Personal identity and personhood
2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
In this section of the discussion paper, we will explore the ethical implications of the changing definitions and conceptualisation of AD for personal identity and personhood. We will start at the level of the individual, and then look at relationships with others, which includes a closer look at stigma.
Receiving a diagnosis of Alzheimer’s disease (AD) is often associated with shock and despair (e.g. Johannessen & Möller 2011) and many older people are afraid of such a diagnosis (Corner & Bond 2004; Kekki & Mankkinen 2016). Why is that? Why doesn’t being diagnosed with diabetes or a cardiovascular disease, for example, evoke the same reactions? Perhaps AD is experienced as a threat to personhood and personal identity in a way that diabetes and cardiovascular diseases are not. Diseases involving mental impairment also tend to be more stigmatising than physical illnesses (Kendell 2001, McManus, Stubbings & Martin 2006). As the definitions and use of terms related to AD change, the questions that arise are: What do these changes mean to the person living with AD and to his/her personal identity, and what are the ethical implications of these changes?
AD dementia may be perceived as a threat to personhood, if personhood is conceived in terms of mental capacities such as autonomy and rationality. From a contextual and relational perspective, on the other hand, being a person means having the status of an “embodied agent”, an acting person living in a body within a historical and cultural context (Kitwood 1997; Hughes 2001). From this perspective, AD dementia need not be a threat to personhood, even though it typically involves changes related to psychological capacities and identity. On the other hand, this threat to personhood is also a threat to someone’s human rights being ignored or abused, through not being empowered to participate, through discrimination, by legal rights not being observed and through a lack of accountability by society and its organisations.
From a psychological perspective, a person’s identity is his or her sense of self, of being who he or she is. This sense of being who one is, of “I”, stands for continuity in life. Through passing years and changing life situations, I am still “I”, the person who hopes, dreams, remembers and acts. Identity is shaped throughout life, mainly though during childhood and youth (Erikson 1997). It is influenced by genetic dispositions, social relationships and significant life events. Life experiences and memories of the past are important parts of a person’s identity. AD does not necessarily touch upon these aspects of personal identity, as memories of important life-events and relationships in the distant past tend to remain vivid for quite some time. However, the ability to integrate these memories into a whole coherent life story usually decreases. In addition, the loss of the ability to recognise loved ones may also be associated with loss of identity. So-called self-referential thoughts and emotions (i.e. a person’s self-concept and feelings about her/himself) are important as well (Zinck 2008). People can be proud or ashamed of themselves, feel guilty or be content with what they have achieved. AD dementia may seriously influence such thoughts and emotions, since not being able to remember things or to retrieve memories may be at odds with a person’s self-concept and social role.
Against this backdrop, news about the presence of markers of AD, albeit in the absence of symptoms, may also cause some anxiety, perhaps making the perspective of the future seem gloomy and frightening. What psychological and emotional effect might such news therefore have on me? Well I might withdraw from society, or try to make the most of the healthy life I can still enjoy or perhaps be more practical and make plans for the future. Some people may start thinking of themselves as “sick” and take on the role of a patient even before the disease influences daily life. Others may start to feel that they are no longer capable of taking care of themselves or making decisions about everyday life. One extreme effect is that I might decide that life is not worth living and even consider suicide or euthanasia, where this is legalised (Draper et al. 2010). Opportunities for dialogue with experienced and knowledgeable professionals, combined with ethical procedures for the disclosure of information linked to risk, are needed to help ensure that people do not contemplate such radical measures on the basis of a poor understanding of the information provided, particularly concerning probability, risk and AD dementia.
People often use a range of self-protecting strategies and coping mechanisms to integrate various impairments into their new life situation and deal with challenges linked to those impairments (Steeman et al. 2006; de Boer et al. 2007). How people deal with those challenges, and perhaps also information about risk, depends to a large extent on their social relationships, attitudes within their social environment and society’s capacity to deal with diversity.
Relationships with others and the issue of stigma
The knowledge that a person has AD may trigger a variety of reactions amongst relatives, friends and acquaintances. Those who have known the person with AD for many years are particularly important. They know who s/he is; they share memories and life experiences. Their support is thus crucial to the maintenance of the identity and personhood of the person with AD dementia. However, family and friends often start to distance themselves following the diagnosis of a person with MCI or AD dementia (Werner 2005; Corner and Bond 2006). They may feel uncomfortable in his/her company and not know what to say or how to react, perhaps resulting in them visiting less often or not inviting the person to social events as often as they did in the past. This may undermine personhood.
