The vast majority of persons with Alzheimer’s disease and related dementias live at home and are cared for by families or close friends/neighbors. An essential element to daily care decisions is the caregiver’s appraisal of function in the family member with dementia. This dissertation comprises three separate papers exploring caregiver appraisal of functional capacity, using secondary data from a study conducted at Thomas Jefferson University of 88 patient-caregiver dyads, funded by the Alzheimer’s Association (L. Gitlin, PhD, principal investigator; Grant # IIRG-07-28686). The caregivers were primarily female (88.6%), white (77.3%), and spouses (55.7%), with a mean age of 65.8. All caregivers had a high school education or higher and had provided care from 6 months to 22 years. The majority of the participants with dementia were female (52.3%) and white (76.1) with a mean age of 81.7. Their scores on the MMSE ranged from 10 to 28 (M = 17.7, SD = 4.6, N = 87). The first paper examined construct and interrater reliability of the Functional Capacity Card Sort (FCCS), a tool designed to measure subjective caregiver appraisal. Using spearman’s rank correlations the FCCS was found to be statistically associated with the Caregiver Assessment of Function and Upset scale (r = .43, p < 0.0001, N = 86) and not statistically associated with the Neuropsychiatric Inventory scale (r = -.14, p = .16, N = 86), supporting convergent and discriminant validity respectfully. Kendall’s coefficient of concordance revealed a strong agreement among caregivers in the ranking of the six cards of the FCCS, Kendall W (5, 72) = 0.83, p = .0001, supporting interrater reliability of the FCCS. The second and third paper demonstrated the utility of the FCCS in distinguishing three groups of caregivers based on their estimation of functional capacity in the person with dementia compared to a gold standard occupational therapy assessment. Fifty-two (61%) of the caregivers overestimated function, 19 (22%) caregivers underestimated function, and 15 (17%) were concordant with the standardized assessment. Further analysis explored personal and home environment factors in relation to caregiver appraisal. The Kruskal-Wallis test showed cognitive status in the person with dementia (H (2, N = 85) = 3.67, p = .16) and caregiver depressive symptoms (H (2, N = 86) = 1.35, p = .51) were not associated with the caregiver’s appraisal of functional capacity in the person with dementia. Linear regression and proportional odds logistic regression, adjusted for cognitive status in the person with dementia, did not reveal a relationship between caregiver appraisal and the number of observed home hazards [F (1, N = 86) = .01, p = .94] or the unmet needs reported by the caregiver [Wald χ2 (1, N = 86) = .95, p = .33], respectively. Linear regression showed a trend towards the hypothesis that caregiver concordant/underestimation of functional capacity have greater home adaptations compared to caregiver overestimation [F (1, N = 86) = 3.06, p = .08]. The papers in totality demonstrate the utility of the FCCS to assess caregiver appraisal and interpret level of estimation, which can guide the therapeutic approach and treatment plan by an occupational therapist or other health professional. Further understanding of caregiver appraisal and associated factors is critical to providing best practice in dementia care. Limitations and future directions for research are discussed.

