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To develop an operational definition of and typologies for episodes of lucidity (EL), we conducted a cross-sectional study of former/current family caregivers from UsAgainstAlzheimer’s A_LIST (N = 538). More than 60% of caregivers (n = 294, 62%) reported witnessing EL with their care recipient over the course of their dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted

People with late-stage Alzheimer’s disease and related dementias (ADRD) who are assumed to have lost coherent cognitive capacity may exhibit unexpected episodes of spontaneous, meaningful, and relevant communication or behavior. Most reports of paradoxical lucidity or “episodes of lucidity” (EL) are anecdotal or case studies. Given the transient nature and lack of scientific explanation of the phenomenon, EL is under-investigated and poorly understood.To develop an operational definition of and typologies for EL, we conducted a pilot study of former and current family caregivers from UsAgainstAlzheimer’s A-LIST® (N = 480). Over sixty percent of caregivers (n = 294, 61%) reported witnessing at least one EL with their care recipient over the course of dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted M = 4.1; range = 1–5), but also expressed desire to know why/when EL occurs and how to respond to it.We plan to use these data to refine definitions and typologies to incorporate into a prospective, demographically diverse survey to family caregivers to assess predictors of EL and linking EL to caregiver well-being and bereavement response. Precise and robust operationalizations of EL will allow future research to assess if EL has different effects on ADRD prognosis or alters how family members understand, manage and adapt to a PLWD’s dementia progression.

Barriers to the early detection of mild cognitive impairment (MCI) and dementia can delay diagnosis and treatment. myMemCheck® was developed as a rapid free cognitive self-assessment tool that can be completed in the practice setting or at home to identify older adults that would benefit from a more comprehensive cognitive evaluation for MCI and dementia. Two prospective cross-sectional studies (N = 59; N = 357) were conducted to examine the psychometric properties and clinical utility of myMemCheck®. myMemCheck® evidenced adequate reliability (test-retest, r = 0.67) and strong construct validity (η2 = 0.29, discriminating normal, MCI, dementia). Receiver operating characteristic analysis evidenced an optional myMemCheck® cut score for identifying older adults with MCI or dementia (sensitivity = 0.80, specificity = 0.67, positive predictive value = 0.91, negative predictive value = 0.43). myMemCheck® explained 25% of cognitive status beyond basic patient information. We provide specific suggestions for integrating myMemCheck® into practice to optimize workflow. Study results are further interpreted in the context of two national online surveys (healthcare professionals, N = 181; consumers, N = 1740). Healthcare professionals widely agreed on the need (94%) and importance (86%) of cognitive self-assessments. Public demand for cognitive self-assessment was confirmed by consumers who trialed myMemCheck® as part of their survey participation—86% agreed on the need for a tool like myMemCheck®. Mixed methods findings suggest that myMemCheck® could fast- track the diagnostic process, facilitate appropriate referrals for cognitive and neuropsychological evaluation, reduce assessment burden in healthcare, and prevent negative outcomes associated with undetected cognitive impairment.

Additional file 1. Supplemental Appendix

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

Purpose The aim of this study was to develop and validate case-finding algorithms for granulomatosis with polyangiitis (Wegener's, GPA), microscopic polyangiitis (MPA), and eosinophilic GPA (Churg–Strauss, EGPA). Methods Two hundred fifty patients per disease were randomly selected from two large healthcare systems using the International Classification of Diseases version 9 (ICD9) codes for GPA/EGPA (446.4) and MPA (446.0). Sixteen case-finding algorithms were constructed using a combination of ICD9 code, encounter type (inpatient or outpatient), physician specialty, use of immunosuppressive medications, and the anti-neutrophil cytoplasmic antibody type. Algorithms with the highest average positive predictive value (PPV) were validated in a third healthcare system. Results An algorithm excluding patients with eosinophilia or asthma and including the encounter type and physician specialty had the highest PPV for GPA (92.4%). An algorithm including patients with eosinophilia and asthma and the physician specialty had the highest PPV for EGPA (100%). An algorithm including patients with one of the diagnoses (alveolar hemorrhage, interstitial lung disease, glomerulonephritis, and acute or chronic kidney disease), encounter type, physician specialty, and immunosuppressive medications had the highest PPV for MPA (76.2%). When validated in a third healthcare system, these algorithms had high PPV (85.9% for GPA, 85.7% for EGPA, and 61.5% for MPA). Adding the anti-neutrophil cytoplasmic antibody type increased the PPV to 94.4%, 100%, and 81.2% for GPA, EGPA, and MPA, respectively. Conclusion Case-finding algorithms accurately identify patients with GPA, EGPA, and MPA in administrative databases. These algorithms can be used to assemble population-based cohorts and facilitate future research in epidemiology, drug safety, and comparative effectiveness. Copyright © 2016 John Wiley & Sons, Ltd.

