In Association With Learning work book to contribute to ... · PDF fileVersion 1- 01/06/11 In Association With Learning work book to contribute to the achievement of the underpinning

Version 1- 01/06/11

In Association With

Learning work book to contribute to the

achievement of the underpinning

knowledge for unit:

DEM 304

Enable rights and choices of

individuals with dementia

whilst minimising risks

Credit value 4

All rights reserved, no parts of this publication may be

reproduced, copied, stored or transmitted without the prior

permission of

The Learning Company Ltd

© The Learning Company Ltd

Q C F A C D i n H & S C L 3 L i c e n s e d u n t i l J u n e 1 2 U n i t D E M 3 0 4

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Learner’s Name:

Learner’s Signature:

(Please sign inside the box)

Employer’s Name:

Employer’s Address:

Start Date:

Anticipated End Date:

College Provider:

Learner’s Enrolment Number:

Mentor’s Name:

Assessor’s Name:

Internal Verifier’s Name:

I V’s Sampling Date:



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INTRODUCTION

This workbook provides the learning you need to help you to

achieve a unit towards your qualification. Your qualification on the

Qualification and Credit Framework (QCF) is made up of units, each

with their own credit value; some units might be worth 3 credits,

some might have 6 credits, and so on. Each credit represents 10

hours of learning and so gives you an idea of how long the unit will

take to achieve. Qualification rules state how many credits you need to achieve and

at what levels, but your assessor or tutor will help you with this.

Awarding Organisation rules state that you need to gather evidence

from a range of sources. This means that, in addition to completing

this workbook, you should also find other ways to gather evidence

for your tutor/assessor such as observed activity; again, your

assessor will help you to plan this.

To pass your qualification, you need to achieve all

of the learning outcomes and/or performance

criteria for each unit. Your qualification may

contain essential units and optional units. You’ll

need to complete a certain amount of units with

the correct credit value to achieve your

qualification. Your tutor/assessor can talk to you more about this if you’re worried and they’ll let you know how you’re doing as you

progress.

This workbook has been provided to your learning provider under licence by The Learning Company Ltd; your training provider is

responsible for assessing this qualification. Both your provider and

your Awarding Organisation are then responsible for validating it.

THE STUDY PROGRAMME

This unit is designed for individuals who are working in or wish to pursue a career in their chosen sector. It will provide a valuable,

detailed and informative insight into that sector and is an

interesting and enjoyable way to learn. Your study programme will increase your knowledge, understanding and abilities in your industry and help you to become more

confident, by underpinning any practical experience you may have

with sound theoretical knowledge.



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WHERE TO STUDY The best way to complete this workbook

is on your computer. That way you can

type in your responses to each activity

and go back and change it if you want

to. Remember, you can study at home,

work, your local library or wherever you

have access to the internet. You can also

print out this workbook and read through

it in paper form if you prefer. If you choose to do this, you’ll have to

type up your answers onto the version saved on your computer

before you send it to your tutor/assessor (or handwrite them and post the pages).

WHEN TO STUDY It’s best to study when you know you have time to yourself. Your tutor/assessor will help you to set some realistic targets for you to

finish each unit, so you don’t have to worry about rushing anything.

Your tutor/assessor will also let you know when they’ll next be

visiting or assessing you. It’s really important that you stick to the

deadlines you’ve agreed so that you can achieve your qualification

on time.

HOW TO STUDY Your tutor/assessor will agree with you the

order for the workbooks to be completed; this should match up with the other

assessments you are having. Your

tutor/assessor will discuss each workbook

with you before you start working on it,

they will explain the book’s content and how they will assess your

workbook once you have completed it. Your Assessor will also advise you of the sort of evidence they will

be expecting from you and how this will map to the knowledge and

understanding of your chosen qualification. You may also have a

mentor appointed to you. This will normally be a line manager who

can support you in your tutor/assessor’s absence; they will also confirm and sign off your evidence.



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You should be happy that you have enough information, advice and

guidance from your tutor/assessor before beginning a workbook. If you are experienced within your job and familiar with the

qualification process, your tutor/assessor may agree that you can

attempt workbooks without the detailed information, advice and

guidance.

THE UNITS We’ll start by introducing the unit and clearly explaining the

learning outcomes you’ll have achieved by the end of the unit.

There is a learner details page at the front of each

workbook. Please ensure you fill all of the details in

as this will help when your workbooks go through

the verification process and ensure that they are

returned to you safely. If you do not have all of the information, e.g. your learner number, ask your

tutor/assessor. To begin with, just read through the workbook. You’ll come across

different activities for you to try. These activities won’t count towards your qualification but they’ll help you to check your

learning.

You’ll also see small sections of text called “did you know?” These

are short, interesting facts to keep you interested and to help you

enjoy the workbook and your learning.

At the end of this workbook you’ll find a section called

‘assessments’. This section is for you to fill in so that you can prove

you’ve got the knowledge and evidence for your chosen

qualification. They’re designed to assess your learning, knowledge

and understanding of the unit and will prove that you can complete

all of the learning outcomes.

Each Unit should take you about 3 to 4 hours to complete, although some will take longer than others. The important

thing is that you understand, learn and work at your own pace.

YOU WILL RECEIVE HELP AND SUPPORT If you find that you need a bit of help and guidance with your

learning, then please get in touch with your tutor/assessor.

If you know anyone else doing the same programme as you, then

you might find it very useful to talk to them too.



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Certification When you complete your workbook, your

tutor/assessor will check your work. They will then sign

off each unit before you move on to the next one.

When you’ve completed all of the required workbooks

and associated evidence for each unit, your assessor

will submit your work to the Internal Verifier for

validation. If it is validated, your training provider will then apply for

your certificate. Your centre will send your certificate to you when

they receive it from your awarding organisation. Your tutor/assessor

will be able to tell you how long this might take.