Background: Alzheimer???s disease and related dementias (ADRD) are often improperly or under-diagnosed in primary care; yet, it is expected that community-based care will be an increasingly important source of support for ADRD patients. In Ontario, primary care has continued to expand its services to include health team models, such as family health teams (FHTs) to provide multidisciplinary collaborative care for patients. Within such teams, memory clinic teams have also been implemented, which are clinic days set up typically once or twice a month to provide interprofessional collaborative care specifically for ADRD patients by trained health care providers (HCPs). Objective: Little is known about the experience of HCPs who work in primary care memory clinic team settings to provide care for ADRD patients. This study explored these experiences. Specifically, questions were asked around the rewards, challenges and motivations with working in the memory clinic structure and providing support to ADRD patients. Methods: A phenomenological approach was used. One-on-one semi-structured interviews were completed with 12 interprofessional team members in two primary care memory clinic teams. Interviews were transcribed and analyzed using Colaizzi???s (1978) method of analysis. Results: Overall, seven subthemes were found which describe the HCP experience. The first two subthemes describe experiencing the journey with the patient and caregiver. HCPs want to support patients while maintaining the patient???s dignity. They also balance emotional dilemmas with responsibilities. The next two subthemes describe experiencing the journey with the team. HCPs feel valued and connected to their team members. The memory clinic structure offers unique care provider experiences. Lastly, three subthemes were found which describe the personal and professional rewards of the experience. HCPs found thrilling complexities within the patient population in the memory clinic and that working in the clinic they are able to experience ongoing learning opportunities. HCPs also described that the memory clinic offers personal and professional fulfillment. Discussion: HCPs described an overall positive experience working in the memory clinic to support ADRD patients. HCPs take pride in being able to support patients and caregivers. Knowing that they are making a difference and doing good work are motivations to continue to work with complex populations, such as ADRD patients. HCPs enjoy working in close proximity to one another, respect their team members, and enjoy learning from each other. Team members motivate each other to stay and work with the ADRD population in primary care memory clinics. HCPs reap many rewards associated with working in a ???tight-knit??? memory clinic team setting for ADRD patients. As the number of HCPs working in team settings continues to grow in Canada, it is important to look at the experiences of these teams to understand the rewards, challenges and motivations of team members. Conclusions: These findings provide more context in understanding how to motivate future HCPs to work with more complex populations such as ADRD patients. Future research should address the outcomes of these clinics by exploring patient and family caregiver experiences with specialized teams, as it is important to gain their experiences to enhance the care practices for these individuals.

As demências têm um impacto importante em saúde pública. O diagnóstico desta síndrome é essencialmente clínico. A seção A do Cambridge Examination for Mental Disorders of the Elderly revised version (CAMDEX-R) é uma entrevista estruturada com o paciente para o diagnóstico de demência, composta pela investigação do estado clínico atual e pregresso do paciente e sua história familiar. Realizar a adaptação para o Português e avaliar a confiabilidade teste-reteste e inter-aferidor da versão-final da seção A do CAMDEX-R. Adotou-se a abordagem universalista. Uma ampla revisão bibliográfica foi realizada inicialmente. Duas traduções do original em inglês para o português e duas retrotraduções para o inglês foram realizadas e, finalmente, após a análise independente das quatro versões e da original, a versão-síntese foi desenvolvida por uma tradutora juramentada. Foram realizados dois encontros com especialistas, com o objetivo de avaliar quais itens necessitavam de adaptações que iam além da equivalência semântica até então desenvolvida. Os vinte itens considerados mais difíceis foram discutidos com idosos da população-fonte através da técnica de grupos focais. Posteriormente, um grupo multidisciplinar de geriatria analisou esta versão, sob o foco do contexto sócio-cultural dos idosos brasileiros e elaborou a versão pré-teste. O pré-teste foi aplicado a trinta e cinco indivíduos, estimulados a comentar e a parafrasear as questões, com