Legal and Ethical Issues in Dementia Care

Introduction

In England and Wales, over two million people cannot make decisions due to a lack of capacity (Social Care Institute for Excellence). Dementia is a syndrome that can affect a person’s mental capacity. According to the NHS, it affects over 944,000 people in the UK and 1 in 11 people over 65. The number of people with dementia is estimated to increase to approximately 1.6 million in 2040, which is mainly due to an ageing population (Alzheimer’s Society).

Dementia has a significant impact on people. It can affect their everyday lives and result in difficulties with their memory, speech, language, physical abilities and behaviour. As the disease responsible for the dementia progresses and an individual enters the later stages, it can be debilitating, and they may need help to make some or all decisions. It can be extremely difficult and distressing for families and caregivers, as it can be stressful and costly, and they and others may need to make decisions for the person with dementia.

Society is also impacted by dementia, as individuals typically require health and social care and support, which is partly funded by the state and, therefore, the taxpayer. According to the Alzheimer’s Society, it costs the UK £34.7 billion to care for people with dementia, which includes NHS costs, social costs and unpaid care costs.

When providing care and support to people with dementia, there can often be dilemmas regarding their mental capacity and ability to make decisions for themselves, especially as they progress into the later stages of the syndrome. This blog aims to explore the complex legal and ethical considerations that arise in the care of individuals living with dementia.

Understanding Dementia and Capacity

The National Institute for Health and Care Excellence (NICE) defines dementia as:

“A progressive, irreversible clinical syndrome with a range of cognitive and behavioural symptoms including memory loss, problems with reasoning and communication, change in personality, and reduction in the person’s ability to carry out daily activities.”

Dementia is a syndrome that describes symptoms caused by a specific disease that damages part of the brain and affects cognitive function. There are various types of dementia, including:

• Alzheimer’s disease – this is the most common type of dementia, typically seen in people over 65. In the early stages, individuals may experience problems with their thinking, memory, language or perception.
• Dementia with Lewy bodies (DLB) – this is caused by Lewy body disease and has similar symptoms to Parkinson’s disease. People with this type may experience hallucinations and delusions, sleep problems, movement difficulties and difficulties staying focused.
• Frontotemporal dementia (FTD) – this is a less common type and is often known as frontal lobe dementia or Pick’s disease. It can cause behavioural and personality changes and language difficulties. It is more common in people aged 45-64.
• Mixed dementia – this is where someone has more than one type of dementia, such as Alzheimer’s disease and vascular dementia. Symptoms can vary depending on the types.
• Vascular dementia – this is the second most common dementia type. Symptoms in the early stages can include issues with decision-making, planning, organising and solving problems.

Dementia is progressive, which means that a person affected will experience worsening symptoms. As it affects a person’s brain, it can impact their mental capacity, which means:

“ A person is able to make their own decisions. (SCIE)”

Regardless of the type of dementia a person has, it can affect their ability to retain, understand and remember information. They may also not be able to consider their options and make informed and reasoned judgements.

There are laws surrounding mental capacity, which aim to protect and empower those who are unable to make decisions for themselves due to their lack of mental capacity. The main law is the Mental Capacity Act (MCA) 2005, which applies to people over 16 years old in England and Wales. Scotland and Northern Ireland have different legislation – the Adults with Incapacity (Scotland) Act 2000 and the Mental Capacity Act (NI) 2016. There is also the Mental Capacity Act Code of Practice for those who work with/care for people who cannot make decisions for themselves.

The MCA requires a mental capacity assessment before providing care or treatment if reasonably believed a person with dementia lacks capacity. It can be a complex process, and the assessment and who can complete it will depend on whether the lack of capacity is permanent or short-term and the significance of the decision to make, for example:

• Simple, everyday decisions, such as what the person will eat or wear – a family member, carer, or care workers may need to assess.
• More difficult decisions, such as medical treatment consent – a healthcare professional may need to assess.