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Unit DEM 304: Enable rights and choices of individuals with dementia whilst minimising risks

About this unit

This unit is about developing the learners’ knowledge,

understanding and skill of enabling the rights and choices of the

individual with dementia whilst minimising risks.

Learning outcomes

There are Four learning outcomes to this unit. The learner will be able to

1. Understand key legislation and agreed ways of working that

support the fulfilment of rights and choices of individuals with

dementia while minimising risk of harm

2. Maximise the rights and choices of individuals with dementia

3. Involve carers and others in supporting individuals with

dementia

4. Maintain the privacy, dignity and respect of individuals with

dementia whilst promoting rights and choices

Person-Centred Planning

A person-centred approach to providing care and support is as important for people who receive services (and their family or

significant others) as it is to staff. The emphasis should always be

on the person as an individual. In a personcentred approach the

unique qualities of the individual as determined by their life history and experiences, likes and dislikes, are their defining

characteristics. People with dementia have the same

rights as citizens. This includes the right to be treated

with dignity and respect. Care and support services

should build on individual strengths and abilities to

maximise and promote independence. Services should

enable people to feel valued and safe. The inherent

risks of life should be recognised.

However, given the potential vulnerability of some

people with dementia there is a need for a good

understanding of adult protection requirements.



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An approach based on the principles of rights, independence, choice

and inclusion used to help people with dementia work out what they want to do with their lives, and then determine how services and

support in the wider community can fit the needs of the individual

so that they are supported to achieve their aspirations.

It is accepted that both an individual’s priorities and aspirations,

and the services they need to fulfil these can and will change. As

such, planning is a continual process.

Person Centred Planning is a way of helping people to think about

what they want now and in the future. It is about supporting people

to plan their lives, work towards their goals and get the right

support. It is a collection of tools and approaches based upon a set

of shared values that can be used to plan with a person - not for

them. Planning should build the person's circle of support and

involve all the people who are important in that person's life.

Person Centred Planning is built on the values of inclusion and looks at what support a person needs to be included and involved in their

community. Person centred approaches offer an alternative to

traditional types of planning which are based upon the medical

model of disability and which are set up to assess need, allocate services and make decisions for people.

The key features of person-centred planning are:

� The person is at the centre and is in control

� Family members and friends are full

partners.

� Planning reflects a person’s

capacities, what is important to

them, and identifies the support

they need to be full citizens.

� Planning builds a shared commitment to action that uphold a

person’s rights.

� Planning leads to continual listening, learning and action and helps a person get what they want from life.

Assessment, care planning and reviewing are key aspects of best

practice. Documenting the service received by individuals is vital.

The way in which care services are documented will evidence what

is occurring for the individual as well as demonstrating whether

person-centred care is integral to the service provided.



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Biography-There are many examples of how life story work has had

a very positive benefit for people with dementia.

People's backgrounds are very important to understand particularly

if people are unhappy or become distressed. Particular activities in

the care home, or the approach by a member of staff may trigger powerful feelings related to painful events in someone's past.

There may also be repetitive behaviours and mannerisms, which are

hard to fathom. There are often clues in people’s life histories,

which can help to provide explanations and possible solutions.

Conversely there are also clues in people's life histories about

activities that people might enjoy and the skills they might retain.

This will inform staff about what they can do to make life in the care

home meaningful and relevant.

Personality-Personality is basically the way people approach the

world; their natural disposition. Some people are confident, outgoing and positive. They enjoy trying new things and can adapt

easily. Others tend to be more reserved and inward-looking. They

might be more anxious about change and being amongst unfamiliar

people.

Some people like to be organised, and efficient

whilst others are more laissez-faire and more

relaxed about life. People can also vary in the

extent to which they are emotional or like

having physical contact with others.

When a person is faced with living with

dementia the way they respond will depend on their personality.

Some will battle on, perhaps experiencing a lot of frustration as a

consequence, others will become depressed when nothing seems to

be going right and as a result become increasingly withdrawn and

depressed.

Recognising that individuals have different personalities helps staff

to respond in a way which is in tune with the person’s personality.

For example, a retired navy officer who likes to feel organised might feel more reassured if they are dressed smartly and have

everything in order around him. He may be averse to physical

contact and feel more comfortable with a formal approach from

staff.



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Physical health-This section will include the individual health needs,

which most homes are used to identifying and planning for. It should also address washing and bathing.

Clearly providing health support to people with dementia can have

added complications. Pain management is a particular concern as it may be hard for the person with dementia to recognise that they

are in pain or give expression to this. Providing physical

interventions to someone with dementia, e.g. injections, may also

pose challenges as the person with dementia may not recognise the

need for support or react negatively to being given assistance.

Continence and dementia raises some interesting issues. Toilet

training happens early in life and the associated skills and learning

are unlikely to be lost at early stages of dementia.

Problems however often arise because of perceptual processing and

negotiating the environment, i.e. a person who appears to be

incontinent may not be. It is that they have difficulty in completing the tasks associated with getting to the toilet.

Every effort should be made to promote self-

toileting by identifying and removing barriers and improving access to toilets. This should be given

careful consideration under the environment

section of the plan.

Eating and drinking have been included under

physical health because nutrition and hydration

are essential to physical well-being. It is an area of

study in its own right and an area in which it is easy to make

mistakes because people with dementia may not pick up on cues.

However eating and drinking are also strongly related to other

sections of the support plan particularly relationships and

occupation.

Environment-Careful observation of a person living in a care home

can reveal a lot about the way the environment supports them and

promotes access around the home and the extent to which it creates barriers. Sitting in the wrong location can be distressing

because of the stimuli in that area or because access to important

facilities is difficult.

