Unit 105 (3565) (DEM304 4222-36) Knowledge WorkbookEnable rights and choices of individuals with dementia whilst

minimising risks

Learner name: C&G Reg. No:

Learner signature:

Date completed:

Recommended GLHS: 15

Assessor name: OXCARE 721724

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.You will also be observed in your workplace environment You must understand your organisation’s policies and procedures before attempting to answer the learning outcomesRead the guidance on the terms used in this workbook before you start.

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Centre

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Learner Assessment RecordUnit Number: 105 (DEM304)Unit Title: Enable rights and choices of individuals with dementia whilst minimising risksDate Workbook submitted: 1st ………………………….. 2nd …………………………..

LearningOutcome

Assessor Feedback 1st Submission OutcomePass/Refer

2nd SubmissionOutcomePass/Refer

1.1

1.2

1.3

2.3

2.4

3.2

3.3

4.1

Learning outcomes 2.1; 2.2; 3.1; 4.2; 4.3 must be assessed in a real work environment and your Assessor will agree additional methods to cover these, including observation of your practice

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Assessor comments to Learner

Target date and action plan for resubmission (if applicable)

Outcome of second submission

I confirm that this assessment has been completed to the required standard and meets the requirements for validity, currency, authenticity and sufficiency

Assessor Signature: Date:

I confirm that the assignment work to which this result relates, is all my own work

Learner Signature: Date:

Internal Verifiers Signature: Date:

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Additional guidance

Key legislation:

• Human Rights Act 1998

• Mental Capacity Act 2005

• Adults with Incapacity (Scotland) Act 2000

• Mental Health Act 2007

• The Disability Discrimination Act 1995

• Safeguarding Vulnerable Groups Act 2006

• Carers(Equal opportunities) Act 2004

Agreed ways of working: Include policies and procedures where these exist; they may be less formally documented with micro-employers

An individual is someone requiring care or support

Carers and others may be:

• Care worker

• Family

• Advocate

• Colleagues

• Managers

• Social worker

• Occupational Therapist

• GP

• Speech and Language Therapist

• Physiotherapist

• Pharmacist

• Nurse

• Specialist nurse

• Psychologist

• Psychiatrist

• Independent Mental Capacity Advocate

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• Independent Mental Health Advocate

• Advocate

• Dementia care advisor

• Support groups

Best interests: This is an essential aspect of the Mental Capacity Act (2005). To support the financial health, emotional and social well being of an individual and to take into consideration their past and present wishes and feelings, advance directives, beliefs and values

Key physical and social aspects Physical:

• Signage

• Colour

• Furniture

• Flooring

• Technology

• Room layout

• Storage

• Space for personal belongings

Social:

• Communication skills

• Positive approach

• Relationship centred approach

• Professional boundaries

• Abilities focus

• Whole team approach

For more detailed information please research:

www.alzheimers.org.uk

http://www.scie.org.uk/publications/dementia/index.asp

http://www.logontocare.org.uk/e-learning0/

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Learning Outcome 1.1 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

In England and Wales a new law about making decisions started in 2007 called the Mental Capacity Act. It covers all decisions people may make for themselves, however little or big, from deciding whether to have a bath or shower to selling a house. The law says we must start by assuming that people can make their own decisions. This includes people with dementia.How can you help a person with dementia to make decisions now and for their future? Click on the link to explore some of the big dilemmas of making decisions with people with dementia. http://www.scie.org.uk/publications/dementia/decisions/index.asp

Then 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 (minimum 200 words)

For more information on the mental capacity act go to: http://www.alzheimers.org.uk/site/scripts/documents_info.php?&documentID=354

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The Office of the Public Guardian provides a range of useful information online, including the Mental Capacity Act Code of Practice, available at: www.publicguardian.gov.uk/mca/code-of-practice.htm

It has also produced the following booklets, which are available as free downloads at: www.publicguardian.gov.uk/forms/additional-publicationsa-newsletters.htm or, for printed copies, by email reorder@inprintlitho.com or by phone on 023 8087 8038.

