DOI: 10.3886/icpsr29042.v1
title: People With Dementia as Witnesses to Emotional Events in Southern California, 2008-2009
title: Version 1

description: This study sought evidence that a subset of people with dementia (PwD) have reliable memory for emotional events in their own lives, and that they differ from PwD whose memory for emotional life events is less reliable or unreliable in respect to their own disease stage, confabulation and neuropsychiatric behaviors, and awareness of their cognitive impairment. A cross-sectional study of 93 people with mild or moderate dementia (aged 55 and older) and a comparison group of 50 older adults was conducted. Memories of recent autobiographical events that had both positive and negative emotional content were elicited during a structured interview, designed for consistency with accepted forensic interviewing techniques. Accurate recollection of these events was independently verified by a non-demented informant, usually a family member. In addition, both members of the dyad were interviewed independently to assess other characteristics of people with dementia (PwD): demographics, depressive symptoms, functional and cognitive abilities, medications, health conditions, behaviors and characteristics of the dyadic relationship. Researchers also assessed PwD for disease stage, awareness of cognitive impairment, and episodic memory. A validated test of emotionally-influenced memory was administered to qualified participants to verify the novel structured interviewing assessment developed for this study. Two researchers conducted the study assessments during home visits. The data file contains 945 cases and 732 variables.
description: The study sought evidence that a subset of people with dementia (PwD) has reliable memory for emotional events in their own lives, and they differ from PwD whose memory for emotional life events is less reliable or unreliable in respect to their own disease stage, confabulation and neuropsychiatric behaviors, and awareness of their cognitive impairment. In addition and in the context of a structured interview, they can provide (hypothetically) more details related to memories for emotional life events and discuss the events with the same accuracy after a time delay.
description: The study design was a cross-sectional, one-time assessment of a convenience sample of Older Adults (OAs) diagnosed with mild to moderate stage dementia and their Informants, as well as non-demented normal comparison OA participants and their Informants. The paired OA and Informant are referred to as a dyad. A two person research team conducted assessments in the home (except for 3 conducted at a Senior Center). Data collection for each of the dyad members occurred in separate rooms, paired with a member of the research team. It was especially important that the autobiographical life events interviews be conducted independently, since the Informant was asked to independently verify and discuss recent events in the OA's life. The entire assessment was recorded and lasted about one and a half hours. Both participants in the dyad completed questionnaires and a structured interview designed to assess the dependent, independent and statistically-controlled variables. The Dependent Variable was memory for emotional life events. The methods employed included a modified Geriatric Adverse Life Events Scale (GALES) and structured interviewing methodology. A novel measure was created to assess presence of good or poor memory for emotional life events. Event memories were elicited in audio-recorded structured interviews as described below. Two researchers concurrently interviewed the OA and the Informant participants. The instrument was administered after consenting and vision and hearing tests, beginning as soon as the OA and Informant were situated in separate rooms. First, all OA participants (both dementia patients and comparison group) were asked four questions to assess their ability to recall (without categorical or specific cues) life events with emotional content. The Research Assistant (RA) asked two questions about pleasant or happy events (in the last month or six months) and two about unpleasant, sad events (same time frames). The next portion of the interview was designed to trigger recognition memory for emotional life events by use of categorical cues. The research team adapted the GALES. The GALES list of adverse events that tend to occur in the lives of older adults (e.g., major financial difficulties, death of a brother or sister) was supplemented to include categories of pleasant or happy events tailored to older adults (e.g., birth of a grandchild or great grandchild). The resulting checklist of 30 items (called the Geriatric Life Events or GLE) was read to OA participants to trigger memories. When the OA reported a memory related to a particular category, the RA posed a series of questions about the memory (e.g., provide a brief description and details, how long ago, did it happen more than once, was it stressful, was it pleasant or unpleasant). This process was repeated until the end of the list was reached or the OA had reported three positive and three negative events (including those reported by recall), whichever came first. The researcher filled out up to six forms containing information on the six life event memories. In another room, concurrent with the OA structured interview, Informants were given a copy of the GLE list of 30 items and asked to check off the events the OA had experienced in the last six months. The RA selected up to six events, three that were likely to be positive and three likely to be negative for the OA. A structured interview about each event included the same questions (brief description, how long ago, etc.) as the structured interview with the OA, and the researcher filled out similar forms. In addition, the RA provided the Informant with a list of specific types of memories (e.g., had family portraits taken, was burglarized) to find a set of memories that had not happened to the OA that could be used as "false memories." The mix and numbers of positive and negative false memories selected was proportional to the number and type of events elicited from the Informant (one "false" for every two reported memories of the same valence) and the set of all events (true and false) were placed in random order using a random numbering scheme. In the next phase of the assessment, the OA's recognition of specific life event memories was assessed. The two researchers swapped memory forms. The RA working with the OA reviewed with him or her, the OA's life events reported by the Informant as well as the intermingled false memories. Each memory was identified with a brief description and if the OA recognized the event, the structured interview eliciting information about the memory was conducted. Similarly the other researcher reviewed the OA's life event forms with the Informant and if the Informant recognized the event, a structured interview was conducted to elicit detailed information. If the Informant did not recognize the event, the RA posed a question about whether the event could have happened without the Informant's knowledge. If the same memory was reported as had already been discussed with the Informant, the details provided by the OA were reviewed with the Informant for confirmation or not. After a delay of 30 to 60 minutes duration, just prior to the conclusion of all the assessments, all events discussed were reviewed with the OA participant by providing the brief description and asking the OA if he or she recognized the event and could provide details. Because of skill differentials (two of five RAs had little experience with people with dementia and therefore focused on conducting Informant and comparison group OA interviews) counterbalancing of RAs between Informants and OAs and comparison group and People with Dementia (PwD) was not attempted. All novel measures (the GLE) and a selection of validated measures were analyzed for difference of means (Univariate ANOVA) among RA's within groups. After completion of the home visit, raters listened to the audio recording of the assessment to rate each memory by assigning values to the dependent and independent variables of interest.