Further information on mental capacity and MCA assessments is on:

• Alzheimer’s Society – Assessing the mental capacity of a person with dementia.
• Dementia UK – Mental capacity and decision making.
• NHS – Mental Capacity Act – Social care and support guide.
• SCIE – Assessing capacity.

One of the challenges for all those involved in caring for and supporting someone with a lack of mental capacity is balancing autonomy with beneficence, which are two ethical principles:

• Autonomy – “Autonomy is usually expressed as the right of competent adults to make informed decisions about their own medical care. Autonomy also requires healthcare professionals not to influence a patient’s decision and requires their capacity, consent or an informed agreement before investigations and treatments occur.” British Medical Association (BMA).
• Beneficence – “A core principle in medical ethics that guides practitioners to act as they believe is in the best interest of the patient” (The Medic Portal) and essentially means “do good”. The principle of beneficence requires balancing treatment benefits against the risks and costs.

There are also two other ethical principles to consider:

• Non-maleficence – avoid causing harm to patients; any harm associated with treatments should not be disproportionate to their benefits.
• Justice – treating patients in similar circumstances similarly and fairly distributing benefits, risks and costs.

These four principles form part of an ethical framework of healthcare issues to generally consider when making decisions about patients’ care.

There may be situations where patient autonomy and beneficence conflict, which must be balanced against one another. For example, a dementia patient may struggle to make decisions due to a lack of mental capacity, so the healthcare professional has to decide what is in the patient’s best interest. Here, beneficence overrides patient autonomy. It can also be difficult to balance these principles with protection, i.e. if a dementia patient still can make decisions but is showing signs of self-neglect.

Informed Consent and Treatment Decisions

Informed consent is an essential principle of medical ethics required by international human rights law. It is a process where patients are provided with sufficient and relevant information to understand the benefits, risks and alternatives of a given treatment or intervention. It also includes informing them of what happens if procedures do not proceed.

Informed consent is crucial in respecting patient autonomy. Competent adults have the right to make informed decisions about their own medical care and treatments. However, they can only make these decisions if they have enough information and have an opportunity to decide for themselves.

Consent must be valid, which requires it to be voluntary and informed, for example:

• The person must have the capacity to understand all the relevant information given to them to make their own informed decisions and consent to treatment or the sharing of their information.
• The person must be able to make decisions voluntarily, i.e. they must be free to decide and not be pressurised, threatened, influenced, induced or persuaded by healthcare professionals or anyone else, including family or friends.
• The person must give their consent freely, and it should be obvious as to what they are consenting.
• The person must be able to opt-in rather than having to opt-out. They must be able to refuse or withdraw consent at any time easily and without detriment.
• Healthcare professionals must respect the person’s informed consent and the decisions they make.

People with dementia may lack the capacity to consent, or their ability may fluctuate, which can be difficult for healthcare and social care professionals and workers, families and carers to navigate. They must ensure they comply with legal and ethical frameworks when making decisions for people who lack capacity and always make them in their best interests. They must understand the person’s needs, preferences, values and wishes and consider these factors when making decisions.

Advance directives have an essential role in healthcare decision-making for individuals with dementia, as they:

• Enable the person to make decisions early regarding the specific types of care and treatment they want or do not want.
• Provide a guide for healthcare and social care professionals, families and caregivers to follow if the person cannot communicate their wishes.
• Are followed throughout the person’s life and ensure their values and preferences are respected and their autonomy upheld.

There are complexities surrounding treatment decisions, including end-of-life care and palliative interventions, which healthcare and social care professionals, families and caregivers must navigate, and it can have emotional impacts on all involved. They will have to weigh up various factors and support the person with dementia to make decisions where possible. It may require healthcare and social care professionals to get advice from family, caregivers, friends or an independent advocate and make decisions for the person if they cannot make treatment decisions or consent.

