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Dilemmas and ethics of care: conserving and caring for the autonomy of the person with dementia
Dilemas y ética del cuidado: conservar y cuidar la autonomía de la persona con demencia
Habib Georges Moutran Barroso
Corresponding author
moutranhabib@gmail.com

Corresponding author.
Neurología Clínica, Universidad El Bosque y Fundación Santa Fe de Bogotá, Bogotá, Colombia
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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Dementia is defined as a major neurocognitive disorder&#44; with a high degree of disability for those who suffer from it&#46; As the disease progresses&#44; the cognitive deficit becomes more disabling&#44; limiting decision-making and many different functions&#44; which means that decisions increasingly fall on the caregiver and family members&#46; However&#44; current literature suggests that people with dementia&#44; even those with a very advanced disease&#44; can have control over different domains of their functioning and self-control over their own lives and&#44; especially&#44; over decision-making&#44; because they can articulate values&#44; preferences and choices according to what they consider important&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">Dementia is considered a health problem of vital importance&#44; with implications for carers&#44; public services and healthcare systems&#44; and is one of the most common reasons for admission to residential care homes for older adults&#46; As these people&#39;s dependency increases&#44; their care becomes more complex and the importance of preserving and respecting their autonomy&#44; as well as their human dignity&#44; becomes even more pressing&#46; Accordingly&#44; a key message in the World Health Organization &#40;WHO&#41; Report 4 on dementia as a public health priority is the need to improve social&#44; cultural and health perspectives towards&#44; and understanding of&#44; dementia&#46;</p><p id="par0015" class="elsevierStylePara elsevierViewall">People with dementia&#44; despite the burden of the disease&#44; persist in their desire to remain owners and authors of the decisions or processes that directly affect their lives&#46; Therefore&#44; it is an ethical priority to maintain care for this type of people and ensure that they have opportunities to live their lives according to their desires and values&#44; in addition to maintaining their active roles for as long as their illness allows&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">Bioethics seeks to address the challenges posed by dementia&#46; It is an interdisciplinary subject that we need to keep constantly abreast of&#44; as well as the different conceptual elements&#44; in order to create bridges in the care of these people and preserve their autonomy as far as is possible&#46; It is a contemporary topic that needs to be discussed&#44; because the prevalence of dementia in the world population has significantly increased&#44; with the WHO estimating that dementia rates will double every 20 years&#44; reaching 115&#46;4 million affected people by the year 2050&#46;<a class="elsevierStyleCrossRefs" href="#bib0005"><span class="elsevierStyleSup">1&#44;2</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">It is pertinent to consider decision-making by people with dementia&#44; as well as by their caregivers&#44; because it represents a major challenge&#44; not only in matters concerning medical care &#40;for example&#44; decisions about their treatments as well as preferences related to end-of-life care&#41;&#44; but also in those related to their day-to-day concerns&#44; financial aspects and intimate relationships&#46; It is crucial that we take these aspects of people with dementia into consideration&#44; thus raising awareness of the value of their autonomy and sense of well-being&#46;</p><p id="par0030" class="elsevierStylePara elsevierViewall">In this article&#44; I will introduce and defend the premise of the existence of autonomy in the person with dementia&#44; as well as the need to care for them and create action plans based on advance decision-making&#46; To do this&#44; I have used the following categories&#58; dignity&#59; ethics of vulnerability&#59; ethics of care&#59; advance decision-making and personal autonomy&#46; Additionally&#44; I discuss some final considerations about how to care for autonomy in these patients&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Dementia&#58; what are we dealing with&#63;</span><p id="par0035" class="elsevierStylePara elsevierViewall">The word <span class="elsevierStyleItalic">dementia</span> derives from the Latin root <span class="elsevierStyleItalic">demens</span>&#44; which means &#34;being out of one&#39;s mind&#34;&#44; and is defined as a syndrome occurring as a result of a central nervous system disease&#44; which is generally chronic or progressive in nature&#46; It consists of the deterioration of several higher mental functions&#46; These impairments are often accompanied by changes in emotional control&#44; social behaviour and&#47;or motivation&#46; Alzheimer&#39;s disease and dementia associated with cerebrovascular disease are among the leading causes&#46;</p><p id="par0040" class="elsevierStylePara elsevierViewall">Dementia occurs mainly in people over the age of 65&#46; Worldwide&#44; around 47 million people were living with dementia in 2015&#44; and this number is