description: Dependent Variables The following Statistically controlled variables were assessed in all Older Adult (OA) participants. 1. Adequate hearing - To test for adequate hearing, a researcher stood behind each participant and rubbed thumb and forefinger together near each ear. The participant was asked if he or she heard anything. Hearing was coded as present or absent in each ear. 2. Adequate vision - To test for adequate vision, participants were asked to read from the top of a Snellan-like portable eye chart consisting of numerals in decreasing font sizes. The score was the smallest font size read without errors. The card was placed 14 inches from the bridge of the nose and the participant was asked to read with and without glasses. Adequate vision was defined as ability to discern 14 point type or smaller. 3. Emotionally-influenced memory, was tested in OA participants using The Three Phase Test, also called the Cahill Emotional Memory test revised for the purposes of this study as instructed by the author: An audio-visual story consisting of 11 photographic slides was divided into 3 phases. The first 4 slides (phase 1) were neutral in emotional content, the next four slides (phase 2) had negative emotional content and the final phase was neutral, like phase 1. After a delay, a short questionnaire detected if material from the emotional phase was remembered better. 4. Mental status - The Montreal Cognitive Assessment (MoCA) measured mental status on a 30 point scale with subscales for the following cognitive domains: (1) visuospatial/executive, (2) confrontation naming, (3) attention, (4) language, (5) abstraction, (6) delayed recall, and (7) orientation. 5. Language was assessed as part of the MoCA using Repetition of 2 phrases and Letter Fluency 6. Attention was assessed in the MoCA using Digit Span, Letter Tapping and Serial Subtraction Depression was assessed in both comparison and People with Dementia (PwD) OAs, but using different instruments. 7. Depressive symptoms in the comparison group - The Center for Epidemiological Studies Depression scale (CESD) short form was used with Normal OAs (comparison group) only. It consisted of 11 items and higher scores indicated more depression symptoms in the past week. 8. Depression symptoms in the PwD OA - The Structured Clinical Interview-Depression (SCID) instrument assessed the depressive symptoms of the person with dementia based on the Informant's observations. The SCID assessed the presence of nine symptoms during the preceding two weeks. 9. Functional status of the OA - The Functional Activity Questionnaire (FAQ) was a short form assessment of eleven Activities of Daily Living (ADLs) and Instrumental ADLs (IADLs). Each item was scored on a 4 point scale. 10. Health Conditions - The Informant reported on the presence or absence of 13 health conditions prevalent in older adults. 11. Medications list - Included a checklist of 27 categories of drugs that may improve or interfere with memory: e.g., cholinergics, antihistamines). Two scales included medications that enhance memory and those that interfere with memory. 12. Demographic information collected included age, sex, ethnicity (Hispanic or not), race (census categories), marital status (five categories and other, simplified to married and unmarried), household income (seven ordinal categories from less than $15,00 to $100,000 or above), employment status (six categories and "other") and number of years of education. 13. Informant Relationship - Items included relationship (e.g., spouse, son, daughter, etc.), how often seen (6 categories from daily to once a month), how long known (six categories from less than six months to more than 10 years), co-residence (yes or no) and 2 questions (optional for comparison group OAs) about a caregiving (how long, how many hours per week). The following variables were assessed in the Informant interview, but were not statistically controlled. Those that are not further described were measured as they were in the OAs. 14. Adequate Vision 15. Adequate Hearing 16. Demographic information 17. Self-rated health was assessed using the first item from The Medical Outcomes Study (SF-12). The item response is a 5-point Likert scale (from excellent to poor) valued proportionately from 0 to 100. Higher scores indicated better self rated health. Independent Variables The following independent variables were assessed in the PwD or OA case participant. 1. Confabulation was assessed using a version of the Provoked Confabulation Test. The RA read a story and showed illustrations while reading. The narrative was immediately followed by twenty questions about the story. Some of the questions required a yes or no response and these measured recognition (rather than recall). The overall test was a measure of episodic memory, but there were subscales for assessing whether types of incorrect responses indicated confabulation. Some questions asked for information that was not provided in the narrative or pictures (e.g., What was the woman's name?) and therefore the correct answer was "I don't know." These questions comprised the provoked confabulation subscale. 2. Awareness was assessed using Guidelines for Rating of Awareness Cognitive Deficits modified for the research setting. This consisted of a hierarchical interview with the questions starting out very general (Do you know why we wanted you to take part in this study?). The interview concluded when the OA revealed an awareness of memory or other cognitive impairment. Up to six increasingly probing questions could be asked (#6=Did your doctor give you a diagnosis related to memory problems?). 