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Human rights and opportunities

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

Disability, dementia and rights

Nation states and international institutions alike have recognised that people with disabilities require legislation to have their rights upheld. People with disabilities are a minority group in society who are deemed to experience discrimination, inequality and exclusion.

In many countries, legislation on human rights, equality and disability is highly relevant to people with dementia. General data on how people with dementia specifically utilise national legislation is not available. However, it is likely that it is not routinely used as a way of upholding rights or addressing the inequalities and discrimination that people face. There are a number of reasons for this. One such reason is that historically dementia has not generally been viewed as a disability for the reasons already described. According to the UK Dementia Engagement and Empowerment Project16 (DEEP 2016), there is ‘confusion and ignorance’ with regard to people with dementia, rights and disability law. DEEP states that people with dementia are often unable to insist on getting what they are entitled to by law and many are reluctant to frame their issues in terms of rights, even if they are aware of them.

From an international law perspective, a number of pieces of legislation are relevant. The focus of this section is on one specific piece of international legislation on disability, namely the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

The main components of the Convention on the Rights of Persons with Disabilities

The CRPD is an international treaty passed by the United Nations in 2006 and ratified (made legally binding) by 168 countries worldwide (including 27 European Union member states). The essence of the CRPD is to promote and protect the rights of people with disabilities. It aims to ensure their enjoyment of human rights and equality under the law and represents a legal framework for applying generic human rights legislation that is meaningful for people with disabilities. It is far-reaching and calls for fundamental change in terms of society’s approach to understanding and responding to disability (Mental Health Foundation 2015).

The CRPD adopts human rights principles (Article 3, General principles). It defines disability as including “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (United Nations 2006).

Convention on the Rights of Persons with Disabilities and dementia

There are 38 cross-cutting articles in the CRPD, all of which are relevant to people with dementia. Specific articles that are highly relevant include:

  • — Article 9: Accessibility (ensuring accessible environments, transport, information and services),
  • — Article 19: Living independently (choosing where to live, having access to supports to live in community),
  • — Article 25: Health (right to quality health services),
  • — Article 26: Habilitation and rehabilitation (maximising independence via comprehensive habilitation and rehabilitation services),
  • — Article 28: Adequate standard of living and social protection (the right to adequate standard of living and social protection),
  • — Article 29: Participation in political and public life (having the equal right to participate in public life).

It is worth specifically highlighting Article 12, ‘Equal recognition before the law’. This is extremely important for people with dementia as it refers to the person with disability as having legal capacity (decision-making ability) on an equal basis in all aspects of life. It also includes a section on supported decision making which respects the person’s autonomy, will and preferences. This differs from substituted decision making/guardianship models where someone else can have the authority to make a decision on a person’s behalf. Article 12 promotes and protects legal personhood (Crowther 2016) and the autonomy of people with dementia who otherwise would have been considered as lacking capacity. It is highly relevant as people with dementia often find their ‘autonomy automatically undermined or removed following diagnosis or who do not presently enjoy access to independent advocacy for support with major decisions such as in relation to heath, financial matters or their fitness to drive or travel’. However, the Mental Health Foundation (2015) paper states that it is unclear if there are any existing mental capacity legal frameworks in the world that are fully compliant with the CRPD. This is partly because it requires a total supported decision-making legal regime, which poses significant challenges in the case of people with advanced dementia (and profound intellectual disabilities). Shakespeare (2017) also concludes that the wording and implications of Article 12 are ‘very hard to elucidate or implement practically’. The implications of Article 12 have been subject to considerable scrutiny and debate elsewhere (see for example the work of the Essex Autonomy Project (2014 & 2016)).

Convention on the Rights of Persons with Disabilities and dementia advocacy

While acknowledging that international legislation is only one element of bringing about change, the CRPD is very relevant for people with dementia from a number of perspectives. The history of the disability rights movement indicates that disabled people have not only success- fully advocated to have their rights enshrined in a specific international legal instrument but that they have used it successfully as a catalyst for change in many countries across the world. Quinn (2009, p.2), one of the architects of the CRPD, argues that the real added-value of the CRPD is its ability to trigger ‘a new kind of disability politics worldwide’.

