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Unit 105 (3565) (DEM304 4222-36) Knowledge Workbook Enable right and !hoi!e o" indi#id$al with de%entia whil t %ini%i ing ri k

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1 e or na%e' 23(1+E 421424 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 organisations policies and procedures before attempting to answer the learning outcomes Read the guidance on the terms used in this workbook before you start.

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&earner 1 e %ent +e!ord Unit -$%ber' 105 (DEM304) Unit 5itle' Enable right and !hoi!e o" indi#id$al with de%entia whil t %ini%i ing ri k Date Workbook $b%itted' 1 t ##########.. 2nd ##########.. $earning &ssessor 'eedback 1st (ubmission %utcome nd (ubmission %utcome Pass)Refer %utcome Pass)Refer 1.1

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$earning outcomes .1+ . + !.1+ *. + *.! must be assessed in a real work environment and your &ssessor will agree additional methods to cover these, including observation of your practice

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&ssessor comments to $earner

Target date and action plan for resubmission ,if applicable-

%utcome of second submission

. confirm that this assessment has been completed to the re/uired standard and meets the re/uirements for validity, currency, authenticity and sufficiency &ssessor (ignature0 1ate0

. confirm that the assignment work to which this result relates, is all my own work $earner (ignature0 .nternal 2erifiers (ignature0 1ate0 1ate0

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1dditional g$idan!e

Ke6 legi lation0 3 4uman Rights &ct 1556 3 7ental "apacity &ct 889 3 &dults with .ncapacity ,(cotland- &ct 888 3 7ental 4ealth &ct 88: 3 The 1isability 1iscrimination &ct 1559 3 (afeguarding 2ulnerable ;roups &ct 88< 3 "arers,=/ual opportunities- &ct 88* 1greed wa6 o" working' .nclude policies and procedures where these e>ist+ they may be less formally documented with micro? employers &n indi#id$al is someone re/uiring care or support (arer and other %a6 be' 3 "are worker 3 'amily 3 &dvocate 3 "olleagues 3 7anagers 3 (ocial worker 3 %ccupational Therapist 3 ;P 3 (peech and $anguage Therapist 3 Physiotherapist 3 Pharmacist 3 @urse 3 (pecialist nurse 3 Psychologist 3 Psychiatrist 3 .ndependent 7ental "apacity &dvocate

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3 .ndependent 7ental 4ealth &dvocate 3 &dvocate 3 1ementia care advisor 3 (upport groups 7e t intere t ' This is an essential aspect of the 7ental "apacity &ct , 889-. 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 Ke6 .h6 i!al and o!ial a .e!t 8h6 i!al' 3 (ignage 3 "olour 3 'urniture 3 'looring 3 Technology 3 Room layout 3 (torage 3 (pace for personal belongings 0o!ial' 3 "ommunication skills 3 Positive approach 3 Relationship centred approach 3 Professional boundaries 3 &bilities focus 3 Ahole team approach

9or %ore detailed in"or%ation .lea e re ear!h' www.alBheimers.org.uk http0))www.scie.org.uk)publications)dementia)inde>.asp http0))www.logontocare.org.uk)e?learning8)

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&earning 2$t!o%e 1,1 E:.lain the i%.a!t o" ke6 legi lation that relate to "$l"il%ent o" right and !hoi!e and the %ini%i ing o" ri k o" har% "or an indi#id$al with de%entia .n =ngland and Aales a new law about making decisions started in 88: called the 7ental "apacity &ct. .t covers all decisions people may make for themselves, however little or big, from deciding whether to have a bath or shower to selling a house. The law says we must start by assuming that people can make their own decisions. This includes people with dementia. 4ow can you help a person with dementia to make decisions now and for their futureC "lick on the link to e>plore some of the big dilemmas of making decisions with people with dementia. http0))www.scie.org.uk)publications)dementia)decisions)inde>.asp Then e>plain the i%.a!t of key legislation that relates to fulfilment of rights and choices and the minimising of risk of harm "or an indi#id$al with de%entia ,minimum 88 words-

'or more information on the mental capacity act go to0 http0))www.alBheimers.org.uk)site)scripts)documentsDinfo.phpCEdocument.1F!9* Page : of !