foco naquelas consideradas de maior dificuldade para adaptação. Os problemas identificados retornaram ao grupo de especialistas, que produziu a versão-final. Para a análise da confiabilidade, a versão-final foi aplicada a cento e sessenta pacientes atendidos no Serviço de Geriatria Prof. Mario A. Sayeg, da Policlínica Piquet Carneiro, da Universidade do Estado do Rio de Janeiro. Foi calculada a estatística kappa (k) para cinco sub-seções do instrumento, cujo diagnóstico foi definido através dos critérios do Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), da Associação Americana de Psiquiatria (APA, 1994). Nas questões relativas ao histórico médico passado, foi calculado o k item-a-item. A versão final brasileira foi elaborada visando manter as equivalências conceitual, de itens e semântica com o instrumento original. A confiabilidade inter-aferidor foi avaliada em cento e trinta entrevistas; e noventa e três indivíduos foram reentrevistados para a confiabilidade teste-reteste. A confiabilidade inter-aferidor foi quase perfeita nas sub-seções e nos itens individuais avaliados. A confiabilidade teste-reteste foi substancial em três sub-seções e moderada em duas delas. O Índice K foi quase perfeito ou substancial em 70% dos itens individuais do histórico médico passado. A versão brasileira da seção A do CAMDEX-R apresenta bons níveis de confiabilidade e foi considerada adequada para uso clínico. / Dementias cause an important impact in public health. The diagnosis of this syndrome is essentially clinical. The Cambridge Examination for Mental Disorders of the Elderly revised version (CAMDEX-R), Section A, is a structured interview with the patient for dementia diagnosis, composed by questions related to present state, past medical history and family history. To adapt cross-culturally and assess test-retest and inter-observer reliability of Section A of CAMDEX- R. An universalist approach was adopted. An extensive bibliographical review was carried out initially. Two translations of the original in English into Portuguese and two back translations into English were made and, finally, after analyses of the four independent versions and the original, a synthesis version was developed by a sworn translator. Two meetings with specialists on the theme subject were done, with the objective of evaluating which items needed adaptation. The twenty most difficult items were discussed with elders of the source population through the focal groups technique. Later, a multidisciplinary geriatric team analyzed the version, with focus on socio-cultural context of Brazilian elderly, and elaborated the pretest version. The pretest was applied to thirty-five individuals, who were asked to comment and paraphrase the questions, with focus on those with greater difficulty to adapt. The identified problems returned to the group of specialists, who elaborated the final version. For the reliability analysis, the final version was applied to one hundred and sixty patients attended at the Serviço de Geriatria Prof Mario A. Sayeg, Pedro Ernesto University Hospital. Kappa statistic (k) was calculated to five sub-sections of the instrument, whose diagnosis was defined through the standard of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), of the American Psychiatric Association (APA, 1994). The Kappa statistic was calculated for each item of the questions related to past history. The Brazilian final version was elaborated after modifications of the literal translation, aiming at keeping semantic equivalence to the original. The inter-observer reliability was assessed in one hundred and thirty interviews; and ninety and three individuals were re-interviewed to evaluate test-retest reliability. The inter-observer reliability was almost perfect in all sub-sections and each items assessed. The test-retest reliability was moderate or higher in the five sub-sections. Kappa statistic showed substantial or almost perfect agreement in 70% of all individual items of past history. The Brazilian version of CAMDEX-Rs Section A has good levels of reliability and was considered suitable for clinical use.

