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Neglect and abuse in care mean that certain people are not living well with dementia

Elder abuse, the mistreatment of older people, affects over 100,000 older adults each year in the United Kingdom. The global prevalence of elder abuse is unknown as underreporting is estimated to be as high as 80%. Approximately half of abuse violations are ‘serious enough to cause actual harm to the residents or to place them in immediate jeopardy of death or serious injury’.

Protecting the rights of residents of long-term care services has become a high profile policy goal within the UK and internationally, thereby confirming elder abuse’s current status as a social problem. Common to many definitions, this has an individualistic focus, in which abuse is seen as primarily, if not exclusively, an interpersonal phenomenon. This definition is also typical in that it excludes crimes committed by strangers and structural issues, such as poverty and the possible impact of ageism.

Ageism appears to be a widespread phenomenon in many domains of life and is known to be prevalent in health care. Ageism relates to the systematic discrimination of older persons, viewing them as senile, a burden, useless, and invisible. Ageism can be expressed on three levels: the individual (micro) level, the institutional level, and the societal (macro) level. Not all people who are old have dementia, and not all people living with dementia are old; but there is concern about the group of older citizens living with certain severity of dementia. Some people with dementia may be at particular risk of elder abuse. Several theories have been proposed to explain the onset of elder abuse. Social learning of abusive behaviours, caregiver stress, social isolation of the victim, dependency between the victim and the abuser, and psychopathology of the abuser are commonly accepted theories.

Elder abuse has been defined by the World Health Organization as a single or repeated act, or lack of an appropriate action, occurring within any relationship where there is an expectation of trust and which causes harm or distress to an older person. According to Max Weber, action is human behaviour (external acts, internal acts, omissions) to which the acting individual attaches subjective meaning. As a regulative principle of the concept of a person, a principle of respect for a person is one that requires respecting other persons’ human rights, promoting dignity, and avoiding their exploitation and abuse. The maltreatment of such residents in long-term care facilities is commonly unrecognised. Maltreatment includes various behaviours, such as physical, psychological, and sexual abuse, financial exploitation, and neglect. These behaviours may cause permanent disability and even death. Elder abuse encompasses the concepts of abuse and neglect.

Elder abuse may be domestic, taking place in the home of the abused or in the home of a caregiver, or it may be institutional, taking place in a residential facility for the elderly (eg, a nursing home). Elder abuse may be intentional (active) or unintentional (passive). Nurses are among the first professional workers to encounter the older persons who arrive at the long-term care facility. They are therefore positioned on the front line to detect abuse and neglect and are also in a position to prevent it.

Neglect implies withholding of expected levels of comfort, e.g., withholding food or medications.

Abuse may take several forms. Physical abuse encompasses a wide range of abuse, including striking, pushing, shoving, choking, burning of skin and other forms of physical injury.

Psychological or emotional abuse may be subtle but includes withholding of funds, food, medications, isolation, belittling or ignoring of elders, and other forms of non-physical abuse. Financial abuse is fairly frequent, inasmuch as family members and others may restrict access of elder persons to much needed funding that they may be entitled to receive. This may include confiscation of pensions, annuity funds, social security checks or personal savings.

Not all elder abuse relates to care and treatment: there are high risks of financial abuse among people with dementia both living at home and in other settings. There are many sources of data about poor care, abuse and neglect of people with dementia in care home and hospital settings but these are collected for different purposes and hard to link. The “caregiver stress theory” of abuse is the most frequently cited argument supporting a relationship between dementia and elder abuse. Any form of abuse, harm or neglect is unacceptable and should not be tolerated by the provider of a service, its staff, the regulators, or by members of the public or allied professionals who may also become aware of such incidents. Awareness of elder mistreatment in long-term care settings such as care homes and hospitals in the UK has increased greatly over the past 20 years.
Long-term care (LTC) can be defined based on the characteristics of the person receiving care. The most useful image of an older person who receives or needs LTC is of an older person who is frail, disabled, or has multiple chronic conditions.

