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Working towards an inclusive society

2017: Dementia as a disability? Implications for ethics, policy and practice

In this section, we discuss the impact which re-framing dementia as a disability might have on social inclusion for those with a diagnosis. We consider the kinds of measures and shifts that are needed for all people with dementia to be fully included in society. In doing so, as mentioned earlier, we necessarily move away from individual ‘personhood’ as a concept, to consider dementia also in the wider contexts of human rights and intersectionality (i.e. different social identities such as gender and race which overlap and are generally associated with discrimination).

Two broad questions arise here. The first relates to the potential advantages for people with dementia of moving away from the still-prevalent medical model of dementia as a disease, towards a social model of dementia as a disability27. The second relates to the problems which may then arise for those who do not wish to accept the label of disability in order to achieve social inclusion. Such opponents may well argue that they do not want to be socially included as people with disabilities, but simply as people on the same terms as anyone else. People with dementia clearly have the same right as anyone else to be fully included in society. It might, however, be argued that re-framing dementia as a disability is not necessarily the best way of achieving this for everyone.

This section covers the ethics of social inclusion, the part played by the medical model of dementia in perpetuating social exclusion, the importance of intersectionality in thinking about social inclusion for people with dementia, and the appropriateness or otherwise of the ‘dementia-friendly communities’ concept. It considers how re-framing dementia as a disability might enhance social inclusion for people with dementia. Finally, it looks at the potential shift that is taking place in the dementia field from thinking in terms of the dependency needs of people with dementia, to their unassailable human rights.

The ethics of social inclusion

We start from the assumption that people with dementia have a fundamental right to be included in all aspects of society in which they wish to participate. This right should not diminish as dementia progresses, although the wishes of the person concerned may, of course, change over time.
 Working with a social model of disability, we can see that many existing obstacles to full social inclusion and citizenship for people with dementia are not directly caused by dementia itself. Instead they are the result of external factors and social attitudes. If these factors and attitudes were to change, then both the nature of dementia and the experience of having dementia would also change. Indeed, Kitwood (1997) suggested that if social responses to people with dementia were appropriate and support- ive from the start, then much of the ‘disease progression’ currently taken to be inevitable might be avoided. This is a profoundly ethical issue. From the perspective of ethical principalism (Beauchamp & Childress 2001), non-maleficence (avoiding causing harm) towards people with dementia and ensuring beneficence (doing good whilst trying to balance possible benefits against risks and costs), equality and justice, requires the full social inclusion of people with dementia. We will argue below that we can only ultimately achieve this if we move from thinking about the needs of people with dementia, which can be met by others, to a concept of inalienable human rights (i.e. which cannot be taken or given away).

Why are people with dementia socially excluded? The contribution of the medical model

As outlined in section 4.2, the medical model of dementia places the ‘problem’ of dementia within the individual mind and body of the person with the diagnosis. This suggests that additional contributing factors such as the reactions of others are of little importance. The impact of social, psychological and environmental factors on the experience of people with dementia has been recognised in numerous forms over the past two decades. Examples include Lawton’s concept of ‘excess disability’, Kitwood’s (1997) work on the involutionary (meaning ‘inward turn- ing’) spiral of dementia and Post’s work on hypercognitivity (which was mentioned earlier).

Bartlett & O’Connor (2010), for example, highlight the ways in which the experience of dementia affects social status. Birt et al. (2017, p.200) refer to ‘discourses of deficit’ which stigmatise people with dementia and negatively impact on the recognition of them as citizens with rights. A growing body of work has demonstrated, for instance, that, post-diagnosis, walking may be negatively reframed as undesirable ‘wandering’, which is then constructed as a ‘symptom’ of dementia (Brittain et al. 2017). Kate Swaffer, the founder of Dementia Alliance International, and herself a person living with dementia, has argued persuasively that the language used to describe people with dementia is a large part of the way in which stigma is perpetuated (Swaffer 2014). Much of the terminology noted by Swaffer, which is detrimental to the interests of people with dementia (e.g. demented, victim and sufferer), has been inherited from the medical model of dementia.

A diagnosis of dementia, in the context of the medical model, therefore attaches a stigmatising ‘disease label’ to the individual. This sets him or her apart from the rest of society. McGettrick and Williamson note that for other groups of people with disabilities,

“The medical model was used…to explain disabled people’s exclusion from mainstream social and economic life, their oppression (especially through the use of institutional care) and their lack of recognition as having basic human rights” (Mental HealthFoundation 2015, p.14).

George (2010) notes that,

“The everyday language we use to describe dementia shapes our perceptions of brain ageing and even con-tributes to what has been called the “social death”of those most severely affected.”

The extent to which a person diagnosed with dementia to some extent ‘becomes’ his or her diagnosis is problematic, particularly when we consider the many differences between people with dementia and each person’s experience.

