Kate de Medeiros

“Shall I Compare Thee to a Dose of Donepezil?”: Cultural Arts Interventions in Dementia Care Research

The cultural arts have gained attention for their potential to generate social and behavioral changes in people with dementia. Although individual cultural arts intervention studies have reported positive outcomes, most are excluded from systematic reviews because of methodological weakness. We reviewed findings from 27 systematic and integrative reviews of pharmacologic, psychosocial, and cultural arts interventions to identify promising outcomes as well as limitations in current approaches. Although results point to the potential success of interventions tailored to individual interests, most focused on limited measurements of individual change. In moving forward, cultural arts intervention research must not be limited to the tools of the clinical trial model. Instead, researchers should carefully rethink what constitutes rigorous and effective research for interventions aimed at creating a meaningful personal experience for the participant rather than measurable change.

Improper Sexual Behaviors in Elders with Dementia Living in Residential Care

Objectives: There exists little information describing the spectrum and correlations of sexual behaviors manifested by elders with dementia living in residential care. Methods: Data are from a retrospective case-control study of improper sexual behaviors manifested by 165 elders with dementia living in a residential care facility in 2005. Results: Three types of behavior were evident: (1) intimacy-seeking, (2) disinhibited, and (3) nonsexual. Intimacy-seeking behaviors were associated with Alzheimer disease, and disinhibited behaviors with non-Alzheimer dementias. Behavior type was associated with dementia severity. Conclusions: Delineation of the types of improper sexual behaviors occurring in dementia has practical implications for practice and research. Progress will require prospective studies with systematic ascertainment of cases and variables, and recruitment from large sampling frames.

Friendships among people with dementia in long-term care

Despite the growing literature on social interactions in dementia settings, few studies have investigated ‘friendships’ in people with dementia living in long-term care. ‘Social interactions’ describe communicating, verbally and/or non-verbally, at least once with another person while ‘friendship’ suggests a deeper, more meaningful connection that may include reciprocity, intimacy, and shared trust. During a 6-month, mixed-methods study, we investigated friendships among 31 assisted living residents with moderate to advanced dementia. Results revealed no correlation between test scores or demographic characteristics (except gender) and friendship dyads identified by staff. Staffs’ perceptions of residents’ friendships were not supported through our observations. We did observe friendships among residents characterized by voluntary participation and accommodation in conversation, and recognition of the uniqueness of the other. Findings suggest staff perceptions of residents’ friendships are not sufficient and that more research on this topic is needed.

‘Oh he was forgettable’: Construction of self identity through use of communicative coping behaviors in the discourse of persons with cognitive impairment

Communication involving persons with cognitive impairment (CI) associated memory issues requires particular attention in the clinical setting due to the sensitive and often difficult institutional work that must take place between the patient and his or her physician. An individual with CI is often tested for memory issues during the office visit, generating a potentially face-threatening situation. Said individual may attempt to preserve positive identity or ‘save face’ (Gumperz, 1982) by using communicative coping behaviors (CCBs). This study characterizes the use of CCBs (e.g., accounts and humor) by persons with CI in clinical interviews and provides important insight on how to improve doctor—patient communication involving people with CI. In order to describe and compare CCBs used by persons with cognitive impairment, and those used by cognitively normal individuals, verbatim, in-office transcripts from both groups were analyzed. Results showed that participants with CI used more memory accounts than cognitively normal individuals and similar amounts of humor in order to save face and construct a normal identity. These data help to inform doctors and caregivers regarding the ways in which persons with CI construct and preserve a positive sense of self-identity through communication.

The Brazilian version of the Neuropsychiatric Inventory-Clinician rating scale (NPI-C): reliability and validity in dementia

