1. Moments of Sheer Terror: When People with Dementia Act on Delusional Beliefs Colleen Millikin, Ph.D., C.Psych. Department of Clinical Health Psychology Faculty of Medicine University of Manitoba

2. Overview What are delusions? What causes delusions in dementia? Risk factors Common types of delusions in dementia Nonpharmacological approaches Examples in community and long-term care Pharmacological approaches Role of environment

3. Delusions Delusional beliefs (delusions) are: –false beliefs that are resistant to logic –associated with strong emotions (fear, anger) that prompt the person to act on the beliefs Delusions occur in: –psychotic illnesses (schizophrenia, bipolar disorder) –delirium (e.g., metabolic imbalance) –dementia

4. Causes of Delusions Mechanisms involved in delusions are not well understood Theories involve: –attempt by people with dementia to understand their environment –related to mood changes –caused by factors unrelated to dementia process –directly caused by underlying brain damage

5. Causes of Delusions More theories: –dysfunction in specific brain areas (greater asymmetry in brain atrophy) –right hemisphere dysfunction –neurotransmitter disturbances –imbalance between intact attention and impaired memory/semantic processing ability

6. Delusions and Dementia Not all people with dementia develop delusions but many do - difficult to predict who will/won’t develop delusions Some people have delusions (delusional disorder) but not dementia –these delusions tend to be more complex, persecutory or grandiose

7. Delusions and Dementia 30-40% percent of people with Alzheimer’s disease develop delusions at some point in the disease process (reported incidence rates in studies range from 10% to 73%) Delusions common in dementia of Parkinson’s disease, vascular dementia, and Lewy Body Disease (70% of people with LBD have complex visual hallucinations and/or paranoid delusions)

8. Delusions and Dementia Risk factors for development of delusions (not consistently found in all studies): –older age –female gender –less education –African-American race

9. Delusions and Dementia Risk factors for development of delusions (more consistent evidence): –more severe cognitive impairment (especially frontal and temporal lobe dysfunction) –more common during moderate stage (compared to very mild or very severe dementia)

10. Delusions and Dementia Other risk factors: –delirium (medications, infections (UTI, pneumonia), low sodium, etc.) –sensory impairment –basal ganglia infarct (often sudden onset)

11. Delusions and Dementia Delusions in Alzheimer’s disease are associated with: –increased likelihood of depression in person with AD –caregiver distress –earlier institutionalization –more rapid progression of dementia –more aggressive behaviour

12. Common Delusions in Dementia Delusion of theft (belief that people are stealing or hiding things, most common, 22%) –often related to memory impairment Phantom boarder (belief that other people are living in the home, 20%) Persecution and endangerment (belief that others are “out to get me” or that food is being poisoned, 17%)

13. Common Delusions in Dementia Delusion of infidelity (belief that spouse is unfaithful, 5%) –may be related to memory impairment One’s house is not one’s home (5%) –likely related to agnosia (inability to recognize objects/people) Delusions related to television (belief that events on TV are happening in real life, 5%)

14. Common Delusions in Dementia Picture sign (believing that their mirror image is someone else, 5%) Delusions of infestation (believe that they or their home are infested by small organisms, spiders, ants, lice, etc., 5%) Abandonment (belief that caregiver will abandon them or put them in a nursing home, 4%)

15. Common Delusions in Dementia Delusional misidentification (belief that a familiar person has been replaced by an imposter, Capgras syndrome, 3%) –likely related to agnosia (inability to recognize objects/people) Delusions of love (belief that a prominent or famous person is secretly in love with them, De Clerambault’s syndrome, 1%)

16. Common Delusions in Dementia: Behaviours Delusions of theft –can lead to people hiding things, wearing several layers of clothing Delusions of persecution –can lead to people barricading themselves in their rooms One’s house is not one’s home –may leave home in search of “home”

17. Common Delusions in Dementia: Behaviours Delusions of infidelity –can lead to aggression toward spouse Delusions of poisoning –can lead to refusal of food and/or medication

18. Transient vs. Enduring Delusions Delusions of theft, infidelity, etc. may be enduring (affecting behaviour almost every day) Many people also have transient delusions that may occur only once, regularly at a particular time of day, or for a period of days/weeks These types of delusions not described in literature on delusions in dementia

19. Causes of Transient Delusions In persons with dementia, delusional behaviour may be reliving of past experiences Brain can’t form new memories, so it recycles old ones Often triggered by events in the environment (e.g., time of day, activities, food) Particularly challenging if person has a history of trauma (child abuse, war experiences, etc.)

