The ‘D’ word: Reflections on the relationship between stigma, discrimination and dementia

Introduction

Dementia¹ is a major cause of disability amongst older people and constitutes one of the most serious challenges facing the older population, their families and health and social care services in the developed world (Care Services Improvement Partnership, 2005). Currently, over 700,000 people in the UK live with dementia, a figure projected to rise to over 1.7 million by 2050 (Alzheimer's Society, 2007). Over two thirds of people with moderate to severe dementia live in the community with a third living in long term care; over two thirds of all care home residents have dementia and one in three people aged over 65 will die with the condition (Dening & Milne, 2008). It has been estimated that dementia costs the UK economy over £17 billion per annum², a cost borne primarily by family carers who provide intensive support to over three quarters of people with dementia living in their own home (Milne et al., 2001).

Despite a growing recognition that the socio-political location of people with dementia is replete with disadvantage and that more needs to be done to improve services for users and carers, only recently has the negative role of stigma been recognized (Milne, 2009). As dementia has now been declared a national policy priority and that “… reducing the high levels of stigma” associated with the condition is one of the key objectives of the National Dementia Strategy, it is timely to review the impact stigma and discrimination have on the lives and well being of people with dementia and explore ways to address them (Department of Health, 2009; National Audit Office, 2007).

Stigma, discrimination and dementia

One of the most prominent characteristics of dementia discourse is the pivotal role that stigma plays in defining the experience of the condition (Alzheimer's Society, 2008a). The World Health Organization, for example, recognizes that, “… stigma against older people with dementia … is widespread and its consequences far reaching” (Graham et al., 2003). It further acknowledges that stigma accentuates and deepens the distress experienced by the person with dementia, “adding to their existing disability” (Thornicroft, 2006). Although it has been observed that all those “assigned a label of mental illness, take on an identity that is stigmatised” (Keating, 2006), this appears to be a particularly powerful facet of dementia. It confers a “master status” on the individual; “having dementia” not only becomes the most prominent aspect of the person's life but it also serves to subsume all their other attributes and features into a single stigmatized identity (Goffman, 1963).

The combined impact of the dementing illness itself – cognitive decline and memory loss – and the negative responses to diagnosis and symptoms, profoundly undermine psycho-social well being and quality of life. Loss of independence, roles and identity, and feelings of low self esteem, value and worth are widely noted in research with people with dementia (Husband, 1999). There is considerable evidence that receiving a dementia diagnosis allocates the older person to a new lower status social group and results in social dislocation, a process that is a function both of the condition itself and responses to it (Katsumo, 2005; Lindesay 2008). Relatives are also exposed to the consequences of secondary stigma including isolation (Betts Adams & McClendon, 2006; Bowling & Gabriel, 2007). Self-stigmatization, a process whereby stigma is absorbed by the individual, also plays a role. It encourages people with dementia to remain invisible and withdraw from social contact (Milne & Peet, 2008). The use of negative language – the “face” of public stigmatization – influences not only the perception the person has of themselves but encourages them to hide their illness from others (Age Concern England, 2007). Dementia is commonly associated with terms such as, “losing it”, “senile”, and “ga ga”. Research that has been done around early diagnosis with users themselves identifies stigma as a major barrier to help seeking and accessing support, treatment and information (Alzheimer's Society, 2008a; Iliffe et al. 2005).

The role that stigma plays is, however, only part of the story of disengagement and disadvantage. Age discrimination is also a key factor (Age Concern and Mental Health Foundation, 2006). Dementia is predominantly an illness associated with later life; the risk of developing Alzheimer's disease increases significantly with age. Whereas only 5% of people aged over 65 are affected, this figure rises to 25% of those aged over 85 (House of Commons Committee of Public Accounts, 2008). As an age-related disorder older people with dementia are thus exposed not only to the stigma associated with mental illness but to age discrimination as well – the so-called “double whammy” (Godfrey et al., 2005).

Age discrimination represents an important element of the way in which older people experience later life and gain access to socially-valued roles and resources. It functions to reinforce age-related norms and perpetuate assumptions about old age and ageing as a process (Bytheway, 1995). Old age stereotypes are almost universally negative and are associated with dependency, limited social and sexual lives, and incapacity to exercise autonomy and self determination (Victor, 2005). Age discrimination has been identified as having a pernicious impact on the well being of older people in the UK and as a multi-level barrier to opportunity and inclusion (Age Concern and Mental Health Foundation, 2006). Specifically, it contributes to feelings of worthlessness and despair, it lowers self-esteem and expectations, limits access to services, and underpins a lack of respect shown to older people (Age Concern and the University of Kent, 2005). Ageism – a manifestation of age discrimination – has been defined as, “… an ideology, which condones and sanctions the subordination and marginalisation of older people within society and legitimises (or at least ignores) poor quality care, neglect, and social exclusion” (Victor, 2005). Ageism can also intersect with other dimensions of social inequality such as gender, race or disability. Older women for example, report that they feel “overlooked” and “useless”, a manifestation of the combined impact of sexism and ageism (Milne & Williams, 2000).

