Caring for someone with Dementia Handbook - Wiltshire Council

Caring for someone withdementiaFebruary 2013

An introductionThis information has been designed to help you as a carer of someone withdementia. It has information about dementia, your caring role and gives youuseful details about the local and national support and services that are thereto support you and the person you care for.It has been organised into different sections based upon a range of subjects.It does not contain everything there is to know, but does contain the details oforganisations that you can contact for more advice and support.The handbook contains a lot of information which may appear to beoverwhelming but you do not need to remember all of this information – youcan simply refer to this handbook as and when you need it.DisclaimerThe content of this guide has been checked for accuracy at the time ofpublication, but beyond this date we cannot accept responsibility if informationis out of date. It is designed to provide helpful information and signpost you toorganisations and services that may be of help. It should not be used as abasis for taking, or not taking, any specific course of action in relation to aperson’s care. The inclusion of organisations and services is for informationpurposes only and does not constitute endorsement of any kind by theauthors or the organisations supporting the publication.Always consult a qualified professional about your own care and the care of aloved one or a friend.AcknowledgementsThis handbook has been based on the document “Caring for Dementia:Dementia Carers’ Pathways Devon”, which was produced by David Light andJim Delves. Wiltshire would like to thank both David and Jim for sharing theirwork and ensuring that carers have access to good quality information.Wiltshire Council would also like to thank the carers and organisations inWiltshire who have contributed to the production of this document. Inparticular, our special thanks to Peter Wakeford and Colin Neighbour, who areshown on the front page of this handbook.1

What is in this handbook?Section 1 - What is dementia? ……………………………….…………….Page 3Section 2 - Getting a diagnosis ………………………………….…………Page 4Section 3 - Becoming a carer ………………………………………...........Page 5Section 4 - Assessment of carers’ needs ………………………..………..Page 8Section 5 - Support for carers ……………………………..……...............Page 9Section 6 - Staying healthy …………………………………………….….Page 15Section 7 - Staying safe …………………………………………..……….Page 17Section 8 - Relationships ……………………………………………….…Page 20Section 9 - Carer training ………………………………………................Page 21Section 10 - Financial and legal implications …………………………....Page 22Section 11 - Benefits and managing your money………………..…..…Page 27Section 12 - Working and caring ………………………………….…..….Page 29Section 13 - Hospitals and discharge …………………………….…..….Page 32Section 14 - Working with professionals …………………………...........Page 34Section 15 - Telecare ………………………………………………......…Page 35Section 16 - Sheltered housing …………………………………..….……Page 35Section 17 - Extra care housing ………………………………….….…...Page 36Section 18 - Help to live at home …...............……………………..…....Page 37Section 19 - Residential and nursing care homes .…………………..…Page 38Section 20 - Counselling ……………………………………………….…Page 40Section 21 - Moving on from caring……………………………………....Page 41Section 22 - Wiltshire Council factsheets ………………………….....….Page 42Section 23 - Alzheimer’s Society factsheets …………………….………Page 43Section 24 - Age UK factsheets ……………….……………….…...........Page 45Section 25 - Contact details …………………….…………………….…..Page 47Section 26 - Your notes …………………………………………..…..……Page 50Section 27 - Your useful contacts ………………………………..…...….Page 53Section 28 - Your record of telephone conversations ………...………..Page 54Section 29 - How to make a complaint, comment or compliment..…...Page 57Section 30 - What to do in an emergency…………………………….....Page 592

Section 1 - What is dementia?If you, or a friend or relative, have been diagnosed with dementia, you may befeeling anxious or confused. You may not know what dementia is.The term 'dementia' is used to describe the symptoms that might be broughtabout by one or more illnesses which may affect the brain. These includeAlzheimer's disease, vascular dementia and dementia with Lewy bodies.Dementia is progressive, which means the symptoms will gradually get worse.How fast dementia progresses will depend on the individual. Each person isdifferent and will experience dementia in their own way.Symptoms of dementia include:• Loss of memory − for example, forgetting the way home from theshops, or being unable to remember names and places, or whathappened earlier the same day.• Mood changes − particularly as parts of the brain that control emotionare affected. People with dementia may also feel sad, frightened orangry about what is happening to them.• Communication problems − a decline in the ability to talk, readand write.• Difficulty with every day tasks.• Loss of logic and ability to reason or use initiative.• Disorientation in time and place.In the later stages of dementia, the person affected will have problemscarrying out everyday tasks, and may become increasingly dependent onother people.There are many different illnesses which may lead to dementia, and to givedetailed information on all of these would be beyond the scope of thishandbook. If you would like further information on a particular type ofdementia please contact your local Alzheimer’s organisations. (Details can befound in section 25.)The national Alzheimer’s Society has a range of useful factsheets whichprovide more information on dementia and the different stages of dementia.More details can be found in section 23.A Wiltshire mental health information website is hosted by Alabare Includeand holds an A to Z of services and other useful information. (Contact detailscan be found in section 25).3

Section 2 - Getting a diagnosisIt is very important to get a proper diagnosis from a specialist. If you or theperson you are looking after has concerns about memory, the first person tospeak to is your GP. It can be useful to keep a diary before going to the GP torecord any instances or events that you are concerned about so that you cangive them a good picture of what is happening.A diagnosis will help the doctor rule out any physical illnesses that might havesimilar symptoms to dementia, including depression, urinary tract infections,vitamin and thyroid deficiencies and substance misuse (drugs or alcohol).Once the doctor has checked for any easily treatable causes, they can thenrequest a specialist assessment from the memory service if necessary.The memory service is for people who are concerned about their memory andthink it is affecting their day to day life. If the person you look after is referredto the service, an assessor will talk with them about their memory difficulties,complete some checks and discuss the impact of any problems or issues.This may be followed by some further checks so that a diagnosis can bemade. The memory service encourages the person with memory problems totake someone, such as a family member, with them so that everyone can beinvolved where appropriate. The implications of a diagnosis will be discussed,with information and advice being given and there will be the opportunity todiscuss any possible medication and support that may help the person tomanage the situation.Whether you are someone with dementia or a carer, a diagnosis can help youprepare and plan for the future. However, having a diagnosis made may notautomatically solve all of your problems. It may be reassuring to have itconfirmed that the person really is ill - and you can begin to prepare for thechanges that will have to take place in your lives. However, it will take a whilefor the implications of the disease to sink in. It is important to remember thatmany people in the early stages of dementia, even after having a diagnosis,can live a fairly independent life with support.4

Section 3 - Becoming a carerA carer is:“Someone who provides unpaid support to a family member, partner,friend or neighbour; this could be because the person is ill, frail,disabled, or has mental health or substance misuse problems.”Therefore, if you are looking after someone with dementia then you are acarer. However, many carers do not recognise themselves as such, becausethey see the support and help that they give as part of their normalrelationship with the person they care for.The care you give is because the person could not manage at home withoutthis support. You may be undertaking a wide range of support which couldinclude all or any of the following:• Practical help, cooking, cleaning, washing, shopping.• Taking them to and from appointments and arranging theseappointments.• Emotional support.• Making sure they are safe• Assistance with their finances and paperwork.• Physical support such as assisting them with bathing, washing,dressing, lifting and mobility.Anybody can become a carer. Becoming a carer can happen suddenly or itmight be a gradual process which grows over time. The latter is often the caseif you are looking after someone with dementia.You might also find as a carer, that your caring responsibilities may vary overtime and may be difficult to predict day to day.Your caring role may also continue whilst the person being cared for is inhospital or another setting, such as a nursing home.Everybody is different and so everybody who becomes a carer will find theexperience to be different. However, many people find that becoming a careris an emotional process, which can often happen without preparation. Youmay feel that you have a lot to learn all of a sudden and that you are not asprepared as you would like to be. Many carers also have times when theymay feel resentful about having to care for someone and then feel guilty aboutthese types of feelings.It is important to remember that you are not the only person feeling like this.Peer support is important and talking to other carers who are going throughthe same feelings and changes in their lives can be useful. For moreinformation on Alzheimer’s Support, Alzheimer’s Society and Carer SupportWiltshire, who run carer support groups, see section 5.5

It is not unknown for carers to refuse help in the early stages of an illness. Itis vital to accept the help and support you will need as time progresses. Byaccepting help you will know that you are not alone. Your local communitymental health service or adult care teams are a vital link where workers from arange of professional backgrounds will be able to help with practical problemsand provide advice to people who use services and their carers’. Their role isto provide community interventions where possible, to help people stay intheir own homes. Through an assessment process, they will look at what helpyou and the person that you care for need and will be able to advise andsupport you appropriately, depending on your circumstances. For moreinformation call the customer advisors at Wiltshire Council – contact details insection 25.Carers and the law - your rightsYou may not realise, but as a carer you do have rights. The following Acts arethe main ones relating to carers:• Carers (Recognition and Services) Act 1995 - Carers of all ages have aright to their own carers assessment to discuss their ability to care andwillingness to continue caring, and to identify what support they need.• Carers and Disabled Children’s Act 2000 - Carers over the age of 16who provide regular and substantial care can be assessed for servicesin their own right such as direct payments and breaks.• Work and Families Act 2006 - This Act gives carers the right to requestflexible working.• Carers Equal Opportunities Act 2004 and Equality Act 2010 - Carershave a right to their own assessment which will take into account theirwish to take up, or remain in education, training or employment andleisure activities. The new Equality Act protects both the person beingcared for and the carer from discrimination ‘by association’ whenasking for and receiving goods and services, shopping and travelling.6

Young carersA young carer is a child or young person (aged from 5 to 25) whose life isaffected by caring for at least one family member, over and above just‘helping out’.A young carer has the same rights as other carers under the NHS CommunityCare Act 1990 and is entitled to an assessment of needs.Whilst young carers’ lives can be enriched by their caring role, having a strongbond and relationship with the person they care for, there can also bedetrimental and negative impacts on their lives. These may interfere with theirpersonal and social life and ability to interact with friends, create difficulties atschool and with employment opportunities, and lead to physical and emotionalhealth problems. In addition to trying to get to school, complete coursework,take exams and have a social life, they are often very involved in caring roles.Support for young carers in Wiltshire includes:• Advice at the end of the telephone• Practical and emotional support• An assessment of young carers needs which will ensure that the levelof care is safe and not overwhelming• Support to make sure the right services are accessed• Range of activities and a chance to have fun and relax with otheryoung carersThese activities might include:• Healthy living projects• Mentoring• Environmental and conservation projects and a carers volunteeringprogramme• Leadership and skills development projects• Money matters education• Sports and activities• Day trips and short overnight breaks.Contact details for Wiltshire Young Carers can be found in section 25.7