projected to triple by 2050 &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41;&#46; Dementia causes a person to gradually lose their abilities&#44; with the consequent increase in their dependency and impact on their family and carers&#46; The worldwide cost of dementia in 2015 was estimated at US&#36; 818&#44;000 million&#44; related to family&#44; social and medical care&#46;<a class="elsevierStyleCrossRefs" href="#bib0005"><span class="elsevierStyleSup">1&#44;2</span></a> This figure is expected to continue to grow as the number of people with dementia increases&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0045" class="elsevierStylePara elsevierViewall">Despite efforts to protect older adults&#44; they undoubtedly continue to suffer from age discrimination and insufficient plans to cover their needs&#44; especially in terms of prevention&#44; diagnosis and treatment&#46; Between 2000 and 2050&#44; the proportion of the world&#39;s inhabitants over 60 years of age will double&#44; rising from 11&#37; to 22&#37;&#44; and this age group will grow from 605 million to 2 billion over the course of half a century&#46;<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a></p><p id="par0050" class="elsevierStylePara elsevierViewall">In terms of the psychosocial problem of dementia in older adults&#44; the risk of suffering from this condition increases after the age of 65 and the risk doubles every five years&#46; Largely as a consequence of this&#44; in the high-income countries&#44; between 4&#37; and 6&#37; of older people have suffered some form of abuse at home&#46;</p><p id="par0055" class="elsevierStylePara elsevierViewall">In care facilities&#44; such as nursing homes and residential care homes&#44; acts of abuse are committed against these patients&#44; which violate their dignity by deliberately denying them proper care and inflicting physical and emotional abuse&#46; Elder abuse can cause serious physical harm and irreparable psychological damage&#46; It is estimated that&#44; by 2050&#44; a significant number of older adults will not be able to care for themselves&#44; in terms of disability and dependency&#44; and their number will increase fourfold in low- and middle-income countries&#46;<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a></p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Between autonomy and disability</span><p id="par0060" class="elsevierStylePara elsevierViewall">The term <span class="elsevierStyleItalic">autonomy</span> was initially used in ancient Greece to describe cities that governed themselves or created their own laws&#46; The word derives from Greek and does not differ much in its use&#58; <span class="elsevierStyleItalic">autonomy</span> comes from the word <span class="elsevierStyleItalic">autos</span> &#40;self&#41; and <span class="elsevierStyleItalic">nomos</span> &#40;law or rule&#41;&#44; and the general idea&#44; which has not changed since then&#44; is that the subject in question&#44; in one way or another&#44; &#34;governs him or herself&#34;&#46;</p><p id="par0065" class="elsevierStylePara elsevierViewall">There are multiple ways to be autonomous and&#44; in particular&#44; the category of personal autonomy is ideal for understanding people with dementia&#46; The idea of personal autonomy is that a person &#34;governs him or herself&#34;&#46; That is to say&#44; they decide and act according to their own convictions&#44; values and desires&#44; and independently of unwanted internal and external influences&#46;<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> Because&#44; especially when explaining personal autonomy as &#34;self-governance&#34;&#44; it is usually implied more by the notion of a <span class="elsevierStyleItalic">&#34;self&#34;</span>&#44; and that <span class="elsevierStyleItalic">&#34;self&#34;</span> is based on the aforementioned idea of a person&#8217;s own beliefs&#44; values&#44; desires and things&#46; To be autonomous&#44; therefore&#44; one has to decide and act or&#44; to put it in broader terms&#44; live in general according to motives that can count as expressions of one&#39;s self&#44; that is&#44; of who the person is or wants to be&#46; Consequently&#44; a person can be classified as autonomous if their decisions&#44; actions&#44; or life in general can be interpreted as an authentic expression of who this person is&#46;<a class="elsevierStyleCrossRefs" href="#bib0020"><span class="elsevierStyleSup">4&#44;5</span></a> Therefore&#44; rationality or decision-making capacity are not an exclusive requirement for understanding autonomy&#44; and they are also distinct categories&#46; The challenge of understanding and articulating autonomy&#8212;when we are relating to people who have certain limitations&#8212;is to be able to account for it in different contexts&#44; such as people with dementia&#46;<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a></p><p id="par0070" class="elsevierStylePara elsevierViewall">People with dementia express interests and make decisions based on these interests&#44; at least until they reach the end stages of the disease&#44; so it is pertinent to preserve and protect the deliberations of these people and for them to be involved in the judgements or decisions made regarding their health and their care&#44; as well as the role of their caregivers&#46; Dependency entails the loss of certain domains of autonomy&#44; but this persists until the end stages of dementia&#46;</p><p