Ageist attitudes combine with the process of stigmatization identified above to undermine the development of good practice amongst professionals and care staff, and contribute to the defeatism, therapeutic nihilism and enduring pessimism that routinely characterize services for people with dementia (McCleery, 2008). Assumptions that dementia is a normal and inevitable part of the ageing process and that it is not amenable to intervention are also common features. Such attitudes serve to undermine the autonomy and decision-making capacity of people with dementia. They have also been implicated in abuse and neglect, premature institutionalization, and inadequate care (Alzheimer's Society, 2009; Hall et al., 2007). A number of studies show that service users with advanced dementia are often perceived as “effectively dead” or as “pitiful victims” who need looking after (Milne & Peet, 2008). That people with dementia may be capable of enjoyment or of experiencing a satisfactory, or even good, quality of life is unthinkable (Livingstone et al., 2008). These views are reflected in, and in turn mirror, the widespread public perception of dementia as an incurable condition about which “nothing can be done” (Kissel & Carpenter, 2007). The invisibility of many people with dementia to public gaze amplifies this tendency and contributes to their social exclusion and low status (Age Concern and the Mental Health Foundation, 2006).

What can be done to challenge stigma and discrimination?

Whilst space does not permit a lengthy exposition of the myriad ways that stigma and discrimination can, and should, be addressed, it is useful to highlight a number of key ingredients. As stigma permeates every dimension of the lives of people with dementia it is axiomatic that a strategy to reduce its impact needs to be multi-pronged and to incorporate a wide constituency.

Policy has a pivotal role to play. The Government now acknowledges the discrimination faced by older people, including those with dementia, and the negative impact it has on their lives and health (Social Exclusion Unit, 2006). A “Commission for Equality and Human Rights” is now fully established and the introduction of the Equality Bill will help in achieving the goal of age equality – securing equality in citizenship, access to opportunities and outcomes for people of every age (Age Concern England, 2007; Government Equalities Office, 2009).

As already noted, the 2009 National Dementia Strategy has specifically identified “addressing stigma and raising public awareness about dementia” as one of its primary objectives (Department of Health, 2009). Presenting positive images of people living well with dementia in the media could make a significant contribution to demystifying the condition and challenging negative attitudes that currently pervade public opinion. High profile individuals such as the author Terry Pratchett, speaking openly about having dementia, is perhaps the start of this process. Recognition that not all people with dementia are late stage and incapable of functioning relatively normally, is particularly important. Incorporating dementia into the family of public health issues would also be a positive and inclusive step (Age Concern and the University of Kent, 2005).

Improving the quality and range of services for people with dementia and the treatment and care they receive is an essential component of addressing disadvantage and discrimination. This is also a key objective of the National Dementia Strategy: it highlights a need to ensure that services are flexible, reliable and accessible; range from early intervention to specialist home care; and are responsive to personal needs and preferences (Department of Health, 2009). Specific attention needs to be paid to the quality and consistency of care homes including the need for qualified, well trained and supported staff, an appropriate skill mix and the adoption of person-centred approaches (Dening & Milne, 2008). Highlighting the potential for staff to achieve high levels of job satisfaction is one element of a strategy to improve the status and image of work with people with dementia and challenge the secondary stigma that is often associated with it (Brodaty et al., 2003). The achievement of positive outcomes with residents is another (Clare et al., 2008; Milne, in press 2010).

There is also a linked challenge relating to supporting carers of people with dementia who have, for many years, received poor quality and fragmented care for both themselves and the person they support (Milne et al., 2001). Both the National Dementia Strategy and the Carers Strategy recognize the need to improve services for carers (Department of Health, 2009; HM Government, 2008). Despite some recent improvements there remains a long way to go if carers are to achieve the aim of the Strategy that support will, “… be tailored to individuals' needs, enabling carers to maintain a balance between their caring responsibilities and a life outside caring, while enabling the person they support to be a full and equal citizen” (HM Government, 2008).

Addressing the stigma commonly associated with a dementia diagnosis is an important issue in its own right. As both short and longer term adjustment to a diagnosis depends on how well it is made and disclosed, effective training of clinicians tasked with dementia diagnosis can make a significant contribution to user well being (Clare et al., 2008). There is considerable evidence that clinicians struggle to communicate a diagnosis honestly and sensitively, often colluding unhelpfully with patient denial and avoiding the use of terms such as “dementia” or “Alzheimer's disease” preferring “memory problems” or “early ageing” (Kissel & Carpenter, 2007). This serves to fuel stigma and results in confusion and misunderstanding amongst patients. The paucity of training many clinicians receive around dementia care and treatment is, in part, to blame for this, a situation that is indicative of its marginal status in the health professions and in health care more widely. This issue is currently being addressed by the professional bodies but there remains a significant knowledge and training deficit. Additionally, there is a specific training agenda around the needs of people with dementia in mainstream service settings. This is an issue that has recently been highlighted in a report that identified very poor, even neglectful, care of dementia patients in acute hospitals (Alzheimer's Society, 2009).