Section 4 - Assessment of a carer’s needsIf you are providing, or intend to provide, a substantial amount of care on aregular basis to the person you look after and they are over 18, then you areentitled to an assessment of your needs as a carer under the Carers(Recognition and Services) Act 1995. You can ask for your own assessmentat any time, even if the person you care for does not want an assessmentor services.Your assessment will be completed by someone from the Wiltshire CouncilAdult Care Team, Carer Support Wiltshire, or from the local CommunityMental Health Service. You also have the opportunity to complete theassessment form yourself if you wish to do so.An assessment of carers’ needs is an opportunity to:• talk and think about your own needs as a carer• share your experience of caring and have your role as a carerrecognised• be given information and advice• identify and discuss any difficulties that you may have• make emergency plans if you are ill or cannot continue in yourcaring roleAn assessment is not about your capability to care but it will look at ways inwhich to help you in your caring role. This may include arranging services tohelp you in your caring role or giving you a carer’s direct payment, which is asum of money so that you can buy your own support. This can help you tocontinue with your caring responsibilities if you wish to, to maintain your ownhealth and well-being or to help you when you can no longer care.It is your choice whether you have a separate assessment of your needs or ajoint assessment with the person you care for. A joint assessment is whenyour views and needs are taken into account when the person you care for isbeing assessed. If you choose not to have an assessment, it does not stopthe person you care for from receiving services.The assessment of your needs as a carer does not include a financialassessment.For more information contact the customer advisors at Wiltshire Council oryour local Community Mental Health Service.You may also find the Wiltshire Council ‘A guide to assessment of carer’sneeds’ booklet useful: www.wiltshire.gov.uk/healthandsocialcare/carers.htmHard copies can be obtained by calling the Wiltshire Council customeradvisors.Contact details can be found in section 25.8

Section 5 - Support for carersDementia Adviser Service (starting in May 2013)This is a new information and signposting service for people with dementiaand their carers. You will be provided with a named adviser who will help tomake sure that you are provided with the right information at the right time.Alzheimer’s Society provide the service in north and south Wiltshire andAlzheimer’s Support provide the service in west and east Wiltshire. Contactdetails can be found in section 25.Alzheimer’s organisationsThese organisations provide specialist support, advice and information topeople with dementia and their carers. These are:• Alzheimer’s Support West Wiltshire and East Wiltshire• Alzheimer’s Society North Wiltshire• Alzheimer’s Society SalisburyThey also offer a number of activities, services and groups for both yourselfas a carer and also for the person you care for, including memory cafés,Singing for the Brain TM , support groups and support in your home. Contactdetails can be found in section 25.Memory cafésMemory cafés offer a friendly, relaxed and welcoming setting where peoplewith dementia and their families and carers can meet others in a similarsituation, find out how and where to get help and to share stories with others.The memory cafés are run by Alzheimer’s organisations and are held on aregular basis across Wiltshire. Contact details for the Alzheimer’sorganisations can be found in section 25.Singing for the Brain TMThis is a service for people with dementia and their carers and is developedand led by the Alzheimer's organisations around the principles of musictherapy and singing. The groups are run in Wiltshire to allow people withdementia and their carers to enjoy time together and meet others in astimulating and supportive social environment. Contact details for theAlzheimer’s organisations can be found in section 25.9

Carers’ breaks and other support in your caring roleHaving a break is more likely to help you cope with caring and give younecessary time for yourself, time to recharge your batteries. You may want abreak so that you can follow up your interests or catch up with family orfriends. You may want to plan a longer break to allow you to go on holiday.The person you care for may benefit from a break too, for example by gettingout of the house, meeting people or taking part in interesting activities. Theperson who is receiving the care must consent to any care that they receive;the reality for some carers may be that the person you care for only wants youto look after them.Respite/short breaks can take various forms to meet different needs andpreferences. It is provided after an assessment of your needs as a carer for abreak and normally also an assessment of the person you care for.Respite care can be:• Care in a residential care home or care at home for a week or longer toenable you to go away on holiday or have a long rest.• Care at a day centre, day care resource or a care home for a day togive you a break for a day or more a week.• Care by a trained person for a few hours in your home to give you ashort break a variety of help for the person you care for.It is a good idea to ensure that the person has an assessment of their needs,even if they are paying for the care themselves. You will then have a cleareridea about the kind of care they need. Contact Wiltshire Council customeradvisors to arrange this.Across Wiltshire, the Alzheimer’s and carers organisations provide breaks forcarers in the form of:• One-to-one support and mentoring for carers to talk over theirconcerns.• Counselling, complementary therapies, pampering sessions.• Sports and health sessions, day trips, book clubs, carers cafes,gardening clubs, walking groups, coffee mornings.You may be eligible for additional support to help you in your caring role,which could include help around the home or a piece of equipment that wouldhelp you. This support can be accessed through an Assessment of yourCarer’s Needs (more information in section 4). If you are eligible then youcould receive either a Direct Payment to buy your own support or your supportwill be organised for you.10

Carers direct paymentsCarers direct payments are payments that allow carers to buy their ownservices which they are assessed as needing. They must be used to supportthe carer in their caring role, to help maintain their own health and wellbeingand to improve opportunities in relation to work, education, training andleisure.Direct payments are part of what is called the personalisation agenda. This isa way of delivering services that is designed to give you more choice andcontrol over the services you receive. To access carers direct payments youneed to have an assessment of your caring needs (see section 4) and beeligible to receive services as a result.If you are eligible, then you will agree with your care coordinator how you canuse this payment. Carers direct payments can be used flexibly for a variety ofthings including paying for breaks from caring, help with housework,educational or leisure courses, gardening, holistic therapies, help towardsdriving lessons or equipment that will help you in your caring role.If the person you care for is entitled to a direct payment following their ownassessment then you may be able to become a ‘suitable person’ to receivetheir direct payment if they lack the capacity to consent to receive itthemselves.Direct Payment Support ServiceWiltshire Centre for Independent Living (CIL) is funded by Wiltshire Council tosupport people to manage their direct payments. Their service aims to helpyou to set up and manage your direct payment with confidence so that youcan get the most out of your package, having choice and control about howyour needs are met and the care you receive.The support they provide will be personal to you; they can provide as much oras little support as you feel you need.They can provide the support in a variety of ways including:• On-line and telephone advice• Workshops to hear from experienced recipients of direct payments• A chance to meet with an individual mentor - an experienced directpayment user who can support you• Introductions to join a local group of like minded people who arereceiving a direct payment• To share experiences and learn from each other• A visit from a Wiltshire CIL Independent Living resource advisor.Contact details can be found in section 25.11

Carer supportCarer Support Wiltshire works to help carers in their caring role and theyprovide a range of information and support.You can ask them all types of questions and if they do not know the answerthen they will find out for you and point you in the right direction. They haveworkers who will come and visit you in your home if that is easiest for you.They also organise a number of events, activities and groups where you canrelax, find out more about being a carer and talk to other carers who are insimilar situations to you.Carer Support Wiltshire also undertakes carers assessments on behalf ofWiltshire Council, so you can choose to have them to help you complete yourassessment if you would prefer (see section 4). Contact details can be foundin section 25.AdvocacySWAN is an organisation that aims to ensure a clear voice and representationof vulnerable people in need by providing effective and inclusive independentadvocacy. Their advocates can support individuals with dementia to expresstheir views and wishes in their own time and their own environment ensuringthey have their voice heard as their dependency of family, friends, medicaland social care professionals increases. SWAN can also provide an individualadvocate for a carer of someone with dementia. The service is free andconfidential. Contact details for SWAN Advocacy can be found in section 25.Blue Badge SchemeThe Blue Badge Scheme (formerly the Orange Badge Scheme) providesconsiderable parking concessions for people with severe walking difficultieswho travel as either drivers or passengers.The badge is issued solely for the use of the disabled person. However,applications from the public will also be considered when there is difficulty inwalking from time to time. Contact details can be found in section 25.Carers GP RegistersYour GP surgery will hold a Carers’ Register. If you are not already on it, askthe receptionist or your GP to add you to it so that you can receive extrasupport and advice. Many surgeries run carers clinics which include a healthcheck with a nurse, a longer appointment time, an appointment with a CarerSupport Wiltshire worker and financial advice.Many GP surgeries in Wiltshire have signed up to the Prescription BreaksScheme where they can write a ‘prescription’ for carers to receive a healthbreak which will improve their physical and emotional health and well being.Contact your GP surgery for more information.12

LibrariesWiltshire libraries have a range of books that are about dementia. Theyinclude biographies of carers who have looked after someone with dementia,research about dementia and books that provide information and advice onhow to live well with dementia. Libraries also offer a number of other servicesthat may be useful to people with dementia and their families and carers,which include:• The home library service• Books in alternative formats• The carers’ library card giving you a 6 week loan period• Carers’ events at libraries• Free book requests• Access to computers.For more information, contact your local library or Wiltshire Council on0300 456 0100.Memory Support Group in SalisburyElizabeth Bartlett who is an approved dementia trainer and a counsellor runsa memory support group. This group offers emotional support and takes placein an informal setting in Salisbury for the person that you look after. You willalso be able meet other carers of people with dementia as there is a carers'conversation group which meets at the same time in another room, whilst theperson you are caring for is in the memory support group. For moreinformation please contact Elizabeth on 07812 381463 orelizabethbartlett@ntlworld.comMemory boxA suitable metal, wooden or cardboard box can be used. Items from the pastof the person with dementia can act as a memory aid. The items can showwho the person is and what they have achieved in their life. Anything with apersonal memory that will stimulate them and that they can relate to is ideal.Possible objects could include things from the past, family heirlooms,household or personal items with a sentimental value, photographs, medals. Itis recommended not to include anything sharp or pointed. You can add itemsto the box as time progresses.My Life BookMake a ‘My Life Book’ for the person with dementia. The purpose of the bookis to give information of life experiences, relationships, preferences and theunique personality of the person with dementia that will be available to informstaff in hospitals or care settings. It could contain information about their dateof birth, schools (where and when), employment, likes and dislikes, theirdietary needs, daily and weekly routines, habits, interests and hobbies. Aphotograph album of past and present is another idea. The list is endless, soyou can use your own ideas too.Alzheimer’s Support run a course annually sharing ideas of how to compile alife story book. Contact details can be found in section 25.13