Making decisions... about your health, welfare or finance. Who decides when you can't (for people who may lack capacity, or may do so in future)

Making decisions - Helping people who have difficulty deciding for themselves (for unpaid carers)

Making decisions - A guide for people who work in health and social care Making decisions - A guide for advice workers

The Deprivation of Liberty Safeguards (DoLS) are part of the Mental Capacity Act (2005). They aim to protect people in care homes and hospitals from being inappropriately deprived of their liberty. The safeguards have been put in place to make sure that a care home or hospital only restricts someone's liberty safely and correctly, and that this is done when there is no other way to take care of that person safely.

The safeguards came into force on 1 April 2009. They are designed to ensure that a person's loss of liberty is lawful. There are three elements to the safeguards:

to provide the person with a representative to allow a right of challenge to the Court of Protection against the unlawful

deprivation of liberty to provide a right for deprivation of liberty to be reviewed and monitored

regularly.

For more information on the Deprivation of Liberty safeguards go to: http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1327

Learning Outcome 1.2 Evaluate agreed ways of working that relate to rights and choices of an individual with dementia

Agreed ways of working can result from policies and procedures that everyone has to follow. However, unless these are reviewed and updated regularly staff may be following out-dated practices that can affect individuals’ feelings of well-being.

Evaluating practice has benefits for workers and management: it allows this part of the work, its difficulty and delicacy, to be acknowledged, but it also makes managers take back responsibility for how it should be done.

Some services have begun to explore just what good practice would mean in these areas as an alternative to waiting until things go wrong and then saying something.

For example Eric, who is a colleague of Marie's, always leaves the door open a bit when he takes individuals to the toilet: anyone passing by can see that he is in there with someone. The staff are now having a discussion about whether it should be

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shut and, if so, locked or not. Eric says he is ‘covering his back’ but some people were saying that Eric is not doing his job properly. He can reasonably say that he does not know what ‘properly’ means until the staff group make up their minds.

Workers providing intimate care emphasise the formality of their roles to compensate for the crossing of boundaries. It is difficult to hold workers to account for intimate care tasks when no one has spelt out how they want these to be done. Agreed procedures provide one ‘benchmark’ for good practice which can protect individuals, staff and workers.

Select one of your Policies that mention that the rights and choices of the individuals must be respected. Read it through and then explain what you actually do to with the individual that shows their rights and choices are respected. Comment on how you think the Policy itself could be improved or how staff could comply with it better. (Minimum 150 words)

Name of Policy:

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Learning Outcome 1.3 Explain how and when personal information may be shared with carers and others, taking into account legislative frameworks and agreed ways of working

The Data Protection Act 1998 is legislation designed to protect the rights of anyone on whom personal data (information) is held and used. This information can be held in any format, including on paper or PC, CCTV or audio recording. A variety of organisations, both public and private, hold personal data. The Data Protection Act is concerned with the way in which these organisations collect, hold and uses this data.

Those involved in Social Care rely heavily on the use of personal data and therefore we need to ensure that all necessary steps are taken to comply with the Data Protection Act. We also hold what is called ‘sensitive’ data, information on areas such as health, ethnicity and religion. This type of data is subject to more rigorous regulation.

As someone working within Social Care you will almost certainly have access to personal data that is covered by the Act so that you can help provide services. Whilst your employer is responsible for ensuring this data is used correctly, as an employee you are also required to comply with the detail of the Act.

Personal data is information about a living individual and from which the individual can be identified. Normally the data must be held in such a way that it can be readily accessible, i.e. in a structured way such as within a filing system or on a PC. However Social Care case records are covered by the Act no matter how held.

The Office of the Information Commissioner offers advice and guidance to both organisations and the public on the content and meaning of the Data Protection Act and has a web site at www.informationcommissioner.gov.uk Reviewing an individual's current situation is difficult without access to good records. No one worker can know everything that has gone on recently.Although care staff often find time for paperwork is limited, keeping good records is essential. It can form an objective basis to deciding whether something really is a problem after all, and to seeing if there are any patterns to difficult situations.It is also where you explain your reasons for taking any restraining action - an important legal record. If you are unsure about what to write when recording difficult situations, discuss this with your manager.

Life History workCase study: Lillian lived in a care home and lately had been spending time with her key worker, working to pull together her life story. The key worker wrote out Lillian’s story in detail and included photos and mementos that were important to her. During that time the key worker realised that Lillian was finding it very helpful emotionally to share her feelings about living with dementia. The key worker also found it a very interesting process. She realised that this could be a useful learning experience for others to learn about life story work, but also to learn about how it feels to live with dementia.

