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Standards of Care for Dementia in Scotland: Action to support the change programme, Scotland's National Dementia Strategy

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I have the right to be regarded as a unique individual and to be treated with dignity and respect

The Charter of Rights for People with Dementia and their Carers in Scotland states… ( >1)

When this right is respected

People with dementia have the right, regardless of diagnosis, to the same civil and legal rights as everyone else.

People with dementia and their carers have the right to be able to enjoy human rights and fundamental freedoms in every part of their daily lives and wherever they are, including full respect for their dignity, beliefs, individual circumstances and privacy.

People with dementia and their carers have the right to have the full range of human rights respected, protected and fulfilled. In addition to those explicitly contained in the Human Rights Act 1998, these include:

  • the right to live in dignity and security and be free of exploitation, violence and physical, mental or sexual abuse
  • economic, social and cultural rights including the right to an adequate standard of living including, social protection.

People with dementia and their carers have the right to be free from discrimination based on any grounds such as age, disability, gender, race, sexual orientation, and religious beliefs, social or other status.

People with dementia will

Be valued and treated at all times as a person, with dignity and respect.

Be listened to, feel included and treated fairly.

Have their individual needs, preferences and aspirations met.

Receive information and the necessary support they need to continue to participate in decisions which affect them now and in the future.

And

Will not experience inhuman or degrading care or treatment. ( >3)


People with dementia will...

Reporting Code

Be treated with dignity and respect.

Service providers will ensure that the actions of their staff and their policies and procedures demonstrate

An awareness of what the person with dementia and their family might be experiencing.

A, F

That the appropriate action is taken to ensure each person with dementia is treated with respect.

A, F

An understanding of different cultural, ethnic and other barriers to good communication ( e.g. learning disability) and the steps taken to overcome these.

A, F

That the appropriate level of support is given to the person with dementia to access the food and drink the need to ensure a healthy diet.

A, F

That the person with dementia has access to their own personal belongings and memorabilia to personalise their physical environment.

E, S

That consideration is given to whether legal intervention is required to protect rights and provide safeguards if limits are being placed on the personal freedom of the person with dementia.

A, I

Have their individual needs, preferences and aspirations met.

Service providers will ensure that the actions of their staff and their policies and procedures demonstrate

That care plans are person centred and strive to maintain the relationships, natural supports and routines important to the person with dementia.

A

That systems are in place to collect and share information from the person with dementia and/or their carer about their personal preferences, choices and expectations of the service.

A, F

Knowledge of whether the person with dementia has appointed someone as their welfare power of attorney or if there is a welfare guardian. ( >2a)

A

That the person with dementia retains as much choice in day-to-day activities as possible, e.g. what and when to eat, when to get up and go to bed, when to go outside.

A, F

That staff use a variety of communication aids to help communication, including the use of life story books, talking mats, digital stories, interpreters as appropriate and referral to speech and language therapy.

A

Be listened to, feel included and treated fairly.

Service providers will ensure that the actions of their staff and their policies and procedures demonstrate that

People with dementia have equitable access to services in the same way as any other person.

F, P

People with dementia should know how to make a complaint about services and receive support and assistance ( e.g. from independent advocacy) to make a complaint

E, F

Receive information and the necessary support they need to continue to participate in decisions which effect them now and in the future.

Service providers will ensure that the actions of their staff and their policies and procedures demonstrate that

Staff understand that an individual's capacity can fluctuate depending upon particular circumstances and that they do not make assumptions about capacity to be involved in decision making.

F, I

Staff give people with dementia the opportunity to be involved in making decisions and choices, and the person is afforded adequate time and information is given in a variety of formats.

F, I

People with dementia are given the assistance they need to register and exercise their right to vote where they retain the capacity to do so.

F,P

Treating Anna as an unique individual

Anna was admitted to a care home for a period of respite care as her husband was unwell.

Anna was diagnosed with dementia about five years ago. Anna is Polish and came to live in Scotland with her husband after the Second World War.

Her husband, Alexander, was worried about how she would settle into the care home; her use of English was reducing and she was reverting back to using her Polish language, particularly if she was worried or stressed.

Anna's social worker spoke to the manager of the care home and they took some steps to make it easier for Anna during her stay there.

Alexander was asked to provide some family photographs and the care home had these copied and laminated and placed around her room in the care home. They also asked her husband to make sure she brought a number of personal mementos with her, and her favourite snacks.

The social worker spoke to Alexander and asked him to write down some common Polish phrases and words that Anna would understand. The social worker gave these to the care home manager who copied them and gave them to the care home staff.

The care home manager spent a lot of time before the admission speaking to Alexander to find out about what Anna liked to do and her preferences for what she liked to eat and when she liked to get out of bed etc, ensuring that a care plan was in place on the day of her admission.

Anna found the first night in the care home very difficult; she was disorientated and frightened but was reassured by the staff who knew just what to say and what to do to help her settle in.

The admission went well and Anna went home two weeks later to her husband who had enjoyed a good rest and took up the offer of regular respite admission to the care home.

Not treating Robert with dignity and respect

Robert was diagnosed with Parkinson's disease and dementia about three years ago. He now lives in an NHS continuing care ward because he has specialist nursing care needs and sometimes displays behaviours such as shouting, swearing and hitting out at people.

Sometimes, Robert tried to leave and get on the local bus. He recently managed to get on the bus and staff had to persuade him to return to the ward.

Staff were worried about him getting lost so they decided to use an electronic tagging device to alert them when he leaves. He was given a tag to wear like a watch, which sets off an alarm if he goes beyond the front door.

One day, another visitor saw Robert leave the ward, then heard a very loud alarm shrieking and observed nurses running out of the ward. The visitor was told not to worry about the noise, that it was just Robert's alarm.

Later, the visitor noticed Robert walking around the ward with just his underpants and a T-shirt on. The visitor asked the staff if they could help Robert to get dressed but the staff said they just leave him to do this as they were too frightened to intervene in case he hit them.

The visitor made a complaint to the hospital manager about how Robert was being treated. He felt staff were not treating Robert with dignity or respecting his human rights, reasoning that:

  • The alarm used was stigmatising, it identified Robert as having particular needs.
  • Staff gave him (the visitor) private information about Robert that the visitor neither asked for nor needed.
  • Staff were placing limits on Robert's personal freedom and it was not clear under what authority they were doing that.
  • Robert's personal dignity was not being respected by allowing him to walk around semi-dressed in front of strangers in the ward; the visitor thought that neither he nor anyone else would like to think this is how they would be treated in similar circumstances.
  • Staff were too frightened to intervene, which meant it was likely they did not have the appropriate training or expertise to care for Robert, a situation which required urgent review.

The hospital manager arranged an immediate multi-disciplinary review of the care and treatment Robert was receiving. Some of the issues covered in this review included:

  • Assessing the need to use mental health and/or incapacity legislation.
  • Deciding whether the use of the alarm system was appropriate.
  • Considering whether the ward team, with support and training from the mental health team, could meet Robert's needs and respect his dignity.
  • Considering whether Robert would receive better care and treatment elsewhere.

Following this, the hospital manager contacted independent advocacy services to arrange an advocacy worker to come and meet with Robert.