This is me'This is me' is a simple and practical tool that someone going into hospital cangive to staff to help them understand the person. It provides a 'snapshot' ofthe person with dementia, giving information about them as an individual,such as needs, preferences, likes, dislikes and interests.This should enable staff to treat each person as an individual, therebyreducing distress for them and their carers and helping to prevent issues suchas malnutrition and dehydration. For more information contact your localAlzheimer’s organisation – see section 25.Wiltshire Good NeighboursWiltshire Good Neighbours is aimed at older people in rural communitiesacross the county. It provides a range of information about statutory, voluntaryand commercial services that supports people to live safe, comfortable,fulfilling and independent lives. It does this through a local Good Neighbourcoordinator who will listen to clients and give them information and support toaccess a range of services such as:• Help with personal care• Befriending service• Advice on benefits• Healthcare needs• Social activities• Financial concerns• TransportContact details can be found in section 25.3Ms Magical Memory Moments ClubThis is a group that meets fortnightly in Royal Wootton Bassett for peopleliving with memory loss. Whether you have dementia or are a carer, all arewelcomed to this group. Contact details can be found in section 25Citizens Advice Bureau (CAB)This organisation offers holistic advice delivered by quality assured trainedadvisors. Information is given on the law, rights and obligations and servicesavailable. Clients are offered an initial assessment to explore their problemand find the best way of helping them. This could be information orsignposting or an appointment with an advisor. Advice areas include welfarebenefits, money and debt advice, consumer issues, housing, health anddiscrimination.The advice service is delivered from four main offices in Chippenham,Devizes, Salisbury and Trowbridge, with a further 12 outreach offices acrossthe county. Home visits can sometimes be arranged. Contact details can befound in section 25.14

Section 6 - Staying healthyIt is important for you as a carer to take care of yourself, as well as the personyou care for. Caring can be hard work, both physically and emotionally andwithout a break from caring and a little time spent on yourself you may findthat your own health gets worse. Looking after yourself can be done in manydifferent ways:• Taking a break from caringoA short break can give you the chance to relax. You might want todo something you enjoy such as seeing friends, taking a walk oreven having a long bath in peace.o A longer break can help you get things sorted and recharge yourbatteries. Speak to your GP or social worker about this. Make surethat you tell them that you need a break so that they can help you.o More details are available in Section 5• Talkingo Sharing how you are feeling with other carers or a professional canhelp. It is very likely that there are a lot of other carers who feel thesame way as you.o Support groups are held across Wiltshire where carers can meetother carers in similar circumstances. They may be able to sharewith you techniques to deal with certain situations or simply begood listeners.o NHS counselling services and other psychological support toolscan be found at GP surgeries.o Alzheimer’s Support provides a free specialist counselling service.• Healthy eatingo Caring can often take up a lot of your time and cooking may be thelast thing you feel like doing, but it is important that both you andthe person you care for eat healthily.o As a carer a healthy diet will help you stay well and will make surethat you have the energy that you need.o You may find that the appetite of the person you care for changes.This is because dementia can affect a person’s relationship withfood. For some people with dementia, eating can become difficultor they may want to eat more food than they need.o Making some small changes can help to make eating easier andless stressful.o You can talk to your doctor about how you and the person you carefor can eat healthily. They may then be able to refer you to aspecialist, such as a dietician, occupational therapist or speech andlanguage therapist.o Periodically carer support groups invite a nutritionist to speak abouthealthy eating.15

• Moving and handlingo As a carer you may need to lift and move the person you care for.Doing this incorrectly can be dangerous and can cause you todevelop problems with your back.o There is advice and equipment available to help you to carry andlift correctly. You can talk to your social worker or contact thecustomer advisors at Wiltshire Council for more information. Forcontact details see section 25.o Carer Support Wiltshire also provides training for carers. For moredetails see section 25.Looking after yourself can sometimes be hard work, but turning to your family,friends and local organisations for help is important as they can help you.You have a right to enjoy good health too.If you do get to the point that you can not carry on caring, then you should notfeel guilty or that you have let anyone down. Caring can be very rewarding,but is also exhausting and demanding. If the person you care for needs to gointo residential care or hospital then remember that you have done the bestthat you can and that you have not failed. Your needs are just as importantand sometimes this is the best solution for everyone involved.Dental ServicesIf you, or the person you care for need NHS dental services NHS Wiltshire’sDental Advice Line can provide information and support on how to find anNHS dentist. For more information contact the Dental Helpline – seesection 25.Managing your medicinesThere are various ways in which patients can be aided to take theirmedication. This can include reminder charts, prompts, aids to help patientstake inhalers/eye drops and can also include compliance aids in the form ofmonitored dosing systems. These monitored dosing systems come in variousforms and the most suitable one should be used. They can hold differentnumbers of tablets and they have various different compartments dependingon need (e.g. morning, noon, evening, night). They can be bought frompharmacies for patients or carers to fill themselves. If this is to be done, it isimportant to ensure that the medicines are in the correct compartment ofthe container.There are also issues around stability of medicines when they are storedoutside of their original containers - some medicines are more stable thanothers. This should be discussed with your pharmacist and it may be thatmedication may need to be discussed with the GP if a compliance aidcontainer is to be used to ensure that medicines are as stable as they can be.A pharmacist can assess patients under the Disability Discrimination Act 1995and can determine whether a patient would benefit from any reasonableadjustments to their services or whether an auxiliary aid would be appropriate.This auxiliary aid may be in the form of a compliance aid container.16

Section 7 - Staying safeCaring for someone with dementia can mean that a lot of the time you aremaking sure that they are safe. This may be difficult as they may still be ableto make decisions themselves, which you consider to be risky. As dementiaincreases, the person’s ability to recognise what might be dangerous orharmful decreases. Remember, any decisions should always be made in theperson’s best interests.Dangers in the homeThere are certain things around any home that could be a potential risk:• Gas appliances• Electrical equipment• Poor lighting• Carpets and loose rugs• Sharp knives or hot objects• Cleaning products and medicinesIt is important to keep the person you care for away from anything that couldbe dangerous. If you as a carer believe that it is in the best interests of theperson you care for to restrain them from harm, you are able to do so as longas it is proportionate to the risk of harm. For example, there are some thingsthat you may be able to move out of reach, but others you cannot. You willnever be able to remove all dangers, so the best you can do is to stay aware.You may want to speak to a professional for more information or refer to theMental Capacity Act.There are pieces of equipment like lifelines, pendant alarms, smoke detectors,carbon monoxide detectors and many others that can help people to remainsafe at home, 24 hours a day. This sort of equipment is called telecare orassistive technology. More information can be found in section 15.Wiltshire Fire and Rescue Service offers a free home fire safety adviceservice, including the supply and fitting of smoke alarms if you are over 65,have physical or mental ill health, live on a low income or live in an isolatedrural location.The Wiltshire Bobby Van provides a free home security service. They willupgrade door and window security where appropriate, e.g. locks, door chainsand door viewers. They offer services such as fitting key safes (they ask forthe cost of this to be covered) and will also undertake fire risk assessments, fitsmoke detectors and discuss fire safety with you. For contact information, seesection 25.If you have safety concerns about water, electricity, gas appliances or otherrisks (e.g. gas or carbon monoxide leaks) contact your utility companyimmediately, as they may be able to offer specialist advice and support toreduce any risks.17

If the person that you look after is prone to getting lost or walking away fromthe house or the people they are with, then you may find it useful to ensurethat an emergency number/name is placed into an item of their clothing, suchas a pocket or wallet. Also, placing a mobile phone in the person’s pocket orhandbag would mean that they could potentially be tracked if they werejudged to be at risk. If the person does carry a mobile phone then you canalso think about adding an ICE (In Case of Emergency) number to theircontact list. This could be your home number or someone that could becontacted in an emergency. You should explain to the person what ishappening if you choose to take any of these actions.AbuseSome people may be more at risk of being treated badly than others andthere are many different reasons and situations why this occurs. Abuse iswhen someone tries to take away your rights, when someone does or sayssomething to you which causes you to be unhappy, scared or angry. It can bein many different forms, such as:• Physical abuse - When someone hurts you through actions such ashitting, shaking, pulling hair or giving someone too much or notenough medicine.• Financial abuse - Where someone takes money or thingswithout asking.• Sexual abuse - Someone touching you or making you do sexual thingsthat might make you sad, angry or frightened.• Emotional abuse - Where someone says things to you that hurt yourfeelings or scare you.• Neglect - Not giving you things that you need, such as not being takento the doctors if you are ill, being cold a lot or having only dirty clothesto wear.• Discrimination - When people are treating you unfairly because you aredifferent. This could be for various reasons including your sex, age,language or disabilityIf you think someone is abusing you or the person you care for then it is veryimportant that you tell someone as soon as possible. It is important toremember that if the person you care for has aggressive behaviour towardsyou, you should seek help as soon as possible. Likewise if you feel that youare under great strain or stress and are becoming worried that as a result youmay hurt the person you care for; seek assistance as soon as possible. Thisshould be someone you trust such as your family, a friend, a doctor, a socialworker, the police or an organisation that supports you, such as anAlzheimer’s organisation. If nothing happens after this then it is important thatyou tell someone different.18

Wiltshire Council has the statutory responsibility for keeping people safe inWiltshire and has a safeguarding team that you can refer to for advice. It isessential that any allegation of abuse is taken seriously however insignificantit may seem at the time.Here are some useful contact details:• Wiltshire Council Social Care Team - 0300 456 0111 -customeradvisors@wiltshire.gov.uk• Wiltshire Police Vulnerable Adults’ unit - 01380 734212If you need help outside of work hours then you can contact:• Wiltshire Council Emergency Duty Service - 0845 607 0888• Police Out of Hours Service - 101 or in an emergency call 99919