Intersectionality and social inclusion

One of the most striking aspects of the medical model of dementia is its assumption that people diagnosed with dementia cease to belong to any other reference groups or interest groups. As mentioned earlier, Takala (2009) points to the dangers of such a one-dimensional view. Such a view fails to consider that people with dementia continue to belong to a wide range of other social groupings (e.g. based on gender, social class, sexual orientation, ethnicity, religion, political belief, former occupation, roles within families, hobbies and interests, and many more including having other disabilities in addition to dementia).

The term ‘intersectionality’ is used to refer to this difference among people with dementia. It was originally used by feminist theorists to reflect how in everyday life one is not only a woman, but also, perhaps, black, living in poverty and having a chronic illness. Indeed, there can often be as much that divides women as unites them, unless these additional facets of experience are also taken into account (Yuval-Davis 2006). People with dementia continue to be treated as if they were all the same (on the grounds that they share a common diagnosis). Commonalities between people with dementia and others (including other groups of people with disabilities) are less frequently noted. Paying attention to potential commonalities might lead to a more active/political/advocacy-based approach on the basis of rights and discrimination etc.

Dementia-friendly communities or universal design?

The recent move toward the creation of ‘dementia-friendly communities’ (or DFCs) may be seen as a positive one. It involves environmental and social change, rather than expecting the person with dementia to change and adapt. However, what is friendly to a person with dementia is, in most cases, friendly to all. Equally, things that every- one finds difficult about contemporary life (such as noisy, crowded, uncomfortable places, the fast pace of technological change, and confusion created by poor design lighting and signage in public spaces) are also likely to be upsetting and anxiety-provoking for someone with dementia. For these and other reasons, some people with dementia find the term ‘dementia-friendly’ somewhat patronising. This has led to debates about what is really needed – dementia-friendly communities, or a more universal ‘design for living’ that is adapted to everyone’s needs and wishes. As Swaffer (2014, p.713) comments,

“I have been uncertain that ‘dementia-friendly communities’ is the right phrase as I am worried it encourages division rather than includes people.”

A member of the EWGPWD also talked about her desire to ‘get rid of’ the term dementia-friendly communities (DFCs) and instead talk about an inclusive society. She feels that DFCs are exclusionary and that dementia-friendly should not be part of our language. A DFC might be considered one which compensates for the problems people with dementia do have, but without adding new ones. However, steps such as taking more time, offering alternatives, giving a helping hand, where it is needed and appreciated, should be markers of any humane community, not one unique to the needs of people with dementia.

In this context, people with dementia should not be singled out as in need of special measures. A society in which people offer to help anyone experiencing difficulties is one to aspire to. Many of the barriers or difficulties experienced by people with dementia could also be experienced, in some way or to some extent, by other members of the community (e.g. getting lost, experiencing sensory overload, forgetting a name or address needed in order to complete an errand or appointment and not being able to find the right bus or train etc.). Reflecting on our own experiences of this nature may therefore be one of the best ways to develop empathy with people who have dementia. This should also foster social inclusion within mainstream communities. This is better than putting people with dementia in separate hermetically-sealed safe spaces.

At the same time, we need to find out what people with dementia experience as barriers to social inclusion and not simply assume that everyone finds the same things difficult. Age-friendly initiatives, for example, do not necessarily respond to the needs of many people with dementia (who are increasingly being diagnosed at a younger age but also have certain needs which are not as relevant to older people in general). This is another reason why it is important to involve people with dementia in decisions about issues potentially affecting their inclu- sion in society. This is core to the human rights model of disability.

Initial work to develop dementia-friendly communities (DFCs) has had the benefit of drawing attention to a very real problem, namely the extent to which many existing attitudinal, physical and architectural environments dis- advantage and are inhospitable to people with dementia. In this, the DFC initiative is to be welcomed as an early indication that the social model of disability is beginning to have an impact on thinking about dementia. It might, nevertheless, be argued that dementia-friendly or dementia-accessible communities imply that people with dementia are fundamentally different and have problems that are not shared by other members of the community. We still need to hear much more from people with demen- tia themselves – including those whose voices are not currently being heard – about their responses to initiatives such as DFCs. The DFC concept and various DFC initiatives vary considerably across Europe. Some DFCs have a fairly limited scope whereas others emphasise rights, citizen- ship and the active involvement of people with dementia (Alzheimer Europe 2015, Williamson 2016).

Levels of participation and inclusion

Clearly there are different degrees to which any one person with dementia might be socially included. Arnstein’s ladder (Arnstein 1971) is often used to represent different levels of citizen participation, ranging from manipulation at the lowest level to full citizen control at the highest rung. DFC principles suggest that the views of people with dementia should inform the development of DFCs. If people with dementia are not actively involved in the design and delivery of particular interventions, these may be considered more tokenistic.

In the box below, we highlight six ways to include peo- ple with dementia in society in a meaningful way. These have been taken from an adaptation of Arnstein’s ladder by Capstick et al. (2016) to apply to the social inclusion of people with dementia.