id="par0075" class="elsevierStylePara elsevierViewall">Patients with dementia have their past interests&#44; even though their identity&#44; as a psychological and biological continuity&#44; is altered&#59; and they can maintain them in the present&#44; for as long as their condition allows&#44; in order to make political&#44; medical and social deliberations&#46; Excluding what a person expressed at some point is a direct way of attacking their autonomy&#46;</p><p id="par0080" class="elsevierStylePara elsevierViewall">When dealing with a person with dementia&#44; especially in a doctor-patient relationship&#44; it is necessary to keep in perspective that they have needs&#44; just like any other individual&#44; and the needs of each person vary according to their own context&#44; especially in medical conditions&#46; However&#44; the quality that fosters a better understanding of people with dementia is through the acknowledgement of their state of vulnerability&#44; as their narrative may be affected depending on the stage or progression of the disease&#46; The ethics of vulnerability gives us tools for understanding this scenario&#44; especially the ethics of otherness put forward by Emmanuel Levinas&#44;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a> who posits that&#44; in order to get closer to the <span class="elsevierStyleItalic">other</span>&#44; it is necessary to create sufficient means so that the relationships are the least asymmetrical and most empathetic possible&#44; in order to grasp and understand who the person is&#44; as well as what they want&#46; Based on this&#44; we can move towards a therapeutic and problem-solving relationship&#46; Knowing the patient&#39;s motivations and desires&#44; both past and present&#44; enables us to make decisions that seek the maximum amount of benefits without undermining or violating their autonomy&#44; and without resulting in any disproportionate measure that causes some type of physical or emotional harm&#46;</p><p id="par0085" class="elsevierStylePara elsevierViewall">Emmanuel Levinas proposes that vulnerability in human dynamics is an asymmetric relationship&#44; because the vulnerable person is limited in one or several ways&#44; depending on a given context&#46; Human relationships are dynamic and must necessarily change in order to respond to the vulnerable person&#44; especially in ethics&#46; Levinas formulates the meaning of &#34;face-to-face&#34; from an ethical principle of otherness&#44; describing an anthropology of empathy that corresponds with the subjectivity of the other&#44; seeking and working on their weaknesses and ensuring that the relationships are the least asymmetrical possible&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a> We should aim to respond to the other by means of communication&#44; because through empathetic recognition we can establish an interpersonal relationship based on dialogue&#44; respect and acceptance of difference&#46;<a class="elsevierStyleCrossRef" href="#bib0035"><span class="elsevierStyleSup">7</span></a></p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Dignity and legitimacy</span><p id="par0090" class="elsevierStylePara elsevierViewall">Autonomy is necessarily linked to an understanding of human dignity&#46; In his text <span class="elsevierStyleItalic">&#34;Autonomy and the demented self&#34;</span>&#44; Ronald Dworkin introduces the issue of autonomy in people with dementia by raising several dilemmas<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a>&#58;</p><p id="par0095" class="elsevierStylePara elsevierViewall">Does a competent person&#39;s right to autonomy include&#44; for example&#44; the power to dictate that a life-prolonging treatment be denied him or her at a later stage&#44; even if&#44; when demented&#44; he or she pleads for it&#63; Should what is done for a demented person be in his or her contemporary best interests&#44; in other words&#44; to make the rest of his or her life as pleasant or as comfortable as possible&#63; Or should it be in the best interests of the person who has become demented&#44; that is&#44; to make his or her life a better one overall&#63; &#40;Suppose that a demented patient wants a certain care and treatment that would make him or her a serious burden on other members of his or her family&#8212;and we believe that people lead better lives when they are not a heavy burden to others&#8212;is it in the best interests of the patient&#44; overall&#44; to allow him or her to become the burden that he or she is now anxious of being&#63;&#41;</p><p id="par0100" class="elsevierStylePara elsevierViewall">The category of human dignity is implicitly described in the above paragraph&#44; because it infers that people&#8212;despite being in conditions of disability&#44; where there is a decrease in their decision-making ability&#8212;can still exercise a domain of agency or local autonomy&#44;<a class="elsevierStyleCrossRef" href="#fn0005"><span class="elsevierStyleSup">a</span></a> expressing what is or is not important to them&#46; Dignity is not lost when there are limitations in the decision-making capacity&#44; because the person retains their autonomy in a particular sense&#44; as well as the right to be considered within social and political deliberations&#46; Autonomy is based on recognition of the freedom that each person has&#44; as well as the capacity that each human being has to self-determination&#46;<a