As demências têm um impacto importante em saúde pública. O diagnóstico desta síndrome é essencialmente clínico. A seção A do Cambridge Examination for Mental Disorders of the Elderly revised version (CAMDEX-R) é uma entrevista estruturada com o paciente para o diagnóstico de demência, composta pela investigação do estado clínico atual e pregresso do paciente e sua história familiar. Realizar a adaptação para o Português e avaliar a confiabilidade teste-reteste e inter-aferidor da versão-final da seção A do CAMDEX-R. Adotou-se a abordagem universalista. Uma ampla revisão bibliográfica foi realizada inicialmente. Duas traduções do original em inglês para o português e duas retrotraduções para o inglês foram realizadas e, finalmente, após a análise independente das quatro versões e da original, a versão-síntese foi desenvolvida por uma tradutora juramentada. Foram realizados dois encontros com especialistas, com o objetivo de avaliar quais itens necessitavam de adaptações que iam além da equivalência semântica até então desenvolvida. Os vinte itens considerados mais difíceis foram discutidos com idosos da população-fonte através da técnica de grupos focais. Posteriormente, um grupo multidisciplinar de geriatria analisou esta versão, sob o foco do contexto sócio-cultural dos idosos brasileiros e elaborou a versão pré-teste. O pré-teste foi aplicado a trinta e cinco indivíduos, estimulados a comentar e a parafrasear as questões, com foco naquelas consideradas de maior dificuldade para adaptação. Os problemas identificados retornaram ao grupo de especialistas, que produziu a versão-final. Para a análise da confiabilidade, a versão-final foi aplicada a cento e sessenta pacientes atendidos no Serviço de Geriatria Prof. Mario A. Sayeg, da Policlínica Piquet Carneiro, da Universidade do Estado do Rio de Janeiro. Foi calculada a estatística kappa (k) para cinco sub-seções do instrumento, cujo diagnóstico foi definido através dos critérios do Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), da Associação Americana de Psiquiatria (APA, 1994). Nas questões relativas ao histórico médico passado, foi calculado o k item-a-item. A versão final brasileira foi elaborada visando manter as equivalências conceitual, de itens e semântica com o instrumento original. A confiabilidade inter-aferidor foi avaliada em cento e trinta entrevistas; e noventa e três indivíduos foram reentrevistados para a confiabilidade teste-reteste. A confiabilidade inter-aferidor foi quase perfeita nas sub-seções e nos itens individuais avaliados. A confiabilidade teste-reteste foi substancial em três sub-seções e moderada em duas delas. O Índice K foi quase perfeito ou substancial em 70% dos itens individuais do histórico médico passado. A versão brasileira da seção A do CAMDEX-R apresenta bons níveis de confiabilidade e foi considerada adequada para uso clínico. / Dementias cause an important impact in public health. The diagnosis of this syndrome is essentially clinical. The Cambridge Examination for Mental Disorders of the Elderly revised version (CAMDEX-R), Section A, is a structured interview with the patient for dementia diagnosis, composed by questions related to present state, past medical history and family history. To adapt cross-culturally and assess test-retest and inter-observer reliability of Section A of CAMDEX- R. An universalist approach was adopted. An extensive bibliographical review was carried out initially. Two translations of the original in English into Portuguese and two back translations into English were made and, finally, after analyses of the four independent versions and the original, a synthesis version was developed by a sworn translator. Two meetings with specialists on the theme subject were done, with the objective of evaluating which items needed adaptation. The twenty most difficult items were discussed with elders of the source population through the focal groups technique. Later, a multidisciplinary geriatric team analyzed the version, with focus on socio-cultural context of Brazilian elderly, and elaborated the pretest version. The pretest was applied to thirty-five individuals, who were asked to comment and paraphrase the questions, with focus on those with greater difficulty to adapt. The identified problems returned to the group of specialists, who elaborated the final version. For the reliability analysis, the final version was applied to one hundred and sixty patients attended at the Serviço de Geriatria Prof Mario A. Sayeg, Pedro Ernesto University Hospital. Kappa statistic (k) was calculated to five sub-sections of the instrument, whose diagnosis was defined through the standard of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), of the American Psychiatric Association (APA, 1994). The Kappa statistic was calculated for each item of the questions related to past history. The Brazilian final version was elaborated after modifications of the literal translation, aiming at keeping semantic equivalence to the original. The inter-observer reliability was assessed in one hundred and thirty interviews; and ninety and three individuals were re-interviewed to evaluate test-retest reliability. The inter-observer reliability was almost perfect in all sub-sections and each items assessed. The test-retest reliability was moderate or higher in the five sub-sections. Kappa statistic showed substantial or almost perfect agreement in 70% of all individual items of past history. The Brazilian version of CAMDEX-Rs Section A has good levels of reliability and was considered suitable for clinical use.