These approaches to social inclusion build on a perception of different levels of participation in relation to the exercise of power which date back almost 50 years. Nevertheless, most (with the exception of therapy and manipulation which have not been included in the box) are still relevant to the issue of social inclusion. In the original version, the means of involvement were presented as rungs of a ladder. This suggested a hierarchy. But it has been argued that ‘the process of increasing participation should not be simplified to a one-dimensional parallel of climbing a ladder’ (Maier 2001, p.716). Not everyone is interested in the same level of involvement. One person may feel involved and valued as a result of having been informed about something, whereas another might prefer to play a much more active role. Each form of involvement should therefore be equally valued.

More recently, there has been an emphasis on patient and public involvement and a whole range of approaches to the involvement of people with dementia in research, policy making and service provision. This involves people with dementia working alongside researchers, policy makers and service providers on a more equal basis, albeit with appropriate support if needed (in keeping with the principle of reasonable adjustment). Such approaches are often described in terms of ‘co-production’, ‘co-creation’ and ‘citizen involvement’ to name but a few.

  • Citizen Power: forms of participation which involve having a genuine influence on public awareness or consciousness raising. The person with dementia has autonomous influence on others in society, and decides on the nature of the influencing activity (e.g. taking part in an action group or campaign) and its desired outcomes.
  • —Delegated Power: participants are helped to take part in an influencing activity or form of action involving contact with the wider community (e.g. writing a report; producing guidance).
  • —Partnership: the person with dementia is actively engaged with members of the broader community on mutually-identified projects which have a shared goal, or co-produced outcomes (e.g. giving feedback on a service or intervention).
  • —Placation: the person is involved in personally meaningful activity, but in a relatively passive role (e.g. being taken to events as a spectator or audience member).
  • —Consultation: activity initiated by others that involves exchange of information, and/or meaningful social interaction with persons with dementia, who are nevertheless recognised as equals, able to express of choice, and/or share decision-making.
  • —Informing: the person with dementia is given information intended to inform his or her choice about whether to take part in an activity or event or not. He or she may be told in advance about things that are going to happen, but not asked to make suggestions. Information provided is not necessarily in user- friendly format.

From needs to rights: biopolitical life and dementia

Following the work of Kitwood and others, it may be argued that much of the apparent progression of dementia is already the result of society’s responses and reactions. In this respect, anything that we can do to keep people with dementia socially included is, in itself, likely to reduce the deterioration that can result all too easily from loneliness, boredom, lack of interpersonal communication and absence of meaningful activity. It is not enough to move beyond merely ‘doing no harm’ in a context in which people with dementia are harmed daily by society’s response to them. We need to go further, moving towards ethical principles of equality and justice as well as beneficence.

The work of Agamben (1999) draws attention to the way in which civil society divides its citizens into those who have biopolitical life (i.e. the status of political beings) and those who are relegated to a lesser status of ‘bare life’ only (also described as a ‘state of exception’). Currently, many people with dementia are relegated to this state of exception, and it becomes increasingly likely as their circumstances change over time. The agenda may therefore need to shift to reinstating full human rights to people with dementia rather than attempting to meet their needs through initi- atives that give them in a passive role. Katz (2002) coined the term ‘experts by experience’ to capture the sense that older people, including those with dementia, are in the best position to inform others about what it is like to have the condition, what is needed in order to make improvements, and how to shape the kind of society they wish to live in.

Applying human rights principles to dementia promotes autonomy and decision making, which includes recognition of the right to take certain risks. Some members of the community, including many family members, do not consider it acceptable for people with dementia to take risks which may result in injury, or to make choices that others may see as resulting in a threat to their personal dignity. It may be argued, however, that preventing people from doing things which involve or result in some degree of risk is an abuse of human rights.

As Clough (2014) notes, a narrowly medical model of dementia, which is disease/condition specific, is no longer supported by evidence. Instead we need a biopsychosocial model of cognitive disability that is inclusive, and one that actively seeks social justice for and alongside people with dementia. We also need to recognise the personal experience of impairment, and the diversity of the experience, needs and interests of people with dementia. Shakespeare et al. (2017) advocate a human rights approach to dementia and disability, suggesting that this would open up space for collaboration between people with dementia and other disability rights activists.

Key messages

  • —There has been a shift of attention away from the medical model of dementia as a condition, requiring predominantly medical research and pharmacological remedies.
  • —The adoption of a social model or framework for thinking about dementia is being increasingly encouraged. A social model of disability, applied to dementia, reinforces the idea that we are all responsible for each other’s well- being or ill-being and that there is a great deal to be done to improve the lived experience of people with dementia.
  • —A social model framework for thinking about dementia and a human rights approach challenges concepts and practice concerning the development of ‘dementia-friendly communities’.
  • —Dementia is a human rights issue with equality and justice to the fore, and which locates those living with dementia within a socio-political context that is largely missing from current discourse.
  • —If everyone has the same human rights, then these rights are not compromised when someone has dementia.
  • —People with dementia may find it helpful and empowering to identify as a person with disability. However, a person with dementia should not have to accept the label of either disease or disability in order to have their human rights upheld.

 

 
 

Last Updated: Tuesday 13 February 2018

 

 
  • Acknowledgements

    The discussion paper “Dementia as a disability? Implications for ethics, policy and practice” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union
 
 

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