In a similar way, dementia advocates can utilise the CRPD as an instrument for social change and as a potential advocacy tool. Furthermore, regardless of their status as being inside and/or outside of the disability rights movement, the CRPD can be used by dementia advocates in realising people’s human rights, altering how dementia is perceived and influencing how policy and services are developed.

Crowther (2016) argues that the use of the CRPD as a tool for social change could be particularly useful in countries to achieve practical outcomes in access to health and everyday services, reduction in the use of restraint and anti-psychotic medication and the availability of high quality social care and support. The CRPD is particularly relevant to addressing stigma, discrimination and social isolation that is commonly associated with the lived experience of dementia. Crowther (2016) sees stigma as a barrier to the participation in society of people with dementia and to achieving the social change necessary to secure their inclusion and well-being.

Shakespeare et al. (2017) agree that whilst people with dementia will vary in terms of their willingness to be identified as disabled, they, like other groups in society, can still use the CRPD as a ‘tool to advance their rights’. Dementia Alliance International (2016) suggests that Alzheimer organisations and self-advocacy organisations can use the CRPD to lobby and advocate for dementia policies and future plans to reflect the CRPD principles and articles. It can be utilised to guarantee that people with dementia are enabled to participate as equals in developing policy.

Furthermore, Alzheimer organisations can also use the CRPD to hold national governments to account, in terms of their progress with its implementation, to the United Nations (UN). In the United Kingdom, two reports were submitted to the UN Committee responsible for the CRPD in 2017, co-produced with people with dementia. These reports outlined key issues regarding the lack of compliance with the CRPD as it relates to people with dementia (Alzheimer’s Society 2017, Dementia Policy Think Tank et al. 2017). The issues raised by the Dementia Think Tank’s report (2017) are cross-cutting and include themes such as stereotyping and prejudice, accessible transport, independent living and community inclusion, accessible care and work. The Alzheimer’s Society (2017) concludes that the stigma, prejudice and lack of understanding about the condition, as well as discrimination on multiple grounds including age and gender, compound an existing postcode lottery17 of services for people affected by dementia in the United Kingdom.

In conclusion, an international convention in the form of the CRPD, combined with a range of other advocacy tools, offers a meaningful opportunity for people with dementia to move away from being ‘trapped within the dominant medical discourse’ (Shakespeare 2017, p.4). However, using it in a meaningful way requires more effort and time as highlighted by the EWGPWD18. While members of the EWGPWD were strongly in favour of recognising dementia as a disability they raised concerns about how the rights associated with this could be realised in practice and be of benefit to the lives of people with dementia on a day-to-day basis.

Key messages

  • —National and international law has relevance to the lives of people with dementia to ensure their rights are upheld.
  • —The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is one important piece of international legislation that is relevant to help people with dementia enjoy human rights and quality under the law.
  • —Article 12 of the CRPD, recognition before the law, is critical. It states that the person has legal capacity (decision making ability) on an equal basis in all aspects of life.
  • —The CRPD is a tool that dementia advocates, Alzheimer and other organisations can use to advocate for change.

Policy in practice

The recognition of dementia as a potential disability result- ing in the right to “reasonable accommodation” (e.g. in relation to employment, mobility and housing), and the difficulties surrounding the translation of ideas and attitudes into actual practice, were highlighted recently in relation to nurses who develop dementia. In an article, which appeared on the BBC news website, Dreaper (2017) reported discussions which took place at the Royal College of Nursing’s (RCN) Annual Congress in Liverpool (United Kingdom). The RCN decided, on the basis of a vote, that nurses who have dementia should be supported to continue their work for as long as they are able. Some members nevertheless raised concerns about nurses who have dementia putting others at risk. However, Jo James, a dementia nurse from London, put this in perspective, pointing out that dementia does not lead to instant loss of capacity or disability.