Bakgrund Varje dag möter sjuksköterskor många individer i vården varför det är viktigt att varje individ får rätt vård utifrån deras behov, en personcentrerad vård. En utsatt grupp är personer med demenssjukdomar på grund av att deras sjukdom ofta leder till kommunikationshinder. Det är därför viktigt att sjuksköterskor har rätt utbildning inom både demenssjukdomar och personcentrerad vård. Alla ska få lika vård på lika villkor trots en nedsatt kognitiv förmåga. Syfte Syftet med litteraturöversikten var att beskriva sjuksköterskors erfarenheter av personcentrerad vård för personer med demenssjukdomar. Metod Litteraturöversikten består av 15 kvalitativa artiklar från olika länder, artiklarna har publicerats mellan år 2010–2019. Databaser som användes för att söka artiklarna var CINAHL och PubMed.  Resultat Resultatet presenteras i fyra huvudkategorier med underkategorier. Dessa huvudkategorier belyser (1) sjuksköterskans upplevelse och erfarenheter av att lära känna personen med demenssjukdomar, (2) kommunikation med patienten, (3) tid för patienten och (4) vikten av utbildning för personalen inom personcentrerad vård och demenssjukdomar.  Slutsats Sjuksköterskor erfarenhet av utbildning inom demenssjukdomar och PCV, var att det är svårare att ta hand om personer med demenssjukdomar utan rätt utbildning. Enligt studier har det framkommit att nyexaminerade sjuksköterskors attityder är sämre mot personer med demenssjukdomar på grund av en minskad kompetens och osäkerhet om hur en person med demenssjukdom ska tas hand om. Vilket kan resultera i ett bristande bemötande från nyexaminerade sjuksköterskor samt att de undviker att skapa en dialog och en relation med personen med demenssjukdom. / Background Every day, nurses face many disruptions in care, why it is important that every individual gets the right care based on their needs, a person-centered care. One vulnerable group is people with dementia due to the fact that their illness usually leads to communication difficulties. Therefore, it is important that nurses have the right education in both dementia and personcentered care. Everyone should receive equal care on equal terms despite a reduced cognitive ability. Aim The purpose of the literature review was to describe nurses' experiences of person-centered care for people with dementia. Method The literature review consists of 15 qualitative articles from different countries, the articles were published between 2010–2019. Databases used to search the articles were CINAHL and PubMed. Result The result is presented in four major main themes with subcategories. These main categories highlights (1)the nurse's experience of getting to know the person with dementia, (2) communication with the patient, (3) time for the patient and (4) the importance of training for the staff in person-centered care and dementia. Conclusion Nurses experience with education in dementia and PCV, was that it is more difficult to care for people with dementia without the right education. According to studies, it has emerged that the attitudes of newly graduated nurses are inferior to people with dementia due to a reduced competence and uncertainty about how a person with dementia should be treated. This can result in a lack of response from newly graduated nurses and that they avoid creating a dialogue and relationship with the person with dementia.

<p dir="ltr">Neurodegenerative disease (ND) is a debilitating neurological disorder characterized by progressive loss of neurons in central nervous system (CNS), resulting in the decline in memory, cognition and motor functions. Alzheimer's disease (AD) and Parkinson's disease (PD) are the two of the most prevalent NDs, affecting millions of individuals in the United States. While hundreds of genetic risk factors have been identified in association with ND, familial cases with genetic origin only account for 10% and 15% of diagnosed AD and PD incidences, respectively. The majority of ND cases occur sporadically. Mounting evidence from epidemiology studies suggests that environmental stressors are one of the key ND associated risk factors where exposure to environmental stressors leads to the on-set of ND years or decades later. Little is known about the molecular mechanism facilitating the establishment of the persistent and potentially permanent neurotoxic state after exposures, particularly at a developmental stage. Hence, there is a pressing need in understanding the cellular machineries involved in establishment of a persistent neurotoxic state resulting from early-life exposure to environmental toxins. Subcellular compartments are crucial for the maintenance of neuronal homeostasis. Alterations in various subcellular compartments, including the nucleus, mitochondria, and lysosomes, have been commonly noted in cases of AD and PD; and are believed to play a crucial role in the establishment of a persistent neurotoxic state. The primary goal of my thesis is thus to uncover the dysregulation in multiple subcellular compartments and their contributes to ND pathogenesis induced by early-in-life exposure to environmental stressors, including atrazine (ATZ), per-and polyfluoroalkyl substances (PFAS), and neurofibrillary tangles.