Challenging self stigmatization is also important. There is some evidence, for example, that cognitive behaviour therapy can help people with an early diagnosis of dementia to view their condition less negatively, address stigmatizing thoughts and feelings, and cope better; it also plays a role in assisting users to come to terms with their diagnosis (Husband, 1999). The capacity of self help activities to perform a similar function is also relevant. One such network identified its benefits to users as including: “a belief that there is life after diagnosis”, “helping adjustment to a dementia diagnosis” and “rebuffing stigma”. The network also helps to build self esteem and promote psychosocial well being (Clare et al., 2008). The potential of user generated knowledge to inform the development of a strategy to challenge stigma and discrimination is underutilized at present, an issue that needs to be addressed if future efforts are to be both credible and effective.

The way that dementia is conceptualized undergirds the way it is perceived and treated; its status as a progressive medical condition has been criticized for creating and deepening stigma (Kitwood, 1997). Recent attempts to re-conceptualize dementia as a disability and to locate it inside the social model of disability has helped to provide a “new” way of understanding the condition and challenge stigma (Gilliard et al., 2005). As a framework, this is wholly consistent with the promotion of personhood³ and acceptance that it is our approach to people with dementia – the language we use to describe the condition and people with it, and the service environments we create for them, that disempower, dehumanize, marginalize and ultimately stigmatize, not the condition itself (Cantley & Bowes, 2004). There is a general consensus that person-centred care – based on the concept of personhood – is care that, “… is focused on users; promotes independence and autonomy; involves services that are reliable, flexible and chosen by users; and tends to be offered by those working in a collaborative team” (Innes et al., 2006). It hardly needs saying that this approach not only promotes better quality care but also makes it more likely that stigmatizing attitudes and practices will be identified and challenged. It has more recently been suggested that incorporating principles of citizenship into our understanding of dementia would extend the reach of these goals further. It is argued that an emphasis on promoting citizenship, rather than personhood, would facilitate a shift into the realm of universal rights and entitlements rather than needs and “otherness”, incorporating people with dementia into ordinary society rather than continuing to locate them on the margins (Bartlett & O'Connor, 2007).

The last issue that requires attention is that of research. Dementia research is big business although much of its focus is on developing pharmacological treatments and/or cures for the condition rather than improving care. In terms of how research could contribute to challenging stigma at least four topics spring to mind. There is emerging work which suggests that people with moderate to severe dementia can experience good quality of life (mentioned above) or even “successfully age” and that their quality of life is as amenable to enhancement as those without dementia (Livingstone et al., 2008). More work is needed in this field as it challenges widely held assumptions that people with severe dementia must, by definition, have poor life quality. It also gives a positive message about dementia.

The second area is to conduct more research into developing effective non stigmatizing treatments (Graham et al., 2003). Much more is known about which treatments are damaging to people with dementia, e.g., inappropriate use of anti-psychotic drugs in care-home residents, but less work has been done on acceptable psychosocial interventions particularly in care-home settings (Alzheimer's Society, 2008b; Fossey, 2008). Research that extends our understanding of the subjective experiences of people with dementia, particularly in its advanced stages is a third, hugely underexplored area (Milne, in press 2010). Lastly, we need research that captures the most effective ways of intervening to bring about a lasting reduction in stigma and discrimination against people with dementia and their families. Clearly, most of these suggested improvements to services, care and research require, at least in part, additional investment. There is an inherent tension between delivering the changes that are embedded in the matrix of policy commitments outlined above and funding; at a time of recession this poses a particular challenge.

Conclusion

Dementia is widely acknowledged to be a profoundly stigmatizing condition and as the number of people with dementia increases in the UK the need to address the pernicious influence that stigma has become ever more urgent. As Graham et al. state, “… Stigmatising is a common human characteristic, it is pervasive and subtle in its effects, and it is difficult to counteract without clear and conscious strategies” (2003). Since it is now well evidenced that people with dementia experience the combined jeopardy of age discrimination and stigma, both issues need to be addressed in anti-stigma strategies. As dementia is an issue likely to touch all of our lives sooner or later, it is in our interests and those of future generations to tackle the challenges now and invest in ways to reduce the stigma associated with dementia and improve the lives and care of people with the condition and their families.

Notes

1. The most common types of dementia are Alzheimer's disease, vascular dementia, mixed dementia, and dementia with Lewy bodies. Alzheimer's disease accounts for more than 60% of the total.

2. These costs include a figure of £6 billion – this is the estimated cost of family carers providing support to relatives with dementia.

3. Personhood is a term developed by Tom Kitwood in his work on dementia care; it means the uniqueness of that individual, what it essentially means to be that person.