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Care, support, disability and dementia

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

Promoting the concept of care and support

In addition to discussing access to rights and equal recognition before the law, it is important to consider the level and quality of care and support for people with dementia. According to an OECD report (2015, cited by Shakespeare et al. 2017) dementia is still one of the conditions that receives the lowest quality of formal care in the developed world. This is particularly significant when we consider that a lot of informal care and support (which more often than not is essential) is provided by families, friends and neighbours. It is also a major concern for many people living with dementia, especially for those with more advanced dementia. We might therefore ask whether recognising dementia as a potential disability would lead to any improvement in the care and support (both informal and professional) of people with dementia. This is a matter of concern, especially if we acknowledge that the social model of disability, which developed out of the disability movement, promotes autonomy as one of its most central values. The concept of care has been criticised recently, in relation to dementia, as being too narrow and potentially leading to the framing of people with dementia as having certain needs of a more medical nature and rendering them passive. For this reason, wherever possible we refer to care and support in the broader sense. However, in certain places in this text, the debate is fundamentally about the provision of care and this is therefore reflected in the terminology used.

Questioning the focus on autonomy

Within the social model of disability, care and dependency do not appear as priorities. In a previous section of this discussion paper, we have looked at the importance that is attached to independence, both in daily life and in legal frameworks such as the CRPD. We fully support efforts to promote more independence and rights for people with dementia for whom care is often an integral part of their lives. However, due to the nature of dementia, and the range of impairments that are associated with it, it is essential to reconsider what it means to be dependent upon relations of care, whilst still being able to exercise agency.

Recognising dementia as a potential disability should therefore also involve an attempt to reinstate the importance of care and the validity of certain forms of interdependency. For example, a person with dementia may be dependent upon his/her partner for care or support but the partner may be emotionally dependent on him or her. According to Boyle (2014), the concept of interdependency represents a departure from current definitions of agency which tend to be ‘over-individualistic’. She points out that ‘throughout our lives, all of us go through varying degrees of depend- ence and interdependence’ (Boyle citing Tronto 1993, p.135). Interdependency therefore describes the way in which people are never fully independent and always rely in some ways on others. Taking this perspective allows us to question relations of ‘dependence’ and not consider these as problematic per se.

To explore this idea of care and interdependency, which may appear paradoxical22 at first sight (in the context of the social model of disability), we will draw on Eva Feder Kittay’s work on the ‘ethics of care’. Kittay (2011) describes how taking relations of care and interdependence into account when developing theories of justice provides the means to achieve more autonomy for people with disabilities. The principle of justice reflects the moral obligation to act on the basis of fair adjudication23 between competing claims. It is linked to fairness, entitlement and equality. An important principle of justice, proposed by Aristotle more than two thousand years ago, is that “equals should be treated equally and unequals unequally” Gillon (1994). In other words, in some situations (e.g. when a person has an impairment and experiences disability), it would be right to treat a person differently (unequally) as treating him/ her in the same way as others would actually be unfair.

Kittay draws attention to traditional schools of thought which take justice as a starting point for reflection on the position of the moral agent (in this case, the person with a disability). She explains that this results in a tendency to conceptualise this person as ‘an independent, autonomous self who is equal, or potentially so, to all moral agents’ (Kittay 2007, p.4) and calls for dependency to be reinstated as a central part of any human relation. For Kittay (2011), assistance is a resource, not a limitation. She suggests that the relation of care, should be perceived as supportive, rather than paternalistic, adding that:

“paternalism is the only alternative to autonomy when autonomy is the norm of all human interaction” (Kittay 2011, p.55).

Therefore, if certain aspects of the social model of disability were to be applied to people with dementia experiencing disability, this might challenge the current over-emphasis on the importance of autonomy. It might also contribute towards a more nuanced understanding of disability. Such nuances are brought about through the re-evaluation of dependency and by recognising the validity of individual experiences of impairment.

During discussions linked to the preparation of this paper, a member of the EWGPWD emphasised the importance of such an approach to care. Based on her own understanding of care in dementia, she emphasised the need to distance herself from paternalism. Her use of certain terms in relation to her own experience of dementia such as ‘requiring support’ and ‘care partner’ are in keeping with this transformation of our understanding of care. A distinction was also made between being ‘cared for’ and ‘caring about’. ‘Caring for’ sees the person with dementia as a passive recipient of care. ‘Caring about’ reflects a relationship that is dynamic and involves give and take, in which the person with dementia and the care partner interact in a relationship with each playing a ‘caring’ role. These roles such as husband, wife, partner or friend would have existed prior to the diagnosis of dementia. In this way, she emphasises equality in moral status and enablement as part of the construction of meaningful relations of care. This is echoed by Boyle (2014), in the context of ‘assisted autonomy’, who highlights the importance of promoting supportive relations of care.

Care as a new opportunity to improve the recognition of disability within society

Recognising the importance of the relation of care and support, and of the experience of impairment, provides an opportunity to improve the inclusion of people with dementia in all aspects of life. Indeed, Kittay (2011) explains that ‘the scope of care extends beyond intimate relations’ and ‘can introduce new values into the public domain’. An ethics of care should therefore be a central part of any message to the public if dementia is to be recognised as a potential disability. The importance of a revaluation of the relation of care was also expressed by some people with dementia:

“Care should be enabling, something that enhances my autonomy and allows me to participate in civil society, whilst promoting my dignity. For this to be possible, future therapists and healthcare professionals must be properly trained, and a more holistic, person-centred approach to both formal and informal care should be promoted.