</p><p dir="ltr">I started by developing live-cell compatible tools to track cellular and sub-cellular changes. Mitochondria DNA methylation is of particular interest, due to its potential regulatory role in the expression of electron transport chain (ETC) subunits and thus mitochondrial activity. Thus, I started expanding the mitochondria probe tool set by designing a novel probe targeting methylated CpGs of mitochondrial DNA (mtDNA). We demonstrated the capability of our probe to reveal spatial distribution of methylated mtDNA and capture mtDNA methylation change at single cell level. Combined with our previously developed probe for nuclear DNA methylation, we monitored mtDNA and nuclear DNA methylation simultaneously on the single-cell level where unsynchronized dynamics of DNA methylation from nucleus and mitochondria were discovered.</p><p dir="ltr">Our tool offers a unique opportunity to understand epigenetic regulation of mtDNA and its dynamic response to microenvironment and cellular changes. Later, I further extended these efforts to develop in situ probes for tracking the formation of tau aggregates based on fluorescence resonance energy transfer (FRET); and demonstrated the superior performance of our engineered probes compared to the current state-of-the-art.</p><p dir="ltr">I explored two neuronal culture systems, namely SH-SY5Y- and human induced pluripotent stem cell (hiPSC)-derived neurons; and their feasibility in studying neurotoxic effects of developmental exposure to environmental stressors. Specifically, I used SH-SY5Y derived neuron-like cells to study the impact of pre-differentiation exposure to PFOA, abundant chemical in environment due to its historical uses in consumer products and industrial applications. hiPSC-derived neurons were used to study the effects of developmental exposure to ATZ. Both studies identified cellular changes, for example neurite morphology and expression of enzyme catalyzing the production of neurotransmitters, that last after completion of differentiation. We also identified changes of pathogenic markers aligning with increased PD risks associated with developmental PFOA and ATZ exposure. Compared to SH-SY5Y, hiPSC-derived neurons were more advantageous due to their ability to recapitulate neuronal activity and pathogenic changes related to ND, and thus were used in my follow-up studies.</p><p dir="ltr">I adopted hiPSC derived neuron model to study the molecular mechanism of ND using established ND etiology. Patients with neurodegenerative disorders (ND) exhibit varying levels and temporal patterns of aggregated β-amyloid (Aβ) and tau protein. We exposed neurons derived from hiPSC with preformed fibrils (PFFs) of Aβ, tau and Aβ+tau, respectively. These treatments result in significant alterations in neurite network morphology, nuclear morphology, chromatin compactness and synaptic density. Interestingly, Aβ and tau fibrils seem to have opposite effects on mitochondrial membrane potential on neurites. Increased quantity of lysosomes was found in neurons treated with Aβ, tau and Aβ+tau, while decrease of lysosomal acidity was only observed in neurons treated with Aβ and tau sequentially. Collectively, our data suggests the potential synergy between Aβ and tau in establishing a neurotoxic state.</p><p dir="ltr">In summary, my thesis work has developed enabling engineering tools to monitor cellular and subcellular changes in neurons; identified hiPSC-derived neurons as a promising platform for studying developmental neurotoxicity; and paved the way towards understanding multi-etiology and its molecular underpinning for ND.</p>

Submitted by Aline Batista (alinehb.ufpel@gmail.com) on 2018-04-25T22:16:31Z No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) Dissertacao_Amanda_Amaral_dos_Santos.pdf: 2686251 bytes, checksum: 2ce4552f502ff9af1172bec500458338 (MD5) / Made available in DSpace on 2018-04-27T20:15:09Z (GMT). No. of bitstreams: 2 Dissertacao_Amanda_Amaral_dos_Santos.pdf: 2686251 bytes, checksum: 2ce4552f502ff9af1172bec500458338 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) Previous issue date: 2018-02-28 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Introdução: Neste início de século XXI, as demências emergem como um importante problema de saúde pública, com especial interesse da comunidade mundial pela crescente ocorrência com consequências que impactam na vida das famílias, em especial no cuidador direto. A piora na qualidade de vida, o comprometimento físico, mental e social estão entre os problemas enfrentados pelos cuidadores e necessitam de apoio dos