Fatores que condicionam a acessibilidade aos cuidados paliativos dos doentes com demência na perspetiva dos neurologistas e paliativistas

Translated title of the contribution: Factors conditioning accessibility to palliative care of patients with dementia in the perspective of neurologists and palliativists

Dina Neidi Branco, Manuel Luís Capelas

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Abstract

Introduction: Dementia is an irreversible syndrome, whose prevalence rate has been increasing. Being a pathology that is usually long-term and with high levels of dependence, it has a great social and economic impact for families, caregivers and the community. Palliative care is a possible answer, with a view to promoting well-being and the best possible quality of life for the patient / family, with priority being given to care and respect for human dignity. Aim: To identify factors that affect the accessibility to palliative care of patients with dementia from the perspective of neurologists and palliative carers. Materials and Methods: Descriptive, qualitative study by means of thematic analysis. Snowball sampling, consisting of 6 neurologists and 6 palliative practitioners. Semi-structured interview script used with audio recording. Results: Both groups considered pertinent the referral of the patient with dementia to palliative care. Countless factors condition this referral: society (lack of knowledge about dementia and palliative care; stigma that associates palliative care with cancer and end-of-life), policies / health system (lack of structures and specialized teams to receive the patient with dementia and support him and his family, difficulty /inaccessibility of the referral process, little investment in palliative care research), health professionals (lack of training in dementia and palliative care; little awareness of patient / family needs; little time to educate and train caregivers; research deficit in palliative care), patient / family (stigma and lack of knowledge about the nature / benefits of palliative care; lack of knowledge about dementia and how to care for the family member; difficulty accepting care from others). Conclusion: The introduction of palliative care is a timely response to the needs of people with dementia. However, health professionals have training deficits in the area of dementia and palliative care, influencing this aspect the perceptions they build regarding the association of both valences. The inclusion of these and an interdisciplinary and integrative approach from the moment of diagnosis would be an asset for patients, their family / caregivers and society in general, therefore strategies should be developed to mitigate the difficulties/ barriers referred above.
Translated title of the contributionFactors conditioning accessibility to palliative care of patients with dementia in the perspective of neurologists and palliativists
Original languagePortuguese
Pages (from-to)41-46
Number of pages6
Journal Cadernos de Saúde
Volume12
Issue number1
DOIs
Publication statusPublished - 5 Jan 2020

Keywords

  • Dementia
  • Palliative care
  • Accessibility

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