Background:This study aimed to describe the person-centered experience of symptoms and impact of dementia-related psychosis (DRP) from a patient and care partner (CP) perspective.Methods:This observational, non-interventional, prospective study collected patient experience data to understand the impact of DRP in persons with various dementia subtypes. Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of all-cause dementia with psychotic symptoms, recruited through physician referrals. The quantitative online survey was completed by persons with self-reported DRP or their CP recruited by advocacy groups: UsAgainstAlzheimer’s and the Lewy Body Dementia Association. CP burden was beyond the scope of this study.Results:Sixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms of DRP were visual hallucinations (88%), auditory hallucinations (69%), and persecutory delusions (56%). Participants described an impact of DRP on activities of daily living (75%), sleep (63%), family life (56%), and safety concerns (56%).The quantitative portion was completed by 212 participants (26 patients, 186 CP). DRP symptoms most frequently reported by patients were visual hallucinations (89%), auditory hallucinations (54%), and distortion of senses (54%); those reported by CP were paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%). For patients with recent visual hallucinations, 61% of patients and 70% of CP reported experiencing this symptom on a weekly basis. When asked to rank the impact on the patient’s life, patients reported that visual hallucinations were the most impactful symptom whereas CP reported paranoid delusions/false beliefs as most impactful, followed by visual hallucinations. Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Most patients (>40%) were not receiving medications for DRP.Conclusions:Persons with DRP experience hallucinations and delusions that have a substantial impact on their lives. Here, patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.Study Sponsored By: ACADIA Pharmaceuticals Inc.DisclosuresTF is a consultant with Frangiosa & Associates, LLC.VB and AT have no relevant financial relationships to disclose.TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

Background:We aimed to describe current treatment patterns and unmet needs of persons with DRP from a patient and care partner (CP) perspective.Methods:This observational, non-interventional, prospective study used a mixed-methods approach with qualitative interviews and a quantitative online survey. Persons with DRP and CP of persons with DRP reported the effectiveness of current treatments using a visual analog scale (VAS) of 0 (“not at all well”) to 5 (“extremely well”) and ranked benefits of an ideal treatment. CP burden was outside the scope of this study.Results:The qualitative interview was completed by 1 patient and 15 CP. Current treatments included atypical antipsychotics, antidepressants, anxiolytics, and benzodiazepines. Participants commonly indicated a need to improve patients’ ability to know what is real vs not real.The online survey was completed by 26 patients and 186 CP on behalf of patients under their care. Common treatments used included atypical antipsychotics (27% of patients, 41% of CP) and psychological/ behavioral therapy (23% of patients, 8% of CP). Many participants reported no current treatment (42% of patients, 42% of CP). Participants reported that current treatment methods were less than moderately helpful in treating patients’ most impactful symptoms with a median VAS score of 2.0/5 reported by patients and CP (mean VAS score [standard deviation] = 2.33 [1.0] for patients [n=15], mean [standard deviation] VAS score = 2.4 [1.3] for CP [n=104]). Discontinuation of a treatment was reported by 11 patients and 115 CP, most commonly due to a side effect (27% of patients, 31% of CP), doctor’s recommendation (27% of patients, 14% of CP), or lack of symptom improvement (9% of patients, 28% of CP). Participants ranked the ability to distinguish what is real vs not real (35% of patients, 49% of CP) and overall symptom improvement (42% of patients, 23% of CP) as the most important benefits of an ideal treatment.Conclusions:Patients and CPs reported either not taking any DRP treatments or that current treatments were associated with side effects along with limited efficacy. There is an unmet need for safe and effective treatments for DRP.Study Sponsored By:ACADIA Pharmaceuticals Inc.DisclosuresTF is a consultant with Frangiosa & Associates, LLC.VB and AT have no relevant financial relationships to disclose.TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