Section 8 - RelationshipsIf you are caring for a person with dementia who is close to you, yourrelationship will change greatly as time passes. You will begin to take over alot of the responsibilities that were previously done by the person that youcare for. There may also be tasks that you start to do to help the person thatyou look after, which may change your relationship with them, such asassisting them to get dressed or use the toilet.There are so many changes that occur along the way when caring forsomeone with dementia that it can be difficult for carers to deal with their ownfeelings. You may experience feelings of grief, sadness, anger, resentmentand guilt. It is normal to have these feelings. Carers often find it helpful to talkthrough their feelings with family, friends, professionals and other people whoare in a similar situation to them.Attending support groups or seeing a counsellor may be of help. CarerSupport Wiltshire or your local Alzheimer’s organisation should be able topoint you in the right direction. Contact details can be found in section 25.20

Section 9 - Carer trainingWhether you become a carer quickly or gradually, it can seem as thoughthere are a lot of different things to learn. This can include learning moreabout what dementia is, looking after the person you care for and looking afteryourself. There is a lot of information available for you as a carer and trainingcourses can help you find out more in an environment that is supportive andrelaxed. Training can help you to face problems, look after your own healthand maintain your caring role, if appropriate.Training courses are available across Wiltshire and are delivered to carers insmall groups. Many carers find these sessions invaluable as they are a goodplace to learn new information, to be reminded of things they already knewand to share their experiences with other carers.Different courses are available across Wiltshire and may include topicssuch as:• First aid• What is memory?• Managing difficult behaviour• Safe moving and handling• Staying healthy• Financial and legal aspects of caring• Take care of yourself• Stress management• Relaxation techniquesCarer Support Wiltshire co-ordinate training opportunities for carers and a fulltraining programme is available from them on their website or by phoningthem. Sessions are run by various organisations, with dementia specificsessions being organised by Alzheimer’s Support and Alzheimer’s Society.Contact details can be found in section 25.Wiltshire Council also has access to several e-learning packages through anorganisation called Kwango. They include accredited training packages on:• Carer Awareness• Dementia• Mental Capacity Act• Deprivation of Liberty SafeguardsTo access these go to www.kwango.com and log in using the Username:CARERSkwa and the Password: WCC1009.Remember you can never be too prepared, it can be good to refresh what youalready know and it is never too early to attend!21

Section 10 - Financial and legal implicationsAs a carer it is useful to at least have a basic understanding of the legislationthat is in place to protect those with a mental illness, or those who may lackthe capacity to make decisions for themselves.Mental Health ActThe Mental Health Act 2007 is designed to protect people. A person can onlybe detained ("sectioned") under this Act if it is felt that their health is at risk, orthat they pose a risk to themselves or others. Several specified people haveto agree that the section is necessary, and there are strict guidelines abouthow long someone can be detained for.SectionsThe sections of the Mental Health Act that are probably most relevant forsomeone who has dementia are:• Section 2: enables a person to be detained in hospital for anassessment period of up to 28 days.• Section 3: enables a person to be detained in hospital for treatment,initially for six months. The section may then be renewed for anothersix months, and after that for a year at a time.• Section 117: requires statutory authorities to make arrangements forthe continued care of a person who has been detained underSection 3. This care must be provided free of charge. An example ofthis would be when a person with dementia has been detained inhospital for treatment under Section 3 and is then discharged to anursing home.Mental Capacity ActThe Mental Capacity Act is legislation which increases the legal rights of theperson with dementia to make or be involved in decisions about their ownhealth and care. Capacity is the ability to make a specific decision at the timeit needs to be made. The Act also means that when somebody no longer hasthe mental capacity to make a specific decision for themselves, the decisionmust be made in their best interests (usually by a health or social careprofessional) and their carer and others involved in the person’s care have theright to be consulted about each decision that needs to be made in their bestinterests. You can be the decision maker if you have been given a lastingpower of attorney for health and welfare by the person prior to them losing thecapacity to give this instruction.22

The Mental Capacity Act has five principles and carers must have regardto them:• A presumption of capacity - every adult has the right to make his or herown decisions and must be assumed to have capacity to do so unlessit is proved otherwise;• The right for individuals to be supported to make their own decisions -people must be given all appropriate help before anyone concludesthat they cannot make their own decisions;• That individuals must retain the right to make what might be seen asunwise decisions;• Best interests - anything done for or on behalf of people withoutcapacity must be in their best interests;• Least restrictive intervention - anything done for or on behalf of peoplewithout capacity should be the least restrictive of their basic rights andfreedoms.Over time dementia may lead some people to lose the capacity to make somedecisions about things like legal issues, finances and health affairs. It isimportant for all of us to plan ahead in case we are unable to take decisionsfor ourselves, but it is particularly important for you and the person you carefor to discuss this at the early stages of the illness.If the person you are looking after still has capacity to make financial and legaldecisions it is advised to undertake action as soon as practicable.However, some actions may not be possible if the person is lacking thiscapacity and you will need to refer to the court of protection. Actions toconsider taking are listed below:1. WillsEveryone should make a will. A will ensures that when a person dies, theirpossessions and/or money go to the people of their choice. People withdementia who wish to make or change their Will should seek legal advicefrom a solicitor as soon as possible. This is because there may be issuesabout that person’s mental capacity to understand, and special arrangementsmay have to be made. It is important that parents make a will safeguardingtheir family’s financial interests if they are no longer able to do so themselves.2. Setting up a trustIf the person with dementia has investments, property or savings, they can setup a trust to ensure that these assets are managed in their chosen way. To dothis the person must be able to convey their wishes clearly. A trust is a verypowerful legal document giving that person authority to deal with yourfinancial affairs. It is wise to take advice from your solicitor on your choice ofAttorney(s) to ensure that they act on your behalf in your best interest. Youcan also, in a similar way, appoint someone to make decisions about healthand personal welfare. A person needs to set up a Trust to safeguard theinterests of their family in the event that they can no longer do it themselves.23

3. Lasting Power of Attorney (LPA)LPA is a legal document that lets you appoint someone you trust as an‘attorney’ to make decisions on your behalf. This document can be drawn upat any time while you have capacity (are still mentally capable). It is useful todo this as soon as you can. You must register your LPA with the Office of thePublic Guardian if your document is to have a legal standing. You can createtwo types of LPA:• Property and Affairs LPA which allows you to choose someone tomake decisions about how to spend your money. This can includedecisions on the way your property and affairs are managed.• Personal Welfare LPA which allows you to choose someone tomake decisions about your healthcare and welfare. This includesdecisions to refuse or consent to treatment on your behalf anddeciding where you live. These decisions can only be taken onyour behalf when the LPA is registered.For more information have a look at www.publicguardian.gov.uk or ring0300 456 0300 for more details and relevant forms.If you already have a registered Enduring Power of Attorney for financial andproperty affairs, this can still be used – and it can still be registered by usingthe registration forms from the Office of the Public Guardian via their websitewww.justice.gov.uk/about/opg or by phoning them on 0300 456 0300.4. Advance decisions, wishes and preferencesAs a carer, you are likely to be involved in making significant decisions for theperson you care for as the impact of the dementia progresses. You will beasked what the person themselves would have wanted and this will help theprofessionals involved reach the best possible decision - so do try and havethe conversations and perhaps prepare something in writing in case ofadmission to hospital etc. You could use the ‘This is me’ leaflet produced byAlzheimer’s Society. For more information see section 5.An advance decision is more formal and allows the opportunity for the personto refuse treatment in specific situations. You can discuss this with your GPand also can get more information from www.adrtnhs.co.ukYou may also find the ‘Planning for your Future Care’ guide useful as it givesa simple explanation about advance care planning and the different optionsopen to you. This can be accessed atwww.endoflifecareforadults.nhs.uk/publications/planningforyourfuturecare orby contacting Wiltshire Council on 0300 456 0111.24

5. Court appointed deputyIf there is not a registered LPA in place and the person you care for becomesunable to manage their financial affairs, it may be necessary to appoint adeputy through the Court of Protection, which can be an expensive optionalthough if managing financial affairs consists simply of managing yourincome from benefits, it would be done through appointeeship. In some casesthe court could also appoint a deputy to make health and welfare decisionsif necessary.6. Benefits appointeeA carer can be named as the person's appointee so that he/she can legallyhandle their income from state benefits. An appointee cannot manage theperson's income from other sources or their savings.7. ReceivershipReceivership becomes necessary if someone who has not made a LastingPower of Attorney becomes mentally incapable of managing their financialaffairs. Acting as a receiver for someone is more complex than acting as anattorney. There are usually considerable costs involved in this process.For any of the above actions, it is best to seek further advice. This could befrom a legal professional or from an organisation such as the Citizens’ AdviceBureau. For contact details see section 25.Deprivation of Liberty (DoL) Safeguards 2009This legislation is part of the Mental Capacity Act and provides protection forvulnerable people who are accommodated in hospitals or care homes incircumstances that amount to a deprivation of their liberty and who lack thecapacity to consent to the care or treatment they need. These safeguardshave been introduced to ensure that no one is deprived of their liberty in thesecare settings without good reason, that the decision is taken in their bestinterests and there is no less restrictive option and that people who aredeprived of their liberty receive the care they need while retainingspecific rights.You as a named family member or friend may have an opinion about whetherthe proposed care plan is appropriate and you should be involved by the carehome or hospital in this, before they apply for an authorisation. The BestInterest Assessor will also involve you in the process during the assessments.If the DoLS authorisation is granted, you may be asked if you are willing to bethe Person’s RepresentativeYou may have concerns that your friend or family member is being unlawfullydeprived of their liberty, in which case you should inform the hospital or carehome immediately and/or discuss with the Wiltshire DoLS helpdesk team on01225 756598.For more information you can look at the Wiltshire Council website:www.wiltshire.gov.uk/healthandsocialcare/healthandmedicaladvice/mentalcapacity/deprivationoflibertysafeguards.htm25