class="elsevierStyleCrossRefs" href="#bib0045"><span class="elsevierStyleSup">9&#44;10</span></a></p><p id="par0105" class="elsevierStylePara elsevierViewall">Dignity&#44; understood as &#34;what is legitimate for each person&#34; in terms of their rights&#44; is necessarily linked to the condition of being human&#44; and this must be upheld and protected&#44; despite the different conditions of vulnerability to which a person may be exposed&#44; especially in psychiatric conditions or dementia&#46;</p><p id="par0110" class="elsevierStylePara elsevierViewall">The way to understand the autonomy of people with dementia is to assume that they are autonomous in terms of self-governance&#44; as I mentioned earlier&#44; and that their capacity for agency&#44; understood as the capacity for action&#44; is not the most paradigmatic&#46; It cannot be deliberately assumed that a person with dementia is not autonomous or does not have decision-making capacity&#44; because to assume this is to ignore their sense of agency and to disregard any desires&#44; thoughts and deliberations they may have&#46; What we need to do for people with dementia is to recognise and seek non-paradigmatic forms of autonomy&#44; recognising that they are agents in a particular sense and that their capacity for action is their own&#44; insofar as it reflects their desires&#46; The premise that should guide the care and attention of these patients is to seek what is best for them and to recognise their local autonomy&#44; as well as their sense of agency&#46;</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Ethics of vulnerability</span><p id="par0115" class="elsevierStylePara elsevierViewall">Patients with dementia are in states of vulnerability&#44; given that&#8212;as I have mentioned&#8212;they have physical&#44; emotional and psychological dependencies on their caregivers&#44; and their decision-making capacity and independence are affected as their condition progresses&#46; However&#44; it has been shown that these patients can make judgements and express thoughts regarding what they consider important to them and select what they want in order to do so&#46; Therefore&#44; as Corine Pelluchon points out&#44; the context of these patients must be orientated based on an understanding of autonomy towards &#34;vulnerability&#34;&#46;<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a> The &#8220;ethics of vulnerability&#8221; invites the clinician to discern the context of a vulnerable patient who is deprived of their capacity for judgement or a particular sense of autonomy and cannot account for their emotions or choices&#46; However&#44; this ethic suggests an approach to the ethics of care<a class="elsevierStyleCrossRefs" href="#bib0055"><span class="elsevierStyleSup">11&#44;12</span></a> in which healthcare staff appreciate that the affected person is limited and thus provide a holistic care&#44; without this meaning that they lose their moral status&#46;<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> Moral status&#44; as A&#46; Warren suggests&#44; is the disposition to be morally considerable before the world&#44; so that the individual cannot be treated as we please&#44; and it is accepted that we are obliged to take into consideration in our deliberations&#44; the needs&#44; interests or well-being of the individual&#44; who is the vulnerable patient in this case&#46; Thus&#44; we are morally obliged to protect the vulnerable&#44; as well as other human beings &#40;particular contexts&#41; and all other things or living beings that are in the natural world&#46;</p><p id="par0120" class="elsevierStylePara elsevierViewall">This ethic takes into account the medical ethics of ethics committees&#46; On the other hand&#44; it invites participants to consider that there may be certain cases that escape these codes&#44; forcing us to accept that there may be an <span class="elsevierStyleItalic">alterity</span> &#40;otherness&#41; in autonomy&#44; and this does not always obey the Kantian maxims of rationality&#46; There are many contexts that place patients in a state of vulnerability&#44; but this does not imply that we should posit the univocity of rationality as the maximum requirement for decision-making&#46; Furthermore&#44; stating that a patient does not have decision-making ability entails a great ethical and legal responsibility&#44; because from that moment on the patient loses their legally recognised right to participate in the making of decisions about their health and life&#46;</p><p id="par0125" class="elsevierStylePara elsevierViewall">In this type of context&#44; it is difficult to contemplate only a notion of rational autonomy and the participation of informed consent&#44; which is the hegemony that predominates in contemporary clinical practice&#46; As Carol Gilligan<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a> and Corine Pelluchon<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a> point out&#44; autonomy is linked to the need to introduce the patient&#39;s emotional participation&#44; as well as being an area that seeks to link understanding and compassion from a care approach in the hospital environment&#46; Beyond considering a rational subject&#44; if we contemplate rationality from a Kantian or Rawlsian tradition&#44;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> we must recognise&#8212;within decision-making&#8212;the ontological impact of being vulnerable&#44; without this signifying that the ideals