“A dementia diagnosis is likely to signal the end of a nurse’s professional life. In a single moment they will go from nurse to patient, regardless of the severity of their dementia or how it’s affecting them. We have robust laws in place against discrimination – but dementia is often seen as the exception to the rule and stigmatised” (Dreaper 2017).

National laws are important in seeking to ensure that conventions are respected and properly implemented. Important discussions are also taking place at European level (e.g. in relation to the Accessibility Act). Similarly, the Disability Strategy 2017–2023 of the Council of Europe (2017) seeks to achieve equality, dignity and equal opportunities. It does this by targeting action and policy development, involving civil society organisations and organisations of people with disabilities, in five key domains:

  1. participation, co-operation and coordination,
  2. universal design and reasonable accommodation,
  3. gender equality,
  4. multiple discrimination and
  5. education and training.

The European Disability Strategy 2010–2020 (European Commission 2010), on the other hand, seeks to empower people with disabilities and calls for consistency. It identifies actions at EU level to supplement national actions, whilst focusing on eight main areas. These include:

  1. accessibility,
  2. participation,
  3. equality,
  4. employment,
  5. education and training,
  6. social protection,
  7. health and
  8. external action.

There is plenty of commitment to making a positive change in the lives of people with disabilities. However, existing measures (e.g. to promote accessibility) are not always carried out consistently, or implemented correctly. Similarly, they do not always sufficiently account for the needs of groups of people with certain impairments (which would include those typically associated with dementia).

At a more local, grass roots level, several groups of people with dementia that are part of the DEEP network in the UK have been involved in a project called ‘Our Right to Get Out and About’. The aim of the project was to make rights meaningful in the day-to-day lives of people with dementia (and their carers/supporters). It focused on the accessibility of buses and trains for people with dementia, and getting a disabled car parking dispensation (known as the ‘Blue Badge’ scheme). The groups have engaged with public transport providers, and local and national govern- ment to lobby for changes in accessibility and information regarding transport that takes into account the cognitive impairments and disabilities that dementia can cause.

The social model/human rights principles have emerged in policy, specifically in relation to national dementia strategies, albeit in a limited number of countries. The second Scottish National Dementia Strategy (SNDS) made very explicit reference to human rights principles. These permeated not only the development but also the implementation of the SNDS. The Scottish Dementia Working Group was one of the key actors in contributing to the development of the policy which followed a rights based approach.

It is encouraging to see, in addition to high level guidance, strategies and even local initiatives, the recent development of fairly concrete guidelines and recommendations (e.g. linked to specific professions or work situations). Mental Health Europe, for example, has produced a toolkit on Article 27 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) to guide employers, human resource personnel, employment support services, and any other interested stakeholders, on how to apply a human rights-based approach to work and employment for people with psychosocial disabilities. At the same time, it is important to distinguish between a conditional right (e.g. the right to carry on working but not to put other people at risk) and an absolute right (e.g. the right to be treated with dignity – which is not dependent on anything else). It may be difficult to achieve the right balance. There are likely to be strong differences of opinion but in a fair soci- ety, respect for everyone’s rights, non-discrimination and respect for dignity must be key objectives.

Whatever support is available for people with disabilities must be available for people with dementia. So with regard to cognitive impairment, if this affects a person’s ability to do things and be involved in society, reasonable adjustments must be made (e.g. to continue working). If that is not enough, a person must be entitled to financial sup- port for loss of income. The two approaches to support, which may reflect and stem from different policies, must be coordinated. It would be unacceptable, for example, for a person to lose his or her job because of impairments resulting in disability and then not be considered eligible for appropriate benefit/support.

Similarly, protective measures for people with disabilities must also be applicable to people with dementia. The latter should not be considered an exception due to the nature of their impairments.

The need to translate ideals and goals into coordinated policies, with appropriate funding behind them and effective monitoring, is essential for people with disabilities. People with dementia should be entitled to the same type and level of protection, respect for human rights and social inclusion as other people with disabilities. Any policies or practices which promote or condone a different treatment of people with dementia must be based on ethically defensible grounds.

