PEOPLE WITH DEMENTIA AND OTHER COGNITIVE DISABILIES: RELATIONALLY VULNERABLE OR A SOURCE OF AGENCY AND CARE?

• Date: 01 January 2019
• Author: Carney, Terry

I INTRODUCTION

Dementia is a rich site of social policy, legal and ethical questions. (1) Demographic ageing of the population profile has boosted the proportionate share of people in age bands prone to higher incidence of the dementias. (2) At the same time, neoliberal governance reforms to delivery of aged care and disability services have seen community-based or civil society initiatives favoured over a shrinking sector of state-provided or state-funded (and often fairly standardised) services. This is accompanied by preference for delivery of tailor made services under the direct control of recipients (personal budgets). Community care packages in aged care (3) and individualised plans and supports under the National Disability Insurance Scheme (NDIS) for people experiencing serious disability prior to aged pension age, (4) are two examples.

Not only is the social and community picture of the location, expectations and needs of older people with cognitive disabilities changing, there are dramatic changes in how disabilities are conceptualised, with the rise of social construction of disability under the 'social model' and the decline if not the death of the 'medical model' (of disability inherent in an impairment). This challenges some of the older items in the legal toolkit for advance planning in anticipation of incapacity (the comparatively recent development of the enabling tool of 'durable powers') or in managing its consequences (challenging the ancient tool of guardianship, derived from 13th century English prerogative powers and even earlier Roman law origins). In place of tools authorising substitute decision-making by someone other than the person with the cognitive impairment, the Convention on the Rights of Persons with Disabilities ('CRPD') calls for a new approach of supporting the person to make their own decision consistent with recognition of their will, preferences and rights. And while the CRPD's insistence on sending the old tools to the refuse tip has been resisted in practice, supported decision-making philosophy is infusing legal reform proposals and legislative initiatives, with even greater purchase outside the law (in the form of what is better termed 'decision-making support' (5)).

It is self-evident that the circumstances and life histories of people with a congenital cognitive impairment (intellectual disability 'ID') differ from those with acquired brain injury ('ABI') or mental illness. People with a dementia, along with those anticipating mental illness, are able to 'self-plan' for their future needs should their cognitive capacity decline or be temporarily impaired. They can meaningfully select and appoint someone with authority to act for them (enduring power of attorney, personal care or health care) or in the jurisdictions which permit it, appoint a 'supporter' to assist in realising future decisions. Neither someone with an ABI nor a person with ID realistically can use such self-planning tools. Instead some other person needs to request or take advantage of some other legal tools. Options include applying for adult guardianship or financial management appointments, taking advantage of any automatic but narrow 'standing authority' covering health decisions (provided in some jurisdictions to 'listed' persons such as spouses (6)), or turning to very limited tools such as Special Needs Trusts (which allow others to lay down viable financial plans for future care and support, free of unnecessary social security traps). (7) Guardianship presently is the most likely of these. This is because, while originally reformed in the 1980s in anticipation of heavy demand from deinstitutionalised ID residents decanted into community living, adult guardianship caters hardly at all to that group, but instead is actually invoked mainly for the aged, especially those in residential care due to dementias.

Because cognitive impairments implicate very different personal circumstances and social contexts, and present such different care and support needs, generalisation across the four main groups is quite perilous. Both in the application of theories (agency, vulnerability, rights perspectives) and in debates around community services and legal options, this article therefore concentrates on the circumstances and context of people with a dementia. So what is special about the case of the dementias, in say the way care and support needs arise? First the condition is of comparatively slow onset and arises after a person has developed relatively settled values, preferences and lifestyle. People with early dementia are also likely to have already formed (if not always maintained) a close interpersonal relationship of choice, though unlike someone with ID they are unlikely to have a living parent, with the closest blood relatives expressing care obligations most likely to be offspring (most commonly daughters) rather than siblings. Community care within the family home from informal carers such as partners or a member of the family living nearby (such as a daughter or son) thus is the setting accounting for the bulk of dementia care and for the majority of the time after diagnosis. This poses issues about how well the will and preferences of the person are respected in such settings, along with the operation of any substitute decision-making (whether informal or formal). Finally, the natural progression of the disease and the 'rising curve' incidence rates of dementias with older age, means that higher proportions of people with the most substantial dementia care needs will lie in the 'old-old' age brackets. Here the chances of the person living alone (through death/divorce) or with needs that over-tax the capacity of their 'live in' carers (due to their own infirmity or relationship strains), raise additional issues. Due to the pressures on family in late stage care, dementia for example accounts for a little over half (52%) of aged care residents. (8)

This article considers how theories of relational autonomy, vulnerability and human rights principles might inform thinking about the role of the law in both community care settings and in residential care, touching lightly on a few of the many questions. Questions such as: how well do family carers perform their informal support and decision-making roles? Are self-planning tools such as enduring powers under- or over-used? Can proxy-decision-making be avoided in late dementia? Is guardianship under- or over-used? Does or could the web of family and close carer relationships truly serve as a 'natural stabiliser' against risks of abuse and oppression? Can 'risk averse' policies of private sector aged care facilities in insisting on unnecessarily obtaining of substitute decision-making instrument (or guardianship) as a prerequisite of entry be changed through law reform, or is law relatively powerless?

The article argues that the richer concept of relational autonomy is a very useful analytical lens for understanding ethical, social and legal issues in dementia care, while its close companion 'vulnerability' also is of some assistance, despite its lack of definitional purchase. However their main contribution is in grounding discussion more closely in the 'lived lives' of people and the rich 'harmonies' sought to be built to better realise the will preferences and rights of people with dementia, while detecting and correcting for the 'disharmonies' in such relationships of care and support.

II WHERE STANDS LAW AND THEORY?

There are challenging conceptual issues entailed in theorising agency in the context of informal support, formalised supported decision-making or guardianship. (9) The same is true for the concept of vulnerability, (10) drawing as it does on similar 'networks' of reciprocal relationships of reliance and support. These can only be sketched here. (11)

A Relational autonomy and vulnerability

Situated in feminist scholarship of writers such as Martha Fineman, (12) relational autonomy framed not as an atomistic or purist classical liberal conception of human agency but as socially embedded networks of human interactions with and reliance on others (13)--has obvious appeal in describing the lived lives of people, whether they be with or without cognitive impairments. Likewise acceptance that everyone is vulnerable in the sense of needing the support of others at various points in their lives, as potential need rises or falls depending on life circumstances most obviously in early childhood and late in life.

The nub of relational autonomy for people with a cognitive impairment lies in its emphasis on realisation of real world participation in life, and genuine respect for the will and preferences of the person irrespective of their degree of impairment. (14) It seeks to ensure respect for the moral personhood of all, without regard to levels of cognitive impairment or capabilities of the person in engaging their environment. For Eva Feder Kittay, such moral personhood lies in the inherent relationships between the person with the impairment and others (such as family), irrespective of any (contested) 'lack of rationality and capacity to determine one's own good'. (15)

Vulnerability, usually conceived as a universal and fluctuating characteristic of the human condition, (16) has helpfully been said to comprise at least three analytically distinct (but overlapping) types: (17) those which are 'inherent' to the person; those which are 'situational'; and those which are 'pathogenic' (exacerbated by, or manufactured by, defective social policies) (18) of which more below when discussing safeguards and the care dilemma (Part ll D). Situational vulnerabilities are 'context-specific', and stem from (or are compounded by) 'the personal, social, political, economic, or environmental situation of a person or social group' and may be short or long-term.' (19) Both inherent and situational vulnerabilities are conceived as either latent...