partner and the patient.¹⁷ The partnership-relationship between the patient and the carer suffers due to the occurrence of dementia, and psychotic symptoms are particularly important in this regard.¹⁸ Patients who act out psychotic content, such as believing their spouse is having an affair, may get angry and even inflict physical threats toward or violence on the partner.^17,19

Care Partner Perspective

One care partner described the danger of her husband’s delusions and hallucinations:

“My husband … would quickly whip out his cane to hit me, bite my daughter, twist my arm back in its socket, grab the steering wheel. He thought that I had a boyfriend who was trying to steal his money, that I was trying to poison him, and could see and hear all the people in the house who were plotting against him.”⁷

Of course, these risk factors for care partner distress are not mutually exclusive and can exist to varying degrees in different patients. Clinicians must be sure that carers also receive assessment and support along with the patient with dementia.¹⁵

Carer assessment. To measure the impact of DRP on care partners, several scales are available. The Zarit Burden Interview, a popular self-report measure, originated as a 29-item questionnaire.²⁰ Shortened versions are available for faster administration.²¹ Carers are asked to rate each question on a 5-point scale ranging from 0 (Never) to 4 (Nearly Always).^21,22 This scale includes questions such as: “Do you feel stressed between caring for your relative and trying to meet other work/family responsibilities?”²³

The Relatives’ Stress Scale (RSS)²⁴ is a self-rated, 15-item scale that measures the carer’s burden on a scale from 0 to 60, with a higher score indicating a higher degree of burden.²⁵

The Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D)²⁶ links caregiver distress to every psychiatric symptom on the 12-item Neuropsychiatric Inventory (NPI), which includes delusions and hallucinations. If the symptom is present, the carer is asked for the frequency, the duration, and the extent to which that symptom is associated with distress. In a study²⁷ that examined carer burden associated with BPSD using the NPI for patients with dementia and the NPI-D for their carers, delusions had the highest mean NPI-D score (3.2 ± 1.9).

Terum and colleagues¹⁴ conducted a similar analysis to determine whether specific NPS in patients with AD and DLB impacted carer distress. Distress was analyzed using the RSS, and patients’ symptoms were rated using the NPI. Apathy was the symptom most closely associated with higher carer distress overall; delusions were a significant contributor to carer distress in the DLB group.

Another way of measuring the impact of DRP is to consider the consequences of these symptoms, such as depression and burnout, in those caring for a person with dementia. A study²⁸ that analyzed distress in carers of people with DLB and carers of people with AD found that 40% of those caring for people with DLB and 20% of those caring for people with AD experienced moderate or high burden, which increased the risk of psychiatric disorders.²⁸ Carers of people with DLB also had a significantly higher RSS total score (19.9) compared with those caring for people with AD (15.0; P = .005). These results indicate that psychotic symptoms are key drivers of care partner burden.

Caregiver Interventions for DRP

As burdensome as DRP can be, not all delusions or hallucinations are problematic or disruptive for the patient or the care partner.

Caregiver Perspectives

One carer described nonharmful hallucinations his mother experienced:

“She lately thinks on occasion that she lives in England/Ireland (never been there even) or in Texas (which she visited quite a bit 40 some years ago). Doesn’t regularly believe that the house I bought last year is ours (it is). … I have no idea where they get this stuff, and it’s always quite surprising to see what they come up with next. Forgot to mention another one that keeps coming up: She thinks that both she and I are or have been in the military! (Neither is true.) She’ll ask me about the base or where I’m stationed and how long before I can retire with full benefits. She thinks we’ve lived all over the world.  (uh, no. not global travelers. Been to Mexico. Once. almost 30 years ago!).”²⁹

However, when symptoms are distressing patients and negatively impacting carers, clinicians can offer interventions to help carers cope and useful techniques to manage DRP.^19,30

