Mistreatment and abuse of people with dementia
People with dementia may be subject to mistreatment or abuse wherever they live. This might take the form of psychological, financial, emotional, sexual or physical abuse, including the inappropriate prescription of anti-psychotics. This position statement covers some of the reasons why people with dementia can be more vulnerable to abuse and how mistreatment and abuse can manifest differently in formal and informal care settings. The mistreatment and abuse of people with dementia is always unacceptable. The risk of abuse can sometimes be minimised through the provision of adequate support, training, ongoing supervision and legal protection.
The Department of Health safeguarding guidance No secrets states that the definition of abuse is that it is a 'violation of an individual's human and civil rights by any other person or persons.'
Abuse may consist of a single act or repeated acts. It may be physical, verbal, financial, sexual or psychological. It may be an act of neglect or an omission to act. Abuse can occur in any relationship and may result in significant harm to the person subjected to it.
In most cases of repeated abuse, the abuser is well-known to the older person. The abuser may be: A partner, child or relative; a health or social work professional; a friend or neighbour; a paid or voluntary care worker.
There is a higher than average prevalence of elder abuse among people with dementia (Cooper et al, 2008). People with dementia can be particularly vulnerable to abuse and dementia can make it harder to detect when abuse is taking place:
- Victims of abuse can often find it difficult to talk about their experience of abuse. This can be even more the case for people with dementia who may already have difficulty communicating their experiences and feelings.
- People with dementia may worry that they will not be believed if they speak out about abuse, i.e. the attitude may be that the person is confused and therefore cannot be a reliable witness.
- Having a form of dementia can make a person an 'easy target' for an abuser. The person with dementia may not have the capacity to understand what they are being told to do or they may not have the cognitive ability to remember what has happened to them.
- Many common behavioural reactions to abuse, such as withdrawal from communication or wanting other people present all the time, can also be symptoms of dementia.
There are particular issues around mental capacity for people with dementia. Where an older person experiences diminished mental capacity, there can be justification for another person to take responsibility for making decisions on their behalf. These responsibilities are governed by the Mental Capacity Act. The Society has welcomed the Act and believes that it has the potential to help transform the culture of rights and decision making for people who may lack capacity. However, anecdotal evidence also suggests that a relative or carer using power of attorney inappropriately over an older person underpins a significant proportion of elder abuse in the home (Evaluation of the Uniting against Elder Abuse Project, 2011).
3. Abuse in a formal care setting
The issue of abuse in a formal care setting such as a care home or hospital is one which has received significant attention in light of high-profile incidences reported in the media. While such cases have not exclusively involved people with dementia, they have served to undermine public faith in the delivery of high-quality formal care to people with dementia. These high profile forms of abuse are rare, but the sector needs to do more and be seen to be doing more to stamp them out.
Findings from Low Expectations demonstrate that there is significant public concern about abuse. A YouGov poll revealed that 70% of UK adults said that they would be scared of moving into a care home in the future. When asked what their biggest concern would be about a relative going into a care home, over a half of UK adults (53%) said it would be of their relative being abused. Furthermore, 64% agreed that care homes were not doing enough to prevent abuse.
One of the key reasons for the provision of poor quality care is that the workforce is not trained in dementia care and therefore does not understand, and is not able to meet, the complex needs of people with dementia. A lack of training means that:
- Staff may be less able to communicate well with people with dementia, resulting in a lack of person-centred care and people's needs not being met.
- Staff may not know how to follow the principles of the Mental Capacity Act. For example, assuming that the person with dementia does not have capacity, and not involving the person with dementia and carer in decision-making.
- Staff may not provide person centred care to people with dementia who experience behavioural and psychological symptoms (such as aggression, shouting out and restlessness) can exacerbate their symptoms and result in inappropriate care being provided, such as the use of antipsychotic drugs or physical restraint.
Abuse and infringement of mental capacity in care homes are closely linked to appropriate regulation and training, something which is recognised by Action on Elder Abuse. Appropriate provision of training, and systems to ensure training is adopted into practice, can help to ensure staff have the skills and understanding to respond to the needs of people with dementia, rather than responding inappropriately to behavioural symptoms in ways which infringe people’s rights. Appropriate training can also help staff to identify abuse by other staff or professionals.