Various stakeholders have proposed a range of measures for the prevention of abuse and the protection of residents: a stricter legislative framework for private residential facilities, including mandatory accreditation, varied systems for evaluating the quality of services, and the role of ombudsperson. Notwithstanding, CQC’s underpinning priorities in regulation are currently to:

• focus on quality and act swiftly to eliminate poor quality care, and
• to make sure that care is centred on people’s needs and protects their rights.

Care that fails to meet the expected national standards of quality and safety is supposed to be intolerable under implementation of existent law and regulation. Some form of surveillance is critical to ensure people are receiving safe, high-quality and compassionate care. We need enough staff, properly trained and supported who really care to ensure people get the services they have every right to expect. The term ‘safeguarding’ can be defined so as to describe a range of activities that organisations should have in place to protect people (both children and adults, unless stated otherwise) whose circumstances make them particularly vulnerable to abuse, neglect or harm.

There has been recent scrutiny of surveillance techniques in preventing or acting upon neglect or abuse in care homes. Adult safeguarding is the process of protecting adults with care and support needs from abuse or neglect. It is an important part of what many public services do, but the key responsibility is with local authorities in partnership with the police and the NHS. The Care Act 2014 puts adult safeguarding on a legal footing and from April 2015 each local authority must make enquiries, or ensure others do so, if it believes an adult is subject to, or at risk of, abuse or neglect. An enquiry should establish whether any action needs to be taken to stop or prevent abuse or neglect, and if so, by whom.

It was announced recently in the lifetime of this government that a new offence of ‘wilful neglect or mistreatment’ is to be created for NHS hospital staff whose conduct amounts to the deliberate or reckless mistreatment of patients. This offence will be modeled on an existing offence under the Mental Capacity Act which punishes the wilful neglect or ill-treatment of patients lacking capacity. Currently, a medical worker convicted of this offence faces a maximum sentence of five years imprisonment, or an unlimited fine. The sanctions for the proposed new offence are likely to be of a similar severity.

The creation of the offence comes in the wake of the inquiry into the widespread negligence that occurred at Mid Staffs. Intended principally to deter healthcare workers from mistreating patients, the new offence has been proposed following review of patient safety. The leader of the review, Professor Don Berwick, emphasised that patient safety must become the top priority, consistent with the statutory purpose of the clinical regulators, and that the measure was needed to target the worst cases of an attitude that led to ‘wilful or reckless neglect or mistreatment’. The measure in the construct of our and EU law has to necessary and proportionate in implementation. Whilst most would agree that patient safety should be a priority, there has been concern that the new criminal sanction could create a ‘climate of fear’ amongst healthcare workers and that individual workers will be penalised for mistakes pursuant to inadequate staffing or simple human error, rather than blameworthy acts of intentional malice.

An understudied issue is abuse among older adults living in nursing homes, often referred to as resident-to-resident aggression (RRA). Although the term ‘‘elder mistreatment’’ in the context of nursing home care invariably evokes images of resident abuse by staff, resident-to-resident aggression (RRA) may be a much more-prevalent and problematic phenomenon. Cognitive impairment afflicts a huge proportion of nursing home residents in many jurisdictions, often leading to behavioural disturbances including agitation and overt aggression. Behavioural disturbances are a well-known risk factor for nursing home placement. It is likely that collocating nursing home residents with behavioural disturbances increases the potential for RRA.

Finally, elder abuse and neglect continues to be a growing and often unrecognised problem in many jurisdictions including the UK. At their best, assisted living facilities hold the promise to maximise the dignity, privacy, and independence of their residents. The opportunity for residents to “age in place” with the availability of increased services allows for a highly variable range of residents to coexist in assisted living. Specifically, the presence of cognitive impairment in conjunction with minimal regulations and oversight, private rooms, low staff ratios, minimal staff training, and high staff turnover may conspire to increase risk.

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