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Effective communication is essential to facilitating meaningful contact with people in the late stage of dementia. Many will have lost the ability to communicate verbally and are likely to be experiencing significant problems understanding what is being said to them and what is going on around them.

Good communication is a key goal of person centred care. This is an approach to dementia care whereby people with dementia are treated as individuals with a unique identity and biography and are placed at the centre of all care activities (Kitwood, 1997).

The 1carer is often a key source of information about the cared for person; they are an ‘expert’ in her/his personality and characteristics. For example, their taste, likes, dislikes, favourite food, TV programmes, clothes, past occupation and interests. The carer can act as a ‘bridge’ into the cared for person’s world and needs.

It’s very important to keep carers up to date with information about their loved one and to make them feel welcomed and supported. Many carers want to continue providing some care to their relative and this is to be encouraged. This may be helping them bath, assisting with eating at meals, dressing them or simply talking to them about shared experiences and their past life.

For spouses or couples in particular privacy is essential; they need an exclusive space that is comfortable and free from interruption. Although lifelong partners may be obliged to live apart from one another that does not mean the end of what may be a loving and affectionate relationship.

1 The ‘carer’ in this context is not a paid member of staff

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Think about an individual you support who has dementia. What information has been shared with you about them and how has it helped you and the individual? (Minimum 200 words)

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Learning Outcome 2.3 Explain why it is important not to assume that an individual with dementia cannot make their own decisions

Decisions cannot be made for a person with dementia unless there is evidence that they can’t make the decision themselves. This is called a mental capacity assessment. Knowing a person has dementia is not enough to say they can’t make a decision. You need to be clear about the reasons why the person can’t make the specific decision under consideration. Care staff must have a ‘reasonable belief’ that a person can’t make a decision before doing anything in their best interests. It is good practice to write down the reasons why a person with dementia can’t make a particular decision.

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.

Think about an individual you support who has dementia. What decisions are they still able to make both on their own and with your support? What decisions do you have to take on their behalf and why? (Minimum 150 words)

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Learning Outcome 2.4 How the ability of an individual with dementia to make decisions may fluctuate Learning Outcome 3.2 How a conflict of interest can be addressed between the carer and an individual with dementia whilst balancing rights, choices and risk

2People have the legal right to make their own decisions about things such as what medical treatment to accept or where to live, as long as they have the capacity to do so. This applies to people with dementia too. As dementia progresses, however, it can get harder for people to make their own decisions.

The law says that it must always be assumed that someone can make their own decisions, until it is shown that they no longer have capacity to do so. Where decisions are made for people who lack capacity, such decisions must be in the person’s ‘best interests’.

When working out ‘best interests’ it is important to take into account both the past and present wishes and feelings of the person with dementia, even though they may be quite different.

Advance decisions People who can still make their own decisions sometimes write ‘advance decisions’ (also called ‘advance directives’ or ‘living wills’) to say what kind of care or treatment they want in the future when they are no longer able to decide for themselves. Advance decisions to refuse treatment are legally binding, as long as they have been properly made.

Some people see advance decisions as a good way of making sure their wishes are followed in the future. Others believe that we can never ‘second-guess’ what we will want in the future, and that an advance decision may lead to bad care.

Welfare attorneys People who are still able to make their own decisions may choose someone they trust to make decisions for them in the future. The person chosen is known as a ‘welfare attorney’. The welfare attorney must always act in the best interests of the person with dementia when making decisions.

Welfare attorneys have many advantages over advance decisions, as they have up-to-date information about the decision to be made. However, there are concerns that some people may find it too expensive or complicated to nominate a welfare attorney.

2 http://www.nuffieldbioethics.org/sites/default/files/files/dementia_resource_making_decisions_background.pdf

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An ethical framework for dementiaEthical decisions can be approached in 3 stages:

1. Identify the facts (e.g. What is the real problem? How much distress is it causing? What are the real alternatives?)

2. Apply ethical values(e.g. well-being, avoidance of harm, freedom to make own decisions),to the facts identified

3. Compare the situation with other similar situations to find relevant similarities or differences

Case Study example: Consider a 70-year-old man, Mr P, living with his daughter. When his daughter is cooking, Mr P frequently joins her in the kitchen and gets in the way of the cooking. Mr P’s daughter is tempted to lock the kitchen door whilst she is cooking to prevent Mr P from entering, but she is not certain whether this is the right thing to do.