Supporting mobility and manual handling has been included under

environment to stress the importance of promoting access.



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Medical Model of Disability

An approach to disability that says disabled people (because of their

impairment/s, mental health or learning disability) are unable to do

everyday activities that non-disabled people can take for granted.

The consequence of this approach is the emphasis placed on the individual’s ability to adapt to the world around them or the need

for people to limit their expectations and ambitions.

Social Model of Disability

An approach to disability that says the disadvantage and

inequalities experienced by people with disabilities are not caused

by their impaired body, mind or learning ability but by the society in

which they live.

The way in which buildings and transport are

designed or education, hospitals, councils and

government are run or how people think about disability can create barriers and lead to

discrimination, exclusion and prejudice if deaf and

disabled people’s needs are ignored. The

consequence of this approach is the emphasis on the need to remove physical barriers to buildings

and wider society, change attitudes and

expectations, and use the law to stop disability discrimination.

Legislation and Legal Principles

When approaching the identification, assessment and management

of risk, a knowledge of key legal principles and legislation will help

practitioners to make informed decisions that promote both the

involvement and interests of disabled adults and older people, and

their families. It will also support and promote best practice for

professional staff involved in supporting positive-risk-taking. An

understanding of the following legislation and legal principles is

important.

Human Rights

These are rights and freedom to which every human being is

entitled. The Human Rights Act 1998 brought the European

Convention on Human Rights into domestic law for the whole of the

UK on 2 October 2000. The Act:



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� Makes it clear that as far as possible United Kingdom courts

should interpret the law in a way that is compatible with Convention rights.

� Places an obligation on public authorities, including local

authorities, to act compatibly with Convention rights, i.e.

workers need to be aware of the human rights of those adults to whom they provide support.

� Gives people the right to take court proceedings if they think

that their Convention rights have been breached or are going

to be.

Of the 13 Convention rights included in the Act, the following are of

particular concern to workers who work with adults and older

people: the right to liberty and security; the right to respect for

private and family life; the freedom of thought, conscience and

religion; the right to freedom of expression; the right to marry and

found a family; and the prohibition on discrimination.

Mental Capacity

The Mental Capacity Act 2005 provides a statutory framework to

empower and protect vulnerable people who are not able to make

their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this. It enables

people to plan ahead for a time when they may lose capacity. The

whole Act is underpinned by 5 key legal principles:

� A presumption of capacity - every adult has the right to make

his or her own decisions and must be assumed to have

capacity to do so unless it is proved otherwise;

� The right for individuals to be supported to

make their own

decisions - people must

be given all appropriate

help before anyone

concludes that they

cannot make their own

decisions;

� That individuals must retain the right to make what might be seen as eccentric or

unwise decisions;

� Best interests – anything done for or on behalf of people

without capacity must be in their best interests; and

� Least restrictive intervention – anything done for or on behalf of people without capacity should be the least restrictive of

their basic rights and freedoms.



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Duty of Care

This is a requirement that a person acts towards others and the

public with the watchfulness, attention, caution and prudence that a

reasonable person in the circumstances would use.

If a person's actions do not meet this standard of care, then the

acts may be considered negligent, and any damages resulting may

be claimed in a lawsuit for negligence. Professional workers owe a

specific duty of care to the people they work with. The standard of

conduct and behaviour expected of people in their professional role

is higher than for an ordinary person because of the professional

training they have received and the level of responsibility they

assume.

Negligence

Negligence is carelessness amounting to the culpable breach of a

duty, i.e. failure to do something that a reasonable person (i.e. an average citizen in that same situation) would do, or doing

something that a reasonable person would not do. In cases of

professional negligence, involving someone with a special skill, that

person is expected to show the skill of an average member of his or her profession.

The sharing of information Information gathering and sharing is important. It is not just an

essential part of planning, risk assessment and management, but

also key to identifying a risk in the first place. However, the use

and sharing of information must respect the principles outlined in

the Data Protection Act 1998. When collecting new data or

information, it is important to tell the person or family affected the

purpose of the data collection, why

information gathering is necessary

and whom it will be shared with.

Numerous methods can be used to

gather information:

� Access to past records

� Self-reports during assessment

or reviews



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� Reports from significant others eg. carers, relatives or friends,

other team members / other teams, advocates, other statutory or voluntary agencies or the police, probation

services or courts, or external companies providing services.

� Observing discrepancies between verbal and non-verbal cues

� Rating scales or other actuarial methods � Clinical judgement based on evidence based practice

� Predictive indicators derived from research

Because decisions may need to be defended, during the

identification, assessment and management of risk, practitioners

must ensure that information shared or gathered is properly

recorded to be able to evidence the:

� Formulation of a logical, informed opinion as to the severity of

risk.

� Organisation of discussions with the adult, their family and

any health, social care, advocacy or independent sector

professional involved. � Inclusion of the person and their family in decision-making.

� Identification of conflicting opinions and interests. � Clarification of lines of accountability.

� Justification of actions.

DID YOU KNOW?

In a world survey, the USA has more

personal computers than the next 7

countries combined.

ACTIVITY ONE

Circle the words or phrases you would associate with sharing information

Biscuits Actions Risk

Data Cake Management Assessment Principles Shortbread



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Rights and choices

Dementia is an illness that over time affects the capacity of

individuals to make some or all decisions about their everyday lives,

including their money, health and welfare.

It gradually affects their ability to communicate, reason and act in

their own interests. The illness severely compromises their ability to

protect their own rights; because of this people with dementia are

often at greater risk of violence, injury or mental abuse, neglect or

negligent treatment, maltreatment or financial exploitation.

People with dementia still face stigma and discrimination in society

as well as a lack of equity of access to high quality dementia care

services. Awareness raising campaigns to increase public

understanding are beginning to change attitudes to dementia.

