Safeguarding people with dementia
The enormity of the challenge of helping people to live well with dementia can be gauged by public attitudes to a condition many regard as ‘the beast’. A survey carried out by MORI in 2010 showed that one in three people in the UK are uncomfortable around people with dementia. The survey also showed that more than 50 per cent of people do not know enough about dementia to help someone who has it.
The findings were revealed on the same day as a new national awareness campaign was launched to educate the public about the condition and demonstrate the simple things that everyone can do to help people live with dementia.
It is difficult to come to terms with the mindset of someone who has dementia and how their attitude to managing money can change. They can become very forgetful as well as overly trusting, which can lead to increased vulnerability to abuse.A carer quoted in the Alzheimer’s Society’s 2011 report, ‘Short changed: Protecting people with dementia from financial abuse’
The Living Well campaign – promoted heavily on television, radio, the internet and newspapers – featured people with dementia, including Peter Dunlop, a former consultant obstetrician and gynaecologist.
In a video about the making of his commercial for the campaign in which people declare ‘I have dementia – I also have a life’, he explains that there is a ‘lot of ignorance about a lot of conditions’ and ‘things like Alzheimer’s and dementia are regarded as the 'beast''. He says: ‘It’s easier for someone to understand a heart attack rather than dementia. If they know what is going on that removes some of the fear.’
People with dementia can be extremely vulnerable due to the nature of their condition. Early symptoms can affect communication and reasoning skills and consequently they may not be able to understand or explain to others what is happening to them. The MORI research clearly demonstrates the stigma attached to dementia. A diagnosis and the life-changing decisions that follow (as highlighted in the feature, Planning for the future) can have a substantial impact on partners, families and friends – and on their relationship with the person with dementia.
This feature emphasises the importance of treating a person with dementia with dignity, maintaining their human rights and ensuring that appropriate safeguards are put in place to protect them in their home and from abuse.
Safety in the home
A person’s home can help or hinder their ability to live well with dementia. Poorly fitted mats or poor lighting can lead to trips and falls. Forgetfulness can result in a cooker being left on or a tap left running. A lack of spatial awareness (to be aware of yourself in the space around you) can lead to someone walking into a table, chairs or other furniture or objects. Disorientation can result in someone getting lost in their own home – perhaps being unable to find the bathroom, bedroom or kitchen.
A care worker has a key role to play in helping to ensure that a person with dementia lives safely in their own home. The person can be encouraged to talk about potential improvements (designed to enable them to live independently in their own home).
These can include:
- removing ill-fitted mats
- re-arranging furniture to help them move more easily around individual rooms
- putting on lights to help improve visibility in the home
- pulling back net curtains to allow more natural light into rooms
- installing simple devices to avoid sinks and baths overflowing
- fitting sensors to monitor movement in the home, particularly at night
- putting cleaning fluids out of reach – and removing medicines that are no longer needed (that is, taking them to the chemist)
- fitting smoke alarms – and ensuring that fireguards are placed in front of open fires
- putting simple signs on doors and cupboards to make it easier to find rooms and objects (such as cups, saucers and cutlery).
A care worker can also encourage the person to seek expert advice from occupational therapists, social workers and fire service professionals who can recommend ways of reducing risks.
More information can be found in the Dementia-friendly environments section.
Safety and abuse
The Care Act2014 describes 10 types of abuse – physical, sexual, psychological, financial, neglect, organisational, domestic violence, modern slavery, self-neglect and discriminatory abuse. Abuse can include:
- physical: hitting, slapping pushing and kicking
- sexual: sexual assault, rape or exposing a person to inappropriate material
- psychological: emotional threats of harm or abandonment, humiliation and intimidation
- financial: theft, fraud, exploitation of funds and misappropriation of benefits
- neglect: ignoring physical care, personal hygiene, and eating and drinking
- self-neglect: a person ignoring their own environment, hygiene and nutrition to a harmful degree
- organisational: neglect or seriously poor professional practice as a result of the structure, policies, processes and practices within an organisation
- domestic violence: including psychological, physical, sexual, financial, emotional abuse; and so called ‘honour’-based violence
- modern slavery: encompasses slavery, human trafficking, forced labour and domestic servitude
- discriminatory: racism, sexual abuse and harassment based on a person’s disability or cultural or religious beliefs.
As a person comes to terms with a diagnosis of dementia and adapts to their new life, they may become vulnerable to abuse. A care worker should be aware of the different types of abuse and report any concerns to their line manager (who may then take up any issues with social services).
Recognising the signs of abuse
As a care worker, it is important to try to talk to a person with dementia about any concerns you – or they – may have. There may be a simple, innocent reason for someone having bruises on their legs (such as walking into furniture) or for becoming withdrawn or appearing sad (perhaps there has been some bad news, the person may be feeling unwell or has mislaid something important). However, a care worker should be alert to the possibility that abuse may be taking place, potentially by someone close to the person with dementia.
Signs of abuse can include:
- physical: bruising, undue redness or discoloration of the skin (perhaps brought about by pressure, swelling or missing hair)
- sexual: recurring urinary tract infections, agitation during personal care, the wearing of more clothing to cover certain areas
- psychological: crying for no obvious reason, being anxious, withdrawn or fearful
- financial: lack of money, missing possessions, another person’s suspicious behaviour or influence concerning money
- neglect or self-neglect: lack of personal hygiene, dirty clothes, failing to keep the house clean
- organisational: similar issues within a formal care setting
- modern slavery: doing domestic chores, perhaps for family members, to the extent that they have no time to themselves, and are fearful of trying to change the situation
- discriminatory: being withdrawn and avoiding certain people or places
- domestic violence: many of the above concerns, if they are happening at the hands of a close family member, may well amount to domestic abuse.