profissionais de saúde. Objetivo: Avaliar a qualidade de vida dos cuidadores informais dos idosos com comprometimento cognitivo e o apoio ao cuidador prestado pelos profissionais da Atenção Primária à Saúde. Metodologia: Estudo quantitativo, descritivo, realizado em 2017, na cidade de Bagé, Rio Grande do Sul, Brasil. A coleta de dados foi realizada por meio da aplicação de questionário contendo questões relacionadas a aspectos sociodemográficos, de qualidade de vida (WHOQOL-Bref) e sobrecarga (Zarit Burden). Resultados: Foram entrevistados 137 cuidadores, esses eram em sua maioria mulheres, casadas, idosas, que residiam no mesmo domicilio do idoso, viviam com renda até dois salários mínimos e possuíam baixa escolaridade. A qualidade de vida, avaliada em um escore de 0 a 100, resultou em uma média de 68,5 pontos para o domínio físico; 62,6 para o psicológico; 70,4 para as relações sociais e 59,1 para domínio ambiental,quanto maior o escore melhor a qualidade de vida. Na avaliação global da saúde, a maioria (83.9%) consideravam a saúde boa e (64,2%) estavam satisfeitos. Idade avançada, renda mais baixa, escolaridade reduzida, presença de morbidades, não utilização dos serviços de atenção básica, muitas horas de cuidado, diagnósticos clinico de demências foram variáveis associadas a pior qualidade de vida dos cuidadores. Conclusão: os achados reforçam importantes aspectos da determinação social apontados na literatura e possibilitou identificar o perfil dos cuidadores, com reflexões acerca do apoio dos profissionais da atenção primária à saúde na qualidade de vida dos cuidadores. / Introduction: At this beginning of the 21st century, dementias arise as an important public health matter as the interest of the global community for the matter grows due to its growing occurrence, with impactful consequences to the family lives, and especially to the direct caregiver. The deteriorating quality of life as well as the the physical, mental and social commitment are among the problems faced by caregiver, who require health care support. Objective: Evaluate the quality of life of informal caregivers of elderly with cognitive impairments as well as the support given to them by Primary Health Care professionals. Methodology: Quantitative research, descriptive, performed in 2017, in Bagé, Rio Grande do Sul, Brazil. The data gathering was performed by a survey containing queries related to sociodemographic aspects, quality of life (WHOQOL-Bref) and overburden (Zarity Burden). Results: 137 caregivers were surveyed, being the majority women, married, elderly, living in the same residence as the elderly care receiver, living with an income of up to two times the minimum wage and possessing a lower level of education. The quality of life, evaluated in a score of 0 to 100, resulted in an average of 68,5 points in the physical domain, 62,6 for the psychological, 70,4 for the social relationship and 59,1 for the environmental domain, the higher the score, the higher the quality of life. As for the global health evaluation, the majority (83.9%) considered their health good (64,2%) and were satisfied. Advanced ages, lower income and level of education, morbidities presence, non-use of basic health services, extensive caring hours and clinical diagnosis of dementias were variables associated to the bad life quality of the caregivers. Conclusion: the findings reiterate important aspects of the social determination indicated in the literature, possibilitating the identification of the caregivers’ profile, reflecting upon the primary health care professional support to the caregivers’ quality of life.

Yes / Objectives: Young onset dementia is associated with distinctive support needs but existing research on service provision has been largely small scale and qualitative. Our objective was to explore service use, cost and satisfaction across the UK. Methods: Information about socio‐demographic characteristics, service use and satisfaction were gathered from people with young onset dementia (YOD) and/or a family member/supporter via a national survey. Results: Two hundred and thirty‐three responses were analysed. Diagnosis was most commonly received through a Memory Clinic or Neurology. The type of service delivering diagnosis impacted on post‐diagnostic care. Those diagnosed in specialist YOD services were more likely to receive support within the first 6 weeks and receive ongoing care in the service where they were diagnosed. Ongoing care management arrangements varied but generally care was lacking. Around 42% reported no follow‐up during 6‐weeks after diagnosis; over a third reported seeing no health professional within the previous 3 months; just over a third had a key worker and just under a third had a care plan. Satisfaction and quality of care were highest in specialist services. Almost 60% of family members spent over 5 h per day caring; median costs of health and social care, 3 months, 2018, were £394 (interquartile range £389 to 640). Conclusions: Variation across diagnostic and post‐diagnostic care pathways for YOD leads to disparate experiences, with specialist young onset services being associated with better continuity, quality and satisfaction. More specialist services are needed so all with YOD can access age‐appropriate care. / Alzheimer's Society. Grant Number: 278 AS-PG-15b-034