Funding your own careAround 40 percent of individuals who go into residential and nursing care inthe county have to finance care themselves as they have capital (savings andassets) worth more than £23,250.Paying for care can be an expensive and open-ended commitment so westrongly recommend that you seek specialist information and advice beforeentering into any commitments. If you are currently in receipt of care it is stilladvisable to seek specialist information and advice as there may be optionsavailable to you to protect your interests.To support people who pay for their own care, Wiltshire Council is workingwith two independent care fees specialists - Ashcourt Rowan and Care FeesInvestment Ltd – to help you make informed choices about your long termcare and specifically how you can fund it.These specialists can provide you with an obligation free consultation. Areason which they can provide advice include the best way to fund your care,safeguarding assets and avoiding the risk of running out of funds to pay foryour care. Additionally they will be able to advise you of your entitlement tostate benefits, setting up a Power of Attorney and other matters related tolater life planning.All of the Specialists are Later Life Accredited Advisers through the Later LifeAccreditation Scheme.These Care Fees Specialists are directly authorised and regulated by theFinancial Services Authority. Wiltshire Council is not responsible for anyadvice provided by the care fees specialist. The Financial Services Authoritydoes not regulate will writing, taxation or trust advice. The value ofinvestments and any income derived from them may go down as well as upand you may not get back the full amount you invested.Should you run out of funds and there is no third party to top up the differencebetween the council’s funding limit and the cost of your care home, the councilwill ensure your assessed needs are met but may need to ask you to move toless expensive accommodation.Contact details for Care Fees Investment Ltd and Ashcourt Rowan can befound in Section 25.26

Section 11 - Benefits and managing your moneyThe Department for Work and Pensions provides a variety of benefits forboth you and the person you care for and you should not be reluctant toclaim them.If you think there is any possibility that you are not getting all the benefits towhich you are entitled, we would urge you to get expert advice as your claimfor benefits may affect the benefits for the person you care for. This could befrom Citizens Advice, the Financial Assessment and Benefits Team or yourlocal Department of Work and Pensions. If you feel that you requireassistance in accessing the benefits system as you are unsure of yourentitlements, you can ask the customer advisors at Wiltshire Council for abenefits check - contact details in section 25.The benefits for carers include:Carers' allowancePaid to people who spend at least 35 hours a week caring forsomeone. There are a large number of carers, who for various reasonsare unable to claim this, but it is worth asking as you may well beable to.Carers’ premiumIf you are entitled to Income Support, income-based Jobseeker'sAllowance, Pension Credit, Housing Benefit and Council Tax Benefit asa carer, you may be able to receive the carers’ premium. Check withyour local Benefits office or Jobcentre Plus office.Carers caring for a total of 20 hours per week or more are also able to applyfor Carer’s Credit to protect their State Pension – both the basic and StateSecond Pension.The benefits for people requiring personal care include:Attendance allowancePaid if you need help to look after yourself if you are aged 65 yearsor olderDisability living allowancePaid if you need help looking after yourself before you reach the age of65. (From June 2013, disability living allowance is being replaced by anew benefit called Personal Independence Payment. More informationabout the changes can be found by contacting Citizen’s Advice Bureau- see section 25).Employment service allowance (previously incapacity benefit)Paid if you are incapable of work because of sickness or disability27

Other benefits and offers that you may want to find out more about are:• Council tax benefit• Housing benefit• Income support• Working tax credit• Pension credit• State retirement benefit• Bereavement benefit• Widow’s benefit• Winter Fuel Payment for the over 60s - call 08459 15 15 15• Watersure - Subject to receipt of certain prescribed benefits, this canlimit water bills - to apply for Watersure you will need to contact yourlocal water company. More information can be found at:www.ofwat.gov.uk/consumerissues/assistance/watersure/You will also find useful information on the government web site www.gov.ukand on the Carers Trust website.Managing your moneyWiltshire Community Bank is made up of local credit unions which arefinancial co-operatives - owned and controlled by their members. Creditunions are regulated by the Financial Services Authority (FSA) which meansthat your savings are safe. Wiltshire Community Bank is for everyone andlooks forward to welcoming you as a member.Credit union members can access:• Savings and standard loans• Prepaid debit cards (Alto)• Budgeting accounts• Co-op electricals.Dealing with loan sharksLoan sharks are unlicensed money lenders who charge very high interestrates and sometimes use threats and violence to frighten people who can’tpay back their loan.Debt adviceYou can find a list of organisations providing debt advice on the WiltshireMoney website.The Money Advice ServiceA national helpline giving you free, clear, unbiased advice to help you manageyour money.28

Section 12 - Working and caringYou may be considering giving up work so that you can continue to care, oryou may find you cannot work because of the time you spend caring.Your role as a carer may have ended and you may be looking for work.No two carers are the same and caring can be unpredictable.Problems you could face as a carer when working may include:• Stress and anxiety from constantly juggling work and care.• Tiredness and having to cope with little or broken sleep.• Isolation because you have no time to go out and socialise.• Feeling that your colleagues think you are not committed to yourpaid work.• Organising care for the person you look after whilst you are at work.However, the benefits of being able to work may include improved financesnow and in the future, increased self-esteem and better social networks.Carers UK have useful information about your rights and the supportavailable. Contact details in Section 25.Carers’ rights at workAs a carer you have statutory rights at work to help you meet the needs ofcaring and working. The two main Acts are the Work and Families Act 2006and Employment Rights Act 1996. The Equality Act 2010 also offers carerssome additional protection against discrimination and harassment based upontheir relationship to the person that they care for.The type of support that employers should be able to give you as a carerincludes time off for emergencies and flexible working.As a carer you may take ‘reasonable’ time off to deal with an emergencyrelating to a dependent, emergencies such as an unexpected illness, anaccident, a breakdown in care arrangements or a need to make longer termarrangements for someone who is ill or injured, but not to provide long termcare yourself.As a carer you have the right to request changes in your work patterns tomanage your caring responsibilities, which may include flexible workingpatterns, the ability to work from home (where this is possible) or reducinghours temporarily or permanently.Information on flexible working should be available from your manager,human resource/personnel team or welfare officer, union or staffrepresentative.29

Talking to your employerTalking to your employer may help you explain the impact that caring has onyour life and your job and help your employer to understand how they canbest help.Caring for a disabled relative is often unpredictable and care arrangementscan be complex, so you will need to talk to your employer about yourconcerns and commitments.Think about how your employer could best help you and talk to them aboutyour needs.If you want to work, it is in your employer's best interest to consider makingreasonable changes to your work pattern to help you work and continuecaring.Many employers offer help to carers. This could include:• Talking to a welfare officer or occupational health adviser who knowsabout carers.• In-house information and advice or counseling.• A subscription to a carers' organisation, or employee services.Thinking of leaving paid work?Many carers make the difficult decision to leave work and concentrate oncaring. Before deciding to do this, you may find it useful to think about:• How you would manage financially.• What support you might receive from family and friends to help youkeep working.• How difficult it may be to get back into work if your caring role changed.• Whether you would be able to continue work if more help from servicessuch as Help to Live at Home for the person you care for were in place.• What difference this might make to your relationship with the personyou care for.• What welfare benefits you may be entitled to.• What would happen to your retirement pension, occupational pensionand national insurance contributions.• What local support there is for carers, such as support groups andactivities.• What support is available so that you can take a break from caring, orkeep up contact with friends.It may be useful to discuss these issues in confidence, with Carer SupportWiltshire (see section 25 for contact details).30

Returning to workIf you have been caring for some years and are thinking about going backto work you may feel you no longer have the skills required, or maylack confidence.Carers can learn valuable skills whilst caring and some of these can betransferred to work. It can be very difficult to think about returning to work, butyou can start by thinking about your skills, now and in the past.Support to go back to work can be found from Job Centre Plus:• Training programmes to learn new skills or refresh old ones.• Support to make applications and CVs and prepare you for aninterview.• Financial help when you move into work.Job Centre Plus also offers support to carers who want to combine theircaring role with work. They will help you:• prepare for work and find suitable training• offer funding for replacement care when you participate in training andappointments that they have agreed• offer funding for job interviewsThey have introduced specialist training for advisors who work with carers.City and Guilds has worked with Carers UK, Action for Carers andEmployment (ACE) National and other partners to develop "Learning forLiving", personal development and learning tools for carers. Learning forLiving consists of online learning resources for carers and a qualification.Individual colleges have funds to support young people who would otherwisestruggle financially through further education. Each college should becontacted individually to discuss bursaries and financial assistance with travelfares, purchasing books and equipment and so on.Working carers’ groupsCarer Support Wiltshire runs a working carers group, which allows carers whowork and balance a caring role to get together, socialise and shareexperiences. Contact details in section 25.31

Section 13 - Hospitals and dischargeOne of the areas that many carers find difficult is when the person they carefor has been in hospital and is then discharged. The reasons for this can vary,but often involve the changes in the health and care needs of the person youlook after.During the cared for person’s stay in hospital there will be ‘family meetings’(which also include carers who are not family), where discharge arrangementsare discussed. It is extremely helpful for as much information about the caredfor person’s home circumstances to be available as soon as possible in orderto make the correct choices/decisions for discharge planning.Do not hesitate to ask questions or provide further information either whenyou visit or phone the hospital.Before a patient is able to leave hospital, a discharge plan should be preparedby the hospital with you and the person you care for. If there are doubtsconcerning the capacity of the person you care for to make any decisionsabout their future care and/or treatment, then a mental capacity assessmentmust take place. If following the assessment, it is judged that the person doesnot have the capacity to understand the decision they need to make, and isunable to weigh up the risks and consequences of making that decision, thena best interests meeting will be held to which you should be invited.The care plan will normally include:• Details of the staff member who is responsible for discharge.• Details of any help, support and equipment which need to be arranged.• Contact details of any community health services that will be involved.Social care staff can provide information about services available and providedetails of other organisations where appropriate.If Wiltshire Council is responsible for arranging care after someone leaveshospital, then wherever possible, they will try to get people home before anydecision on longer term care is made. Sometimes a short term placement in acare home is arranged if it is agreed that the person is well enough to leavehospital, but not quite ready to manage at home. This temporary placementwill be for a limited period of time and will focus on getting the person as wellas possible, so that they can then move back home.Whilst hospitals will be making sure that everything goes as well as possible,you may find it useful to use the checklist below to make sure that the rightplans are in place for when the person you care for is discharged.32

• Has the person you care for been given at least 24 hours notice beforebeing discharged?• Has any transport that is needed been organised?• Has any property and valuable items been returned to the person youcare for?• Has any equipment, training or fittings been supplied to where theperson will be returning to?• Do you know what care will be provided to the person you look afterwhen they return home and have you been involved in thesedecisions?• Has someone talked to you about the level and type of care that youwill be providing and whether you are happy and able to provide this?• Has the person’s GP been told that they are being discharged?• Have any medicines that are needed been supplied? Do you know howmany the person needs to take and any side effects?• Have any medicines been put into a dosage box before the personleaves the hospital?• Have you got information about the person’s health condition, whatsymptoms to look for and how to get help if you need it?• Do you know what follow up health appointments are needed?You may well think of other questions to add to this list - this is just a startingpoint. Make sure that you speak to the people in the hospital if you have anyconcerns, and remember that there is no such thing as a silly question. As themain carer it is important that you know what is happening and you should notbe afraid to ask.There is also a hospital liaison service for carers in Salisbury District Hospitaland at the Royal United Hospital. This service is designed to ensure thatcarers are identified early on, that they are signposted to support services andinvolved in hospital discharge planning.33