1. Identify the relevant facts

The degree of danger and distress to Mr P when the kitchen door is locked.

The length of time he remains distressed after the cooking is finished.

The danger if Mr P is in the kitchen.

The effect on his daughter of his being in the kitchen during cooking and the extent to which this interferes with the cooking.

What Mr P might have thought about this situation had he considered it before the onset of dementia.

What he is currently able to do.

2. Apply ethical values to the facts

At first it might seem that Mr P’s right to choose would favour allowing him into the kitchen, since locking the door restricts his freedom and his behaviour suggests that he wants to be in the same room as his daughter.

However, Mr P’s previous wishes, at a time when he would have understood all the relevant issues, might have favoured enabling his daughter to get on with the cooking unimpeded.

Factors affecting Mr P’s well-being, such as avoiding harm (for example burning himself on the hot stove), also need careful consideration.

Finally, the interests of Mr P’s daughter must also be considered.

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3. Compare with similar situations

For example, Mr P’s daughter might already have had to make a decision about whether or not to leave her father in the house alone whilst she goes shopping.

Her deliberation and the decision she made in that situation may be highly relevant to the issue of whether to lock the kitchen door.

A health professional such as a community nurse might be able to help the daughter by comparing her situation with that of other families, advising on what has worked elsewhere, and perhaps also by identifying a solution which may remove the problem altogether.

Carers of people with dementia need more support and advice to tackle the difficult ethical dilemmas that they face. The Nuffield Bioethics Council has published a report which sets out an ethical approach to dealing with these dilemmas.Find out morehttp://www.nuffieldbioethics.org/dementia

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Case Study: David is 74years old and has had dementia for 4 years. David has always been very active and independent, and enjoys going for walks or going shopping by himself. A few times in recent months David has become confused while on trips to the town centre. He has returned home very late several times, and once his wife Margaret had to search for him, finding him in a confused and distressed state. Margaret is worried about David going out by himself, and is considering stopping him leaving the house on his own

Use the ethical framework described previously. Work through the 3 stages and describe what can be considered to try and support David and Margaret, now that his ability to go out alone safely is fluctuating (Minimum 150 words)

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3Person-centred care has been a guiding principle for good care practice for many years. It was included as one of eight key standards in the 10-year government programme, the National Service Framework for Older People (2001). In this general sense, person-centred care means treating people as individuals with dignity and respect, and enabling people to make choices about their care based on their needs, preferences, interests and life history.

Person-centred care has been a particularly important concept in dementia care.According to Brooker (2006), who has written on this topic extensively, person-centred care with people with dementia means:

valuing people with dementia and those who care for them treating people as individuals looking at the world from the perspective of the person with dementia a positive social environment in which the person living with dementia can

experience relative wellbeing’.

To find out more, look at the following resources:Alzheimer’s Society (2008) What standards of care can people expect from a care home? Factsheet. London: Alzheimer’s Society.Brooker, D. (2006) Person-centred dementia care: making services better. London: Jessica Kingsley Publishers.Department of Health (2001) National Service Framework for older people. London: Department of Health.

Relationship-centred care is another important approach with a growing evidence base for its effectiveness. It emphasises seeing the care home as a community, where quality of life for everyone in the community – staff, family, friends and individuals – is valued. Everyone receiving care needs to have a sense of security, sense of continuity, sense of belonging, sense of purpose, sense of achievement and sense of significance (called the ‘Six Senses Framework’, developed by Professor Mike Nolan and colleagues at the University of Sheffield). Nurturing these ‘senses’ for individuals, their families and staff is a vital part of improving care practice.

The individual's needs should always be at the centre of the decision making process.

Unintended or passive restraint - where staff fail to provide necessary care - is far more likely when staff are overloaded and not readily available for individuals. In these situations, it is the needs of staff that are guiding actions.

In other situations, relatives may have strong views that influence the decision making process. They must be heard and involved, but remember, the prime responsibility of the staff is to the individual. It is the individual's needs which should guide actions.