The %ffice of the Public ;uardian provides a range of useful information online, including the 7ental "apacity &ct "ode of Practice, available at0 www.publicguardian.gov.uk)mca)code?of?practice.htm .t has also produced the following booklets, which are available as free downloads at0 www.publicguardian.gov.uk)forms)additional?publicationsa?newsletters.htm or, for printed copies, by email reorderGinprintlitho.com or by phone on 8 ! 686: 68!6. 7aking decisions... about your health, welfare or finance. Aho decides when you canHt ,for people who may lack capacity, or may do so in future7aking decisions ? 4elping people who have difficulty deciding for themselves ,for unpaid carers7aking decisions ? & guide for people who work in health and social care 7aking decisions ? & guide for advice workers

The 1eprivation of $iberty (afeguards ,1o$(- are part of the 7ental "apacity &ct , 889-. 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 someoneHs 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 &pril 885. They are designed to ensure that a personHs loss of liberty is lawful. There are three elements to the safeguards0 to provide the person with a representative to allow a right of challenge to the "ourt of Protection against the unlawful deprivation of liberty to provide a right for deprivation of liberty to be reviewed and monitored regularly. 'or more information on the 1eprivation of $iberty safeguards go to0 http0))alBheimers.org.uk)site)scripts)documentsDinfo.phpCdocument.1F1! : &earning 2$t!o%e 1,2 E#al$ate agreed wa6 o" working that relate to right and !hoi!e o" an indi#id$al with de%entia &greed ways of working can result from policies and procedures that everyone has to follow. 4owever, unless these are reviewed and updated regularly staff may be following out?dated practices that can affect individuals feelings of well?being. =valuating practice has benefits for workers and management0 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. (ome services have begun to e>plore Iust what good practice would mean in these areas as an alternative to waiting until things go wrong and then saying something. 'or e>ample =ric, who is a colleague of 7arieHs, always leaves the door open a bit when he takes individuals to the toilet0 anyone passing by can see that he is in there Page 6 of !

with someone. The staff are now having a discussion about whether it should be shut and, if so, locked or not. =ric says he is Jcovering his back but some people were saying that =ric is not doing his Iob properly. 4e can reasonably say that he does not know what Jproperly means until the staff group make up their minds. Aorkers providing intimate care emphasise the formality of their roles to compensate for the crossing of boundaries. .t is difficult to hold workers to account for intimate care tasks when no one has spelt out how they want these to be done. &greed procedures provide one Jbenchmark for good practice which can protect individuals, staff and workers. (elect one of your Policies that mention that the rights and choices of the individuals must be respected. Read it through and then e>plain what 6o$ actually do to with the individual that shows their rights and choices are respected. "omment on how you think the Policy itself could be improved or how staff could comply with it better. ,7inimum 198 words@ame of Policy0

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&earning 2$t!o%e 1,3 E:.lain how and when .er onal in"or%ation %a6 be hared with !arer and other ; taking into a!!o$nt legi lati#e "ra%ework and agreed wa6 o" working The 1ata Protection &ct 1556 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 P", ""T2 or audio recording. & variety of organisations, both public and private, hold personal data. The 1ata Protection &ct is concerned with the way in which these organisations collect, hold and uses this data. Those involved in (ocial "are rely heavily on the use of personal data and therefore we need to ensure that all necessary steps are taken to comply with the 1ata Protection &ct. Ae also hold what is called Jsensitive data, information on areas such as health, ethnicity and religion. This type of data is subIect to more rigorous regulation. &s someone working within (ocial "are you will almost certainly have access to personal data that is covered by the &ct so that you can help provide services. Ahilst your employer is responsible for ensuring this data is used correctly, as an employee you are also re/uired to comply with the detail of the &ct. Personal data is information about a living individual and from which the individual can be identified. @ormally 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 P". 4owever (ocial "are case records are covered by the &ct no matter how held. The %ffice of the .nformation "ommissioner offers advice and guidance to both organisations and the public on the content and meaning of the 1ata Protection &ct and has a web site at www.informationcommissioner.gov.uk Reviewing an individualHs current situation is difficult without access to good records. @o one worker can know everything that has gone on recently. &lthough care staff often find time for paperwork is limited, keeping good records is essential. .t can form an obIective basis to deciding whether something really is a problem after all, and to seeing if there are any patterns to difficult situations. .t is also where you e>plain your reasons for taking any restraining action ? an important legal record. .f you are unsure about what to write when recording difficult situations, discuss this with your manager. $ife 4istory work "ase study0 $illian 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 $illians story in detail and included photos and mementos that were important to her. 1uring that time the key worker realised that $illian was finding it very helpful emotionally to share her feelings about living with dementia. The key worker also found it a very interesting process. (he realised that this could be a useful learning e>perience for others to learn about life story work, but also to learn about how it feels to live with dementia. Page 18 of !

=ffective communication is essential to facilitating meaningful contact with people in the late stage of dementia. 7any will have lost the ability to communicate verbally and are likely to be e>periencing significant problems understanding what is being said to them and what is going on around them. ;ood 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 uni/ue identity and biography and are placed at the centre of all care activities ,Kitwood, 155:-. The 1carer is often a key source of information about the cared for person+ they are an Je>pert in her)his personality and characteristics. 'or e>ample, their taste, likes, dislikes, favourite food, T2 programmes, clothes, past occupation and interests. The carer can act as a Jbridge into the cared for persons world and needs. .ts very important to keep carers up to date with information about their loved one and to make them feel welcomed and supported. 7any 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 e>periences and their past life. 'or spouses or couples in particular privacy is essential+ they need an e>clusive space that is comfortable and free from interruption. &lthough 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.