Section 14 - Working with professionalsIt is likely that you are the person who knows the most about the person youcare for. Sometimes professionals can forget this and they may try and makedecisions without taking your caring role into consideration. This cansometimes feel like they are taking over and not involving you in decisions,which will have a big impact on you and the person that you care for.If however you have a Lasting Power of Attorney for health and well being youhave the legal rights to be the decision maker in these situations. The MentalCapacity Act tells professionals that they must consult with you as a carerwhenever they have to make decisions and so you could remind them of yourlegal rights to be involved. The decision makers need to listen to what youthink is in the best interests of the person you care for and your reasons forthinking this (e.g. because you are the one who knows what the person wouldhave preferred to happen to them) - but they may have a different opinion andyou can make a challenge to this legally.It is important to remember that you are the carer and that your role is vital.You may have to remind the professionals involved that you are a partner incaring for the person with dementia and that without you, they would not beable to do their job. You should not be worried about saying this, if it is in thebest interest of those involved. If you feel unable to do this, then there areadvocacy services available in Wiltshire who will help you to voice your issuesand concerns. Contact details for SWAN Advocacy can be found insection 25.You may also find it useful to ask the professionals that they share informationwith you about the person you care for. They may have to ask the consent ofthe person with dementia to do this. Given the nature of dementia, manypeople may find this useful to do early on as it can ensure that you stayinformed about their health and care.34

Section 15 - TelecareTelecare is sometimes called assistive technology. It aims to promotepeople’s independence, improve safety at home and provide reassurance topeople and those who care for them.Telecare can provide invaluable help and support for carers. With solutionsthat can monitor an individual both day and night, it can give carers peace ofmind and information, allowing them more freedom and in some cases a goodnight’s sleep for the first time in years.Telecare is often used for people with moderate dementia where they eitherand live alone or with someone who cares for them. Difficulties can arisewhere a person with dementia may leave the home during the night, making itdifficult for their carer to leave them alone or have a good night’s sleep. Otherdifficulties can include people leaving cookers on or taps running, which inturn can cause anxiety and worry for their family.Telecare usually consists of a base unit, linked to a telephone and sometimesa personal pendant that is worn around the neck, on the wrist or attached to abelt. There are also a number of sensors that automatically monitor the homeenvironment. Telecare packages can be installed that include “property exitsensors” and heat or water detectors which send alerts to the responseservice.When an alarm is activated, trained staff at a monitoring centre will respondand, if necessary, will arrange for someone to visit at any time of the day ornight. They may also contact the emergency services if necessary.If you are interested in telecare and think that this may be a useful addition tothe support available to the person that you care for, you can get furtherinformation about the options available in your area from the customeradvisors at Wiltshire Council - contact details in section 25.Section 16 - Sheltered housingSheltered housing covers a wide range of supported housing for people. It isimportant therefore to check what facilities a particular sheltered housingscheme will offer.It is rented or owner occupied accommodation and the majority have low levelsupport and telecare alarm services available in them. They do not offerpersonal care but offer low-level support including emergency support oftenthrough a linked alarm system. They also help older people obtain the careand support they need and the support they offer includes things like help withform filling, general safety checks and enabling residents to organise oraccess other facilities and services. Some schemes have communal facilitiessuch as a common room, laundry, guestroom and gardens and some willinclude a restaurant and the provision of hot meals.35

Section 17 - Extra care housingExtra care housing is a growing part of the housing market for people. It canbe owned, rented, part owned/rented (shared ownership) or leasehold. Extracare housing can broadly be described as housing into which a range of careand support services can be delivered on-site 24 hours a day.Extra care is gaining a reputation for offering accommodation and care topeople who would otherwise be frequent users of acute services (largelybecause they cannot look after themselves in unsuitable housing). Models ofextra care are various, because it is a concept rather than a housing type.Generally however, an extra care scheme is a development of flats and/orbungalows with a manager and the availability of care and support totenants/leaseholders 24 hours a day, usually supported by a lifeline and othertechnological assistance. There is normally a café or meal provision availableand an additional range of services and activities which are open totenants/leaseholders and others living in the surrounding area.For more information contact the Wiltshire Council Customer Advisors - seesection 25 for more details.36

Section 18 - Help to live at homeHelp to live at home, sometimes known as home help, home care ordomiciliary care, covers a number of different services available to the caredfor person in their own home, and is provided so that they can remain asindependent as possible. This can also help you as a carer, as it can reducethe number of additional tasks that you have to do. Organisations providingpersonal care to people in their own homes have to be registered by the CareQuality Commission (CQC), the same organisation that regulates care homes.This help could involve washing and dressing in the mornings, undressing andputting to bed in the evenings, supervising the administration of medicationand preparation of meals.The person you care for can have a Community Care Assessment (CCA) witha member of the Wiltshire Council social care team, which could entitle themto extra care and support. The Council can provide up to 6 weeks of supportfree of charge to help people live independently at home.For longer term support the person you care for will be financially assessed tosee if they will need to make a financial contribution towards the cost of anysupport. All support is focused on working towards outcomes that will help youand the person you care for be as independent as possible. The support isprovided by an independent company and funded by social services withincertain financial guidelines. To access information regarding Help to Live atHome in Wiltshire you can call the customer advisors at Wiltshire Council -contact details in section 25. Help to live at home can also be arranged bycontacting your doctor, hospital, social worker or key worker/care manager.Through the Community Care Assessment, it may be identified that certainequipment would benefit you and the person you care for, such as bathing ortoileting aids, so this might lead to an Occupational Therapy (OT)assessment. If you need to hire an item of equipment for a short period oftime, such as a wheelchair, bath aid or back rest, this can be arranged bytelephoning the British Red Cross which will advise you where your nearestcollection office is.The Independent Living Centre at Semington can provide advice onpurchasing equipment for the home; telephone them to arrange anappointment to visit.37

Section 19 - Residential and nursing care homesSome carers decide that they will try to continue looking after the cared forperson in the home environment.In many carers’ lives however, there comes a time when they realise that,despite how hard they try they can no longer provide the care needed for theperson in their own home. The ability of the person you are caring for to makea decision about their future care and accommodation needs to be assessedand only if they lack the ability to make this decision can a best interest’sdecision be made on their behalf. You can ask a health or social care workerto carry out this assessment regardless as to whether funding is needed topay for alternative care.If, following a capacity assessment, a best interests decision has been madethat the person you care for should move to an alternative care setting, youwill be given advice as to the type of care home that should be considered.This will largely depend upon the needs of the person that you look after.To place the person you care for into a home might feel very difficult. Onecannot prepare for the feelings of loss, failure, guilt, and lack of purpose thatyou might find come flooding to the surface.Many carers find this step to be the most painful and difficult to take.However, many also find that once the cared for person is settled; visitingoften achieves quality time together without the daily work associated withcaring. If the person does not understand that they need to remain in theparticular care home in order to receive the care and treatment they need, thehome may request an authorisation for Deprivation of Liberty Safeguards sothat they can, in the person’s best interests, ensure that the person cannotleave the home at will. In these circumstances, you would be asked to act asa personal representative and be given the power to ask for reviews etc. onthe person’s behalf.There are two main types of care homes:• Residential care homeProvides support as if you are in your own home, and help withpersonal care such as getting up and going to bed, washing, dressingand going to the toilet.• Nursing care homeProvides care for people with more complex needs who require theskills of a qualified nurse. They are required by law to have a qualifiednurse on duty 24 hours a day.38

Both types of care homes might provide care for people with mild to moderatedementia. In addition some care homes provide care for people whose needsrequire more specialist input where the staff have the experience and skills tocope with more challenging behaviours. These care homes may havespecialist dementia units or the home may specialise in dementia care. Thisused to be referred to as Elderly Mentally Infirm (EMI). Some care homessimilarly specialise in providing care for people with specific mentalhealth needs.Do not feel pressurised or hurried into moving the cared for person. Takeadvice on the care homes and visit as many as you wish before choosing one.If you have a care manager/key worker then they will have a list of carehomes that are registered with the Care Quality Commission (CQC) in thearea and will assist you in this step. If not, more information can be found outby contacting the Care Quality Commission or Wiltshire Council.To be registered, all care homes have to be inspected by the Care QualityCommission (CQC) and you can ask the home for a copy of their latest report.Otherwise, if you have access to the internet you will be able to find the latestinspection reports for any particular care home at www.cqc.org.uk, or you cancontact Wiltshire Council (in section 25 for details) for more information. TheCQC website also has useful information about what to think about whenchoosing a care home and some examples of good and bad practice tohelp you.As the carer you have become the voice of the person that you look after soyou should be happy that the home you choose is the one that you feel mostcomfortable and safe with and that it is the best option for the caredfor person.Again do not feel pressurised or hurried into a decision before you understandall the financial implications of the move. Before making a decision you shouldget financial advice. You will need to take into account the Council’s approachto supporting people when they are no longer able to fund the costs ofresidential care themselves. You can call one of the Wiltshire Councilcustomer advisors for further information. For contact details see section 25.Advice from care fees specialists is also available for people who fund theirown care - see section 10 for more information.Ask to be assessed for continuing health care (NHS funding for a package ofcare) if the cared for person is very ill. This is where your record of medicaltreatment and incidents will serve you well.Choose your care home very carefully. Make sure it will be able to meet theneeds of the individual that you care for.Alzheimer’s Society has produced a useful factsheet called ‘Selecting a CareHome’ - see Section 22 for more information.39