Made available in DSpace on 2016-04-28T20:39:45Z (GMT). No. of bitstreams: 1 Jose Carlos Zeppellini Junior.pdf: 369454 bytes, checksum: 8e12f03d69e259daba0ab32db4f98f87 (MD5) Previous issue date: 2008-04-11 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / The human has being reaching higher and higher ages as time goes by. Civilizations all over the world are going through an irreversible process of aging populations which does not affect only several cultures but also makes us face more singular and subjective questions related to psychic work that deals with the passage from adulthood to the senile phase of life. Fundamental Psychopathology - from the point of view of its dedication and comprehension of pathic phenomenon as a constituting art of the individual offers us, a long with the psychoanalytical metapsychology and clinical practice, a rich material that assists us in the comprehension of the psychological aspects of natural aging and senility. Senile dementia present themselves as a psychopathological phenomenon, typical of this phase of life, that hot only affect the patient, but also all those around him. Therefore, the goal of this paper, besides amplifying the knowledge of this symptomathological picture, is to consider the psychopathological as a fertile and therapeutical ground, able to supply, through transference, a healthy meet among the several psychic moments and the nature of the agind body / O ser humano vem atingindo idades cada vez mais elevadas. Civilizações ao redor do globo estão submersas em um irreversível processo de envelhecimento populacional o que afeta não só as diversas culturas como, também, nos coloca diante de questões mais singulares e mais subjetivas a respeito do trabalho psíquico intrínseco à passagem da fase adulta para a fase senil da vida. A Psicopatologia Fundamental a partir de sua dedicação a compreensão do fenômeno páthico como constituinte do sujeito nos oferece, juntamente com a metapsicologia psicanalítica e a prática clínica, uma riqueza de materiais que nos auxilia na compreensão dos aspectos psicológicos da senescência e da senilidade. As demências senis se apresentam como um fenômeno psicopatológico típico desta etapa da vida e que afeta não só o paciente, mas todos aqueles com quem convive. Portanto, o objetivo deste trabalho, além de ampliar o conhecimento a respeito deste quadro sintomatológico, é o de pensar a clínica psicopatológica como um terreno fértil e terapêutico, capaz de propiciar, através da transferência, um encontro saudável entre os diferentes tempos psíquicos e a natureza do corpo que envelhece

Cette thèse démontre à travers de 11 publications que le vieillissement physiologique se caractérise par une atténuation à la fois du processus homéostasique du sommeil ainsi que des processus circadiens. Dans le vieillissement pathologique (les démences), les rythmes circadiens peuvent être davantage affaiblis. Les répercussions cognitives et psychologiques comprennent les processus de mémorisation d’une part, et nous avons pu démontrer d’autre part que le système circadien joue un rôle majeur sur le bien-­être du sujet âgé. Enfin, les troubles du sommeil augmentant également avec l’âge, nous avons démontré que des facteurs génétiques (APOE4, allèle s du 5-HTTLPR), peuvent agir en tant que modulateur des effets des troubles du sommeil (apnées du sommeil) sur la fonction cognitive. Pour l’allèle s du 5-­HTTLPR, nous avons décrit qu’il interagit avec des mesures biologiques du stress (cortisol) pour affecter la mémoire, probablement via un mécanisme impliquant l’hippocampe. / In this doctoral thesis and its 11 published manuscripts, we show that the physiological aging process is accompanied by an attenuation of the homeostatic sleep process as well as attenuated circadian processes. This weakening of circadian rhythms is even more pronounced during pathological aging (the dementias). Its cognitive and psychological repercussions include memory processes, and we have also demonstrated that the circadian system plays a major rôle on well-­being in older adults.Finally, sleep disorders increase with age, and we have shown that genetic factors such as APOE4 or the 5-­‐HTTLPR s allele act as moderators of sleep disorders’ effect (such as sleep apnea) on cognitive outcomes. For the 5-­‐HTTLPR s allele, we described its interactions with biological measures of stress (cortisol) to affect memory, probably via mechanisms implying the hippocampus.