It reiterates the importance of planning effectively for the advanced stages of dementia to ensure individuals can make informed decisions and consent when they still have the mental capacity to do so.

Further information

• Macmillan Cancer Support – Treating cancer in someone with dementia.
• NICE – Decision-making and mental capacity.
• The Alzheimer’s Society – Making decisions for a person with dementia who lacks mental capacity.

Legal Guardianship and Substitute Decision-Making

When an individual lacks the capacity to make decisions for themselves, i.e. about their care, treatment and finances, they may require someone to act on their behalf, and there are legal mechanisms surrounding their appointment. Here are some examples of the available processes:

Lasting Power of Attorney

• This is where one or more trusted people are appointed through a legal process called a lasting power of attorney (LPA).
• There are two types of LPA:
• Health and welfare, e.g. medical care and treatment, and social care.
• Property and financial affairs, e.g. managing finances and property.
• The process for making, registering or ending a lasting power of attorney is on UK.
• The Court of Protection may appoint a deputy if the person with dementia did not make an LPA while they had the mental capacity.
• LPA applies in England and Wales.
• In Northern Ireland, it is called an enduring power of attorney.
• In Scotland, it is called a power of attorney (PoA).

Guardianship

• This is a process undertaken in Scotland and provides legal authority to make decisions on someone else’s behalf.
• Family members, caregivers and even friends can apply to the local Sheriff’s court (Scottish Government). Professionals, such as solicitors, accountants and local authority personnel, may also apply.
• Guardianship is also the term used to make decisions for those with a mental disorder, but it is uncommon for dementia. Guardians can make some of the decisions for the person and have special legal powers (Alzheimer’s Society).

Substitute decision-makers have various responsibilities when making decisions for individuals with dementia. They may be responsible for the following:

• Living arrangements– they may need to decide where the person with dementia will live, e.g. nursing home, home care or assisted living facilities.
• Healthcare– they may decide about medical treatments, interventions, care and support. They may need to collaborate with healthcare professionals to ensure the person with dementia has the best possible care.
• Social care– they may need to decide on the type of social care and support a person requires, including day-to-day decisions regarding personal care, diet, daily routines and dress.
• Finances– their responsibilities may include handling and managing the person’s finances, e.g. paying bills, collecting pension or benefits and managing assets.

It is vitally important that anyone appointed to make decisions for someone with dementia adheres to legal requirements and acts in the best interests of the person with dementia, as they could find themselves falling foul of the law and/or sued if they use their powers illegally and do things that are not in the best interest of the individuals. There is also a moral obligation, as people with dementia have the right to have their needs, values and preferences respected and their dignity upheld.

Further information

• Alzheimer’s Society – Lasting power of attorney for people with dementia.
• Dementia UK – Lasting power of attorney.
• NHS – Managing legal affairs for someone with dementia.

Privacy and Confidentiality

Every human being has a fundamental right to privacy, reinforced in human rights laws. It means providing someone with space wherever and whenever they require it, recognising when they wish and need to be alone (or with family and friends) and treating their personal information confidentially. People with dementia should be afforded the same protections as everyone else, and it is crucial to protect their privacy and confidentiality in all care settings to preserve their dignity (SCIE).

There may be challenges when balancing a dementia patient’s rights to privacy with the need for monitoring and supervision in dementia care settings. Some patients may have vulnerabilities, barriers and safety risks that can make it hard to protect their privacy. Others may require their freedom to be limited and under continuous supervision and control in care homes and hospitals, and this is where the Deprivation of Liberty Safeguards procedure applies. Regardless, the person’s privacy must be safeguarded as much as possible, and the level of monitoring and supervision must be in their best interests.