However, changing attitudes and practices to ensure that the rights

of people with dementia are fully recognised continues to be a

major challenge for bodies responsible for the provision of health and social care. In addition to distressing accounts from carers and

people with dementia, there is a growing body of evidence to

support the view that the rights of people with dementia are being

overlooked, neglected or in a few individual cases, deliberately breached.

Caring for someone with dementia can be stressful

because of the complex, unpredictable and

progressive nature of the illness and may have a

profound social, emotional, physical and financial

impact on carers, including increased risk of stress

related illness such as depression. Many carers feel that their views

and needs are overlooked by health and social care professionals

and that their right to support as partners in the provision of care is

not well recognised.

The Mental Capacity Act-The Mental Capacity Act is legislation which

increases the legal rights of the person with dementia to be

involved in decisions about their own health and care. The Act also

means that when somebody no longer has the mental capacity to

be involved in decision making themselves, their carer will have the right to be consulted about decisions being made on behalf of the

person with dementia, e.g. by health and social care professionals.

A supplement of the Act the “Deprivation of Liberties Safeguards “ (

DOLS) has been introduced to ensure that people living in care

homes or hospitals are treated in a way that keeps them safe, but

also allows them to be free to do the things they want to do.



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If it is considered that a person needs to be deprived of their liberty

to do something, the DOLS code of practice detail the procedures that need to be undertaken to ensure it is in the person’s best

interests.

Human Rights and Civil Rights-It is important to remember that a person with dementia has the same rights as other citizens, and this

should be respected.

The Human Rights Act 1998 has given people a clear legal

statement of their basic rights and fundamental freedoms. We also

have Civil Rights which are complex and far reaching.

Care Rights and Complaints-Whether a person wants to complain

about hospital treatment, or need advice about what their care

rights are, there are organisations who can help, but they may

wish to try the complaints procedures of the particular organisation

first. Bodies such as the Local Government Ombudsman, Health

Services Ombudsman and Care Quality Commission actually require a person to have tried to resolve the problem with the organisation

first before they can take action.

Independent Complaints Advocacy Service (ICAS)-The ICAS service provides help through the NHS complaints procedure. It is for

anyone with a complaint about their NHS treatment.

Advocacy-Advocacy is a way of helping people, in

partnership, to express their views and wishes, so

they can be heard.

Making sure that people listen to what a person

wants want to say can be difficult for many reasons.

These include embarrassment: not wanting to hurt

anyone's feelings: and, being unsure of rights. This is no different

for people with dementia.

What is different is that sometimes it is assumed that people with

dementia cannot make choices or do not know what they want. But,

if given time, clear information and the chance to say what they

want, many people can express their wishes and play their part in making informed decisions. This is where an advocate can help.

Decision making

It should not be assumed that people with dementia are unable to

make their own decisions. People with dementia should be

supported in making their own decisions for as long as possible.



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Legislation that supports and protects people with dementia who

are no longer able to make decisions is vital.

It is important to recognise that a diagnosis of dementia does not

necessarily mean that the individual can no longer make decisions

for themselves. People with dementia lose capacity over time, and the rate at which a person's condition deteriorates varies from

individual to individual.

Mental capacity describes the ability to make and communicate

decisions about some or all aspects of one's life. With earlier

diagnosis and new treatments, people are retaining capacity for

longer.

Even if a person with dementia can no longer make complex

decisions, such as where to live, it is likely that they can make more

basic decisions. Every effort should be made to get their input

wherever possible. Once the person with dementia begins to lose

capacity it is important that their carer is consulted and involved in decision making.

Carers are often not involved in making decisions about the care of

the person with dementia. There can also be uncertainty among carers and health and social care professionals about who can make

decisions on behalf of the person with dementia. Carers sometimes

feel that they cannot challenge the decisions of professionals.

Key Messages

� When a person with dementia lacks capacity to make a

decision, care workers must do what is in the person’s best

interests.

� The person with dementia should still be involved in making

the decision – we need to find out their views and wishes.

� People who know the person well – family, friends and care

staff – should be consulted.

� These decisions are known as ‘best

interests decisions’ and should where

possible limit restrictions placed on the

person. � Some people with dementia will have an

attorney or deputy with legal powers to

make some best interests decisions on

their behalf.

� It is a crime to wilfully ill-treat or neglect

a person lacking capacity to make some decisions.



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� Don’t assume that people with dementia can’t make decisions

themselves. � People with dementia should be given all possible support to

make their own decisions.

� You need to think about the best time, the best person and

the best way to talk about the decision. � You may need a translator if the person’s first language is not

English. You should also check if the person uses a hearing

aid.

� Pictures can help some people make their own decisions, but

they may need their glasses.

Involving carers in planning People performing a role usually best understand it. Talking to

carers can often give you information about the services you

provide that you could not get in any other way. They are your key partners and can frequently become patients themselves when

unsupported. All recent legislation on health and social care

emphasises the need to involve users and carers in the planning

and development of services.

Involving carers in planning and

improving services makes good sense:

they understand their needs and role.

Carers undertake tasks and duties that

most people don’t have the first idea

about.

Apart from their obvious knowledge

about their own needs, carers are very often best placed, next to

the cared for themselves, to talk about the needs of services users.

Carer involvement and participation means carers being fully involved in service design, delivery and review – not simply relying

on consultation. It places carers in a much more active role and

should be based on power sharing.

Carers should always be involved in any training on carer

awareness. Carers’ experiences tend to be personal and not shared

with the world. Much of what they do takes place at home. Their

timetables are dictated by the needs of the person they care for and

services they receive. You may think you know what they do, but it

is easy to be shocked and surprised by what they can tell you about

the reality of their lives. There is no better way of understanding

carers than listening to them.