The Jcarer in this conte>t is not a paid member of staff

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Think about an individual you support who has dementia. Ahat information has been shared with you about them and how has it helped you and the individualC ,7inimum 88 words-

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&earning 2$t!o%e 2,3 E:.lain wh6 it i i%.ortant not to a indi#id$al with de%entia !annot %ake their own de!i ion

$%e that an

1ecisions cannot be made for a person with dementia unless there is evidence that they cant make the decision themselves. This is called a mental capacity assessment. Knowing a person has dementia is not enough to say they cant make a decision. You need to be clear about the reasons why the person cant make the specific decision under consideration. "are staff must have a Jreasonable belief that a person cant make a decision before doing anything in their best interests. .t is good practice to write down the reasons why a person with dementia cant make a particular decision. 1ont assume that people with dementia cant 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 persons first language is not =nglish. 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. Ahat decisions are they still able to make both on their own and with your supportC Ahat decisions do you have to take on their behalf and whyC ,7inimum 198 words-

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&earning 2$t!o%e 2,4 /ow the abilit6 o" an indi#id$al with de%entia to %ake de!i ion %a6 "l$!t$ate &earning 2$t!o%e 3,2 /ow a !on"li!t o" intere t !an be addre ed between the !arer and an indi#id$al with de%entia whil t balan!ing right ; !hoi!e and ri k People 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. &s 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. Ahere decisions are made for people who lack capacity, such decisions must be in the persons Jbest interests. Ahen working out Jbest 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 /uite different. 1d#an!e de!i ion People who can still make their own decisions sometimes write Jadvance decisions ,also called Jadvance directives or Jliving wills- to say what kind of care or treatment they want in the future when they are no longer able to decide for themselves. &dvance decisions to refuse treatment are legally binding, as long as they have been properly made. (ome people see advance decisions as a good way of making sure their wishes are followed in the future. %thers believe that we can never Jsecond?guess what we will want in the future, and that an advance decision may lead to bad care. Wel"are attorne6 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 Jwelfare attorney. The welfare attorney must always act in the best interests of the person with dementia when making decisions. Aelfare attorneys have many advantages over advance decisions, as they have up? to?date information about the decision to be made. 4owever, there are concerns that some people may find it too e>pensive or complicated to nominate a welfare attorney.

http0))www.nuffieldbioethics.org)sites)default)files)files)dementiaDresourceDmakingDdecisionsDbackgro und.pdf

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&n ethical framework for dementia =thical decisions can be approached in ! stages0 1. .dentify the facts ,e.g. Ahat is the real problemC 4ow much distress is it causingC Ahat are the real alternativesC. &pply ethical values,e.g. well?being, avoidance of harm, freedom to make own decisions-,to the facts identified !. "ompare the situation with other similar situations to find relevant similarities or differences "ase (tudy e>ample0 "onsider a :8?year?old man, 7r P, living with his daughter. Ahen his daughter is cooking, 7r P fre/uently Ioins her in the kitchen and gets in the way of the cooking. 7r Ps daughter is tempted to lock the kitchen door whilst she is cooking to prevent 7r P from entering, but she is not certain whether this is the right thing to do. 1. .dentify the relevant facts The degree of danger and distress to 7r P when the kitchen door is locked. The length of time he remains distressed after the cooking is finished. The danger if 7r P is in the kitchen. The effect on his daughter of his being in the kitchen during cooking and the e>tent to which this interferes with the cooking. Ahat 7r P might have thought about this situation had he considered it before the onset of dementia. Ahat he is currently able to do.

. &pply ethical values to the facts &t first it might seem that 7r Ps 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. 4owever, 7r Ps 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. 'actors affecting 7r Ps well?being, such as avoiding harm ,for e>ample burning himself on the hot stove-, also need careful consideration. 'inally, the interests of 7r Ps daughter must also be considered.

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!. "ompare with similar situations 'or e>ample, 7r Ps 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. 4er deliberation and the decision she made in that situation may be highly relevant to the issue of whether to lock the kitchen door. & 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.

