[Geriatric Care 2017; 3:6815] [page 41] Ethics and aging: focus on living will for patients with dementia Alberto Sardella, Laura Vernuccio, Floriana Cocita, Florenza Inzerillo, Ligia J. Dominguez, Mario Barbagallo Geriatrics and Long Term Care Unit, University of Palermo, Italy Abstract Today dementia certainly represents a public health priority with a huge global impact on wordwide population. However, clinical and social issues related to demen- tia have long been marginalized. The actual high prevalence of dementias requires also to face issues from a bioethical perspective, regarding how to deal with demented patient’s disposition. There are currently no specific guide- lines on the national territory regarding whether to draw up a living will by a patient with dementia, neither about the informa- tive role of physicians during the progres- sive story of the disease. Introduction In 2015 more than 46 million people were affected by dementia. This amount is estimated to almost double every 20 years, increasing to 131.5 million by 2050. 1 Alzheimer’s disease (AD) is the most com- mon form of dementia and it possibly con- tributes to 60-70% of cases. In 2006 the worldwide prevalence of AD was indicated in 26.6 million. It was also estimated that this number would quadruple by 2050, so that 1 out 85 subjects would be living with the disease. 2 These numbers well point out how today dementia certainly represents a public health priority with a huge global impact on wordwide population. However, clinical and social issues related to dementia - especially to AD - have long been marginalized by the interna- tional scientific community and society in general. Dementia was often configured as integral part of aging or rather a taboo sub- ject. Moreover, the absence of a cure, net of symptomatic therapies currently in use, has certainly played a decisive role, which has led to simply conceive dementia as an inescapable destiny. We should not forget that dementia, by definition, 3 is a syndrome caused by a number of progressive illnesses that affects on different levels cognitive functions, behavior and the ability to inde- pendently perform everyday activities. In this context, the risk is to receive a diagnosis of dementia only at an advanced stage, often when even behavioral and psy- chological symptoms are already exacerbat- ed and the burden both for patient and care- giver has increased. The actual high prevalence of demen- tias (especially AD) requires to face with new problems and to decide as well on issues for which there are no immediate answers. It is especially difficult for family members and caregivers who often have to make these decisions on behalf of the patient. As a matter of fact, subjects with dementia, compared for example to patients affected by different medical conditions, likely have little space to express their will, due to the progressive cognitive impairment which makes them less and less aware of their pathological status. Discussion From a bioethical perspective, self- determination clearly represents a cardinal principle in the doctor/patient relationship. The question of self-determination in sub- jects with dementia is actually an area of debate. 4 While, according to the law, the right to self-determination of every adult citizen must be respected, on the other side cognitive disabilities progressively affect their capacity to make decisions. 5 A widely accepted definition of deci- sion-making capacity 6 is based on the fol- lowing strongholds. The patient should: i) understand relevant information on the treatment, including the risks and the bene- fits; ii) be able to assess the situation and its consequences; iii) be able to evaluate the different therapeutic alternatives; iv) know how to communicate a choice. Generally to evaluate these skills two different approaches can be taken in account: to create ad hoc tools (question- naires and interviews) or to adapt neuropsy- chological test batteries normally used in the assessment of cognitive impairment. 7 A proper evaluation, indeed, should not leave aside those cognitive functions known as executive functions, involved in several aspects of daily life. Neuropsychological tests of complex abilities such as attention, memory, frontal functions, language and visuospatial abilities should be incorporated into capacity assessments. Moreover a deep psychopathological assessment it is also crucial to exclude the presence of a psychiatric condition or per- sonality disorder which could affect sub- ject’s self determination. In the precise order to respect the patient’s right to self-determination, scien- tific community and international politics have recently begun to discuss the proposal for a living will even to subjects with dementia. This will basically configures the possibility to decide before being no longer able to do so and its use is well known espe- cially in cases of euthanasia. In this context, living will appears to be one of the most suitable instruments to ensure greater respect for the will of a demented patient along his disease’s pro- gression. However, as previously pointed, dementia is a story that is written over many years (on average, ten) during which is gradually established an inability to make even the most basic decisions of daily life. It is therefore necessary to evaluate when a living will should be proposed to a patient who has been taken in care for cog- nitive impairment (Figure 1). It could be a proper choice by the physician to discuss this opportunity early in the disease, when the subject is still able to understand and perhaps make plans. It should also be remembered that pre- cisely in the early stages of the disease the patient appears to be more vulnerable, due to several changes he/she is experiencing which involve his/her cognition and gener- ate a real psychological burden. It would be strongly recommended a specific work on the disease awareness in order to make wise and weighted decisions about the future. In this context could play a key role not only the quality of the doctor/patient relation- ship, but also a correct diagnosis disclosure by the physician, the trust and support from his family and eventually a psychotherapeu- Geriatric Care 2017; volume 3:6815 Correspondence: Alberto Sardella, Geriatrics and Long Term Care Unit, University of Palermo, Italy. E-mail: albi.sardella@gmail.com Key words: Living will; dementia; Alzheimer; geriatrics. Received for publication: 24 May 2017. Accepted for publication: 3 July 2017. This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0). ©Copyright A. Sardella et al., 2017 Licensee PAGEPress, Italy Geriatric Care 2017; 3:6815 doi:10.4081/gc.2017.6815 Non-commercial use only