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Supporting carers- 1. Recognise them:

Unlike parents, many carers are invisible in the workforce, reluctant

to discuss their personal situation and unaware of the support

available to them.

� Quote “carers” specifically in policies and other documentation

� Nominate a key contact in the workplace

� Set up an internal Carers Forum – to allow carers to meet

together occasionally – for mutual support, information

sharing and to raise the profile of caring in the organisation.

Allow time for carer staff to attend the Forum.

2. Support them:

Caring is often less predictable than child-care. Flexible working

policies need to include the flexibility to change arrangements as

caring responsibilities change. They also need to recognise the

possibility of emergencies arising. Implement flexible working policies compliant with the current law,

and allowing as much flexibility for change as is consistent with

business needs. Also organise training for managers in carer

awareness.

3. Inform them:

The impact of caring can be much

better managed and controlled if carers

have good information about services

and support available.

Why do we take risks? The experience of many people who

have to rely on human services for their

support is that risk is the reason given to them by services why

they cannot do the things that other people are doing every day.

Risk is sometimes used as a verb: a person ‘risks’ doing something,

and sometimes a noun: a person is labelled as being a ‘risk to

society’. Risk decision making is often complicated by the fact that the person or group taking the decision is not always the person or

group affected by the risk.

Risk is the probability that an event will occur with beneficial or

harmful outcomes for a particular person or others with whom they

come into contact.



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An event can occur because of:

� Risks associated with impairment or disability such as falls

� Accidents, for example, whilst out in the community or at a

social care service

� Risks associated with everyday activities that might be increased by a person’s impairment or disability

� The use of medication

� The misuse of drugs or alcohol

� Behaviours resulting in injury, neglect, abuse, and

exploitation by self or others

� Suicide or self-harm

� Aggression and violence

The type of event depends on the nature of the person, their

relationships with others and the circumstances they find

themselves in. Risk is often thought of in terms of danger, loss,

threat, damage or injury. But as well as potentially negative

characteristics, risk-taking can have positive benefits for individuals and their communities.

The difference for many people with when they take risks is that

they will do so when being supported by personal assistants or a support worker from a statutory service or an independent agency.

Also, there will be times when a person might take risks on their

own, but a statutory service might be held responsible if harm to

them or others occurs.

A balance therefore has to be achieved

between the desire of person to do everyday

activities, the duty of care owed by services

and employers to their workers, the duty of

care owed to users of services, and the legal

duties of statutory and community services

and independent providers. As well as

considering the dangers associated with risk,

the potential benefits of risk-taking have to be

identified (‘nothing ventured, nothing gained’).

This should involve everyone affected – adults

who use services, their families and practitioners.

Differences in power and status affect the extent to which people

influence risk decision making – the views of developers wishing to

build a dam across a river may well be given more weight than

those of people living nearby that river.



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Where a person with less power and status might wish to take a

risk, and the consequences of that risk would affect more powerful people, it is more likely that they will be prevented from taking it.

This is the problem faced by people supported by services and

professionals, where those services and professionals fear various real and imagined consequences to them of the risk taking of the

people they support.

What is risk taking?

For many people risk is an accepted part of life. But people with

learning disabilities and older people are often discouraged from

taking risks. Either because of their perceived limitations or fear

that they or others might be harmed, resulting in criticism or

compensation claims against health, social care and other

community based services.

Changes in disability, social care and health policy now mean that people are being actively encouraged to increase their

independence by, for example, travelling independently, and by

being fully involved in mainstream society through education, work

and leisure. For people with disabilities, moves away from a medical model to a social model of disability now means there is an

emphasis on the discrimination and exclusion created by social and

cultural barriers. This contrasts with a prior emphasis on the

problems resulting from people’s impaired bodies or minds or

learning ability.

At various times those working in health and

social care can be faced with a legal

requirement, such as organisations have a

duty of care, whilst at another point they

are told they have to empower people and

to also afford them the dignity of risk.

Whilst such concepts do not necessarily

have to be in conflict there can be confusion

and tension about how to approach either, especially when

considering their meeting.

Times have changed, different philosophies of care and changing

public attitudes have rightly brought about the potential for a better

and more inclusive lifestyle for individuals than they would have

experienced just a couple of generations ago. At the same time we

are also faced with changes regarding over-bureaucratisation of

care and an emerging blame culture, arising from an increasingly

litigious society.



Page 22

The worst thing for staff and services supporting individuals would

be to see the scenario as a potential minefield not willingly entered. With sound policies and appropriate safeguards, individuals can be

supported to embrace reasonable and responsible risk taking.

Every opportunity contains risks – a life without risk is a life without opportunities, often without quality and without change.

Traditional methods of risk assessment are full of charts and scoring

systems, but the person, their objectives, dreams and life seem to

get lost somewhere in the pages of tick boxes and statistics.

A person centred approach seeks to focus on people's rights to have

the lifestyle that they chose, including the right to make 'bad'

decisions. The approach described here uses person centred

thinking tools, to help people and those who care about them most

think in a positive and productive way about how to ensure that

they can achieve the changes they want to see while keeping the

issue of risk in its place.

This in essence is a process to gather, in

partnership with the person, the fullest

information and evidence to demonstrate that we have thought

deeply about all the issues involved.

Decisions are then guided by what is

important to the person, what is needed

to keep them healthy and safe and on what the law says.

Person Centred Approaches, with their focus on the person and

strategy of building an alliance of supporters around the person can

often cut across this entrenchment and generate new and creative

ways forward, providing that services are prepared to face this

challenge. This is now being recognised by government

departments, the Department of Health publication ‘Independence

Choice and Risk’ wholeheartedly commends person centred

approaches for everyone because they identify what is important to

a person from his or her own perspective and find appropriate

solutions. Regulators too want to see the balance of risk decision

making shifting toward supporting individuals who choose to take informed risks in order to improve the quality of their lives.