Health care providers recognize that family can directly and indirectly affect adult patient health and reduce costs to healthcare systems. However, there is no consensus on the best practices for integrating caregivers into the healthcare experience. Research on how healthcare providers can integrate family abilities and values into patient plans of care for disease management, rehabilitation, or symptom control lags far behind the research on patient-centered care. Research on family engagement at critical points of patient care, such as hospital discharge or end-of-life decision making have been instrumental in highlighting opportunities to engage families to improve quality of care. Far less research has been done on integrating family values, capabilities, and capacity to care throughout a patient’s chronic disease continuum, leaving healthcare providers with few evidence-based, feasible or acceptable strategies they can offer to caregivers to improve patient outcomes and maintain their caregiver health. Using qualitative data from six focus groups with family caregivers of people with dementia and one focus group of people living with mild cognitive impairment, we identified potential “best practices” on engaging family caregivers in healthcare. Caregivers and patients reported clinical best practices would include coordination of services, personalized care, practices that enabled caregivers to provide optimal care (early identification of caregivers and routine assessment of caregiver health and capacity to care), and compassion and respect for the caregiver role and expertise. Data have been used to inform a new quantitative assessment to evaluate clinical best practices for engaging family caregivers.

Este trabalho é direcionado ao estudo dos efeitos da radiação UV sobre amostras de poliestireno (PS) e de copolímeros de estireno com proporções variáveis de 2-trimetilsililóxi-1,3-butadieno (TSB, I), 2-metóxi-1,3-butadieno (MEB, II) e 2-etóxi-1,3-butadieno (ETB, III), em solução aerada, visando principalmente à amplificação da degradação ambiental do PS quando exposto a condições de intemperismo natural. (Ver no arquivo em PDF). Os polímeros foram sintetizados via polimerização radicalar em solução, resultando em uma massa molar ponderai média (Mw) de cerca de 30,0 kg/mol para o homo e copolímeros. Estes produtos, após serem submetidos a um processo de hidrólise na presença de fluoreto de tetrabutilamônio (série TSB) ou HCI aquoso (séries MEB e ETB), resultaram em PS contendo grupos carbonila na cadeia principal sendo, a seguir, isolados e caracterizados por meio de técnicas analíticas como espectroscopia de infravermelho (IR), análise elementar, cromatografia de exclusão por tamanho (SEC), espalhamento de luz estático dependente do tempo (TDSLS), análise térmica (TG e DSC) e microscopia eletrônica de varredura (MEV). As soluções poliméricas foram irradiadas com lâmpada de mercúrio de baixa pressão (99,5% de emissão a 254 nm), na presença de ar e à temperatura ambiente, por um período de dez horas. As alterações sofridas pelos polímeros foram acompanhadas por meio de medidas de IR, TDSLS e SEC. Os espectros no infravermelho mostraram um aumento contínuo da intensidade de algumas bandas: na região entre 3800 - 3000 cm-1, houve um alargamento das bandas que pode ser atribuído à formação de grupos hidroxila e/ou hidroperóxido; na região de 1900 - 1500 cm-1, observou-se o aparecimento de um ombro em 1712 cm-1, que pode ser atribuído à formação de grupos cetona e aldeído como funções terminais na cadeia do polímero e, na região entre 1500 - 1000 cm-1, o alargamento das bandas foi atribuído à formação de grupos anidrido. Os estudos realizados por TDSLS revelaram claramente que os copolímeros degradam com mais rapidez que o PS puro, e as taxas de degradação aumentam proporcionalmente ao aumento no teor de carbonilas incorporadas ao polímero. Tal observação tem suporte nas massas molares ponderais médias obtidas via SEC (Mw) dos fragmentos resultantes da fotólise, com valores cada vez menores com o aumento dos efeitos da fotodegradação, iniciando com cerca de 34,0 kg/mol (TSB5), por exemplo, e decrescendo a valores de Mw tão baixos quanto 4,8 kg/mol (TSB15). Para finalizar, tentou-se verificar o comportamento dos polímeros quando expostos a condições reais de utilização, submetendo-se corpos de prova a um envelhecimento acelerado em câmara de intemperismo artificial e avaliando seu comportamento mecânico. Os resultados mostraram que, para homo e copolímeros, houve uma redução na resistência à tração com o aumento do tempo de exposição (0 a 600 horas), sendo este efeito muito mais acentuado para os copolímeros. This work was directed to the study of the UV radiation effects upon samples of polystyrene (PS) and copolymers of styrene with different fractions of 2-trimethylsililoxy-1,3-butadiene (TSB, I), 2-methoxy-1 ,3-butadiene (MEB, II) and 2-ethoxy-1,3-butadiene (ETB, III), in normally aerated solution, aiming at the optimization of the PS degradation when exposed to weathering conditions. (See in the PDF file). The polymers were prepared by free-radical polymerization in solution, resulting in average molecular weight (Mw) of about 30.0 kg/mol for the homo and copolymers. The resulting polymers were submitted to hydrolysis in the presence of tetrabutylamonium fluoride (TSB series) or aqueous HCI (MEB and ETB series), resulting in PS containing carbonyls inserted in its backbone. The polymers were isolated and characterized by infrared spectroscopy (IR), elemental analysis, size exclusion chromatography (SEC), time dependent static light scattering (TDSLS), thermal analysis (TG and DSC) and scanning electron microscopy (SEM). The polymeric solutions were irradiated with a low pressure mercury lamp (99.5% emission at 254 nm), in the presence of air at room temperature, for a period of 10 hours. The polymer changes were followed by IR, TDSLS and SEC. The infrared spectra showed a continuous increase in the intensity of some bands: the broad band in the region of 3800 - 3000 cm-1 was assigned to the formation of hydroxides or hydroperoxides groups; the band at 1900 - 1500 cm-1 with a shoulder at 1712 cm-1 can be assigned to ketones or aldehydes, which appear as chain termination groups and the band at 1500 - 1000 cm-1 was attributed to the formation of anhydrides. The TDSLS studies clearly showed that the copolymers degradated much faster than the pure PS, and the degradation rates were directly related to the increase in the TSB, MEB and ETB contents of the polymer. This observation is supported by the decreasing molecular weight values obtained by SEC (Mw) for the resulting fragments from photolysis, when the carbonylic content of the polymer increased, starting at around 34.0 kg/mol (TSB5), for instance, decreasing to Mw values as low as 4.8 kg/mol (TSB15). Finally, we tried to found out the polymer behavior when exposed to the real outdoor conditions of use, by submitting samples to an accelerated aging process in a Weather-o-Meter chamber and evaluating its mechanical behavior afterwards. The results showed that for both, homo and copolymers, there was a reduction in the tensile strength with increasing in the exposition time (0 to 600 hours). This behavior is much stronger in the copolymers.