Key messages

  • —Laws, regulations, conventions and strategies etc. promoting the rights of people with disabilities all need, at some point, to be translated into actual practice and real-life situations.
  • —It is important to ensure that such rights are respected and implemented in a consistent and fair manner. They must take into account the needs and wishes of people with dementia and balance these with the rights of other members of society.
  • —Initiatives are needed to make disability rights meaningful in the day-to-day lives of people with dementia (and of their carers/supporters). People with dementia and their carers/supporters must play a key role in such initiatives and in the development of policies and guidance.
  • Policies to promote the rights of people with dementia and disability must be coordinated, have appropriate funding and be monitored.

Capabilities and agency

So far in section 6, we have considered issues related to the promotion of the rights of people with dementia who experience disability and issues surrounding the possible consequences of having such rights. In this sub-section we will look at disability and dementia from a different perspective, namely that of capabilities. We will base this discussion on the ideas of the philosopher Martha Nussbaum (2011), amongst others and reflect on the concept of agency in relation to people with dementia in the frame- work of the CRPD.

But first, what do we mean by agency and capabilities? In its broad sense, ‘agency’ means ‘intention or consciousness of action [enacted by the agent], sometimes with the implication of possible choices between different actions’ (Barnard and Spencer 2002, p.891). Boyle (2014), on the other hand, defines agency as the ability to initiate social action or at least influence one’s own personal circumstances.

The concept of ‘capability’ stems from the theories of the economist Amartya Sen (in the early 1990s), which were later developed by the philosopher Martha Nussbaum (mentioned above). According to Harnacke (2013, p.769), “the capabilities approach views society as having to pro- vide certain capabilities for everyone, which are substantive or real opportunities, at an appropriate threshold level for each.” More concretely, Harnacke explains that frameworks such as the CRPD and the capabilities approach both aim for societal measures to empower individuals regarding their own abilities.

Very often it is assumed people with dementia have no agency. In this section, we explore how the concepts of agency and capabilities can be meaningfully applied to the specific experience of dementia. Indeed, as Eva Feder Kittay argued, “ensuring equal opportunity to people is admira- ble when people are in a position to take advantage of the opportunities on offer, but some who are disabled are not in this position” (2011, pp.55–56). This may be applicable to some people with dementia (due to the progression of the disease which often renders choice and empowerment increasingly difficult), especially for people with more advanced dementia. Hence, we will briefly review the capabilities approach and its limits, and then move on to consider new ways to extend the possibility of agency to people with dementia.

Nussbaum reminds us that these limits to inclusion are the fundamental challenges posed to philosophical theories of justice (2010). In her explanation, she provides three examples (case A, case B and case C) of adaptation of the legal framework to the needs of people with cognitive disabilities. These examples are structured around the participation of a person with cognitive disability in a jury for a trial (Nussbaum 2010, p.88).

  • —Case A describes how the participation of the person with a cognitive disability – which could easily include a person with dementia – is achieved by providing external support (e.g. by summarising documents to make them easier for people with dementia to understand). Useful guidelines can be found on the website of the DEEP network (see references section).
  • —Case B describes a person in a similar situation in which the impairment is more severe but the person can ‘communicate his or her preferences to a guardian, who can then exercise the function on his or her behalf’. Case B, as Nussbaum reminds us, is still ‘conceptually’ easy, even though it involves a series of challenges which must be overcome.
  • — Case C describes a situation in which communication between the guardian and the person with disability seems to be impossible. This is particularly interesting as it calls into question the very roots/ basis of inclusion and highlights some apparent limits to more conventional forms of inclusion. The challenge is perhaps for us to find ways to ensure equal citizenship for all.

In Nussbaum’s argument, case C calls for the intervention of a guardian who is ‘empowered to exercise the function on that person’s behalf and in her interests’, a measure often not taken (Nussbaum 2010, p.91). This highlights the apparent challenges to more conventional forms of inclusion. As we will see, these categories and the solutions proposed to ensure more equal citizenship are relevant to the issue of promoting the rights of people with dementia. Furthermore, we will see below that novel methods of communicating with people with dementia can enable them to be better heard and move towards greater autonomy and agency if they wish to, hence to move towards case A or B.