For some services, approaches to risk have in the past been

concerned with avoiding potentially harmful situations to adults who

use services and staff.



Page 23

Now to support people to travel independently or take part in

everyday activities means accepting there are risks that cannot be avoided but can be minimised and prepared for.

DID YOU KNOW?

The symbol on the phone described as the "hash" key (#) is called an octothorpe.

ACTIVITY TWO

Circle the words or phrases you would associate with risk taking

Lion Solutions Approaches Changes Positive Tiger

Prepared Lynx Activities

What is positive risk-taking?

Positive risk-taking is: weighing up the potential benefits and harms of exercising one choice of action over another. Identifying the

potential risks involved, and developing plans and actions that

reflect the positive potentials and stated

priorities of the service user. It involves

using available resources and support to

achieve the desired outcomes, and to

minimise the potential harmful outcomes. It

is not negligent ignorance of the potential

risks it is usually a very carefully thought

out strategy for managing a specific situation or set of circumstances.

For services, this means:

� Being empowering

� Working in partnership with adults

who use services, family carers and advocates



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� Developing an understanding of the responsibilities of each

party � Helping people to access opportunities and take worthwhile

chances

� Developing trusting working relationships

� Helping adults who use services to learn from their experiences

� Understanding the consequences of different actions

� Making decisions based on all the choices available and

accurate information

� Being positive about potential risks

� Understanding a person’s strengths

� Knowing what has worked or not in the past where problems

have arisen, understanding why

� Ensuring support and advocacy is available to disabled adults and older people, particularly if things begin to go wrong for

someone

� Sometimes tolerating short-term risks for long-term gains

� Through regular reviews gradually withdrawing inappropriate services that create dependency

� Having an understanding of the different perspectives of

people, family carers, practitioners, advocates and services

� Developing person-centred and transition planning for adults to support their involvement and that of their families in

decision-making alongside practitioners

� Ensuring staff use the guidance, procedures and risk

assessment / management tools adopted by their service, and

receive appropriate support and supervision from their

immediate line manager

Risk identification

Identification of a risk should involve a balanced approach, which

looks at what is and is not an acceptable risk. It should be a view

based on a person’s aspirations that aims to support them to get

the best out of life. The views of adults

who use services and their families are

equally as important as those of

practitioners.

Not every situation or activity will entail a

risk that needs to be assessed or

managed. The risk may be minimal and

no greater for the person concerned than it would be for any other

ordinary person.



Page 25

For example, if a person with learning disabilities living in residential

care is used to travelling independently, taking a train trip to London where family meets them at Kings Cross might not

necessarily entail a risk that needs to be assessed or managed. Or

a disabled parent and their children might be facing the same risks

as those faced by any other family, therefore the involvement of workers might be inappropriate or even discriminatory.

Risk Assessment

� Risk assessment is the activity of collecting information

through observation, communication and investigation. It is

an ongoing process that involves considerable persistence and

skill to assemble and manage relevant information in ways

that become meaningful for the users of services (and

significant other people) as well as the practitioners involved

in delivering services and support.

� To be effective it needs people, their families, carers,

advocates and practitioners to interact and talk to each other about decisions that have been taken and their

appropriateness in the light of experience.

� Each assessment should

identify a review date and include the signatures of

everyone involved in the

assessment.

� If anyone involved in the care plan or the provision of support

does not agree with the

assessment, they should be

asked to document their

concerns and reasons.

� The influence of historical

information in any assessment should be concerned with

understanding what happened if risk-taking resulted in harm

rather than the stigma of the events themselves.

Where a risk assessment is needed, a decision then has to be taken

about whether or not positive risk-taking is necessary to achieve

certain outcomes for the person concerned. It will not always be appropriate to take positive risks but this has to be determined in

partnership with the person affected, and their family where

appropriate. It is a professional judgement that should not be

influenced by an overly cautious approach to risk. At the same time

though, positive risk-taking is not negligent ignorance of the

potential risks – nobody benefits from allowing risks to play their

course through to disaster.



Page 26

During risk assessment, the following should be considered:

� People should not simply be seen as the source of risk – their

view of risk and that of their families and carers have a

prominent place in the identification, assessment and

management of risk. � When gathering information from adults, or family carers,

workers need to emphasise the importance of information

that is both accurate and identifies any concerns or issues

that may increase the probability of an event occurring.

� There should be a focus on a person’s strengths to give a positive base from which to develop plans that will support

positive risk-taking. Consider the strengths and abilities of

the adult, their wider social and family networks, and the

diverse support and advocacy services available to them.

� A person-centred approach should be used to

identify, assess and manage risk. This

depends on the willingness of practitioners to

work in this way and for some may present a challenge to traditional ways of working.

� ‘Positive risk-taking’ may sometimes need to

distinguish between the short-term, and long-

term position. Short-term heightened risk may need to be tolerated and managed for

longer-term positive gains.

� Taking risks can give people confidence and enables them to

manage their involvement in community activities better.

� An assessment needs to be clear if it is to protect the

individual or others.

� Every individual or agency directly affected should be involved in the development of a positive risk management plan that

agrees on the approach to risk and how identified risks will be

supported. Consensus helps to support positive risk-taking

and promotes a person-centred response.

Risk Management

Risk management is the activity of exercising a duty of care where

risks (positive and negative) are identified. It entails a broad range

of responses that are often linked closely to the wider process of care planning. The activities may involve preventative, responsive

and supportive measures to reduce the potential negative

consequences of risk and to promote the potential benefits of taking

appropriate risks. These will occasionally involve more restrictive

measures and crisis responses where the identified risks have an

increased potential for harmful outcomes.