and feelings of the patient and their family may be subjugated with respect to the scientific-positivist-reductionist hegemony&#46; In this context&#44; as in many others&#44; it is about establishing a more holistic phenomenology of the vulnerable person&#44; considering who the person is&#44; what they want&#44; and negotiating with the principles that govern bioethics &#40;principlism&#41; to create a common agreement between them&#44; seeking a balance centred on the patient&#39;s well-being&#46;</p><p id="par0130" class="elsevierStylePara elsevierViewall">Life cannot simply become a means to an end&#46; People who are in a state of vulnerability are fragile and retain their humanity despite not realising this in a paradigmatic way&#44; because they do not lose the meanings that link them or connect them with their family and society&#44; or their moral status before the world&#46;</p><p id="par0135" class="elsevierStylePara elsevierViewall">The ability to make decisions based on the principle of autonomy is determined by the capacity and sufficiency of mental functions&#44; so that each person can make decisions related to themselves and their environment&#46; However&#44; in multiple contexts&#44; people may have limitations in their mental functions&#44; such as dementia&#44; which produces a type of hierarchy of people who have sufficient cognitive abilities over those who do not&#44; and this generates fractures in their autonomy&#46; Therefore&#44; it is a duty to recognise the heteronomous nature of human relations&#44; as well as the plurality of humans&#44; especially in relation to their own body and the events that may occur in it&#46; Faced with these challenges&#44; we must understand the person with dementia &#34;face-to-face&#34;&#44; as Levinas suggests&#44; in terms of their subjectivity&#44; examining the vulnerability and the responsibility we have towards this person&#44; in light of their limitations and seeking to guarantee their individuality and moral status&#46; This position&#44; based on <span class="elsevierStyleItalic">alterity</span>&#44; seeks to understand what the patient wants&#44; to understand the condition that is weakening their autonomy&#44; and to enable relationships of recognition&#44; and interventions concerning the person and their family&#44; and to create an exchange in which visions of the world&#44; certain values and concepts can be shared&#46;<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a></p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Character and unexpected happiness</span><p id="par0140" class="elsevierStylePara elsevierViewall">The value of autonomy reflects the person&#39;s ability to express their own character&#46; Dworkin proposes a conception of autonomy centred on character&#44; where there is a wholeness of the person&#39;s experiences according to their life&#44; in which their narrative and coherence prevails&#44; based mainly on their wants and desires&#46; Therefore&#44; although a person with dementia is significantly affected by his or her condition&#44; general judgements about the type of life they would have liked to have led in the past should be considered&#44; especially by their relatives and caregivers&#46;<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">16</span></a> Therefore&#44; the patient&#39;s family members and caregivers should promote their autonomy and integrity and look after their interests&#46;</p><p id="par0145" class="elsevierStylePara elsevierViewall">Every person has interests&#44; which make life better if they are satisfied&#44; and they are interests that&#44; if not satisfied&#44; would affect the person&#44; in terms of them being an autonomous agent&#46; Dworkin argues that the fulfilment of these interests is still in a person&#39;s best interest&#44; even if the person would reap no experiential reward from it to argue in favour of their own life&#46; In other words&#44; critical interests&#44; such as autonomy&#44; prevail over external interests&#46;<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a></p><p id="par0150" class="elsevierStylePara elsevierViewall">Dworkin posits that there may be conflicts between the interests of the present or contemporary person with dementia over the same person without dementia in the past&#44; seeking a balance between beneficence and autonomy&#46; However&#44; we may also consider that the autonomy can be &#34;unravelled&#34; by seeking the patient&#39;s best interest&#44; and overriding the autonomy of the patient&#39;s past <span class="elsevierStyleItalic">self</span> under rare extenuating circumstances when the patient&#39;s present <span class="elsevierStyleItalic">self</span> finds an unexpected happiness&#46;<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">17</span></a></p><p id="par0155" class="elsevierStylePara elsevierViewall">It is important to be attentive to the narrative of a patient with dementia&#44; because dementia causes difficulties in articulating coherent and meaningful ideas&#46; Therefore&#44; care is essential in dementia&#44; both for the patient and for the caregivers&#46; In narrative care&#44; people with dementia are treated not as impaired patients who are defined by the disease&#44; but as human beings&#46; In doing so&#44; people with dementia can reclaim their own voices&#44; which are so often silenced and discredited&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#44;17</span></a></p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0105">Advance