"arers of people with dementia need more support and advice to tackle the difficult ethical dilemmas that they face. The @uffield Lioethics "ouncil has published a report which sets out an ethical approach to dealing with these dilemmas. 9ind o$t %ore http0))www.nuffieldbioethics.org)dementia

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"ase (tudy0 1avid is :*years old and has had dementia for * years. 1avid has always been very active and independent, and enIoys going for walks or going shopping by himself. & few times in recent months 1avid has become confused while on trips to the town centre. 4e has returned home very late several times, and once his wife 7argaret had to search for him, finding him in a confused and distressed state. 7argaret is worried about 1avid going out by himself, and is considering stopping him leaving the house on his own Mse the ethical framework described previously. Aork through the ! stages and describe what can be considered to try and support 1avid and 7argaret, now that his ability to go out alone safely is fluctuating ,7inimum 198 words-

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Person?centred care has been a guiding principle for good care practice for many years. .t was included as one of eight key standards in the 18?year government programme, the @ational (ervice 'ramework for %lder People , 881-. .n 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. &ccording to Lrooker , 88<-, who has written on this topic e>tensively, person? centred care with people with dementia means0 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 e>perience relative wellbeing. To find out more, look at the following resources0
&lBheimers (ociety , 886- Ahat standards of care can people e>pect from a care homeC 'actsheet. $ondon0 &lBheimers (ociety. Lrooker, 1. , 88<- Person?centred dementia care0 making services better. $ondon0 Nessica Kingsley Publishers. 1epartment of 4ealth , 881- @ational (ervice 'ramework for older people. $ondon0 1epartment of 4ealth.

Relationship?centred care is another important approach with a growing evidence base for its effectiveness. .t emphasises seeing the care home as a community, where /uality of life for everyone in the community O staff, family, friends and individuals O is valued. =veryone 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 J(i> (enses 'ramework, developed by Professor 7ike @olan and colleagues at the Mniversity of (heffield-. @urturing these Jsenses for individuals, their families and staff is a vital part of improving care practice. The individualHs needs should always be at the centre of the decision making process. Mnintended or passive restraint ? where staff fail to provide necessary care ? is far more likely when staff are overloaded and not readily available for individuals. .n these situations, it is the needs of staff that are guiding actions. .n 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. .t is the individualHs needs which should guide actions.

http0))www.scie.org.uk)publications)elearning)restraint)restraint8 )inde>.asp

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Le open and positive. Ahen 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 Hthis individual canHt stay hereH. 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. (o often, with reflection and teamwork, staff can work together to develop an action plan to respond differently and ensure the placement continues smoothly. (taff benefit from this approach too in many ways. You are not alone You 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. &lways call on team support in these urgent situations. 4aving another person witness the event could be vital too. .n 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 ;P-, and, in some particularly difficult cases, the inspection services. Aorking with people with dementia can be very rewarding. Lut situations can arise that are difficult for the person with dementia or those supporting them O or both parties. &earning 2$t!o%e 3,3 De !ribe how to en $re an indi#id$al with de%entia; !arer and other "eel able to !o%.lain witho$t "ear o" retrib$tion The "are Puality "ommissions =ssential (tandards of Puality and (afety %utcome 1: state0 Ahat should people who use services e>perienceC People who use services or others acting on their behalf0 &re 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 will0 4ave systems in place to deal with comments and complaints, including providing people who use services with information about that system. (upport people who use services or others acting on their behalf to make comments and complaints. "onsider fully, respond appropriately and resolve, where possible, any comments and complaints. &lways remember, clients are your customers and as such have the right to e>pect a certain standard of service from you and your organisation. Page 15 of !

Aorkers have to work within constraints imposed by their employers. 4owever, within these constraints there are choices. 1epending 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. Ahen 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. @ot every care provider will live up to every aspect of person?centred care all the time. (taff 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. .n these situations, the person with dementia may not be willing or able to complain ? either because it is difficult for them to Hmake a fussH 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. &ny care provider that is doing its best to provide good /uality care has nothing to fear from a complaint. .nstead, it should see it as a positive opportunity to improve. & 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

=>tracted from http0))www.workingtogetherforrecovery.co.uk

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"ase (tudy0 You support Nohn who has dementia. 4e lives in a care home where they have many group social activities and encourage everyone to Ioin in. Nohn gets very an>ious in groups of people and his behaviour shows that he does not want to be in situations like this. Nohns wife mentioned this when he was admitted but has noticed when she visits he is often sat in a group and looking very an>ious. (he has told you that she is worried about this but does not want to cause trouble as everyone seems very caring. =>plain 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 %K to do so. ,7inimum 188 words-

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&earning 2$t!o%e 4,1 /ow to %aintain .ri#a!6 and dignit6 when .ro#iding .er onal $..ort "or inti%ate !are to an indi#id$al with de%entia &lthough 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 conte>t within which you are caring or being cared for. 7oreover, receiving or giving care arouses strong feelings which people rarely put into words.
5

.magine that you need help to go to the toilet. You have dementia. Arite 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 e>pression, and so on. ,7inimum 88 words-

http0))openlearn.open.ac.uk)mod)oucontent)view.phpCidF!568! EsectionF<

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%nce complete please make sure that your details are on the front of the workbook and then return it to your assessor0 %>care %>fordshire $earning and (kills (ervice Mnipart 4ouse ;arsington Road "owley %Q* ;P

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