20. Nonpharmacological Approaches If delusion is not distressing to person with dementia, may not need intervention If person is low risk to self or others, nonpharmacological approaches should be tried first

21. Nonpharmacological Approaches General approaches (Rabins, Lyketsos, & Steele, 2006; Harvey, 1996): –remain calm –distraction (e.g., discussion of other topics) –frequent scheduled activities –one to one attention –remove clutter from the environment (theft) –periodic separation from person who is the target of suspicions (e.g., spouse)

22. Nonpharmacological Approaches General approaches: –improve clarity of communication with person (reduce chance of misinterpretation) –offer reassurance when person is confused –assess possibility of depression (in some cases, delusions can improve with antidepressant medication) –conversation about the feelings behind the false beliefs

23. Nonpharmacological Approaches Paranoid delusions: –be honest and keep any promises you make –explain any procedures you intend to do before doing them so person knows what to expect –try to keep daily routine as consistent as possible –avoid talking, laughing, or whispering where person might see you but not hear what is said

24. Nonpharmacological Approaches Paranoid delusions: –do not take person’s suspicions personally –do not agree with person that you did something you did not do –DO NOT ARGUE with person (state once that you did not do what you are accused of and do not talk about matter any further for at least an hour)

25. Nonpharmacological Approaches Paranoid delusions: –if food is an issue, serve food and drink directly in front of person - let person choose food from a tray of items that are all the same –if person is particularly suspicious of one caregiver, avoid having that person provide care if possible –have one caregiver listen to person for a brief time each day and validate person’s feelings

26. Nonpharmacological Approaches Paranoid delusions: –“I know you believe this is true, but it is not real. Sometimes people’s minds play tricks on them. It must be very frightening to believe that. No one is going to hurt you here.” –provide reassurance –recognize that you cannot talk person out of belief –belief is real to the person

27. Nonpharmacological Approaches “This is not my house”: –“I guess it doesn’t look familiar, but this is your house.” (Then change the subject.) –help person focus on familiar detail that does not rely on visual identification –respond to feeling (“I know you want to go home.”) “Someone stole my watch.” –“I’ll help you look for it.” –have duplicates of important items

28. Nonpharmacological Approaches “You are not my husband”: –reassure person (“I am your husband.”) but avoid arguing –try distracting person with familiar activity “My mother is coming for me.” –respond to feeling of loss person may be expressing (“Tell me about your mother.”) –do not contradict person or play along with delusional belief

29. Examples in Community “You have to incubate the specimens.” (3:00 AM, 69 year-old man with frontal-temporal dementia) “I have to get to the bank.” (morning, January 1, 70 year-old man with vascular dementia) “I have to fix the toilet.” (afternoon to evening to night, 82 year-old man with vascular dementia and low blood sodium)

30. Examples in LTC “That’s not the way I designed it.” (65 year- old man with normal pressure hydrocephalus) “I can’t come with you, my parents will be here soon to take me home.” (92 year-old woman with Alzheimer’s disease) “The kitchen is over this way.” (82 year-old woman with visual impairment and probable Lewy Body Disease)

31. Pharmacological Approaches May be necessary in delusional disorder, especially if past history of psychosis that responded to medication Antipsychotic medication usually does not take delusions away, but person cares about them less so is less likely to act on them Risks associated with neuroleptics

32. The Role of the Environment Identify triggers (time of day, etc.) then change routine to decrease triggers Reduce impact of sensory impairment to extent possible (lighting, hearing aids, noise) May help to reduce clutter (less chance of losing things) If behaviour is relatively benign, change approach of staff toward behaviour (treat it as “normal”) - example of “security guard”

33. Questions and Discussion

34. Sources Bassiony, M.M., & Lyketsos, C.G. (2003). Delusions and hallucinations in Alzheimer’s disease: Review of the brain decade. Psychosomatics, 44, 388-401. Fischer, C., Bozanovic-Sosic, R., & Norris, M. (2004). Review of delusions in dementia. American journal of Alzheimer’s disease and other dementias, 19(1), 19-23. Fischer, C., Ladowsky-Brooks, R., Millikin, C., Norris, M., Hansen, K., & Rourke, S.B. (2006). Neuropsychological functioning and delusions in dementia: A pilot study. Aging & Mental Health, 10(1), 27-32. GrahamNorth, B., & Lazar, D. (1999, unpublished manuscript). Care-full elder care: A manual for staff in personal care homes. Harvey, R.J. (1996). Review: Delusions in dementia. Age and Ageing, 25, 405-408. Mace, N.L., & Rabins, P.V. (1999). The 36-hour day, third edition. Baltimore, MD: Johns Hopkins University Press. Rabins, P.V., Lyketsos, C.G., & Steele, C.D. (2006). Practical dementia care, second edition. New York, NY: Oxford University Press.