Coping strategies. A common and effective coping strategy is to enhance the care partner’s ability to manage behavioral problems, including delusions, hallucinations, and agitation.^31,32 Cognitive-behavioral therapy (CBT) helps carers avoid negative thoughts and employ constructive strategies. Psychoeducational strategies are frequently used to educate carers about dementia, communication, and management of troublesome behaviors. Interventions to support and educate carers may be delivered to individuals or to groups and may be provided in person or by telephone, email, or internet.^31,32

Two main strategies for helping care partners cope with DRP are emotion-based and problem-focused interventions.³¹ Although both strategies have beneficial elements, the problem-focused strategies are typically more successful. Emotion-based strategies, such as using humor and ignoring unimportant issues, can have negative consequences for both patients and carers. In contrast, problem-focused strategies, such as learning about the condition, talking to others in similar situations, having a personal hobby, and following routines, are associated with lower carer strain and psychological comorbidity.

Case Practice Question

Bill has moderate-to-severe dementia due to Alzheimer disease. His wife and care partner Carol has coxarthrosis, mild general anxiety disorder, and impaired vision. Carol contacts you to say that the situation at home is getting more difficult because her husband is complaining that their neighbor is entering their home at night to have sex with her, which is not true. After confirming that Bill is not aggressive or violent toward Carol or the neighbor, what is the best next step to help Carol and Bill?
a. Administer a depression rating scale for Carol.
b. Find a nursing home for Bill to be admitted.
c. Prescribe an anxiolytic for Carol.
d. Direct Carol to a service offering counseling and support for carers of people with dementia.

Discussion of Case Practice Question

Preferred response: d. Direct Carol to a service offering counseling and support for carers of people with dementia.

Explanation: Counseling and support should provide coping strategies to help Carol handle the challenging behaviors associated with her husband’s dementia.³¹ Administering a depression scale for Carol or providing her with a prescription for anxiety is not a priority in this situation unless her RSS score is above 30.²⁸ A nursing home may be required eventually but is usually not the first step to consider, especially if Bill’s symptoms follow a typical fluctuating course and he is not aggressive or threatening to Carol.

Techniques for carers to manage hallucinations. Coping with visual hallucinations presents a unique challenge to care partners; these symptoms can have substantial psychosocial effects on carers and contribute to nursing home placement.³³ Care partners may ask clinicians about how to behave or what they should say when the patient sees and responds to visual hallucinations. A common yet unhelpful strategy is to argue and try to convince patients that what they are seeing is not real.³⁴ Instead, carers may use visual, cognitive, or interactive techniques to help patients with hallucinations.^33,35

Caregiver Perspective

Carers described going along with their parents’ hallucinations of living and dead relatives, children, and animals:

“I don’t mind going into her world with them most of the time, but I usually test the waters first and see if she is willing to consider she had a dream. If she says no, not a dream, then I go with her. … Redirection works sometimes but only for short periods of time if at all.”⁷

“He thinks that I’m a wonderful person who takes care of him, that I’m a pitcher for the Yankees and that children are floating on the ceiling. I can live with that. … Unless these hallucinations are either scary to [the patient] or dangerous for you, you can go along with it.”⁷

Conclusion

Psychotic symptoms are common in patients with dementia and are associated with more rapid cognitive and functional decline, high risk for institutionalization, and increased mortality. In terms of carer impact, DRP is often, although not always, related to increased burden, stress, and depression. Treatment may not only improve the distressing symptoms but also reduce the need for institutionalization and improve the quality of life for patients and carers. Clinicians must be prepared to offer strategies to care partners and family members, such as psychoeducation, CBT, and support, to help them cope with DRP and other behavioral symptoms.

Clinical Points

• Recognize the negative outcomes related to DRP, including increased risk of cognitive and functional decline, nursing home admission, patient mortality, and carer stress.
• Assess the stress and burden of DRP in both patients and care partners using appropriate rating scales.
• Provide timely psychoeducation, support, and strategies to help carers better manage their loved ones’ delusions and hallucinations.

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