3 http://www.scie.org.uk/publications/elearning/restraint/restraint02/index.asp

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Be open and positive.When difficult situations develop - perhaps an individual is doing something that is hard to respond to, such as repeatedly striking staff - it can be tempting for staff to think 'this individual can't stay here'.The most important thing is to try to be open and positive about the potential you and your staff team have to improve the situation.So often, with reflection and teamwork, staff can work together to develop an action plan to respond differently and ensure the placement continues smoothly. Staff benefit from this approach too in many ways.

You are not aloneYou may find yourself alone with an individual when a difficult situation arises, but in a care home another staff member should be nearby and able to help. Always call on team support in these urgent situations. Having another person witness the event could be vital too. In the community you may have support from a loved one who lives with the individual.To make plans about using restraint in the longer-term, remember that good decision making involves consulting with all relevant parties, including the individual, family members, friends, the manager, other involved professionals (say a GP), and, in some particularly difficult cases, the inspection services.

Working with people with dementia can be very rewarding. But situations can arise that are difficult for the person with dementia or those supporting them – or both parties.

Learning Outcome 3.3 Describe how to ensure an individual with dementia, carers and others feel able to complain without fear of retribution

The Care Quality Commission’s Essential Standards of Quality and Safety Outcome 17 state:What should people who use services experience?People who use services or others acting on their behalf:

Are sure that their comments and complaints are listened to and acted on effectively.

Know that they will not be discriminated against for making a complaint.

This is because providers who comply with the regulations will:

Have systems in place to deal with comments and complaints, including providing

people who use services with information about that system.

Support people who use services or others acting on their behalf to make comments

and complaints.

Consider fully, respond appropriately and resolve, where possible, any comments

and complaints.

Always remember, clients are your customers and as such have the right to expect a certain standard of service from you and your organisation.

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4Workers have to work within constraints imposed by their employers. However, within these constraints there are choices. Depending on the choices you make individuals will feel you are on their side, indifferent or wanting to control them by abusing the power you have over them. You can contribute towards their feelings of well-being or their hopelessness and powerlessness.

When people feel empowered they are more confident to say when things are not right for them. This includes their carers and anyone else involved in decision making for the individual who has dementia.

Not every care provider will live up to every aspect of person-centred care all the time. Staff may adopt a patronising or degrading attitude, and in some services, people with dementia may even be vulnerable to physical or psychological abuse or general neglect.

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.

Relatives or friends of the person with dementia may have general or specific concerns about the level of care provided. Any care provider that is doing its best to provide good quality care has nothing to fear from a complaint. Instead, it should see it as a positive opportunity to improve.

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

4 Extracted from http://www.workingtogetherforrecovery.co.uk

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Case Study: You support John who has dementia. He lives in a care home where they have many group social activities and encourage everyone to join in. John gets very anxious in groups of people and his behaviour shows that he does not want to be in situations like this. John’s wife mentioned this when he was admitted but has noticed when she visits he is often sat in a group and looking very anxious. She has told you that she is worried about this but does not want to cause trouble as everyone seems very caring.Explain how you would support her to raise her concern formally in line with your workplace policy and procedures and how you would reassure her it was OK to do so. (Minimum 100 words)

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Learning Outcome 4.1 How to maintain privacy and dignity when providing personal support for intimate care to an individual with dementia

5Although it may be undesirable to cut across the informality of care relationships by making unnecessary rules or regulations, intimate care is clearly one site where things can go wrong. There is a narrow margin of error. The usual social rules and inhibitions have already been broken and it is not always easy to arrive at new ones which are appropriate to the particular context within which you are caring or being cared for. Moreover, receiving or giving care arouses strong feelings which people rarely put into words.

Imagine that you need help to go to the toilet. You have dementia. Write down three things which your helper could do to ease any embarrassment or discomfort you might feel, and three things which would make the whole situation even worse. Think about who could be helping you in this situation, their gender, their relationship to you, their manner, what they say, their facial expression, and so on. (Minimum 200 words)

5 http://openlearn.open.ac.uk/mod/oucontent/view.php?id=398032&section=6

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Once complete please make sure that your details are on the front of the workbook and then return it to your assessor:

OxcareOxfordshire Learning and Skills ServiceUnipart HouseGarsington RoadCowleyOX4 2GQ

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