BACKGROUND Patients with dementia may be unable to describe their symptoms, and caregivers frequently suffer emotional burden that can interfere with judgment of the patients behavior. The Neuropsychiatric Inventory-Clinician rating scale (NPI-C) was therefore developed as a comprehensive and versatile instrument to assess and accurately measure neuropsychiatric symptoms (NPS) in dementia, thereby using information from caregiver and patient interviews, and any other relevant available data. The present study is a follow-up to the original, cross-national NPI-C validation, evaluating the reliability and concurrent validity of the NPI-C in quantifying psychopathological symptoms in dementia in a large Brazilian cohort. METHODS Two blinded raters evaluated 312 participants (156 patient-knowledgeable informant dyads) using the NPI-C for a total of 624 observations in five Brazilian centers. Inter-rater reliability was determined through intraclass correlation coefficients for the NPI-C domains and the traditional NPI. Convergent validity included correlations of specific domains of the NPI-C with the Brief Psychiatric Rating Scale (BPRS), the Cohen-Mansfield Agitation Index (CMAI), the Cornell Scale for Depression in Dementia (CSDD), and the Apathy Inventory (AI). RESULTS Inter-rater reliability was strong for all NPI-C domains. There were high correlations between NPI-C/delusions and BPRS, NPI-C/apathy-indifference with the AI, NPI-C/depression-dysphoria with the CSDD, NPI-C/agitation with the CMAI, and NPI-C/aggression with the CMAI. There was moderate correlation between the NPI-C/aberrant vocalizations and CMAI and the NPI-C/hallucinations with the BPRS. CONCLUSION The NPI-C is a comprehensive tool that provides accurate measurement of NPS in dementia with high concurrent validity and inter-rater reliability in the Brazilian setting. In addition to universal assessment, the NPI-C can be completed by individual domains.

The discourse of friendship: Mediators of communication among dementia residents in long-term care

One the most difficult challenges experienced by people with dementia and their caregivers is their communication. The ability to communicate is essential to creating and maintaining social relationships. Many individuals who suffer from dementia experience increased agitation and diminished social interaction in the long-term care living setting. This paper demonstrates how, through language, they construct social relationships. As part of The Friendship Study, which is an ethnographic observation of persons with dementia living in a long-term care setting, we analyzed transcripts from video- and audio-taped data and performed a discourse analysis of conversations to show how persons with dementia who live in a long-term care setting use language to create friendships. These analyses show that friendships are constructed using concepts such as conversational objects, discourse deixis, indexicality, and alignment among speakers.

Nested social groups within the social environment of a dementia care assisted living setting

The social environments of people with dementia are complex and still not fully understood. Investigating how residents in a dementia care setting navigate and participate within social groups is critical as the therapeutic benefits of social engagement are unequivocal. An ethnographic study of social environments within a dementia care residence revealed that there is active socialization and even strong and lasting friendships formed between people with dementia. Many of these relationships were observed to be a part of groups, ‘nested’ within the larger social environment. These ‘nested social groups’ had unique dynamics and their structuring was often influenced by outside factors (e.g. physical environment and staff preferences). The existence of these groups has implications for the experiences and quality of life of the residents in long-term care. Nested social groups will be defined and their function within the social environment will be discussed.

Shadow stories in oral interviews: Narrative care through careful listening.

In most narrative approaches to understanding old age, the primary object of interest is the told story. However, what is often overlooked in narrative research are the untold stories--the silences, gaps, and omissions that form a type of shadow story or a story that lies just below the surface of what is said or written. This paper presents an illustrative case example of Constance to demonstrate how careful listening can help uncover hidden stories in an interview. In this case, Constance mentions two people (her brother and husband) as being important in her life yet omits them from the majority of her interview. The interviewer is able to uncover a hidden story with regard to her brother, learning important details about their relationship that would have otherwise gone unspoken. Overall, findings point to the importance of untold stories both in terms of content and as a way to empower the speaker to address topics that he or she may have otherwise thought were not of interest to the interviewer.

Caregiver report versus clinician impression: disagreements in rating neuropsychiatric symptoms in Alzheimer's disease patients

The measurement of neuropsychiatric symptoms (NPS) in dementia is often based on caregiver report. Challenges associated with providing care may bias the caregivers recognition and reporting of symptoms. Given potential problems associated with caregiver report, clinicians may improve measurement by drawing from a wider array of available data and by applying clinical judgment.

Generativity in Elderly Oblate Sisters of Providence

PURPOSE OF THE STUDY We explored how generativity and well-being merged in a group of childless older women: African and Hispanic Roman Catholic Religious Sisters, linking two minority identity characteristics. DESIGN AND METHODS We qualitatively interviewed 8 Oblate Sisters of Providence (OSP), by providing a framework for examining the range of the womens generativity-cultural spheres in which generativity is rooted and outlets for generativity. RESULTS Early negative experiences, such as fleeing despotism in Haiti and Cuba and racism within the Catholic Church, occurred alongside positive experiences-families who stressed education, and Caucasian Religious who taught children of color. This became a foundation for the Sisters generative commitment. IMPLICATIONS Findings highlight that research gains from a phenomenological understanding of how religious faith promotes generative cognitions and emotions. Findings also reveal that the experiences of a subculture in society-African-American elderly women religious-add to theories and definitions of generativity.