It is vital to maintain confidentiality while ensuring the safety and well-being of individuals with dementia by (this list is not exhaustive):

• Following organisational policies and procedures on confidentiality.
• Being aware of situations where confidentiality could be compromised.
• Keeping their personal information confidential and only passing it on for healthcare and social care reasons.
• Being extremely careful not to discuss personal issues where someone might overhear or avoid speaking too loudly.
• Only sharing information on a need-to-know basis, e.g. with other workers involved in the individual’s care.
• Not sharing information with anyone else without the individual’s permission, including their family or friends.
• Explaining to them and/or their family and caregivers when information may have to be passed to other workers to provide the care and support they need.
• Reporting breaches of confidentiality promptly through the appropriate channels.

Confidentiality and privacy are crucial in fostering trust, building relationships with dementia patients and their families/caregivers and respecting their rights.

End-of-Life Care and Advance Care Planning

As dementia is progressive and there is no cure, patients will require end-of-life care and support at some point, and there are ethical considerations. The person may be unable to make all or some decisions or consent about their care, support and treatments. They may also struggle to communicate their wishes as their condition progresses. It requires balancing the need for autonomy with what is in the individual’s best interests and meeting their needs, preferences and values.

Advance care planning is essential in ensuring the person’s wishes and choices are respected and honoured during end-of-life care. It provides an opportunity to plan future care, support and medical treatment while dementia patients still have the mental capacity to do so (NICE). It also ensures the person with dementia and their family has a dignified and peaceful end-of-life experience.

The following have a role in advance care planning:

Advance Statements (advanced care plans)

• Refers to how someone records their future preferences, values and wishes regarding their care and support.
• They are not legally binding but can be used as guidelines for a person’s care.
• They are important as they help guide others to make decisions for the individual if they cannot make them themselves.
• The Alzheimer’s Society has further information here.

Advance Decisions

• These are also known as advanced directives or living wills.
• They are legal documents that detail the medical treatments a person wants to refuse in the future.
• The Alzheimer’s Society has further information here.

Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR)

• Patients may want to consider whether CPR would be appropriate for them and the effects it may have on their futures. They can make a decision not to restart their hearts, which is known as DNACPR.

Last Will and Testament

• It is not the same as a Living Will, as it details what a person wants to happen to their property, money and possessions after death.

Organ donation

• People must decide whether they will donate their organs and tissues after their death.
• People are automatically put on the organ donor register and must opt-out if they do not want to donate.
• NHS Blood and Transplant has further information on organ donation here.

End-of-life care is a form of palliative (comfort) care. The latter aims to improve the quality of life for patients by addressing their needs holistically rather than just focusing on their symptoms. It is a whole-person approach that makes them as comfortable as possible by managing their symptoms and providing emotional, psychological, social and spiritual care and support. The NHS has further information on palliative care here.

Dementia can progress at different rates, but it is a degenerative condition. Therefore, it is paramount to discuss end-of-life preferences with individuals and their families early in the dementia journey so all involved can understand and respect their wishes. It can prevent distress to the patient and their families and avoid ethical dilemmas for healthcare and social care professionals.

Further information

• The Alzheimer’s Society – Making decisions about end of life care.
• Dementia UK – Advance Care Planning.
• NHS – End-of-life care.
• NICE – Advance care planning.

Abuse and Neglect

People with dementia are at risk of abuse and neglect due to cognitive decline, e.g. memory loss, orientation difficulties, communication issues and problems making decisions. According to Romeo (2019), older adults who have received a diagnosis are more likely to experience abuse and neglect.

• Abuse – “any action that violates a person’s human or civil rights” (South West Yorkshire Partnership NHS Foundation Trust. There are numerous types, including physical, verbal, sexual, psychological, financial, etc. (SCIE). It can be a single or repeated act and affect one or more people.
• Neglect – is a type of abuse and also includes acts of omission. It is the “refusal of or failure to fulfil a caregiving obligation” (NICE).