The objectives of this study were to perform bioelectrical impedance analysis before and after heart transplantation with comparison to healthy subjects. Eight patients (7 men, 1 woman) before (day 0) and after transplantation (day 3, 7, 12, 15, and 180) and 24 healthy controls, matched for sex, age, and body mass were studied. Data collection included bioelectrical impedance analysis (resistance, reactance, and estimates of body water), clinical, and laboratory measurements. Compared with controls, patients had at baseline significantly higher reactance, not significantly different resistance, body weight, total body water, and intra- to extracellular water ratio. After surgery, for reactance, there was an acute decrease followed by a slow, progressive increase up to normal level by day 15. Resistance and body weight did not significantly change; the intra- to extracellular water ratio significantly decreased with stable total body water. Changes in reactance are the main effects induced on bioelectrical impedance by heart transplantation. Acutely, there is a large decrease which likely reflects changes both in water distribution and in cell membrane function. The late changes more likely reflect the shift of body water from the extra- to the intracellular space with stable total body water.

This study investigates the impact of learning Standard Italian among Italian Australian dialect speakers. More specifically, it examines the Italian language learning experiences of bilingual Italian Australians who grew up speaking an Italian dialect at home and studied Italian in formal contexts. It also investigates the possible effect that formal Italian language instruction, and other influences, have had on their current language use. Despite the fact that in Australia the Italian language has been taught in various programs over many years and to a large number of learners who are Italian dialect speakers, little research has been conducted in this area. This study is informed by both social constructionist and phenomenological frameworks and draws on research in the areas of sociolinguistics and second language learning and instruction. The research was conducted in Adelaide, South Australia, on a sample of ten Italian Australians who were brought up in Australia speaking an Italian dialect, using a mixed method approach. Pre-interview questionnaires and semi structured interviews were used to obtain data which was analysed through a thematic approach. From this, themes emerged in the areas of language learning experiences and the participants’ perceived impact that such experiences, and other influences, have had on their language use.The findings show a range of learning experiences among participants. While a small number identify areas where their Italian instruction has had an impact, most do not believe in such an impact on their language use. All perceive that other influences, such as family networks, have had a more significant impact.