Going into hospital when you have dementia by Unforgettable.org

The Unforgettable Guide to

Going into hospital when you have dementia

Weâ&#x20AC;&#x2122;ve don e the researc h for you.

What you need to know to make a hospital stay easier for everyone Insider tips from people whoâ&#x20AC;&#x2122;ve been there too Step by step advice from experts and carers How to prepare, what to expect and how to manage

Contents Introduction

Chapter 1: Be prepared: what to bring into hospital

Chapter 2: Working out who is who

Chapter 3: Visiting

Chapter 4: Delirium

Chapter 5: Pain

Chapter 6: Mobility

Chapter 7: Distressed behaviour

Chapter 8: Discharge

Conclusion

Unforgettable.org 2018 All content and images are copyright of Unforgettable.org Content written by Danielle Wilde and edited by Kate Corr 2

Welcome from James Whilst caring for Mum I absolutely dreaded the thought of her going into hospital. But I also knew that it would probably happen, no matter how hard I tried to prevent it. When a hospital admission eventually became inevitable it was, as I’d feared, extremely difficult. For Mum, being in hospital was lonely and bewildering. She lay in bed grasping my favourite teddy which brought her so much comfort… and I found it almost impossible to leave her there. As a family, we were luckier than most. Mum was only admitted to hospital once and having a brother and sister who are both doctors definitely helped, but the experience still left its mark. Frankly, Mum was never the same again. So I will never forget watching a startling statistics presentation by Jilly Polson, Dementia Lead at Stirling University who explained how a hospital admission can lead to a stark and sometimes permanent deterioration in quality of life for someone with dementia. This was my experience with Mum. Could we have somehow stopped this happening? Could a hospital stay be made easier for a person with dementia? I’ve been driven ever since to find out. When I spoke to the amazing Danielle Wilde, Dementia Lead at the Royal Free Hospital London NHS Foundation Trust I was delighted to hear that she was overflowing with ways to make a hospital admission less stressful. I am incredibly grateful to her for sharing her wealth of knowledge in this essential and practical guide. I am also very grateful for our amazing panel of clinical experts, from GPs, Dementia and Delirium Clinical Nurse Specialists, Specialist Occupational Therapists as well as carers who have been through it for sharing their knowledge and tips. I have learned so much from this book that I wish I had known about when I was caring for Mum. I hope that the combined knowledge and experience of everyone who put this guide together can help you and your loved one. Remember you are doing a great job under difficult circumstances, and there are thousands of others on the dementia journey struggling with similar experiences. You are not alone.

James Ashwell, Founder, Unforgettable.org 3

About the Author Danielle is an Occupational Therapist with 10 years experience working in dementia care and neurology. In 2013, she led a Health Foundation project targeting length of stay and avoidable hospital admissions for patients with dementia. The project achieved excellent outcomes, has been reported in national and international journals and conferences, and has been cited as an example of best practice by NHS England and Healthwatch. Based on the outcomes of the project, Danielle developed a methodology for acute hospital dementia care, “CAPER”, which was shortlisted for two national awards in 2015. As Dementia Lead, Danielle has strategic, operational, clinical and educational responsibilities for one of the country’s largest foundation Trusts, Royal Free London, employing over 10,000 staff members.

We would also like to thank the following people for generously taking time out to review this book for us: •

Julia White, GP, Fairfield’s Practice Nottingham

•

Julia Jones, John’s Campaign

•

Elizabeth Willis, Dementia and Delirium Clinical Nurse Specialist, Guy’s and St Thomas’ NHS Foundation Trust

•

Nike Tella, Dementia and Delirium Clinical Nurse Specialist, Guy’s and St Thomas’ NHS Foundation Trust

•

Teresa Meldrum, Clinical Specialist Occupational Therapist, Guy’s and St Thomas’ NHS Foundation Trust

•

Harriet Tucker, Doctor at Kingston Hospital NHS Foundation Trust 4

Introduction No matter how well we care for a person living with dementia, there may come a time when they have to go into hospital. After all, people with dementia get ill just like everyone else and when they do, hospital is the place they need to be. But for many people on the dementia journey, a hospital stay is exceptionally difficult. Hospitals are scary places at the best of times and for someone who is already confused, they can be overwhelming. Dementia is a disability as well as an illness and, like any other disability, special arrangements need to be made if theyâ&#x20AC;&#x2122;re to have an equal chance of benefitting from hospital treatment in the same way as anyone else. However, research sadly reveals that when people with dementia are admitted to hospital, they tend to stay longer and experience worse outcomes than other adults of the same age and with the same illnesses, but without dementia. We know there are some great hospitals doing great work with people who have dementia, and that awareness of the condition is growing all the time. But you know the person you care about better than any hospital staff and your continued support and involvement in their care is crucial. In fact, it could be the key to their speedy recovery. So thatâ&#x20AC;&#x2122;s why Unforgettable has compiled this book to give you all the information you need at your fingertips, should a hospital stay become necessary. Chapter by chapter, we reveal what to expect from admission to discharge and explain some of the simple things you can do to make the person you care about feel more at ease and, ultimately, recover more quickly. We hope this guide will provide you with all the practical support you need so that their stay in hospital is easier to cope with, and that they return home safe and well. Remember, whether itâ&#x20AC;&#x2122;s an emergency or a pre-planned stay, preparation is the key; forewarned is forearmed.

