Dementia-Related Psychosis Symptoms and Impact from the Patient and Care Partner (Caregiver) Perspective: An Observational, Prospective Study to Describe the Patient Experience Teresa Brandt, PhD1; Theresa Frangiosa2; Virginia Biggar2; Angela Taylor3; Bill Keller1; Vic Abler, DO1 1ACADIA Pharmaceuticals Inc., San Diego, CA, USA; 2UsAgainstAlzheimer’s (UsA2), Washington, DC, USA; 3Lewy Body Dementia Association, Lilburn, GA, USA
INTRODUCTION RESULTS (CONT) RESULTS (CONT) RESULTS (CONT)
• Dementia-related psychosis is a highly symptomatic condition characterized by hallucinations Table 1. Qualitative Interviews: Patient Characteristics • Many patients (42.3% according to patients; 41.9% according to care partners) were not Figure 4. Rankings of the Impact of Symptoms 1,2 and delusions that are due to dementia and not to an unrelated cause. receiving medications for dementia-related psychosis. For additional details on treatment, Patient Reports (N=26) Care Partner Reports (N=186) Characteristic Patient Reports (N=1) Care Partner Reports (N=15) see poster 47165 (Brandt T, et al. AAIC 2020). Most impactful Second most impactful Third most impactful Most impactful Second most impactful Third most impactful º The prevalence of hallucinations and delusions in dementia is often progressive and can Male, n (%)a 1 10 (66.7) Unranked Missing Unranked Missing 3 100 100 double over the course of the disease. Age, mean (range), years 81 85.5 (60–89) • The dementia-related psychosis symptoms most frequently reported by patients were visual • Dementia-related psychosis increases the burdens placed on individuals already suffering Dementia diagnosis (>1 to ≤5 years), n (%) <1 y 11 (74) hallucinations (88.5%), auditory hallucinations (53.8%), and distortion of senses (53.8%); 80 80 from debilitating diseases such as Parkinson’s disease (PD), Alzheimer’s disease (AD), and Dementia diagnosis, n (%) those reported by care partners were paranoid delusions (75.8%), visual hallucinations 60 60 PD 1 3 (20.0) dementia with Lewy bodies (DLB).4 (75.3%), and lack of trust for loved ones (52.2%) (Figure 2). 40 40 AD — 9 (60.0) 20 20 • Much of the responsibility for caring for individuals with dementia falls on family members.5 VaD — 3 (20.0) • Visual hallucinations were reported as occurring weekly by 52.8% of patients and 52.7% of a given symptom, % 0 0 Relationship to person with dementia, n (%) Care partners of patients with care partners (Figure 2). Patients with a given symptom, % Visual Paranoid Lack of trust Auditory Distortion Delusions Visual Paranoid Lack of trust Auditory Distortion Delusions • The patient and family experience of dementia-related psychosis can provide valuable information Friend — 5 (33.3) hallucinations delusions or for loved ones hallucinations of senses about hallucinations delusions or for loved ones hallucinations of senses about (n=23) false beliefs (n=6) (n=14) (n=14) indelity (n=140) false beliefs (n=97) (n=81) (n=91) indelity about the impact of psychosis symptoms on patients with dementia. However, there are no Spouse (wife) — 4 (26.7) (n=10) (n=3) (n=141) (n=41) Figure 2. Quantitative Survey: Symptom Occurrence and Recent Frequency studies that describe dementia-related psychosis from a patient and care partner perspective. Daughter — 3 (20.0) Niece, daughter-in-law, or son- Patient Reports (N=26) Care Partner Reports (N=186) — 3 (20.0) in-law At least weekly Monthly or less often Unknown frequency At least weekly Monthly or less often Unknown frequency • For care partners who reported that the patient’s paranoid delusions/false beliefs (n=61) or 100% 100% aSex of person with dementia. AD, Alzheimer’s disease; PD, Parkinson’s disease; VaD, vascular dementia. visual hallucinations (n=48) were most impactful, difficulty knowing what is real and what is 88.5% not (85.2% and 85.4%, respectively), anxiety (85.2% and 72.9%, respectively), and effects on OBJECTIVE 3.8% • The most commonly reported symptoms of dementia-related psychosis were visual hallucinations relationships (67.2% and 41.7%, respectively) were common types of impacts reported. 80% 80% 75.8% 75.3% (87.5%), auditory hallucinations (68.8%), and persecutory delusions (56.3%) (Figure 1). 4.8% • To collect data on the patient experience of symptoms and impact of dementia-related 5.4% psychosis from the patient and care partner (caregiver) perspective. 30.8% • Participants commonly described dementia-related psychosis as impacting activities of daily 12.4% living (75.0%), sleep (62.5%), family life (56.3%), and safety (56.3%) (Figure 1). 