Adults at risk with dementia

Policy, practice and legislation has, throughout this millennium, developed to meet the challenges of protecting adults with dementia and their families and carers. Major national inquiries have prompted changes in all of these.

One particular Inquiry by the Mental Welfare Commission (MWC): Starved of Care - Mrs V, highlighted important lessons for Health Boards (and associated agencies). Mrs V died in a general hospital in December 2008 at the age of 80. She had dementia and was subject to a Compulsory Treatment Order (CTO) at the time. The MWC considered that Mrs V was not given the care, dignity and respect she deserved.

There were many issues in how she was treated and cared for including the following:

• Mrs V. was not allowed to eat and was distressed and agitated - the response was to sedate her
• there was concern about the amount, frequency and route of administration of medication and about the reasons for it being given
• a lack of adequate nutrition over an extended period of time was not addressed
• Mrs V lacked capacity to make decisions on her own
• Mrs V. was not considered for a single room which may have persevered her privacy and dignity
• there was a general apathy amongst the workforce towards people with dementia
• no dementia liaison nurse was involved
• relatives felt that they were asked to make decisions (which were the responsibility of professionals) over feeding.

To safeguard adults with dementia such as Mrs V. and to ensure high quality care and support, the protection of their rights is crucially important. Alzheimer Scotland's Charter of Rights (http://www.dementiarights.org/charter-of-rights) is essentially guided by a human rights-based approach known as 'PANEL' which is endorsed by the United Nations. This approach emphasises everyone's right to:

• Participate in decisions which affect their human rights
• Accountability of those responsible for the respect, protection and fulfilment of human rights
• Non-discrimination and equality
• Empowerment to know their rights and how to claim them
• Legality in all decisions through an explicit link with human rights legal

Through the last ten years or so, legislation has developed from a restrictive and limited set of legislations, to that of a comprehensive wide-ranging legislative framework.

Initially, there was a demand to have specific and suitable powers for adults with incapacity, which were framed in the 2000 Act, in particular for adults with dementia. Then there was a need for a new, bold and comprehensive set of powers in the 2003 Act, with new community based powers. Then to fill gaps in the legislative framework to protect adults at risk against harmers, new powers were created in the 2007 Act.

Protective provisions available to statutory authorities were initially to be found primarily in the 2003 Act and the 2000 Act. These provisions included a duty to inquire and removal of a mentally disordered person to a place of safety (2003 Act) and power to require an incapable adult to accede to a guardian's directions (2000 Act). The latter provision can be used for adults with dementia who lack capacity and where residential care may be required. However, there were no provisions in these Acts to exclude a perpetrator of abuse or to protect other vulnerable groups. This omission led to the 2007 Act, which provided a power to ban a harmer from being in an adult at risk's premises, and which sought to protect adults at risk outwith the range of mental disorder, such as those with physical disability.

The 2007 Act offered new options and new duties to protect adults at risk, significantly with serious mental disorder such as dementia. From national data (summary report of the Adult Protection Committees' Biennial reports 2008-2010), key user groups were older people (33.4%), those affected by mental illness (24.3%), and those with dementia (6.7%). Older people affected by mental illness and in particular dementia, feature strongly as a key group served by the 2007 Act.

In respect of legality, the Charter of Rights for People with Dementia and their Carers in Scotland states that:

"anyone acting for them must 'have regard for the principles and provisions of the Adults with Incapacity (Scotland) Act 2000. These principles are enshrined in Article 12 of the Convention on the Rights of Persons with Disabilities which sets out international standards in relation to legal capacity".

This highlights that each Act has a set of statutory principles which protect rights. Principles such as full participation, non-discrimination, equality and empowerment can be found in the 2003 Act (section 1 (3)).

The condition for the use of legal measures is found in the 2000 Act (section 1), where an intervention should only be taken on behalf of an adult with incapacity where this provides benefit and would be the least restrictive to the adult's freedom.

The MWC Inquiry 'Remember I'm still me (2009)' confirmed that people's freedom should be respected as far as possible and care homes must look at and change environments, practices and cultures that could be seen as overly restrictive. Care home staff also need to understand the rights of people with dementia and the laws and safeguards that exist to protect them. Social workers in regular contact with residential, day care and home care settings have a responsibility to inform, advise and support the staff wherever possible or necessary to improve care, support and protection or promote the rights of the person with dementia.

Supporting and protecting adults at risk, in particular those with dementia, while protecting rights, can take on a number of forms, aspects and challenges. Some adults may need support to respond to need and to manage risk; some need protection against risk arising from the effects of the mental disorders on health, safety, welfare, property and finances, and on others. Adults with mental disorder may need care and treatment on a voluntary or by exception on a compulsory basis; and harm, neglect or poor practice may be perpetrated by others on such vulnerable adults and their families, no more so than on those with dementia, as the Mrs V case illustrates.