decision-making in people with dementia</span><p id="par0160" class="elsevierStylePara elsevierViewall">As I have stated up to this point&#44; decision-making is essential for a person&#39;s autonomy&#44; especially when dealing with a person with dementia&#46; If the diagnosis is early&#44; it is advisable to inform the patient about their condition and promote the preparation of a living will&#44; and even more so if their clinical condition becomes critical to the point of reaching an end stage of the disease&#44; in which their capacity for agency and autonomy are greatly weakened&#46;</p><p id="par0165" class="elsevierStylePara elsevierViewall">By assessing the decision-making capacity of a patient with dementia we can determine aspects whether the patient is able to give informed consent&#44; participate in the research&#44; manage their finances&#44; live independently&#44; plan for future health-related decisions&#44; among others&#46;<a class="elsevierStyleCrossRefs" href="#bib0090"><span class="elsevierStyleSup">18&#44;19</span></a> It cannot be assumed that patients with dementia lack decision-making capacity&#44; and therefore this type of assessment is relevant&#46; Even if they had an evident impairment of this capacity&#44; their autonomous characteristics and capacity for agency would be present&#8212;even if at a very reduced degree&#8212;in order to express their understanding or select certain preferences&#46; The functional assessment should include an assessment of the person&#39;s baseline cognitive status&#44; and the assessments should be specific to the patient&#39;s particular situation&#44; as they cannot have an overall scope&#46;</p><p id="par0170" class="elsevierStylePara elsevierViewall">These assessments are carried out with the patient and in the company of their family members and primary caregivers&#46; It is also essential that the clinician be well informed and keep meticulous records&#46; It is crucial to strike a balance between respecting the patient&#39;s autonomy and acting in their best interest&#46;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">19</span></a></p><p id="par0175" class="elsevierStylePara elsevierViewall">There is a tool&#44; called MacArthur Competence Assessment Tools for Treatment&#44; which is used to assess the validated competence of everyday decision-making in patients with dementia&#44; and it is useful in helping to understand whether or not there is a functional deficit &#40;for example&#44; money management&#41;&#46; It also makes it possible to assess the complexity of the problem&#44; as well as the risks and benefits of solving it&#46; The tool is based on a semi-structured interview that helps doctors to perform assessments of a patient&#39;s competence&#44; autonomy and decision-making capacity to give their consent to a treatment&#46; The process provides the patient with information about the medical or psychiatric condition that requires intervention&#44; the type of treatment recommended&#44; its risks and benefits&#44; as well as other possible treatments and their likely consequences&#46; During this process&#44; the patient&#39;s understanding&#44; appreciation and reasoning regarding treatment-related decisions are assessed&#46;<a class="elsevierStyleCrossRefs" href="#bib0100"><span class="elsevierStyleSup">20&#44;21</span></a> Therefore&#44; this scale makes it possible to assess how much knowledge the patient has about their condition and treatments&#44; so as not to overload the caregivers with decision-making&#44; and to preserve the patient&#39;s autonomy to consent or refuse treatments and to define a therapeutic ceiling&#44; among other things&#46;<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">22</span></a></p><p id="par0180" class="elsevierStylePara elsevierViewall">Understanding and integrating the importance of advance decisions helps us to safeguard and uphold the autonomy of a patient with dementia&#44; serving as a guarantee for making the right decisions&#46; Helping to ensure the safety of these patients through the implementation of theoretical and practical frameworks that recognise their limitations is a means of ensuring respect for their dignity&#44; and for the value they have in society&#46;</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0110">Conclusions</span><p id="par0185" class="elsevierStylePara elsevierViewall">The increasing number of diagnosed cases of dementia means that we have to confront important and specifically ethical issues related to what it means to live a good life and the importance of being respected as a unique human being&#46; To guarantee this&#44; it is necessary to understand how a person with dementia is autonomous in terms of self-governance&#44; and accept that they are people who can make choices based on their own thoughts&#44; judgements and deliberations&#44; never assuming that they do not have decision-making capacity without having carried out an exhaustive assessment or by taking a holistic&#44; rigorous and empathetic approach&#46;</p><p id="par0190" class="elsevierStylePara elsevierViewall">Open and effective communication&#44; good relationships with family members and caregivers&#44; an appropriate approach to problems&#44; and respect for people and their diversity&#44; are the principles that should guide the care of patients with dementia&#46; This is particularly important in a clinical setting&#44; where there are significant gaps and asymmetries in relationships due to the different states of vulnerability of the people with dementia&#46;</p><p id="par0195" class="elsevierStylePara elsevierViewall">Despite having presented several arguments defending the recognition of autonomy in people with dementia&#44; there are still a number of problems to be clarified&#44; which indicates the need for further philosophical&#44; medical and ethical analysis&#46;</p></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0115">Funding</span><p id="par0200" class="elsevierStylePara elsevierViewall">No funding was received for this article&#46;</p></span></span>"
