Laís Záu Serpa de Araujoa1* and Carolina Záu Serpa de Araujob2
Programa de Pós-Graduação em Bioética, Pontifícia Universidade Católica do Paraná, Brazil
Submission: November 20, 2018; Published: December 10, 2018
*Corresponding author: Daiane Priscila Simão-Silva, Programa de Pós-Graduação em Bioética, Departamento de Biotecnologia, Escola de Ciências da Vida, Pontifícia Universidade Católica do Paraná, Brazil.
People with neurodegenerative dementias present an impairment of cognitive functions such as memory, behavior and thinking and the ability to perform everyday activities, and according to Fox et al.  palliative care for them should be the same as the one provided for cancer patients. However, in general, this does not occur. Promoting an improvement of quality of life and alleviating suffering in dementia is a challenge because the vulnerability that a dementia brings is distinct from other diseases. The impairment affects, for example, the ability to verbally express preferences about the care, physical weakness and cognitive impairment greatly limit the possibility of multi professional treatment .
As dementia progresses, the affected person requires more care and is usually taken out of the place she or he used to live. Along with the change, are also away some memories that were possible in that locality. Activities of daily life are being compromised, and for safety reasons, relatives restrict also the performance of any activity. This entire scenario contributes to exacerbate the dementia progress, incapacitating and accelerating even more the impairment. In hospital environments or houses of hospitality, small details that can help in the process of nursing care and quality of life, such as maintenance of aromas, flavors, memories and even respect for the schedule that was usual for activities such as bathing, do not happen, weakening even more the state of health of the person with dementia.
Palliative care, to begin with, is thought considering the complex, multidimensional and dynamic nature of diseases that will progress to end-of-life, with trajectories entailed by physical, psychic, spiritual and social suffering. In this context, the importance of a multidisciplinary team in the care of patients in palliative care has been widely addressed . In dementia cases, it is always necessary to assess if the increasing in the number of people offering care will actually reflect quality of life, or if because memory loss, for example, that can be stressful, due to the insecurity that the flow of people can cause to the patient. In dementia the excess of stimuli can be the cause of greater discomfort and suffering. However, the retrieval of the person’s spiritual objects, songs, or even some rituals can contribute significantly to the patient’s comfort.
The multi professional work with the family is essential because they are diseases that can cause a great change, as well as an overload regard to the care and the affective factors caused by the changes derived from the disease. Family members’ perception of progressive cognitive impairment may be slower than the real impairment, leading to misunderstanding, distancing, and lack of appropriate help and support. To welcome the family and to support the understanding of the severity of the disease is also to anticipate grief, since the person is no longer the one, they have lived together for so long, due to significant cognitive changes. This perception will have an important effect to promote pain relief and other unpleasant symptoms in the context of medicating the patient. The treatment with cholinergic inhibitors for Alzheimer’s disease, for example, can have many side effects, such as gastrointestinal discomfort, muscle cramps, among others that further weaken the patient’s vulnerability. However, the family feels negligent to see the patient without any medication, preferring to medicate even without noticing improvements, and often not having access to discomfort information due to the advanced dementia condition.
The sheltering of the person affected by dementia is a call for recognition of the intrinsic dignity of each human being, since the authenticity of actions and decision-making are no longer possible to that patient. The weakness presented, that goes from the ability to exercise the freedom, autonomy and responsibility to the loss of control of basic functions such as excretion, swallowing, must not compromise the act of taking care of the person’s life. Dementia cases require the practice of kindness with the exercise of what Pellegrino and Thomasma  refer to as virtue ethics, where compassion, or the capacity to feel what the other feels, must be the guiding principle of the behaviors in the palliative care.