Section 20 - CounsellingCounselling is a talking therapy that gives people the chance to talk inconfidence to a trained professional about problems or issues that arecausing them concern. There are many different types of counsellingavailable.Counselling consists of an agreed number of regular sessions between acounsellor or therapist and the person seeking support, often called the'client'. Sessions usually last for an hour, but they can be shorter. Counsellingcan last for a few weeks, several months or even years. The counsellor listensto the person's concerns in a non-judgmental and supportive manner.Together, the counsellor and the client try to find ways for the client to copeand/or feel better about themselves and their situation. This may result in amore satisfying and manageable life.The relationship between client and counselor is confidential. This meanswhat is discussed at the sessions will not be disclosed to anyone else. Someof the issues that the client will bring to the session may be distressing orembarrassing. This is normal. Sharing these feelings and thoughts in asupportive, safe and confidential setting is often helpful, and can belife changing.Counselling can increase feelings of self-worth, well-being and capability, andhelp ease feelings of depression, anxiety, loss of control and sleeplessness.Counselling can be very beneficial for you and the person with dementia.Caring for someone with dementia can be a very lonely time, and can beoverwhelming. Many carers experience feelings of sadness, guilt, anger andgrief, and talking through these feelings with an experienced counsellor canhelp you to explore and understand your thoughts.Alzheimer’s Support provides a free counselling service for carers and peoplewith dementia who live in east and west Wiltshire. More details of this can befound in section 25.Other organisations also offer counselling or will point you in the rightdirection, such as the Samaritans, Cruse, Relate and the Citizens’ AdviceBureau. Contact details in section 25.Counselling services and other psychological therapies are available from theNHS, speak to your GP.40

Section 21 - Moving on from caringYou may cease to be a carer for a variety of reasons and you are likely toexperience mixed emotions due to:• grief• loss• relief• guilt• emptiness• loneliness• changes in circumstances.If you are known to Alzheimer’s Support, Alzheimer’s Society or CarerSupport Wiltshire they can support you through this time and for a limited timeafter your caring role ends.They can advise you on returning to work, support you to socialise again andinform you on the opportunities for volunteering, alongside putting you intouch with other organisations which may help the moving-on process.Wiltshire Council and NHS Wiltshire have commissioned Relate to providebereavement counselling groups for carers across Wiltshire. Support can alsobe obtained from Cruse.SWAN Advocacy supports and empowers individuals to ask for theinformation and services they need in order to improve their own health andwell-being. As well as supporting carers, they welcome new volunteers.Other ways forward through volunteering can be found at the WiltshireVolunteer Centre and Job Centre Plus.41

Section 22 - Wiltshire Council FactsheetsWiltshire Council factsheets cover a wide range of information about servicesin Wiltshire. They can be found atwww.wiltshire.gov.uk/adultcarefactsheets.htm or you can call 0300 456 0111.1 Assessment of need2 Eligibility criteria and fair access to care3 Residential/nursing home care4 Residential/nursing home fees5 Care at home6 Direct payments7 Protecting (safeguarding) vulnerable adults from abuse10 Day services for people with a learning disability11 Advocacy12 Adult Placement13 Community meals22 Charges and benefits23 Management of personal financial affairs25 Self-directed support26 Blue badges27 People who fund their own care28 Community connecting29 Equipment to help you in your home30 Waste collection for residents who need support42

Section 23 - Alzheimer’s Society FactsheetsAlzheimer's Society factsheets cover a wide range of dementia-related topics.Visit www.alzheimers.org.uk/factsheets or call 0300 222 11 22.Causes of dementia, progression and drug treatments400 What is dementia?401 What is Alzheimer's disease?402 What is vascular dementia?403 What is dementia with Lewy bodies (DLB)?404 What is fronto-temporal dementia (including Pick's disease)?405 Genetics and dementia407 Drug treatments for Alzheimer's disease408 Drugs used to relieve behavioral and psychological symptomsin dementia417 The later stages of dementia430 Learning disabilities and dementia434 Complementary and alternative medicine and dementia438 What is Korsakoff's syndrome?440 Younger people with dementia442 Rarer causes of dementia444 Depression and anxiety446 What is HIV-related cognitive impairment?450 Am I at risk of developing dementia?456 The brain and behaviour458 The progression of Alzheimer's disease and other dementias470 Mild cognitive impairment520 Hallucinations and delusions527 Visuoperceptual difficulties in dementiaEmotional and practical support409 Volunteering for research into dementia410 Brain tissue donations429 Equipment, adaptations and improvements to the home436 The Mini Mental State Examination (MMSE)437 Assistive technology - devices to help with everyday living439 Driving and dementia445 Talking therapies (including counseling, psychotherapy and CBT)448 Dental care and dementia455 Supporting a person with dementia during visits, holidaysand celebrations462 Respite care471 After a diagnosis474 Travelling and going on holiday475 Frequently asked legal questions476 Selecting a care home480 Supporting lesbian, gay and bisexual people with dementia482 Moving into a care home - advice for lesbian, gay and bisexual people500 Communicating501 Moving and walking about43

502 Coping with incontinence503 Safety in the home504 Washing and bathing505 Keeping active and staying involved507 Grief and bereavement509 Dealing with aggressive behaviour510 Dressing511 Eating and drinking512 Pressure sores514 Sex and dementia515 Dementia and children or young people516 Dealing with guilt517 Living alone518 What if I have dementia?521 Maintaining everyday skills522 Staying healthy523 Carers: looking after yourself524 Understanding and respecting the person with dementia525 Unusual behaviour526 Coping with memory loss528 Urinary tract infection (UTI) and dementia529 Exercise and physical activity for people with dementiaHealth and social care418 Community care assessment425 How the GP can help426 Diagnosis and assessment452 Assessments for NHS - funded nursing care453 Hospital discharge454 How health and social care professionals can help465 Choices in care477 Care on a hospital wardLegal and financial information413 Benefits414 Council tax431 Benefits rates and income/savings thresholds459 The Mental Health Act 1983 and guardianship460 Mental Capacity Act 2005463 Advance decision467 Financial and legal affairs468 Paying care home fees469 When does the local authority pay for care?472 Enduring power of attorney and lasting powers of attorney473 Direct payments483 Deprivation of liberty safeguards44

Section 24 - Age UK FactsheetsAge Concern’s factsheets cover a wide range of topics. They can be found atwww.ageuk.org.uk/publications or by contacting 0800 169 6565.1 Help with heating costs2 Buying retirement housing3 Television licence concessions4 Rights at work5 Dental care: NHS and private treatment6 Finding help at home7 Making a will8 Council and housing association housing9 Anti-social behaviour in housing10 Paying for permanent residential care11 Help with looking for work or starting your own business12 Planning for retirement: money and tax13 Funding repairs, improvements and adaptations14 Dealing with an estate15 Income tax16 Transgender issues in later life17 Housing benefit and council tax benefit18 Information about telephones19 State pension20 NHS continuing health care‚ NHS-funded nursing care21 Council tax22 Arranging for someone to make decisions about your financeor welfare23 Help with continence24 Self directed support: direct payments and personal budgets25 Returning from abroad26 Public transport and concessions27 Planning for a funeral28 Tracing lost money29 Finding care home accommodation34 Attendance allowance35 Tenants' rights - rents37 Hospital discharge arrangements38 Treatment of property in the means test for permanent carehome provision39 Paying for care in a care home if you have a partner40 Deprivation of assets in the means test for care home provision41 Local authority assessment for community care services42 Disability equipment and how to get it43 Getting legal advice44 NHS services46 Paying for care and support at home48 Pension credit49 The Social Fund52 Disability living allowance45

53 Capital‚ income and means-tested benefits55 Carer's allowance56 Guide to benefits for people under state pension age58 Paying for temporary care in a care home59 How to resolve problems and make a complaint about social care60 Choice of accommodation61 Help with health costs62 Deprivation of liberty safeguards63 Finding private rented accommodation64 Retirement (sheltered) housing65 Equity release66 Resolving problems and making a complaint about NHS care67 Tenants' rights - repairs68 Tenants' rights - security of tenure69 Water advice70 Dealing with disputes at work71 Park homes72 Advance decisions, advance statements and living wills73 Driving and parking74 Challenging welfare benefit decisions75 Debt advice76 Intermediate care and re-enablement77 The law on age discrimination78 Safeguarding older people from abuse79 The Equality Act 2010: The public sector equality duty80 Employment and support allowance81 Calculating income-related employment and support allowance82 Switching energy supplier83 The Equality Act 2010: further and higher education84 The Equality Act 2010 and employment85 Consumer contract rights86 Consumer: your rights under general contracts87 Personal Independence Payment (PIP)46

Section 25 - Contact detailsOrganisationContact details3Ms Magical MemoryTel: 01793 848686Moments ClubAge UK (previously AgeTel: 0800 169 6565Concern and Help the Aged) Website: www.ageuk.org.ukAlabare Include Tel: 01380 738602Website: www.alabareinclude.com/directory/Alzheimer’s Society -Tel: 01249 443469North WiltshireWebsite: www.alzheimers.org.ukAlzheimer’s Society Salisbury Tel: 01722 326236and DistrictWebsite: www.alzheimers.org.ukAlzheimer’s Support West Tel: West Wilts - 01225 776481Wiltshire and East Wiltshire East Wilts - 01380 739055Website: www.alzheimerswiltshire.org.ukAlzheimer’s Society (National) Tel: 0300 222 1122Ashcourt Rowan (Care FeesSpecialist)Website: www.alzheimers.org.ukTel: 01225 475359Website: www.ashcourtrowan.com/financialplanningBenefits Team - Wiltshire Council Tel: 0300 456 0111Blue Badge Parking Scheme Tel: 01225 713002Website: www.wiltshire.gov.uk/bluebadgesBritish Red Cross Tel: 0117 301 2600Website: www.redcross.org.ukCare Fees Investment Ltd Tel: 0845 077 5655Website: www.carefeesinvestment.co.ukCarer Support Wiltshire(Previously: Carer Support WestWilts, Carer Support North Wilts,Carers Support Kennet andCarers Support South Wiltshire)Tel: 0800 181 4118Website: www.carersinwiltshire.co.ukCarers Emergency Card Tel: 0800 066 5068Carers Trust(previously known as PrincessRoyal Trust for Carers)Tel: 0844 800 4361Website: www.carers.orgCarers UK Tel: 0808 808 7777Website: www.carersuk.orgCarers Direct Tel: 0808 802 0202Website: www.nhs.uk/carersdirectCitizens Advice BureauTel: 0844 375 2775 (from a landline) or0300 456 8375 (from a mobile)Website: www.cabwiltshire.org.ukCare Quality Commission Tel: 0300 061 6161Website: www.cqc.org.ukCommunity Transport Tel: 01380 732816Website: www.wiltshirecommunitytransport.org.uk47