Page 27

Decisions though need to be negotiated and agreed between all

parties, and clearly understood.

When carrying out risk management, the following must be

considered:

� Decision making in relation to risk must be clearly evidenced

on relevant documentation.

� High quality supervision and support are essential to provide

an opportunity to discuss concerns and refine ideas, as well as

review the progress of the implementation of risk

assessments.

� Managers / supervisors need to recognise that there is joint

accountability / ownership for risk decisions. Practitioners

need to know that support is available if things begin to go

wrong.

� Risk-taking is further enhanced by limiting the duration of the

decision i.e. working to shorter timescales and with smaller

goals broken down. This is supported by having mechanisms in place to check on progress; and an ability to quickly change

previous decisions when needed, including intervening in a

more restrictive way where necessary.

� Risk management should become part of a practitioner’s ongoing

work with an adult and events

should be reflected in people’s case

notes where appropriate.

� Individual practitioners can

reasonably be expected to accept

responsibility for the professional

standards of conduct set out by

their professional body. But it is

the collective responsibility of the

team to share information, make

decisions and plan.

� Issues of confidentiality need to be considered by practitioners, officers and their managers /

supervisors to ensure client and public safety.

� This approach supports the recognition of an individual’s right to make informed decisions about the care or support they receive. It recognises the concept of empowerment when

working with vulnerable people.

� The rights of adult users of services and family carers to make

decisions are acknowledged. In certain circumstances these

can be overruled, particularly when the individual is regarded

as lacking in ‘mental capacity’ in relation to a specific decision.



Page 28

Where someone lacks mental capacity, anything done for or

on their behalf must be in their ‘best interests’.

� Where this happens, practitioners should refer to guidance on

best practice in dealing with decision-making and incapacity,

and on the principle of best interests of the person who lacks capacity.

� The assessment and management of risk should be, as far as

possible, a multi-disciplinary exercise.

� Positive risk-taking needs to be underpinned by contingency planning for the fears and possibilities of failure. This will help

to prevent some harmful outcomes, and minimise others.

Risk-taking should be pursued in a context of promoting

opportunities and safety not negligence. Therefore, adult

users of services, their families and practitioners should be

encouraged to learn to think about ‘what ifs’ and

contingencies as part of their day-to-day

thinking.

� Where people are behaving recklessly, risk management may include the setting of explicit

boundaries to contain situations that are

developing into potentially dangerous

circumstances for all involved. If a person or their carer makes a decision to continue behaviour that is reckless, a

record should be made of their decision and when it was

taken. If workers are affected by this decision, any support

service being provided will be reviewed to ensure that how it

is delivered guarantees the safety of any worker involved.

� Positive risk-taking should be ingrained into the working

culture and be reflected in the content of team training. It is

not a one-off experiment, but the natural first line of thinking.

Accessing complaints systems

Dementia affects people's thinking, reasoning and memory, but the

person's feelings remain intact. A person with dementia will

probably be sad or upset at times. In the earlier stages, the person

may want to talk about their anxieties and the problems they are

experiencing.

� Try to understand how the person feels.

� Make time to offer them support, rather than ignoring them or

'jollying them along'.

� Don't brush their worries aside, however painful they may be,

or however insignificant they may seem. Listen, and show the

person that you are there for them.



Page 29

Make sure that, whenever possible, you inform and consult the

person about matters that concern them.

Give them every opportunity to make their own choices and this

includes making a complaint if they are not receiving the level of

service they should be.

Not every provider will live up to every aspect of person-centred

care all the time. In some settings, people with dementia may even

be vulnerable to physical or psychological abuse or general neglect.

Staff may adopt a patronising or degrading attitude.

In these situations, the person with dementia may not be willing or

able to complain - either because it is difficult for them to 'make a

fuss' or because they are afraid of being victimised.

Anyone who wants to raise a

concern should do so, to begin

with, in a private meeting with the manager or another senior member

of staff, letting them know that

they have a serious matter to

report. A constructive suggestion for how things could be improved may help prevent a repetition of the problem. If the outcome of this

meeting is not satisfactory, the person should ask for a copy of the

home's complaints procedure and then decide whether or not to

register a formal complaint.

All care homes must be legally registered. This means that they

must have a simple, clear and accessible complaints procedure. The

procedure should set out the stages and timescales for the process.

Complaints should be dealt with promptly and effectively within a

maximum of 28 days. A good complaints process will not only

investigate what happened on a particular occasion but will also

identify weaknesses in the overall processes of care and make sure

that the same situations or mistakes do not keep occurring.

The provider should keep a record of all complaints, which should

include details of investigations and any action taken. This should

be made available to the person lodging a complaint as they may want to refer the complaint directly to the local office of the Care

Quality Commission, which is responsible for ensuring that care

homes comply with the law.



Page 30

Relatives or friends of the person with dementia may have general

or specific concerns about the level of care provided. Any home that is doing its best to provide good quality care has nothing to fear

from complaints, which should be seen as a positive opportunity to

improve.

From April 1 2009, a new complaints system was introduced for all

council adult social care departments, health services and hospitals

in England. This procedure sets out a single co-ordinated system of

handling complaints. The approaches will help providers to put

things right quickly and use the experience to improve services and

prevent future problems. T

There is a two stage process:

Stage One - Local resolution Stage Two – Local Government Ombudsman.

The focus will be on:

� Having a more personal approach

to complaints handling

� Making arrangements more flexible and simpler

� Treating complaints according to

their individual nature

� Focusing on a quick local

resolution by looking closely at

what people want to happen as a

result of their complaint.