Significantly, the common element, which draws the 2000, 2003 and 2007 Acts together, is mental disorder. This spans these Acts and confirms their impact on the health, welfare, safety and property of people so affected. Dementia is a mental disorder in terms of all of the acts, and therefore each of these Acts has something to contribute to people with dementia their families and carers.

The role of the social worker and the MHO has developed alongside the implementation of these Acts. Notably, social workers acting as Council Officers are central to the delivery of the 2007 Act and MHOs act as specialist practitioners in complex cases involving the support and protection of adults affected by dementia and their families and carers in the application of statutory powers of the 2000, 2003 and 2007 Acts.

The primary legislative framework for those affected by mental disorder is the 2003 Act. The Act has provisions across health, safety and welfare, which both support and protects persons with mental disorder, giving greater rights to services, and providing a range of powers in response to risk to the adult or the safety of other persons.

The three primary compulsory powers of the 2003 Act are:

• (a) a short-term detention certificate (s44);
• (b) an emergency detention certificate (s36); and
• (c) a compulsory treatment order (s63).

Depending on the adult's needs and risks, these provisions may be applied in isolation of each other or applied consecutively, may follow inquiry and investigation and can also be used where an adult has been removed to a place of safety (ss 293/294/297).

The 2003 Act however, has no civil powers against harmers, e.g. to ban a harmer from having access, now found in the 2007 Act. Nor has the 2003 Act powers to manage or protect finances or to protect property, to be found in the 2000 Act. However, where it is clear following an inquiry under the 2003 Act that action under the 2000 or 2007 Act is necessary the relevant Act would be used. Examples include welfare guardianship (s57. 2000 Act) or a banning order (s19. 2007 Act).

It may be the case with an adult with dementia, where the 2000 Act and the 2007 Act may have a dual application and focus. These Acts offer relative long-term provisions such as Welfare Guardianship (the 2000 Act) or a Banning Order (the 2007 Act).

The 2000 Act protects the health, welfare, finances and property of an adult incapable of making decisions by reason of incapacity. The Act provides authority to treat mental disorder (s47), but it does not offer compulsory power in this regard, and certain medical treatments are out-with the scope of this Act, in particular those specified in the 2003 Act.

The provisions of the 2000 Act are implemented in the context of local interagency working and assessment and care management functions, and the local authority code of practice for the Act. Local authority functions under the Act include, where necessary, applying for a guardianship order to safeguard and protect the adult's welfare and interests. Guardianship is used predominately to protect adults with dementia (58% of all cases where guardianship is used), adults with learning disabilities, adults with alcohol related brain damage, adults with acquired brain injury, and some adults with severe and enduring mental illness (MWC stats). Although there is a statutory duty to prepare a MHO report (where making an application for guardianship), care, support and treatment may be delivered by social work and health professionals.

The 2000 Act's major failing is that it lacks emergency powers. For example it has no warrants for entry or removal of an incapable adult. This is where consideration should be given to to the provisions of the 2003 and/or 2007 Acts.

The 2007 Act is designed to protect adults at risk, including those affected by mental disorder such as dementia, and those who may be incapable of protecting themselves. It has a range of duties and powers, which include investigation and the banning of harmers from being in an adult at risk's premises. It has, however, to be viewed in the overall legislative context which includes the 2000 and 2003 Acts, when relating to those affected by mental disorder. As the Act's primary purpose is to support and protect, it has direct relevance here. MHOs, however, have no defined or specific duty in the Act as the primary role falls to a designated social worker (Council Officer), who in some cases may be a MHO. As the Act's provisions protect adults with mental disorder it is reasonable to suggest MHOs may be involved, especially where there is a need to link to the powers within the 2000 and the 2003 Acts.

The 2007 Act lacks powers to provide care and treatment and to protect the welfare and finances of incapable adults on a long-term basis. This is where consideration needs to be given to the powers of the 2003 and 2000 Acts; particularly, where immediate action is required under the 2003 Act or where long term protection is needed under the 2000 Act.

Risks relating to an adult with mental disorder, such as dementia include:

• risk from others
• risk from self
• risk from a lack of care or treatment, or neglect
• risk to property or finances
• risk to others.

Relevant factors which influence risk include carer stress, the quality of relationships, environment and social circumstances. The primary Acts comprehensively span these aspects, and the social worker and MHO have to be able to seek the correct provision or power relative to need and risk.

Often, no one legislative framework meets all the needs of an adult with mental disorder or responds to all risks associated with the effect of the mental disorder on an adult's life. For social workers and MHOs, navigating a course through the legislation and arriving at the provisions that best meet particular need and manage particular risk, is extremely important. That being said, applying powers in this way can be like negotiating a legislative maze, requiring informed decisions made in partnership with people with dementia and their families, a range of health professional colleagues such as consultant psychiatrists, community psychiatric nurses and general practitioners, and in many cases, legal advisers.