60% 60% 17.2% CONCLUSIONS 53.8% 53.8% 52.2% 48.9% 3.2% 5.4% Figure 1. Qualitative Interviews: Symptom Occurrence and Impactsa (N=16) 15.4% 43.5% • Persons with dementia-related psychosis experience hallucinations and delusions that have a 23.1% 4.3% 4.3% METHODS 40% 38.5% 40% 14.5% substantial impact on their lives. Occurrence of symptoms Impact of symptoms 3.8% Percentage of patients Percentage of patients 10.2% Worry Grandiose delusions 6.3% 6.3% 53.8% 58.6% • These episodes of dementia-related hallucinations and delusions greatly impact patients’ Qualitative Interviews Fear 25.0% 52.7% 19.2% 23.1% 22.0% Jealousy delusions 12.5% Depression 31.3% 3.8% 1.1% overall health and quality of life. Interviewed participants described impacts on sleep, family Sadness 43.8% 20% 38.5% 20% 39.2% Somatic delusions • The qualitative component consisted of a prospective, observational, noninterventional, 18.8% Frustration 43.8% 30.8% 34.4% 9.7% 29.0% 11.5% 11.5% and social life, emotional state, independence, and safety. These impacts substantiated a Anger Persecutory delusions 56.3% 43.8% single-visit study involving qualitative interviews approximately 60 minutes in length with Driving 6.3% 15.4% 11.5% 11.3% need for 24-hour care partner support of the patient, with consideration and concerns for Tactile hallucinations 18.8% Physical activity/mobility 12.5% 7.7% eligible English-speaking participants in the United States. Living situation/need for extended-care facility 35.0% 0% 0% Olfactory hallucinations 31.3% future further-altered living situations or the need for placement in an extended-care facility. Independence 25.0% Distortion of Paranoid Lack of trust Delusions about Visual Auditory Distortion of Paranoid Lack of trust Delusions about Visual Auditory Socialization senses delusions for loved ones indelity hallucinations hallucinations senses delusions for loved ones indelity hallucinations hallucinations Gustatory hallucinations 37.5% 43.8% • In-depth interviews were conducted with patients or care partners of patients who have a Safety 56.3% • Symptoms of dementia-related psychosis caused patients to question their understanding of Auditory hallucinations 68.8% Family life 56.3% Percentages may not sum to the total percentage for each symptom due to rounding. clinical diagnosis of all-cause dementia with psychotic symptoms (for at least 2 months), Sleep/sundowning 62.5% reality and decreased their confidence in engaging fully with daily life. Visual hallucinations 87.5% recruited through physician referrals. Activities of daily living 75.0% 0 10 20 30 40 50 60 70 80 90 100 0 10 20 30 40 50 60 70 80 90 100 • Differences observed between symptoms and impacts reported by patients versus those Percentage of patients Percentage of patients • Most (100/186; 53.8%) care partners reported that patients were not at all comfortable or • Care partners participating in the qualitative interviews included individuals who reported by care partners are likely related to differences in dementia severity and need a were only a little comfortable discussing the symptoms of dementia-related psychosis with Patient-reported and care partner-reported data are combined. for care partner assistance as reflected by mean age, dementia subtype, and time since provided at least 20 hours per week of direct, in-person care for an individual with those closest to them. dementia-related psychosis. Quantitative Results dementia diagnosis. • 5/26 (19.2%) of patients reported that they were not at all comfortable or only a little • The semistructured interview was conducted via telephone and was based on • Most care partners reported that patients were not comfortable discussing symptoms of • In total, 26 patients and 186 care partners participated in the quantitative online survey. comfortable; however, this may be a reflection of the less severe disease progression dementia-related psychosis with those closest to them, suggesting a need for greater education concepts included within the Scale for the Assessment of Positive Symptoms – observed in patient reports. Hallucinations+Delusions domains and on data from previously conducted surveys. • Care partner reports reflect individuals who were older (mean age 78.1 years) and more reported on dementia-related psychosis and efforts to reduce stigma associated with the condition. patients having AD, PD, and vascular dementia (VaD) relative to patient reports (Table 2). • On a visual analog scale for symptom severity of 1 (very mild) to 5 (very severe), visual • This study is limited in that most patients had AD or DLB and data may not reflect all subtypes Quantitative Surveys • Patient reports reflect individuals who were younger (mean age 64.6 years) and more reported hallucinations were rated a mean 3.27 by patients and a mean 3.49 by care partners (Figure 3). of dementia. In addition, results of survey data are subject to recall bias. • The quantitative online survey was completed by patients with dementia-related psychosis having DLB and mild cognitive impairment (MCI) relative to care partner reports (Table 2). º However, the consistency of results from the qualitative interviews and the larger quantitative Figure 3. Quantitative Survey: Symptom Severitya survey