Misunderstandings about legal capacity, combined sometimes with paternalistic attitudes and behaviour towards people with AD dementia, may also occur (Beard and Fox 2008). If other people no longer consider someone a person with capabilities and resources, then that person may start to think so too. The negative conception communicated by other people, which in many cases is linked to a devaluation of the person concerned, easily becomes internalised into a negative self-concept. Demeaning comments and acts may threaten the person’s self-esteem, making life seem like a continuous struggle to defend a sense of value (Steeman et al. 2007).
What happens at the interpersonal level (i.e. between individuals) may also occur at the societal level. In their own eyes, many people with AD dementia may still feel that they are the same person, even though their personality may be impacted by the disease and their self-esteem may fluctuate. Society, however, including the health and social system, may label them differently. This raises the question of who has the right and the power to define a person both from the viewpoint of personhood (“Am I still a person with dignity and rights in a socio-cultural context?”) and personal identity (“Who am I?”). In this respect, the concept of stigma is particularly relevant.
Goffman described stigma as something that reduces someone in other people’s minds from a “whole and usual person to a tainted, discounted one” (Goffman 1963, 12). It is a complex social phenomon impacting individuals, relationships and society. It typically involves labelling and attaching negative stereotypes to people who have a particular attribute, considering them as different and of less value and discriminating against them (Link and Phelan 2001 & 2006).
“One particularly troubling factor about the negative views about dementia that are still widely held is the way such views can lead to people living with dementia (both individuals with dementia and carers) feeling deeply stigmatised: as if the disorder were in some way a disgrace or discredit to them.” (Nuffield Council on Bioethics 2009, 60, §4.7)
“The phrase “coming out” is an accurate and resonant term … with all its associations with the gay rights movement. It feels like that for me. Some close friends expressed their concern that it was professional suicide to do it, and cautioned me to hesitate. In fact, I believe the degree to which they were correct to fear this for me is the degree to which the stigma does indeed exist.” (Ronan Smith, Vice Chair of the Irish Dementia Working Group 2015)
Stigma extends to family carers too in that they may feel stigmatised through their association to the person with AD dementia (MacRae 1999; Werner, Goldstein & Buchbinder 2010). Stigma can also be structural. This means that the negative stereotyping, devaluation and discrimination are inherent in the system. This is often unintentional but can nevertheless be harmful. Nearly one in four people with dementia hides or conceals their diagnosis, citing stigma as the main reason (ADI 2012). Moreover, people with dementia and carers often feel marginalised by society and sometimes by their own friends and relatives, with 40% reporting they are not included in everyday life (ADI 2012). In some cultures, the stigma of dementia is such that it can influence the marriage prospects of younger family members (ADI 2012).
The introduction of prodromal AD, MCI due to AD and preclinical classifications, that may also carry with them a stigma, has the potential to exacerbate these problems. Even though they do not have AD dementia, the label of AD may affect their autonomy and decision making, largely through paternalistic attitudes (reflected, for example, in concerns about them going out alone, driving and making decisions). However, attributes (such as AD) are not inherently stigmatising (Jones et al. 1984). Rather, it is the meanings that people attach to them which make them socially salient and result in them becoming a stigma.
Certain factors, such as fear or perceived threat, have been found to increase the likelihood of a particular attribute being considered a stigma (Jones et al. 1984; Stangor and Crandall 2003). Discrimination, as well as the fear of being discriminated against, plays an important role in stigma (Quinn, Williams & Weisz 2015). Discrimination can affect a person’s opportunities regarding life insurance, mortgages, other insurance premiums. With the new definitions of AD, this might, if appropriate measures are not taken, do so at an earlier stage than would have been the case previously. As Werner and colleagues state, ‘structural discrimination must end if all citizens are to receive truly fair and equitable health care services and benefits’ (Werner, Goldstein & Buchbinder 2010).
With the new definitions and growing knowledge about AD, the meanings that are constructed around it become more varied and nuanced, and an even larger group of people may feel that their identity and personhood are threatened. Link and Phelan (2006) emphasise that stigma always involves the exercise of power. With reference to the question raised earlier as to who has the right and power to define others, it is important that the new definitions of AD are widely discussed in the broader social context, that the voices of people at all stages along the AD continuum are heard and that specific issues are challenged if necessary. We can use our increasing knowledge about AD to provide people with different degrees of cognitive impairment with appropriate information, treatment and support, which reinforces their sense of identity and promotes respect for their diginity and personhood. The new definitions of AD and the new model of AD will hopefully lead to timely and accurate diagnosis which is an important step in providing appropriate treatment and support. The next two sections explore the ethical issues in these two areas.
Last Updated: Friday 10 February 2017