There are legal obligations to prevent and report abuse and neglect in dementia care settings, for example:

• The Care Act 2014 – provides a framework that sets out how to safeguard adults from the risks of abuse and neglect. They define safeguarding as, “Protecting an adult’s right to live in safety, free from abuse and neglect”.
• The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 13 – aims to safeguard people who use services from suffering any form of abuse or improper treatment while receiving care and treatment (Care Quality Commission).
• The Mental Capacity Act (MCA) 2005 – aims to protect those who lack mental capacity from ill-treatment or wilful neglect.
• The Safeguarding Vulnerable Groups Act (SVGA) 2006 – aims to prevent those deemed unsuitable to work with vulnerable adults and children from accessing them through their work (SCIE).

There are also ethical obligations, typically included in professional standards and guidance from registration bodies and those stipulated by regulators, such as the Care Quality Commission (CQC).

Unfortunately, not everyone involved in caring for people with dementia has good intentions, and there have been previous reports in the media about people with the condition being abused or neglected in hospitals and care settings. Some dementia patients may not be able to tell someone that they are being harmed. Therefore, it is crucial to look out for the signs of abuse and neglect and specific indicators, such as (this list is not exhaustive):

Physical

• Unexplained injuries, e.g. bruising, abrasions, pressure marks, burns, broken bones, etc.
• Flinching at physical contact.
• Bedwetting.

Emotional/psychological

• Sudden changes in behaviour.
• Frightened or subdued.
• Anxiety, depression or confusion.
• Appetite changes.
• Low self-esteem.
• Emotionally withdrawn.
• Refusing or reluctant to engage socially.

Financial

• Missing personal items and money.
• Unexplained transactions.
• Questionable financial/legal documents.

Neglectful

• Changes in the person’s appearance.
• Dirty, unhygienic or odourous environment.
• Poor personal hygiene.
• Unexplained weight loss or malnutrition.
• Bed sores.
• Untreated medical problems.
• Over-sedation.
• Deprivation of meals which may constitute “wilful neglect”.
• Denied independence aids.

CPD Online College has further information on the signs of abuse in adults here.

Healthcare and social care providers and professionals have safeguarding duties and must comply with their ethical and legal responsibilities. Those working in the sector must follow their employer’s safeguarding policies and procedures and report it if they believe a patient/client is being abused or neglected. Some types of abuse are criminal offences, which may need reporting to the police and appropriate regulators, e.g. the CQC.

A review by Mileski et al,. (2019) stated that the best way to prevent abuse is by continually looking for the signs, listening to residents and frequent monitoring. They also suggested that creating a culture where staff report all suspected adverse events and near misses can increase the chances of identifying and remedying the abusive behaviour quickly.

Advocacy is essential in upholding the rights and safety of individuals with dementia, and it is at the heart of person-centred care and support. It is about giving them a voice, making sure they are heard, can express their wishes, and can stand up for their rights. Advocates are important in helping to identify, prevent and report abuse and neglect within dementia care settings.

Further information

• NICE – Safeguarding adults in care homes.
• SCIE – Gaining access to an adult suspected to be at risk of neglect or abuse.
• The Alzheimer’s Society – Safeguarding and dementia.

Professional Boundaries and Conflicts of Interest

Clear professional boundaries are fundamental in maintaining safety, respect and trust and doing what is in the patient’s best interests. Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust defines professional boundaries as:

“A set of rules which protect patients and staff from harm.”

Healthcare and social care professionals must understand and maintain boundaries and ensure they do not intentionally or unintentionally cross them. Crossing professional boundaries can lead to boundary violations and harm patients. When caring for dementia patients and their families/caregivers, there can be challenges maintaining boundaries, e.g. being emotionally involved and having dual relationships.

Conflicts of interest can also create ethical dilemmas, and the Shrewsbury and Telford Hospital NHS Trust defines them as:

“A situation where a ‘reasonable person’ would consider that a decision taken by an individual has been, or could have been influenced by an interest they hold.”

