The importance of an early diagnosis of dementia is not limited to the clinical management through treatment with anti-dementia medications. A crucial component of dementia care is to enable a person with dementia to make decisions in respect of their own care and treatment. An early diagnosis provides the opportunity for timely discussions about future care needs and the chance for the individual to consider their advance care plan (ACP) at a time when the person retains capacity or, at least, can be an active participant. A person may wish to consult a solicitor or create their own advance decision, lasting power of attorney or will, while they still have capacity to do so.

In this chapter, we will consider the pathway for diagnosing a person with dementia and the legal corollaries of such a diagnosis rather than the organisation or implementation of advance care plans. The considerations are universal when applied to settings where a person is first diagnosed with a dementing illness. The importance of these cannot be overstated in the context of the progressive and deteriorating trajectory.

Clinicians are less likely to be familiar with the provisions of the Care Act compared with the MHA or MCA. While the Act is primarily the domain of social workers and local authorities, its effects are so widespread that a general overview of it is helpful in planning care and providing safeguards for people with dementia. The importance to clinicians arises because so much hinges on the assessment of the person’s needs and that the assessment is carried out in accordance with the Care Act. In a typical case in the Court of Protection, the key documents before the court will be determined by the Care Act assessment. These relate to what the person needs and whether they have the capacity to accept or decline the services required. We discuss the main provisions of the Care Act, which places a series of duties and responsibilities on local authorities concerning care and support for adults, as well as safeguarding in the Act. We then discuss the role of Continuing Healthcare, which is legally underpinned by the NHS Act 2006 and the Care Act, with the overlapping legal schemes essentially working in parallel.

Individuals with dementia may encounter the Criminal Justice System (CJS), including the police and courts, in different capacities: as victims, witnesses or perpetrators of crimes (related or not to the diagnosis). The Living Well with Dementia strategy makes the following statement: ‘People with dementia access all services and so need informed understanding and support from all the services they come into contact with, not only from specialist dementia services. Awareness and skills are therefore needed in all sections of the workforce and society (e.g. housing, emergency services, employers, utilities, public sector services, GP receptionists, criminal justice system staff), not just those involved with dementia care.’ WhilE we think it is important to highlight this policy initiative, this chapter does not analyse how it has been implemented within the CJS. We are limiting our discussion to the legal issues relating to four areas: crimes committed against people with dementia; crimes committed by people with dementia; dementia in secure settings; and discharge of restricted patients on conditions that amount to deprivation of liberty.

Clinicians need to be vigilant about whether the court’s intervention is required because of a dispute or specific legal requirement in relation to their patient. Circumstances may arise when it is necessary to obtain authority from a court regarding the lawfulness of a treatment (either to be given or withdrawn) when a patient refuses, lacks capacity or there is a difference of opinion regarding best interests. In other cases, a judgment from the court may protect a clinician from claims that they have acted unlawfully. Of course, the courts are also there to safeguard the welfare of the patient. We discuss the role of the First-Tier Tribunal (Mental Health) and that of decision-making capacity of patients to participate in tribunal proceedings. We then explain the Court of Protection and its powers, and the pathways for application to the court, as well as the evidence that a clinician may be required to provide. We consider common health and welfare cases that the Court of Protection may be asked to decide on and then discuss the role of the inherent jurisdiction of the High Court in protecting the vulnerable but capacitous.

Discharge planning of older people with dementia to a domestic or care home setting can present difficult practical, legal and ethical dilemmas to the hospital clinician. There may be a different and challenging profile of risks whichever strategy is pursued, but undoubtedly the issue of where someone lives or the care they receive has profound personal importance. Decision-making around these issues exemplifies the tension between preserving autonomy and protection of the individual. A hospital admission can act as a watershed point whereby a view is taken that the person requires a different approach to their care. If the person comes from a domestic setting, this may lead to instigating or modifying an existing care package or moving to a care home. Furthermore, it is generally accepted that the services available in the community for this large and growing patient group are inadequate, the applicable legal framework itself is often complex and unwieldy and, inevitably, the planning process involves more than a single agency. We discuss the key legislation, guidance and processes relating to discharge of a person with dementia from both general and psychiatric hospital settings.