Indeed, recognising dementia as a potential disability, in keeping with the capabilities approach, makes it possible to access a framework which offers a structure to further enforce the rights of people with dementia, regardless of the level of impairment. In this respect, Toby Williamson (2015) describes the PANEL principles, in which the last letter of this acronym stands for legality of rights and the ‘recognition of rights as legally enforceable entitlements’ (Williamson 2015, p.12). Hence, raising awareness about the CRPD in relation to the rights of people with dementia enhances our ability to propose new and more appropriate possibilities for people with dementia to enact their rights as equal citizens. This includes their capabilities, as described by Nussbaum (2011).

The next step is therefore to find ways to ensure that the voices of people with dementia are better heard.

A wide range of methods and appropriate support should be considered to ensure that people with dementia can participate in and contribute towards society on an equal basis with others (addressed in more detail in Section 8). New approaches to inclusion could enlighten us about ways to achieve this. Boyle (2014) provides an interesting practical case and novel way of thinking about the agency of people with dementia. Based on research involving people with dementia and their carers/supporters, she criticises the over-emphasis on rationality and claims that we need a broader concept to understand the agency of people with dementia. Indeed, she argues that we need to take into account the way in which agency is exercised by people with dementia in a creative manner which was not previously considered, namely by looking at more ‘socio-emotional’ forms of agency. She sheds light on the way in which the wishes and desires of people with dementia are expressed through body language as well as through subtle emotional changes and changes in mood. As Boyle reminds us (citing Morris 2005), this is particularly relevant in the context of various relations of ‘assisted autonomy’ which are sensitive to such changes. Such sensitivity could be a step towards fulfilling some of the capabilities listed by Nussbaum (2011) (e.g. in relation to sexuality and consent which reflects the third core capability, namely bodily integrity21).

Clearly, there are many possible novel and alternative ways to explore agency and these could be further explored in future research. Indeed, some of these capabilities might present very complex challenges with regard to enhancing agency and autonomy. Case C, described above, appears to be one of them. Moreover, Boyle (2014) highlights the need to explore this idea of socio-emotional agency among people with severe dementia. In many ways, exploring the wishes of people with the most severe forms of dementia touches on ongoing debates around the concept of personhood. Some of these debates have been explored earlier in this discussion paper and will be considered in the next section, particularly in relation to person-centred care.

In presenting both challenges but also new possibilities to reinforce the agency of people with dementia in a framework of rights such as the CRPD, Boyle’s approach is helpful. It offers a new way of understanding the wishes of peo- ple with dementia and supporting them to perform their agency in novel, alternative ways. More research and the promotion of more positive attitudes towards people with dementia, in a framework of human rights and equality, could further open the door to greater enablement of people with dementia. Arguably, recognising dementia as a potential disability could favour such discussions in situations, and for example in public debates, in which dementia often remains invisible.

Key messages

  • —The capabilities approach (based on the work of Sen and Nussbaum) is a framework of protected rights that allows people to be ‘empowered regardless of their own abilities’.
  • —The CRPD could, according to Harnacke, be considered as reflecting the characteristics of such a framework. It allows for people with dementia to have their rights recognised as ‘legally enforceable entitlements’ regardless of their actual capabilities. This represents a move towards equal citizenship.
  • —It may be helpful to combine such a framework with an exploration of novel ways to take into account the agency of people with dementia (e.g. building on Boyle’s concept of ‘socio-emotional agency’).
  • —Paying attention to subtle emotional changes, as well as to changes in mood, and to body language, may improve our understanding of the wishes of people with dementia.
  • —Exploring new ways to take into account the agency of people with dementia within a relevant framework of rights, such as the CRPD, may help ensure that people with dementia have the opportunity to take part in society and in decisions related to care and support.

 

 
 

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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