A person with dementia can be vulnerable to financial scams. The Alzheimer’s Society revealed in December 2011 that thousands of people in England and Wales have been victims of financial abuse through cold calling, mis-selling or scam mail. The Society estimates that victims have collectively lost tens of millions of pounds and is calling for better protection for people with the condition.
Dignity and human rights
Everyone has the right to be treated with dignity and make their own choices in life. Human rights are relevant to everyday life and are designed to protect a person’s freedom and their ability to have control over their life and to be involved in any decisions that affect their life. Sometimes, as a care worker, it is hard not to intervene when certain choices do not match your ideas and beliefs. However, it is important that you treat a person with dementia with dignity and respect at all times (that is, addressing someone by the name they choose, listening carefully, speaking respectfully, respecting the person’s privacy and offering choices whenever possible). Occasionally, a care worker may have to remind families and friends to treat the person with the same dignity and respect (such as around privacy, making their own choices and allowing them to speak for themselves). This is possible provided it is dealt with in a polite and tactful way.
It may be difficult for a person with dementia to effectively communicate personal wishes and challenge any human rights issues. If a care worker suspects that a person with dementia is being abused or their human rights are being infringed, they should talk to the person first and then report any concerns to their line manager. It is important that concerns are reported accurately and that any policies and procedures in place are adhered to.
Talking about human rights in a video, Scottish Dementia Working Group, Rosemary Griffin, whose husband has dementia, says it is important that people requiring care and those providing care have a ‘common understanding of what human rights are all about... and that all people’s rights can be met to the best of everyone’s ability'. She says some professionals regard people as service users rather than as a person. Her husband Peter says it is ‘often the professional person who can’t relate to other people... I have experience of that'.
Access and download additional resources
Further reading Open
Action on Elder Abuse, ‘What is elder abuse?’ online information.
Alzheimer Scotland (2009) Dementia rights: Charter of rights for people with dementia and their carers in Scotland, Edinburgh: Alzheimer Scotland.
Alzheimer’s Society (2013) ‘Formal care of people with dementia’, position statement, London: Alzheimer’s Society.
Alzheimer’s Society (2012) ‘Sex and dementia’, Factsheet 514, London: Alzheimer’s Society.
Alzheimer’s Society (2011) 'Short changed: protecting people with dementia from financial abuse', London: Alzheimer’s Society.
Alzheimer’s Society (2004) ‘Mistreatment and abuse of people with dementia’, Position statement, London: Alzheimer’s Society.
‘Coping with dementia: Safety in the home’: This NHS Health Scotland film includes information on the safe use of cookers and other appliances, open fires and advice on smoking and disposing of unwanted medicines.
Department of Health (archived) (2010) ‘One in three admit to avoiding people with dementia’, press release, London: Department of Health.
Department of Health and Home Office (2000) 'No secrets: Guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse', London: Department of Health/Home Office.
Equality and Human Rights Commission (2011) 'Close to home: An enquiry into older people and human rights in home care', Manchester: Equality and Human Rights Commission.
‘I have dementia, I also have a life – Peter Dunlop: Alzheimer’s Society TV commercial’: This video was used in the Living Well campaign which featured real people with dementia and was designed to increase public awareness about the condition and to show simple things everyone can do to help people live well with dementia. It is available to view on YouTube. In a further film, Making the commercials, Peter Dunlop tells his story about being diagnosed.
‘Lighting for people with dementia – David McNair’: In this film, David McNair, Director of Lighting at the Dementia Services Development Centre, Stirling, offers some hints on good lighting for people with dementia.
‘Living with dementia: I’m still here’: A powerful song, from Gadzuke Publishing, about living with dementia, from the person with dementia’s point of view. Written by Chad Steele and Joe Rubino to accompany the book ‘Dementia: The journey of caring for our father at home’, by Paul McCormick and Jean Thayer. Music recorded by Steele, written by Chad Steel and Joe Rubino, London Lane Records.
‘Peter and Rosemary Griffin, Scottish Dementia Working Group: Scottish Human Rights’: This video features Peter and Rosemary Griffin from the Scottish Dementia Working Group talking about human rights and older people, and the importance of recognising rights.
Social Care Institute for Excellence (2010) ‘Dignity in care guide’, London: Social Care Insititute for Excellence.
Useful links Open
The Alzheimer’s Society produces a range of resources, including the 2013 publication The dementia guide (available online and in hard copy) aimed at people with dementia and their carers immediately following diagnosis. The Society also publishes over 80 factsheets including After a diagnosis (471), Coping with memory loss (526), Staying healthy (522) and Staying involved and active (505).
This 2008 Health Scotland publication is written for people newly diagnosed with dementia. It covers topics such as ‘Staying well’, ‘Practical support’ and ‘Planning for the future’.
Living well with dementia: practical tips and advice
In this NHS Scotland film a number of people with dementia share practical tips for managing day-to-day living with dementia, such as putting up signs and instructions in the kitchen for safer meal preparation.
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.
An NHS Choices film about memory cafes and how they offer people with dementia and their carers the chance to socialise and share information. Here, one group talks about what the experience means to them and how the specific activities offered at the café benefit them.
Still going strong
This online booklet by the Mental Health Foundation is for people who want to find out more about living with dementia. It is particularly useful if you have recently been told you have dementia and want to know more about what this might mean. The material covers ‘Is it dementia?’ ‘Living with dementia’, and ‘Planning for the future’ and includes a section on strategies that people with dementia have found useful.
Related pages from this section Open