Regulators and safeguarding teams based in local authorities and trusts must also take swift action where incidences of abuse are reported. It is insufficient for issues as grave as abuse or breach of mental capacity to be considered as part of a general complaints procedure. The Society believes regulators have a responsibility to act as a first port of call for such complaints, and we welcome the establishment of clear guidance from the Care Quality Commission for providers and staff on whistleblowing. In addition, we believe that adult safeguarding boards should be involved and engaged with regulators to share information.
4. Abuse in a family setting
Although many family carers gain satisfaction from their role, there are negative aspects to caring. Carers of people with dementia often experience greater strain and distress than carers of other older people. Caring for a family member with dementia can be a life changing and very demanding experience. Often people who start caring for a family member do not feel adequately prepared for the role.
As people with dementia try to deal with their experience of dementia, they may sometimes exhibit behaviour that seems aggressive or violent. This behaviour can be highly stressful for carers and is highly predictive of mistreatment and abuse on the part of the carer. There is considerable evidence that carer and care worker stress is related to levels of support and that greater understanding about dementia and ways of working with people with dementia can reduce carer stress.
Family abuse can be considered from two perspectives: abuse that is perpetrated deliberately, and abuse that is not. Sometimes the perpetrator is doing his or her best but cannot provide the level of care and support that is needed, sometimes because they don't know what care and support is available and sometimes because the necessary support is not available. Abuse which is not deliberate can include a wide range of actions, including neglect or the unnecessary restraint of a person with dementia.
Regardless of whether or not the abuse is perpetrated deliberately, from the perspective of the person victim the impact is the same. For this reason, all forms of abuse are unacceptable and equally subject to the law.
It is also important to note that people with dementia can themselves abuse their carer. This is usually due to the behavioural and psychological symptoms of dementia, which may include depression, loss of inhibitions and aggression.
There is widespread failure to supply an adequate number and choice of services for people with dementia and their carers. Support services for carers can be an essential source of emotional and practical support, and empower the carer to care for the person with dementia. In particular:
- Training in the best way of caring for a person with dementia and education about the symptoms of dementia, particularly behavioural and psychological symptoms
- Peer support networks such as Talking Point
- Access to flexible and good quality short breaks
- Psychological support
- Information about rights and entitlements.
5. Financial abuse
In 2011, Alzheimer's Society published Short changed: Protecting people with dementia from financial abuse. Financial abuse is the illegal or unauthorised theft or use of a person's property, money or other valuables. Financial abuse is frequently perpetrated by family members, often sons and daughters, who may seek to justify their actions by claiming that they are just taking their inheritance 'a bit early.'
Financial abuse could involve:
- Forcing someone to lend or give money
- Withholding money or assets to the disadvantage of the adult to whom they belong
- Using someone's credit or debit card without permission
- Being charged excessive amounts for services
- Inappropriate use of a Power of Attorney
While financial abuse often goes unreported, Short changed revealed that 15% of respondents reported that the person living with dementia have been a victim of financial abuse such as cold calling, scam mail or mis-selling. 62% of carers reported that the person they care for had been approached by cold callers or doorstep sales people, and 70% reported that telephone callers routinely targeted the person they care for. Not only have people lost money, but they and their families have also been suffering stress, exhaustion and frustration as a result.
6. The Society campaigns for
- Prevention of abuse by care workers through:
- Proper supervision and monitoring of care workers
- The careful selection and training of staff
- Full implementation of regulation and inspection of all care services.
- Prevention of abuse by family carers through:
- Adequate provision of respite care breaks, day care and home services
- Financial security for carers
- Ongoing and accurate support and information about dementia
- Training and support for health and social care staff aimed at reducing the use of antipsychotic drugs.
- Formal procedures for the prescribing of antipsychotics and formal requirements for a review on a regular basis.
- Awareness raising for the public and full training for all health and social care professionals in the Mental Capacity Act 2005.
- Appropriate and proportionate action to be taken against perpetrators of abuse.
- The care sector to do more to condemn incidences of abuse and work to improve aspirations and expectations about the quality of care.
7. References and further information
Alzheimer's Society is a member of the Action on Elder Abuse campaign. They run a helpline on 0808 808 8141.
Welsh Assembly Government, In safe hands: protection of vulnerable adults in Wales
Alzheimer's Society (2011), Short changed: Protecting people with dementia from financial abuse
Claudia Cooper, Amber Selwood and Gill Livingstone (2008), The Prevalence of Elder Abuse and Neglect: A systematic review
Last updated: December 2013 by Alice Southern