OrganisationContact detailsCAB Consumer advice service Tel: 0845 404 0506Website:www.direct.gov.uk/en/Governmentcitizensandrights/Consumerrights/index.htmCommunity Mental Health Chippenham/Melksham/Devizes/Trowbridge andService - Complex Intervention surrounding areas - 01380 731358Teams (previously Community South Wiltshire including Warminster/Westbury andMental Health Teams) provided surrounding area - 01722 820252by Avon and Wiltshire Mental Website: www.awp.nhs.ukHealth PartnershipCruse Tel: 0844 477 9400Website: www.crusebereavementcare.org.ukTel: 0845 758 1926Website: www.wiltshire.nhs.uk/dentistryDentalNHS Dental HelplineDorothy House Hospice Care Tel: 01225 722988Website: www.dorothyhouse.co.uk/Health - NHS Wiltshire Tel: 01380 728899Website: www.wiltshire.nhs.uk/Hospital - ChippenhamTel: 01249 447100(community)Hospital - Devizes (community) Tel: 01380 723511Hospital - Great Western Tel: 01793 604020HospitalWebsite: www.gwh.nhs.uk/Hospital - Melksham (community) Tel: 01225 703088Hospital - Royal United Hospital Tel: 01225 428331Website: www.ruh.nhs.ukHospital - Salisbury District Tel: 01722 336262Website: www.salisbury.nhs.ukHospital - SavernakeTel: 01672 517200(community)Hospital - TrowbridgeTel: 01225 711300(community)Hospital - WarminsterTel: 01985 212076(community)Independent Age (previouslyCounsel and Care)Tel: 0845 262 1863Website: www.independentage.org/Independent Living Centre Tel: 01380 871007Website: www.ilc.org.ukMencap Tel: 0808 808 1111Website: www.mencap.org.ukNational Money Advice Service Tel: 0300 500 5000Website: moneyadviceservice.org.ukRelate Tel: 0300 100 1234Website: www.relate.org.ukRoyal National Institute forDeaf PeopleTel: 0808 808 0123Website: www.rnid.org.uk48

OrganisationContact detailsRoyal National Institute for Tel: 0303 123 9999the BlindWebsite: www.rnib.org.ukSamaritans Tel: 0845 790 9090Website: www.samaritans.orgSouth West Ambulance TrustTel: 01392 261500 (main switchboard - not formedical advice or emergencies)Website: www.wiltsamb.nhs.ukStroke Association Tel: 0303 303 3100Website: www.stroke.org.ukSWAN Advocacy Tel: 01722 341851Website: www.swanadvocacy.org.ukVitalise (Holidays for disabled Tel: 0303 303 0145people and carers)Website: www.vitalise.org.ukWiltshire Bobby Van Tel: 01225 794652Website: www.wiltshirebobbyvan.org.ukWiltshire Centre for Independent Tel: 01380 725400 or 01380 729497 orLiving (CIL)0300 1233442Wiltshire Community Bank/Wiltshire MoneyWiltshire Council customeradvisors - Adult CareWebsite: www.wiltshirecil.org.ukTel: 01249 248323Website: wiltshiremoney.org.ukTel: 0300 456 0111Website:www.wiltshire.gov.uk/healthandsocialcare.htmWiltshire Council Libraries Tel: 0300 456 0100Website: www.wiltshire.gov.uk/librarieshome.htmWiltshire DoLS helpdesk team Tel: 01225 756598Wiltshire Fire and Rescue Tel: 0800 389 7849Website: www.wiltsfire.gov.ukWiltshire Good Neighbours Tel: 01380 732828Website: www.wiltsgn.org.uk/Wiltshire Police Tel: Emergencies - 999Non-emergencies - 101Website: www.wiltshire.police.ukWiltshire Young Carers - YouthAction WiltshireTel: 01380 729813Website: www.youthactionwiltshire.org49

Section 26 - Your notes………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………50

Your notes continued………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………51

Your notes continued………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………………………………………..…………………………………………………………52

Section 27 - Your useful contactsNameTelephonenumber/emailNotes53

Name Date/time Notes55

Name Date/time Notes56

Section 29 - How to make a complaint, comment or complimentWhen you become a carer you may come in to contact with a lot of differentorganisations. We hope that your experience will be a positive one, but thismay not always be the case.Organisations want to hear about what you think about their services, whetherit be good or bad, as it will help them to improve the way that they work andplan for the future.All organisations in Wiltshire should have a formal way to make complaints,comments or compliments. If you would like to make one of these, you cancontact the organisation directly (details in section 25).For some organisations in Wiltshire there are specific ways to make acomplaint, comment or compliment and these are listed below:OrganisationAdult Care,Wiltshire CouncilAvon andWiltshire MentalHealth PartnershipTrust (responsiblefor community andinpatient mentalhealth services)Contact detailsTel: 0300 456 0111Email: customeradvisors@wiltshire.gov.ukAddress: Department of Community Services,Wiltshire Council, Bythesea Road, Trowbridge, BA14 8JNTel:01249 468 261Email: complaints@awp.nhs.ukAddress: Complaints, AWP, Jenner House, Langley ParkIndustrial Estate, Chippenham, SN15 1GGNHS Wiltshire Tel: 0800 389 7671Email: pals@wiltshire.nhs.ukAddress: PALS Manager, Wiltshire Primary Care TrustSouthgate House, Pans Lane, Devizes, SN10 5EQRoyal UnitedHospitalGreat WesternHospitalSalisbury DistrictHospitalTel: 01225 821857Email: Complaints@ruh.nhs.ukAddress: PALS, RUH NHS TrustCombe Park, Bath, BA1 3NGTel: 01793 604031Email: pals.team@gwh.nhs.ukAddress: PALS Office, Great Western Hospitals NHSFoundation Trust, Great Western Hospital, MarlboroughRoad, Swindon SN3 6BBTel: 0800 374208Email: customercare@salisbury.nhs.ukAddress: The Chief Executive, Salisbury NHS FoundationTrust, Trust Offices, Salisbury District Hospital, SalisburyWiltshire SP2 8BJ57

OrganisationSouth WestAmbulanceServiceIndependentComplaintsAdvocacy Service(NHS complaintsonly)Contact detailsTel: 01392 261585Email: PALS@swast.nhs.ukAddress: PALS, South Western Ambulance Service NHSFoundation Trust, Abbey Court, Eagle Way, Exeter, DevonEX2 7HYTel: 0330 440 9002Website: www.seap.org.uk/icas58

Section 30 - What to do in an emergencyWiltshire Council Emergency Duty ServiceFor out-of-hours social care assistance.Tel: 0845 60 70 888GP Out-of-Hours Service (provided by Wiltshire Medical Services)Tel: 0300 111 5717NHS DirectFor 24 hour information and advice on health issues 365 days a year.Calls cost 5p from a BT landline and mobiles may be considerably more.Tel: 0845 4647Samaritans24 hour confidential and non judgemental telephone listening support.Tel: 08457 909090For hearing aid users tel: 08457 909192Wiltshire PoliceEmergency Calls 999Non-emergency calls 101Carers’ emergency cardThe carers’ emergency card will identify you as a carer in the event of anaccident or an emergency. It is the size of a credit card so it will fit in a walletor purse. Together with the card, a key ring is given that can be used for yourhouse or car keys. They are designed to give you peace of mind. You can beless anxious about going out and leaving the person you care for alone athome. If you have an accident or suddenly fall ill, the emergency servicesfinding the card will know you are a carer and be able to contact the 24 houremergency response service. The card is free and available to all carersin Wiltshire.Registering for a carers’ emergency card will automatically entitle you to aWiltshire Passport, which provides you with discounts and additional servicesfrom local businesses in Wiltshire.Contact details can be found in section 25.59

Emergency ContactsPlace this near your telephone or on your fridge door.Carers Emergency CardMy Carers Emergency Card Number is ……… Please call ………… andquote my number. (To find out more see section 5.)Emergency Details of Cared for PersonNameAddressPost codeTelephone numberEmergency contact detailsRemember in an emergency you should call 999 first.These are the people you know who should be contacted if there is anemergency.Details Person 1 Person 2NameRelationshipHome telephoneWork telephoneMobile telephoneList of prescribed medication per day for the person I care forName of medication Strength Quantity Times per dayAny other relevant or useful information, including any allergies60

Ref: 22378 CM. February 2013Information about Wiltshire Council services can be made available onrequest in other languages including BSL and formats such as large printand audio.Please contact the council by telephone 0300 456 0100, by textphone01225 712500, or email customerservices@wiltshire.gov.ukيمكن،‏ عند الطلب،‏ الحصول على معلومات حول خدمات مجلس بلدية ويلتشيروذلك بأشكال ‏(معلومات بخط عريض أو سماعية)‏ ولغاتمختلفة.‏ الرجاء الاتصال بمجلس البلدية على الرقم ٠٣٠٠٤٥٦٠١٠٠أو بالبريد الالكتروني على العنوان التالي:‏أو من خلال الاتصال النصي ‏(تيكست فون)‏ على الرقمcustomerservices@wiltshire.gov.uk(٠١٢٢٥) ٧١٢٥٠٠如 果 有 需 要 我 們 可 以 使 用 其 他 形 式 ( 例 如 : 大 字 體 版 本 或 者 錄 音 帶 ) 或 其 他 語 言 版 本 向 您 提 供 有 關威 爾 特 郡 政 務 會 各 項 服 務 的 資 訊 , 敬 請 與 政 務 會 聯 繫 , 電 話 :0300 456 0100, 文 本 電 話 :(01225)712500, 或 者 發 電 子 郵 件 至 :customerservices@wiltshire.gov.ukNa yczenie udostpniamy informacje na temat usług oferowanych przez władze samorzdowehrabstwa Wiltshire (Wiltshire Council) w innych formatach (takich jak duym drukiem lub w wersjiaudio) i w innych jzykach. Prosimy skontaktowa si z władzami samorzdowymi pod numeremtelefonu 0300 456 0100 lub telefonu tekstowego (01225) 712500 bd za porednictwem pocztyelektronicznej na adres: customerservices@wiltshire.gov.ukŽÓ 8SD’DW8 u B 5E Åf [“°×·