supports the reliability of the findings. (patient reported) or by care partners of patients with dementia-related psychosis • Care partner reports had a longer span of time since dementia diagnosis in the population Patient Reports (N=26) (care partner reported) recruited through direct outreach by the advocacy groups (24 years) relative to that of patient reports (10 years). Care Partner Reports (N=186) • Patient experience data demonstrate that there is a need for treatments to reduce the UsAgainstAlzheimer’s and the Lewy Body Dementia Association. Auditory hallucinations (n=12) 2.77 Auditory hallucinations (n=75) 3.14 symptoms and impacts of dementia-related psychosis. For additional details on treatment, Table 2. Quantitative Survey: Patient Characteristics see poster 47165 (Brandt T, et al. AAIC 2020). • The online questionnaire included 35 close-ended items designed to gather patient and care Visual hallucinations (n=21) 3.27 Visual hallucinations (n=132) 3.49 partner feedback on medical history, occurrence, severity, frequency and impact of symptoms, Characteristic Patient Reports (N=26) Care Partner Reports (N=186) treatments taken, and demographic information. Male, n (%)a 15 (57.7) 91 (48.9) Delusions about in delity (n=3) Delusions about in delity (n=41) 3.73 Age, mean (range), years 64.6 (49–84) 78.1 (55–97) 2.33 REFERENCES • Participants reported the severity of symptoms with a visual analog scale of 1 (very mild) Race, white, n (%) 21 (80.8) 167 (89.8) 1. Jeste DV, Finkel SI. Am J Geriatr Psychiatry. 2000;8(1):29-34. 4. Cummings J, et al. J Prev Alzheimers Dis. 2018;5(4):253-258. Lack of trust for loved ones (n=6) 2.67 Lack of trust for loved ones (n=93) 3.39 to 5 (very severe). Dementia diagnosis, date range 2010–2019 1996–2019 2. Rayner AV, et al. Am Fam Physician. 2006;73(4):647-652. 5. Friedman EM, et al. Health Aff (Millwood). 2015;34(10): Dementia type, n (%)b • Care partner burden was beyond the scope of this study. 3. Steinberg M, et al. Int J Geriatr Psychiatry. 2008;23(2): 1637-1641. AD 6 (23.1) 91 (48.9) Paranoid delusions (n=8) Paranoid delusions (n=127) 3.65 2.89 170-177. • Participants in the interview portion of the study were not invited to participate in the survey PD 1 (3.8) 32 (17.2) DLB 13 (50.0) 71 (38.2) portion. Pairs of patients and care partners completing the survey were not recruited; Distortion of senses (n=10) 3.25 Distortion of senses (n=75) 3.25 ACKNOWLEDGMENTS FTD 2 (7.7) 7 (3.8) however, care partners of patients completing the survey were not explicitly excluded ACADIA Pharmaceuticals Inc. (San Diego, CA, USA) provided funding for medical writing and editorial assistance in the development VaD 1 (3.8) 18 (9.7) 1 2 3 4 5 1 2 3 4 5 of this poster. Meghan Jones, PhD, revised the poster based on input from the authors, and Jennifer Robertson, PhD, copyedited and from participating. MCI or mild dementia 11 (42.3) 27 (14.5) Mean VAS (SD) Mean VAS (SD) styled the poster per congress requirements (Ashfield Healthcare Communications, Middletown, CT, USA). Additional contributions to Other (brain trauma, other, aging) 7 (26.9) 53 (28.5) the project were made by Meryl Comer (UsA2), Ian Richard (LBDA), Todd Graham (LBDA), Kim Cardenas (ACADIA Pharmaceuticals Very mild Very severe Very mild Very severe Living situation of person with dementia, n (%) Inc.), Dan Kaiser (ACADIA Pharmaceuticals Inc.), and James Valentine (Hyman Phelps & McNamara, PC). With spouse/partner 17 (65.4) 101 (54.3) RESULTS aAccording to the VAS, 1 is defined as very mild and 5 as very severe. With children 5 (19.2) 29 (15.6) SD, standard deviation; VAS, visual analog scale. DISCLOSURES To receive a copy of this poster, scan QR code Alone 6 (23.1) 19 (10.2) TF is a consultant with Frangiosa & Associates, LLC. via barcode reader application. By requesting this content, you agree to Qualitative Results VB and AT have no relevant financial relationships to disclose. receive a one-time communication using In facility or other 1 (3.8) 65 (34.9) automated technology. Message and data • Visual hallucinations were most impactful in the patient self-report group, and paranoid rates may apply. Links are valid for 30 days a b TB, BK, and VA are employees of and may hold stock and/or stock options • Sixteen individuals (1 patient, 15 care partners) participated in the qualitative interview Sex of person with dementia. Reported by participant; ≥1 subtype could be selected. AD, Alzheimer’s disease; DLB, after the congress presentation. dementia with Lewy bodies; FTD, frontotemporal dementia-spectrum disorder; MCI, mild cognitive impairment; delusions were most impactful in the care partner report group, followed by visual with ACADIA Pharmaceuticals Inc. (Table 1). PD, Parkinson’s disease; VaD, vascular dementia. hallucinations (Figure 4).
Poster # 47164 Presented at the Alzheimer’s Association International Conference (AAIC) 2020 • 27–31 July 2020