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        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Introduction</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Dementias constitute a group of diseases that notoriously affect people who suffer from them&#44; especially in terms of their independence and decision-making&#44; leading the caregiver to assume or make various decisions about the patient&#46; However&#44; in the past this was explained by the fact that there was a theoretical and narrative insufficiency around patients with dementia&#44; which led us to ignore that they still conserved their decision-making capacity as well as their autonomy&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Objective</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">This text proposes to defend the existence of autonomy in these patients and a way about how we can take care of it and preserve it in the medical field&#44; through an ethical position based on the care and recognition of vulnerability&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Methodology</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">An approach focused on the ethics of care and vulnerability by Ronald Dworkin&#44; Emmanuel Levinas and Corine Pelluchon focused on the person with dementia&#46; I introduced a scale that allows assessing autonomy and decision-making in people with dementia&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Results and discussion</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">To guarantee the dignity of the person with dementia&#44; it is necessary to understand how they are autonomous&#44; in terms of self-governance and seeking to reduce asymmetries in relationships&#46; In addition&#44; always include caregivers and family members in decision-making&#46;</p></span> <span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Conclusions</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">People with dementia are autonomous in an individual or personal sense and deserve respect&#59; Although they are in a state of vulnerability&#44; there are different mechanisms focused on their care&#46;</p></span>"
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        "resumen" => "<span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Introducci&#243;n</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Las demencias constituyen un grupo de enfermedades que afectan notoriamente a las personas que las padecen&#44; especialmente en t&#233;rminos de su independencia y toma de decisiones&#44; llevando a que el cuidador asuma o tome varias decisiones sobre el paciente&#46; No obstante&#44; en el pasado esto se ve&#237;a explicado porque hab&#237;a una insuficiencia te&#243;rica y narrativa en torno a los pacientes con demencias&#44; lo que conllevaba a ignorar que todav&#237;a conservaban su capacidad de toma de decisiones&#44; as&#237; como su autonom&#237;a&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Objetivo</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">Este texto defiende la existencia de la autonom&#237;a en estos pacientes y una v&#237;a acerca de c&#243;mo podemos cuidarla y preservarla en el &#225;mbito m&#233;dico&#44; a trav&#233;s de una posici&#243;n &#233;tica fundamentada en el cuidado y el reconocimiento de la vulnerabilidad&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Metodolog&#237;a</span><p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Se realiz&#243; un abordaje enfocado en la &#233;tica del cuidado y de la vulnerabilidad de Ronald Dworkin&#44; Emmanuel Levinas y Corine Pelluchon centrados en la persona con demencia&#46; Posteriormente introduje un instrumento que permite valorar la autonom&#237;a y toma de decisiones en personas con demencia&#46;</p></span> <span id="abst0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Resultados y discusi&#243;n</span><p id="spar0050" class="elsevierStyleSimplePara elsevierViewall">Para garantizar la dignidad de la persona con demencia hay que comprender la manera en como es aut&#243;noma&#44; en t&#233;rminos de autogobernanza y buscando disminuir las asimetr&#237;as en las relaciones&#46; Adem&#225;s de siempre incluir a los cuidadores y familiares dentro de la toma de decisiones&#46;</p></span> <span id="abst0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Conclusiones</span><p id="spar0055" class="elsevierStyleSimplePara elsevierViewall">Las personas con demencia son aut&#243;nomas en un sentido individual o personal y merecen respeto&#59; aunque est&#233;n en un estado de vulnerabilidad&#44; hay diferentes mecanismos enfocados en su cuidado&#46;</p></span>"
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Original language: English
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