An example of a conflict of interest is where staff could benefit financially, professionally or personally, i.e. if a dementia patient or family offers them money to make decisions for them or a professional wants to increase their reputation by conducting research that the patient cannot consent to.

As dementia patients can lack the mental capacity to make decisions and may depend on others for ethical decision-making, they can be vulnerable to influence, coercion, and exploitation. Therefore, healthcare and social care professionals must identify where conflicts could arise and manage them in line with their organisation’s policies and procedures.

Some strategies for maintaining professionalism, integrity, and objectivity when providing care or making decisions on behalf of individuals with dementia are as follows:

• Legal and ethical frameworks and guidance – help to navigate the legal and ethical challenges while considering patient autonomy and well-being. There are also standards and guidance to ensure decisions are consistent, fair, and made within the best interests of those with dementia.
• Organisational policies and procedures – healthcare and social care providers should have policies and procedures regarding professional boundaries and conflicts of interest, and staff should always follow them.
• Effective communication – always communicate openly, clearly and honestly with patients, their families and caregivers. Use simple language and explanations, and avoid professional jargon. Actively listen to their concerns, preferences, values, fears and desires.
• Empathy with boundaries – try to understand how patients and their families and caregivers feel and see things from their perspectives. However, it is essential to understand and identify where boundaries could be crossed and maintain a professional distance.
• Self-awareness – regularly reflect on the decisions made and actions taken, and be mindful of biases that could affect judgment and decision-making.
• Collaboration – involve individuals with dementia and their family and caregivers in shared decision-making and collaborate with them on care, support and treatment decisions. If there are complex cases, consult with colleagues or supervision for support in making the right decisions or if there are any concerns regarding boundaries or conflicts.

Transparency, accountability, and ethical decision-making in all aspects of dementia care are of utmost importance:

• Transparency – requires open, clear and honest communication to enable those involved to understand processes, decisions and outcomes. It fosters trust, builds positive relationships, promotes learning and enhances informed decision-making.
• Accountability – requires people to take responsibility for their decisions, actions and outcomes. It ensures that those involved in care provision are answerable for compliance with standards, patient safety and quality of care.
• Ethical decision-making –  is the cornerstone of providing person-centred care and doing what is moral and in the best interests of those with dementia. Also, it means prioritising their needs over personal gain, i.e. avoiding conflicts of interest and considering the impact on individuals when making choices. It is essential in enhancing patient well-being and maintaining professional conduct.

Conclusion

It can be extremely difficult and distressing for people with dementia and their families, caregivers and friends, especially regarding making decisions about care, treatments and support. The person with dementia may lack the mental capacity to make some or all decisions, or their ability may fluctuate, which can be challenging when facing complex situations, such as medical procedures and end-of-life care.

Healthcare and social care professionals and workers can face ethical dilemmas that they must address to ensure those with dementia receive the best possible, person-centred care and support. They must adhere to legal and ethical frameworks and balance the person’s autonomy, privacy and confidentiality with what is in their best interests while upholding their wishes, values and dignity. It can be challenging, but involving the person and their families, caregivers, or advocates can help meet their needs.

As the condition is progressive, it is vital to plan as early as possible and while the person still has the mental capacity so they can make informed decisions regarding their care, support and treatment. There are numerous processes available, such as advance statements, advance decisions, lasting power of attorney and guardianship, that empower those with dementia to make decisions and provide guidance to those providing care.

As people with dementia can be vulnerable, it is vital to look out for any signs of abuse or neglect in dementia care settings and report any concerns or suspicions promptly through the appropriate channels. It is also crucial for healthcare and social care professionals to maintain professional boundaries and consider conflicts of interest when making decisions on behalf of those with dementia.

The rights, dignity, and well-being of individuals with dementia must be upheld through ethical and legally sound practices. Anyone involved in dementia care should seek further education and training on legal and ethical considerations to ensure they remain compliant, fulfil their moral obligations and ensure those with dementia live as independently as possible and have a good quality of life.