Chapter 12
Dementia and the Law
Introduction
A major concern for those developing dementia is the fear of losing control over their lives once they have lost the capacity to make decisions. A diagnosis of dementia does not automatically mean that a person lacks decision-making capacity. Patients are now diagnosed earlier at a time when they can plan care, nominate proxy decision-makers and hold on to their autonomy and self-determination. Future planning can also benefit those who will need to make decisions on behalf of an individual.
Health professionals are involved not only in encouraging and guiding people with dementia to plan for their future but also in assessing decision-making capacity and being part of proxy decision-making. The GMC expects all doctors to be able to assess a person’s capacity in relation to their work. Decisions in dementia often involve balancing potential or actual risks with a person’s autonomy, and should always be made in the best interests of that person.
This chapter covers legislation regarding the Mental Capacity Act, Mental Health Act and Deprivation of Liberty Safeguards (DoLS), as well as covering advance planning and some common ethical dilemmas faced in dementia.
Legislation
- Mental Capacity Act 2005 (MCA 2005)
- Mental Health Act 1983 (MHA 2007)
- Deprivation of Liberty Safeguards (DoLS)
Mental Capacity Act 2005
Mental capacity is simply the ability to make a decision. The Mental Capacity Act 2005, which applies to England and Wales, and the Adults with Incapacity (Scotland) Act 2000 offer a legal framework for assessing capacity, and making decisions on behalf of those who lack mental capacity to make decisions for themselves. The statutory priniciples of the MCA 2005, as outlined in Box 12.1, are there to protect people who lack capacity, and to help them where possible, take part in decisions that affect them (Box 12.1).
Assessing mental capacity
It is a requirement that every health professional should be able to assess an individual’s capacity. Capacity is assessed via the two-stage test of capacity, followed by an assessment of an individual’s ability to make a specific decision, as outlined in Box 12.2.
Under the Mental Capacity Act, a person is deemed to lack capacity, if
- there is an impairment or disturbance (e.g. a disability, condition or trauma) that affects the way the mind or brain works, and
- the impairment or disturbance means that the person is unable to make a specific decision at the time it needs to be made.
Important points
- The assessment of an individual’s capacity must be based on the ability to make a specific decision at the time it needs to be made, not the ability to make decisions in general.
- The capacity assessment for specific decisions should be completed by the professional best suited to make that assessment—the ‘decision-maker’, that is, an ambulance crew conveying an individual to hospital, a social worker assessing placement decisions or a doctor deciding on treatment.
- If the decision is more complex, involvement of other health professionals may be necessary.
Relationship between the Mental Health Act and Mental Capacity Act
In very rare circumstances, professionals may need to think about using the Mental Health Act 2007 to detain and treat somebody with dementia who lacks capacity to consent to treatment, rather than using the MCA 2005.
A situation where this need may arise is if an individual is severely disturbed, and needs to be admitted to hospital for their own health and/or safety, or the safety of others with the intention to treat a mental disorder. It must be stressed however, that dementia care services, wherever possible, should be community based. Inpatient admissions increase the risk of morbidity, mortality and institutionalization for those with dementia. These decisions are often complex, and guidance for determining which framework to use is constantly evolving in the context of a growing number of case law decisions. Involvement of secondary mental health services may be necessary.
Deprivation of Liberty Safeguards (DoLS)
DoLS provides an independent assessment process for individuals who lack capacity and, as a consequence, may need to be deprived of their liberty in order for care to be provided in a safe environment (in their best interests).
The MCA 2005 led to the introduction of DoLS, which became law on April 1, 2009.
Common situations where DoLS are used include care-home settings and hospital wards. If an individual who lacks capacity is at risk of being deprived of their liberty, or is deprived of their liberty, the Care-Home Manager or Hospital Ward Manager, are obliged to apply to their supervisory body (Local Health Board/Authority) for an authorisation of deprivation of liberty. For example, a gentleman with advanced dementia who continuously attempts to leave his Care Home needs restrictions placed on his freedom (a locked door policy), to keep him safe. In deciding on the need for a DoLS assessment, health care professionals are not involved, other than in the context of an advisory role if necessary.
Making decisions for the future: advance care planning
Earlier diagnosis offers many people with dementia the opportunity to be able to plan more effectively for a time when their capacity to make decisions may be affected. These decisions may revolve around health matters and financial decision (see Box 12.3).
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