3. Number of details given for life event memories (e.g., Can you tell me more about that, please?). 4. Ability to repeat emotional memories after a delay follow-up questions at the end of the assessment. 5. Proportion of memories of positive valence 6. Proportion of memories of negative valence Two more interview variables were derived from the GLE/structured interview which began by asking the OA to recall a life event memory without any category or specific cues, and progressed to elicit memories cued by categories of life events that happen to older adults. 7. Proportion of memories from recall 8. Proportion of memories from cued recognition by category Two hypothesized independent variables were assessed in the Informant of the PwD dyad using two widely used and validated instruments for Informant assessment of PwD. 9. Disease Stage for the PwD OA was measured using the Dementia Severity Rating Scale (DSRS) by asking the Informant to evaluate eleven abilities (e.g., memory, judgment, speech) on Likert scales. Higher scores indicated more advanced disease stage. 10. Neuropsychiatric symptoms or behaviors were assessed using the Neuropsychiatric Inventory (NPI). Frequency and severity ratings of each of 13 symptom sets were multiplied and all were added to reach a single score. Higher values indicated more behavioral changes since the onset of dementia. Subscales for each of the 13 behaviors were converted to dichotomous variables for presence or not of the behavior.
description: ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection: Created variable labels and/or value labels.; Standardized missing values.; Checked for undocumented or out-of-range codes..
description: Presence of Common Scales: The data include information from the following scales: Geriatric Adverse Life Events Scale (GALES); Geriatric Life Events (GLE); The Three Phase Test, also called the Cahill Emotional Memory test; The Montreal Cognitive Assessment (MoCA); Clock Drawing Test; Letter Fluency; Digit Span; Letter Tapping; Serial Subtraction; Center for Epidemiological Studies Depression scale (CES-D); Structured Clinical Interview-Depression (SCID); Functional Activity Questionnaire (FAQ); The first item from The Medical Outcomes Study (SF-12); Provoked Confabulation Test; Guidelines for Rating of Awareness Cognitive Deficits; Dementia Severity Rating Scale (DSRS); Neuropsychiatric Inventory (NPI); Several Likert type scales were also used;
description: Response Rates: Not available.
description: Datasets: 
 
 DS1: Dataset
description: coded on-site observation, cognitive assessment test, face-to-face interview, mixed mode, paper and pencil interview (PAPI), on-site questionnaire
description: Residents of the state of California age 55 or greater with a diagnosis of mild to moderate dementia established through review of medical records and availability of an informant who was familiar with the patient's recent history. Smallest Geographic Unit: None
description: The study design is a cross-sectional, one-time assessment of a convenience sample of Older Adults (OAs) diagnosed with mild to moderate stage dementia and their Informants, as well as non-demented normal comparison OA participants and their Informants. Inclusion criteria for dementia participants was: (1) age 55 or greater, (2) a diagnosis of mild to moderate dementia established through review of medical records, and (3) availability of an Informant who was familiar with the patient's recent history. A normal comparison group of OAs and their Informants also participated. Venues for recruitment included participants in other research studies at the University of California, Irvine; families who contacted the local Alzheimer's Association chapter and clients of a senior health clinic, an adult day care facility and a participating senior center. Other resources included an online article in a local newspaper, an article in a newsletter for a senior education program and a broadcast email to University of California, Irvine employees. People diagnosed with Alzheimer's disease and related dementias (PwD) who were interested in participating in the study were asked to provide a release of recent medical records in order to confirm the diagnosis of a dementing illness. All Informants and comparison participants were screened by telephone, using a modified version of the Short Portable Mental Status Questionnaire (SPMSQ) to assess for the absence of cognitive impairment. Based on the researcher's experience in other studies, the sensitivity of the SPMSQ as a screening tool with older adults was improved by adding a three word short delay memory test, as in the Folstein Mini-Mental State Exam. A participant failed the cognitive screening if unable to repeat (register) 3 words or recall at least 2 words, or if 3 or more SPMSQ items were incorrect. If all criteria were met, the study assessment itself was scheduled and conducted in participants' homes at a later date. At that time, dementia patients were assessed for their capacity to consent to research and a self-certified surrogate was approached when decision-making capacity was not present, as required by the state of California. Decision-making capacity was assessed using a tool modeled after the MacArthur Competence Assessment Tool for Clinical Research. Each dyad consented in writing prior to the initiation of data collection.