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PART 1 - Introduction

2014: Ethical dilemmas faced by carers and people with dementia

Dementia and the challenges it may bring

Dementia is a syndrome or set of symptoms, typically involving loss of memory, mood changes and problems with thinking, orientation, comprehension, calculation, learning capacity, language, and judgement (1). These symptoms tend to develop gradually over a lengthy period of time, as the brain becomes impaired due to damage from the underlying dementia condition (2). Dementia is not a diseaseper se. There are over a hundred types of dementia and most are caused by or associated with a specific disease, the most common one being Alzheimer’s disease (AD).

Although dementia is a medical condition, it has a social, psychological, emotional and economic impact on people’s lives. It affects people in different ways. Some of the apparent consequences of dementia are not due to biomedical factors alone (e.g. damage to the brain). Rather, they are influenced by the personality and make-up of the person with the condition, as well as the way that other people react towards people with dementia [1] and the way that society is organised (e.g. creating obstacles and failing to recognise or adapt to the needs of people with dementia). With appropriate social and healthcare support from governments and services, and consideration from other members of society, people with dementia can enjoy a relatively good quality of life. Many continue to live in their local communities and play an active role in society for a long time after the onset of dementia.

In the last few decades, people with dementia have spoken and written about their experience of living with dementia. They have shared their painful experiences, their fears and concerns but also their hopes and their desire to get on with life and remain active and valued members of society. There are numerous accounts of the negative impact of caring on people’s lives (often described as caregiver “burden”). However, carers [2] have also described the positive aspects of care such as the satisfaction they experience from knowing that they are returning the care they received earlier or from protecting the wellbeing, dignity and self-esteem of their loved ones. It is not always a case of people having either a positive or negative experience of living with dementia. Both kinds of experience may co-exist. Some people may nevertheless focus more on either the negative or positive aspects, with others adopting a pragmatic approach and simply trying to get on with life.    

Nevertheless, having dementia and living with or caring for a person with dementia almost inevitably involves certain challenges. The gradual loss of various abilities linked to memory, concentration, planning, orientation and abstract thought has an impact on everyday activities and routine tasks. Often, things which were done almost automatically in the past become problematic.  In addition, people may find themselves in new situations, confronted with issues they had not previously considered and sometimes faced with difficult decisions.

A number of factors affect how well people cope with challenges, such as having different personal resources (psychological, emotional and financial) and coping skills, whether appropriate support is available and different philosophies of life. People with dementia who live alone may face some additional challenges, because they do not have anyone present to support them. Difficulties can arise in all kinds of places such as in people’s homes, the doctor’s surgery, residential care settings, shops and various public places. In addition to those directly faced with a problem or challenge, other people may be involved or affected such as doctors, relatives, friends, neighbours, shopkeepers and health and social care professionals. Difficulties and subsequent challenges can take many forms and affect people in different ways. In this booklet, we are looking at a specific type of difficulty or challenge, namely an ethical dilemma.

Dilemmas and ethical dilemmas

A dilemma literally means a problem offering two possibilities, neither of which is acceptable. People in modern Western societies may be familiar with the idea of dilemmas (3) because of a tendency to think in either/or terms (i.e. something is good or bad, possible or impossible, a person is happy or sad, agrees or disagrees etc.). However, many “dilemmas” have more than two unacceptable outcomes. So, technically speaking, we should really call them trilemmas and polylemmas but for the sake of simplicity we will stick to the well-known term “dilemma”.

An ethical dilemma is a situation in which moral principles or values are in conflict. This makes it difficult to interpret or decide what would be the right or wrong course of action or attitude to take. In addressing ethical dilemmas, we are deliberately focusing on some of the more problematic aspects of living with dementia but with the aim of enabling readers to address these more positively and with greater confidence. Before looking at ways to deal with ethical dilemmas, it is helpful to reflect on what is meant by ethics and how should we decide what is right and wrong.

[1] We are using the term “person with dementia” to refer to people who have or are believed to have dementia (bearing in mind that many people with dementia have not been diagnosed or informed of the diagnosis).                                   

[2] We are using the term “carer” to refer to people who provide, organise or coordinate care for a person with dementia on an unpaid/non-professional basis (e.g. out of solidarity, a sense of duty or because of family or friendship ties). However, we understand that not all carers experience their relationship to the person with dementia in terms of care or being a carer.



Last Updated: Monday 08 February 2016