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Christine, uma pessoa. Ou: “My Life on a Post-it Note”

2043-061114

Através deste documentário produzido pela BBC em 2006 é possível refletir sobre algumas questões significativas que envolvem a “demência” por doença de Alzheimer e a “pessoa” que vivencia um processo demencial. Como pode ser possível sobreviver dignamente em meio a uma sociedade que se representa e se reconhece a partir de um modelo “hipercognitivo”?

*   *   *

Christine está resolvida a preservar o máximo possível a sua autonomia e independência mesmo sabendo que apresenta a doença de Alzheimer que se instalou precocemente.

Em determinado momento comenta que não saberia mais o que fazer caso alguém um dia lhe dissesse que não tem mais a doença de Alzheiemer, pois isso já está incorporado à sua existência e ao seu modo de compreender e interagir com o mundo.

Ela é alegre e espirituosa, às vezes ri das suas próprias dificuldades, cria diversas estratégias compensatórias. Aceita ajuda, mas quer preservar a sua capacidade de decidir o próprio destino. Tem pensando muito sobre isso... A sua filha também...

 

*   *   *

Uma pessoa viva, ou uma doença progressiva e incurável...? A partir de qual destas duas óticas se torna possível ter uma melhor percepção dos fatos...?

Como a pessoa analisa o seu próprio processo existencial a partir da percepção e do enfrentamento consciente das mudanças e das dificuldades cotidianas?

É Melhor viver apenas o presente ou tentar planejar cuidadosamente o futuro...? Que opiniões levar em consideração para a tomada de decisões...?

Existem limites claros entre o direito individual, a autonomia, a dignidade, e a ética? Morrer seria uma opção mais digna para quem enfrenta esta experiência?

Alguém que vivencia a experiência de um processo demencial pode continuar buscando, ou mesmo, encontrar um sentido para a sua própria vida? 

Assista a este filme e faça as suas reflexões...!

E se desejar, você poderá fazer um passeio através dos textos referenciados ao final,

construindo um diálogo com os autores sobre algumas destas questões.

 

*   *   * 

 

BBC - Alzheimer A vida em Post-it

 

Link:  http://www.youtube.com/watch?v=aHy2jTfyrPI

 

*   *   *

 

Links Externos

01- BBC - Alzheimer A vida em Post-it

http://www.youtube.com/watch?v=aHy2jTfyrPI

 02- My Life On A Post-it Note

http://bioethicsbytes.wordpress.com/2008/08/08/my-life-on-a-post-it-note/

03- Alzheimer's, Mum and a million Post-it Notes

http://www.cambridge-news.co.uk/Alzheimers-Mum-million-Postit-Notes/story-22459743-detail/story.html

 04- Respect for Autonomy

http://www.alz.org/documents_custom/statements/Respect_for_Autonomy.pdf

 05- Dementia: autonomy and  decision-making  Putting principles into practice

http://www.nuffieldfoundation.org/sites/default/files/files/Dementia_autonomy%20_decision-making.pdf

 06- Awareness of disease in dementia: factor structure of the assessment scale of psychosocial impact of the diagnosis of dementia

http://www.ncbi.nlm.nih.gov/pubmed/24718103

07- Awareness of Disease is different for Cognitive and Functional Aspects in Mild Alzheimer's Disease 

http://www.ncbi.nlm.nih.gov/pubmed/25125460

 08- Consciência da doença na demência: resultados preliminares em pacientes com doença de Alzheimer leve e moderada

http://www.scielo.br/scielo.php?pid=S0004-282X2005000100021&script=sci_arttext

 09- Awareness of disease in dementia: development of a multidimensional rating scale 

http://www.demneuropsy.com.br/detalhe_artigo.asp?id=135

 10- PRESERVED KNOWLEDGE OF SELF IN A CASE OF ALZHEIMER’S DEMENTIA

http://www.cep.ucsb.edu/papers/kr03.pdf

 11- Impacto psicológico del diagnóstico de la enfermedad de Alzheimer

http://www.imedicinas.com/pfw_files/cma/ArticulosR/Neurologia/2008/05/109050802940298.pdf