For me personally, this would focus on meaningful activities (e.g. based on the arts and relaxation) and a reduction of psychoactive medication to regulate mood and anxiety. Such person-centred care can bring about improvement and better account for the wishes of people with dementia” (both extracts from a member of the EWGPWD).

In contrast to the establishment of meaningful and ena- bling relations of care, Kittay highlights a certain set of behaviours that she considers unhelpful:

“dependence may in various ways be socially constructed, and unjust and oppressive institutions and practices create many sorts of dependence that are unnecessary and stultifying” (Kittay 2011).

Instead, she argues in favour of ‘cooperative, respectful, attentive relations’ (2011, p.55). We can therefore conclude from these two statements, and from the statements in the previous section, that it is not sufficient to argue for care as a means to support independence, or to give too much importance to autonomy, as is sometimes the case in the social model of disability. Rather, it is essential to question the relation of care itself, and differentiate those relations of care that are disabling from those that are enabling.

Person-centred care and enablement

Person-centred care, which emerged from the work of Tom Kitwood, has been described as involving the tailoring of a person’s care to his/her interests, abilities, history and personality (Alzheimer’s Society, 2017). Indeed, person-centred care appears to be a valuable means to enable, or sustain as much as possible, the active involvement of people with dementia in decisions related to care. In this framework, relations of care are established in such a way as to over- come the impact of a ‘malignant social psychology’, which is associated with a process of ‘othering’ of the person with dementia following the progression of neurological impairment (Kitwood 1992). According to Kitwood (1992), this process of ‘othering’ creates and reinforces a distinction between us and them, jeopardising the experience of empathy between the person with dementia and his/her carer, but also between the person with dementia and the rest of the world (see also section 5.2 on stigma). Indeed, in the context of a ‘new culture of dementia care’, Kitwood (1997) explicitly recommended considering dementia primarily as a disability. He suggested that how a person is affected by dementia depends crucially on the quality of care. Care and support should therefore be central to any discussion about the recognition of dementia as a potential disability.

Indeed, person-centred care could be seen as a step towards sustaining a broader ‘ethics of care’25 (an idea that we mentioned earlier in this section). As such, it could apply to many different types of care and support, regardless of who or with what means it is provided (Morris, 2001). Reducing the impact of otherness by reinforcing empathy towards people with dementia may therefore be a means to both promote the dignity of people with dementia and respect their human rights. Morris further argues26 that an ethics of care should allow people to state their opinion and participate in decisions which affect their lives.

The ‘ethics of care’ debate has implications for formal/paid care for people with dementia. It also has direct implications for how paid carers are educated and trained. The recognition and promotion of agency as a concept and how that rolls out in practice in the formal care sector need exploration. This will undoubtedly give rise to ethical questions about the extent to which formal services set parameters on the enablement of people with dementia.

We also need to bear in mind criticisms that have been made about such concepts in relation to disability, which may be particularly relevant with regard to dementia. To broaden the discussion, we should examine in more depth a point made by Morris about participation in the provision of care (2001, p.15):

“Whatever “care” is – whether it is in the form of formal services, cash payments, or personal relationships – if it does not enable people ‘to state an opinion,’ ‘to participate in decisions which affect their lives,’ and ‘to share fully in the social life of their community,’ then it will be unethical.”

Morris’s statement, which rightfully highlights the importance of enabling choice, begs a series of questions about the limits of enablement, such as:

  • — What if such an emphasis were to lead to misunderstandings about the difference between ethical and unethical care?
  • — What about care which is simply performed to the best of a carer’s ability, with due consideration for dignity and agency, but unsuccessfully (in terms of recognising and promoting agency)?
  • — Would the non-fulfilment of such objectives be perceived as unethical?
  • — What if the socio-economic context makes it difficult for both the carer/supporter and the person with dementia to establish an effective relation of care and support?
  • — Should these be considered unethical relations of care and support?

Some of these reflections about the social context have been considered by Gilleard and Higgs (2010) in relation to negative perceptions of impairments in later life and the impact this may have on care and support. We still have a lot of issues to explore but it is nevertheless clear that dependency and care/support should not be perceived as interfering with the recognition of dementia as a potential disability.

Key messages

  • —New ‘socio-emotional’ approaches to agency and the exploration of these new approaches could be a better means to account for the wishes of people with dementia with regard to their own care, support and lives in general.
  • —It is nevertheless important to acknowledge that in the case of more advanced dementia it may be more difficult (but not impossible) to ‘listen to the voice’ of the person with dementia.
  • —Recognising dementia as a disability is not only a matter of claiming rights, autonomy and independence. It should also address care and support needs, and give more focus to a positive conceptualisation of interdependency.
  • —Promoting care may appear to challenge the idea that disabilities are the sole result of ‘oppressive institutions and policies, prejudiced attitudes, discrimination, cultural misrepresentation, and other social injustices’.
  • —Improving the lives of people with dementia, as well as the recognition of their needs and associated disabilities, comes with the establishment of an ‘ethics of care’ to use Kittay’s term, and a nuanced understanding of care, dependency and interdependency, as well as the importance of 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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