Most complaints can be sorted out quickly to everyone’s

satisfaction. It is important however, that a person knows how to

take their complaint further if necessary. When they make a

complaint, there are two stages to the complaints procedure:

Stage One

� The setting will acknowledge the complaint within three

working days and contact the person either by phone or in person

� The setting will make sure they understand what has gone

wrong, what a person would like to see happen and agree the

best way to put things right and to provide the best result

� The setting will explain how the complaint will be investigated

and agree a time in which to provide a response



Page 31

� The complaint will be overseen at all times by our Customer

Relations and Complaints Manager so you always have a named contact.

Stage Two

If a person does not feel that the response they receive has

resolved their complaint to their satisfaction, they are entitled to

take their complaint further to the Local Government Ombudsman.

Maintaining privacy and dignity

People with dementia usually need more and more assistance with

their personal hygiene. As the disease progresses, they may lose

the ability to manipulate objects such as combs and toothbrushes.

They might also forget what these objects are and, more important,

what they are used for, forget that a task needs doing, be under the

impression that it has already been done, or lose interest in keeping

clean and looking good. However, the fact that the person needs more help does not necessarily mean that they will appreciate

receiving it. Sometimes they might put up quite a struggle. They

may resent being dependent on you and feel that you are invading

their privacy. Furthermore, they might not feel that it is important to wash regularly or look after their appearance. As a carer, you are

faced with the task of providing the right degree of assistance for

the person’s changing needs, whilst respecting their need for

privacy and independence.

There are several ways that you can

provide assistance, e.g. prompting,

explaining what to do, demonstrating

what to do, physically assisting, laying

out clothes in the order they should be

put on, etc. It is important that you

provide just the right amount of

assistance so that the person with

dementia retains a certain degree of

independence and does not lose the incentive to try. If they

repeatedly fail, it is natural that they will lose interest in trying. For

this reason it is important to allow sufficient time to dress, provide encouragement to carry on and reassure the person. You should try

not to draw unnecessary attention to mistakes but, depending on

the person concerned, it might be possible to use humour to make

light of mistakes. If they have lost the incentive to make an effort,

you might find that giving the occasional compliment helps. Noticing

that they look good in something and taking the trouble to

comment on it, might make the person more interested in trying.



Page 32

If you have difficulty convincing the person with dementia to get

changed, you might be able to replace dirty clothes with clean ones at night.

However, they might object to this or think that people are stealing

their clothes. In such cases, you might find it easier to purchase similar clothes so that it is not as noticeable. Some people with

dementia suffer from incontinence (please refer to chapter on

incontinence). They may therefore find it particularly embarrassing

to change clothes in front of you and may refuse to get changed for

this reason. If the person with dementia has had an “accident”, you

will probably find that it helps both at the time and in the long run

to have an understanding, non-critical attitude.

Effective communication improves the quality of life of people with

dementia. It is essential that efforts are made to enhance

communication, make time to listen and to understand.

Key indicators:

�� staff are aware of the different communication needs of

different individuals including taking account of any hearing

or visual problems or where English is a second language �� staff are trained to understand the importance of verbal and

non-verbal communication and barriers to effective

communication

�� a multi-disciplinary approach is used to implement

communication strategies

�� staff are able to access specialist advice and information

�� advocacy services are utilised

DID YOU KNOW?

A pregnant goldfish is called a twit.



Page 33

ACTIVITY THREE

Circle the words or phrases you would associate with privacy

and dignity

Barriers Advocacy Cow Sheep Trained Listen

Effort Pig Quality

UNIT DEM 304: SIGN-OFF

Assessor’s Name: _________________________________

Assessor’s Signature:_________________________Date:___________

Learner’s Name: __________________________________

Learner’s Signature:_________________Date:___________

Mentor’s Name: ________________________________

Mentor’s Signature: _________________Date:___________



Page 34

UNIT DEM 304: ASSESSMENT

ASSESSMENT ONE

Explain the impact of key legislation that relates to fulfilment of rights and choices and the minimising of risk of harm for an individual with dementia

ASSESSMENT TWO

Evaluate agreed ways of working that relate to rights and

choices of an individual with dementia



Page 35

ASSESSMENT THREE

Explain how and when personal information may be shared

with carers and others, taking into account legislative frameworks and agreed ways of working

ASSESSMENT FOUR

Explain how the best interests of an individual with dementia

are considered when planning and delivering care and support



Page 36

ASSESSMENT FIVE

Explain how an individual with dementia can be enabled to

exercise their rights and choices even when a decision has not been deemed to be in their best interests

ASSESSMENT SIX

Explain why it is important not to assume that an individual

with dementia cannot make their own decisions



Page 37

ASSESSMENT SEVEN

Describe how the ability of an individual with dementia to

make decisions may fluctuate

ASSESSMENT EIGHT

Explain how carers and others can be involved in planning support that promotes the rights and choices of an individual

with dementia and minimises risk of harm



Page 38

ASSESSMENT NINE

Describe how a conflict of interest can be addressed between

the carer and an individual with dementia whilst balancing rights, choices and risk

ASSESSMENT TEN

Describe how to ensure an individual with dementia, carers

and others feel able to complain without fear of retribution



Page 39

ASSESSMENT ELEVEN

Describe how to maintain privacy and dignity when providing

personal support for intimate care to an individual with dementia

ASSESSMENT TWELVE

Explain how the key physical aspects of the environment are

enabling care workers to show respect and dignity for an individual with dementia



Page 40

ASSESSMENT THIRTEEN

Explain how the key social aspects of the environment are

enabling care workers to show respect and dignity for an individual with dementia

UNIT DEM 304: ASSESSMENT SIGN-OFF

Assessor’s Name: _________________________________

Assessor’s Signature:________________Date:___________

Learner’s Name: __________________________________

Learner’s Signature:_________________________Date:___________

Mentor’s Name: ___________________________________

Mentor’s Signature:_________________Date:___________



Page 41

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