 12- Self-management in early-stage dementia: a pilot randomised controlled trial of the efficacy and cost-effectiveness of a self-management group intervention (the SMART study)

http://www.trialsjournal.com/content/15/1/74

 13- Demência de Alzheimer: correlação entre memória e autonomia

 http://www.scielo.br/pdf/rpc/v32n3/a05v32n3.pdf

 14-Dignidade, autonomia do paciente e doença mental

 http://revistabioetica.cfm.org.br/index.php/revista_bioetica/article/viewFile/571/543

 15- La capacidad de los pacientes para tomar decisiones: una tarea todavía pendiente

http://www.acpgerontologia.com/documentacion/Simoncapacidadunasuntopendiente.pdf

16-LE DEMENZE E LA MALATTIA DI ALZHEIMER:  CONSIDERAZIONI ETICHE

http://www.governo.it/bioetica/pdf/demenze_malattia_Alzheimer.pdf

 17- Problemi etici nella cura della persona con demenza (parte prima). Il rispetto dell’ autonomia: consapevolezza, capacità e disturbi del comportamento

http://www.neuro.it/documents/GdS_demenza.pdf

 18-L’etica delle demenze: un problema emergente

http://www.aimabiella.it/files/etica-delle-demenze1.pdf

 19- Dilemas bioéticos na assistência prestada ao idoso portador de demência do tipo Alzheimer

http://revistas.pucsp.br/index.php/kairos/article/viewFile/2397/1490

 20-Alzheimer, Demência e o Testamento Vital: Uma proposta

http://portal.cfm.org.br/index.php?option=com_content&view=article&id=24686:alzheimer-demencia-e-o-testamento-vital-uma-proposta&catid=46

 21-Aspectos fenomenológicos y éticos del envejecimiento y la demência

http://www.scielo.cl/scielo.php?script=sci_arttext&pid=S0034-98872005000100015

 22- Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518005/pdf/11606_2008_Article_688.pdf

 23- 2012 Alzheimer Europe Report: "The ethical issues linked to restrictions of freedom of people with dementia"

http://www.alzheimer-europe.org/EN/Publications/Alzheimer-Europe-Reports

 24- ASPECTOS BIOÉTICOS EN LA ATENCIÓN AL ENFERMO DE ALZHEIMER Y SUS CUIDADORES

http://www.scielo.org.co/pdf/pebi/v17n1/v17n1a07.pdf

25- Principio de autonomía en las demencias avanzadas: ¿queremos para los demás lo que no deseamos para nosotros?

http://eutanasia.ws/hemeroteca/j35.pdf

 26- CUIDADO A PERSONAS CON ENFERMEDAD DE ALZHEIMER, DESDE UNA ÉTICA PERSONALISTA

http://www.cbioetica.org/suplement/92_sup.pdf

27- Documento Sitges 2009. Capacidad para tomar decisiones durante la evolución de una demencia: reflexiones, derechos y propuestas de evaluación 

28- Autonomy and dementia

http://www.ncbi.nlm.nih.gov/pubmed/21586384

 29- Autonomy and dementia Part II: autonomy and representation: a possible combination?

http://www.ncbi.nlm.nih.gov/pubmed/21690029

 30- Dignity-preserving dementia care: A metasynthesis

http://www.diva-portal.org/smash/get/diva2:692838/FULLTEXT01.pdf

 31- Restoring autonomy. Symmetry and asymmetry in care relationships

 http://ngtt.journals.ac.za/pub/article/download/38/65

 32- Autonomy and Control when Working with Humans—A Reflection on Sociotechnical Concepts

 http://rossy.ruc.dk/ojs/index.php/njwls/article/download/3072/1335

 33- Maintaining personal identity: respect and dignity

http://www.health.vic.gov.au/dementia/changes/personal-identity.htm

 34- Deber ético de promover la autonomía y competencia del paciente psiquiátrico.

http://www.neurociencia.cl/dinamicos/articulos/204943-rcnp2010vol5n1-3.pdf

 35- All about me. This is a booklet about a person living with  Alzheimer’s disease or  other dementia.

http://www.alzheimer.ca/~/media/Files/national/Core-lit-brochures/all_about_me_booklet_e.pdf

 36- The influence of relationships on personhood in dementia care: a qualitative, hermeneutic study

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3878215/

 37- Preserving Personhood of Individuals with Advanced Dementia: Lessons from Family Caregivers

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4177850/

 38- Views of the person with dementia

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1733380/pdf/v027p00086.pdf

 

 

*   *   *

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