The ability to make decisions (and thereby its assessment) can be complex. It may be affected by a combination of factors that vary between individuals. Even when cognitive functioning may be compromised (for instance, by dementia), a person may still be able to express important deep-rooted values underpinning their decisions. The circumstances may demand that these different elements are explored in greater or lesser detail in making conclusions about an individual’s decision-making capacity. This may add to the complexity of an assessment. From the outset, to make an adequately informed treatment or other decision, you must have sufficient information, be able to make the decision free from coercion and have mental capacity.

Notwithstanding the challenges, with appropriate thought, preparation and attention to documentation, it should be possible to record a legally defensible assessment of capacity for most situations that arise in clinical practice. The purpose of this chapter is to provide an accessible approach to capacity assessment and its recording.

In England, the Care Quality Commission is responsible for monitoring the way the MHA is used and protecting the interests of patients under the Act. The Commission have observed that between 2005–06 and 2015–16, the reported number of uses of the MHA increased by 40%. They proposed a number of factors that influenced the rates of detention, including the increase in population size and in sections of the population ‘at risk’ of detention, especially older people with dementia. Furthermore, there has been a striking change in policy and practice as a result of the Supreme Court judgment in P and Q and P in Cheshire West and how criteria for detention are now applied to people with dementia. The effect of this has meant that most patients with dementia and who lack the capacity to consent to admission to psychiatric in-patient care are now detained under the MHA. We will therefore give a brief overview of the MHA, especially as it relates to dementia, and other practical applications will be dealt with in more detail in the chapters to follow.

The effects of dementia can make older people particularly susceptible to abuse and exploitation. Not only are they likely to be less able to articulate their feelings and experiences, but they may also be unable to remember or understand what has happened to them. People with dementia may also be less likely to seek help, advocate for themselves or have the mental or physical capacity to remove themselves from potentially abusive situations. The relatively high psychological and physical demands placed on family members who care for relatives with dementia may be a contributing factor. We will therefore discuss the law in relation to safeguarding, provided by the Care Act 2014. We will then consider how the three relevant acts, the Care Act, the Mental Capacity Act and the Mental Health Act, may be deployed in relation to safeguarding situations. Finally, we will discuss safeguards relating to lasting powers of attorney, and what to do if one has concerns about attorneys and deputies.

The Mental Capacity Act (MCA) 2005 came into force in 2007 and covers England and Wales. It provides a statutory framework for anyone over the age of 16 who lacks capacity to make decisions for themselves, for whatever reason. The MCA was drafted by the Law Commission partly in response to the increased prevalence of dementia and the lack of legislation to deal with the challenges of so many people living longer and losing their ability to make decisions. It is the loss of ability to make decisions, because of the disease, which makes the key link between providing care and treatment with the application of the law. This is why the MCA is perhaps the most important of all the pieces of legislation we consider. The practical applications of the Act will be dealt with in more detail in the chapters to follow. More detailed guidance can be found in the Mental Capacity Act 2005: Code of Practice (for England and Wales), revised in 2022. We include some of the main amendments to the Code at the end of this chapter and these are also covered in the relevant sections of the book.

When thinking about deprivation of liberty, we must look to Article 5 in the European Convention on Human Rights: the right to liberty and security. The first question is why would we want to deprive people with dementia of their liberty? The circumstances of providing care to a person with dementia may be that they lack capacity to consent to those arrangements. The aim of Article 5 is to ensure that no one should be deprived of their liberty in an arbitrary fashion and that it must be in accordance with a procedure prescribed by law. There must also be the right to challenge the legality of the detention by an independent court or tribunal. The legal considerations for practitioners are, therefore, is this person being deprived of his or her liberty and then, how should it be authorised? In authorising a deprivation of liberty, there may be a choice of legal schemes which could apply, and we will discuss the interface between the Deprivation of liberty/Liberty Protection Safeguards and the Mental Health Act. We will then discuss the amendments the Liberty Protection Safeguards will introduce. In the realm of dementia care, this is a highly significant area.

When undertaking any intervention for an individual, you must be mindful of the legal authority or justification for the act. By intervention, we mean the full gamut of medical treatments or any act that relates to the care or welfare of that person. In this chapter, we will first consider the general legal principles that apply in almost any setting, but we have then divided the subsequent sections based on the location where care is predominantly provided (i.e. a domestic/home situation, care home or hospital). Although this is somewhat arbitrary, it broadly correlates with the progressive deterioration of the clinical state and in the transitions from living at home, to hospital or care home and through to the end of life. It therefore allows us to consider some situation-specific questions and how the law applies in negotiating the moves between locations or care settings.