Chapter 1: Be prepared: What to bring into hospital When a woman is 36 weeks pregnant, her treating team recommend she packs a bag which can be left by the front door in the event of an unplanned admission into hospital. Packing this bag with all the essential items and important information she might need, means that even in an emergency, her admission to hospital gets off to a good start, with both the person coming into hospital and the team in the hospital having the items and information they need to work effectively. A similar approach can be used when caring for a loved one with dementia; being ready for an unplanned hospital admission can avoid much stress, repetition and may ultimately, improve your loved one’s ability to settle into hospital, and have the resources they need to do well there. Although a person with dementia may seem well and a hospital admission may seem like a distant prospect, it’s still important to be prepared for an emergency or unplanned situation. Having dementia increases the likelihood of being admitted to hospital and hospital can often have a more detrimental effect on a person who has dementia than those who don’t. Like any journey, preparation is key and although an admission into hospital can happen in an unplanned way, having the right things prepared can make a big difference to how your loved one settles into hospital.

Your hospital bag checklist (8 items you should include) 1. The right information It may be helpful to have a file or folder that contains certain personal and medical information that can be shared to help the hospital team care for your loved one. You can use a prompt tool such as the free document produced by Alzheimer’s Society called “This is Me”. Alternatively, you can just write bullet points on paper making sure to include: • Your contact details (and a couple of others in case you can’t be reached). • Information about their dementia, and any other known medical conditions (for example, diabetes or arthritis) and allergies. • Medication usually taken and the dose and time it should be administered • If they wear glasses, dentures, hearing aids, and whether they need a walking stick or aid. • Information about the home environment (what type of property does the person live in, do they have stairs, who do they live with). • Information about the person’s usual abilities (how they walk, their usual daily routine, what tasks they can do for themselves and tasks they need help with). 6

• Information about the person’s support network (who provides support for them and what is the level of support provided, for example, a neighbour who picks up groceries or a paid carer who lives-in with them). • Individual information to help hospital staff get to know them person as a person rather than as a patient. Useful information includes their preferred name and first language, what job they used to have, what matters to them, as well as any tips for calming them down or engaging them in activities.

2. Clothes This might seem like a strange suggestion as usually when a patient is admitted onto a hospital ward they wear hospital gowns or pyjamas. However, staff and families are now starting to see the effect of people wearing pyjamas or gowns. As well as not supporting their privacy and dignity, wearing gowns and pyjamas can make a person feel less able and less well than they actually are. It can also cause a person to feel a loss of identity or self-expression and can increase the effects of institutionalisation. Key items should include; • Pyjamas or nightdress • Comfortable usual clothing including dressing gown • Bed socks, preferably non-slip to avoid potential falls • Trainers or closed-back slippers with a good grip • Cardigan or fleece jackets for warmth and comfort • Outfit for day of discharge, including outdoor coat and weather appropriate clothes and shoes 7

3. Dentures Dentures are expensive items and, sometimes, the family may prefer to store the dentures safely at home rather than risk them being lost in hospital. However, it’s important to note that whilst this does minimise the risk of them being lost and the associated stress and inconvenience, not having dentures in hospital causes its own set of challenges and stresses for the person living with dementia. These include problems eating, speaking and feeling less happy with their appearance. Don’t forget to include; • Dentures and denture pot labelled with the person’s name and date of birth • Denture brush and adhesive • Any specific instructions for use

TOP TIP “Usually there will be a change of ward, from the admission ward to a longer stay ward, so make sure items such as dentures, glasses and slippers are clearly labelled because they can easily get lost in transit.” Nike Tella, Dementia Nurse

4. Footwear Having the right footwear in hospital can make a big difference to how quickly and effectively the person gets back on their feet and is able to walk around the ward. Without their own footwear, a person with dementia might be asked to walk in bare feet, in special grip socks or in disposable slippers that might not fit them properly. We know how important it is to keep moving when you are in hospital, so anything that can help them to do that, and stay active, is essential. Don’t forget to include; • Socks to be worn with footwear • Warm bed socks • Trainers/ solid slippers for walking with a good grip

5. Glasses As we age, our eyesight deteriorates and many people rely more and more on glasses. Glasses can be an overlooked item when preparing for a hospital admission and the consequences can be serious. Not only can poor vision make a person more likely to fall or fear falling, but not 8

wearing prescribed glasses can also increase their chances of hallucinating or developing a delirium. Don’t forget to include; • Glasses • Glasses case (labelled with name and date of birth) • Cleaning cloth • Instructions for use (for example, for reading or all the time)

6. Hearing aids In the same way that vision can deteriorate over time, changes to a person’s hearing are also more common with age. If they usually rely on hearing aids then it is important that they have access to these in hospital. Being without hearing aids can cause communication difficulties between the person and the hospital staff and can cause them to feel withdrawn, disconnected and isolated. Don’t forget to include; • Hearing aids in a labelled box (left and right aids, labelled with their name and date of birth) • Instructions for use

Wash bag with familiar items

In hospital there are staff who are able to assist with all aspects of patient care as required. Although it is good to know that help is available when needed, it’s important to strike a balance between having help and maintaining independence. Where possible, people with dementia who are in hospital should be encouraged to do whatever they can for themselves as it is easy for them to become reliant on care and lose some of the skills (for example, washing and dressing) that they came into hospital with. Smart packing can increase a person’s ability to do more for themselves and maintain their own routine by utilising familiar objects rather than the unfamiliar items used in hospital. Don’t forget to include; • Comb and hair ties • Favourite soap or shower gel • Razor and shaving cream • Toothbrush • Deodorant • Perfume or aftershave • Make-up or other pampering items to promote well-being such as hand cream

8. Familiar objects A person with dementia may rely on familiar objects and items to prompt them about where they are and whether or not they feel safe. Strategic use of familiar objects in hospital can make an unfamiliar environment more recognisable to someone with dementia and reduce the likelihood of them feeling disorientated or distressed. The objects you choose will vary depending on their individual needs and wants, but might include: • A favourite blanket or cuddly toy • Something to fiddle with, e.g fiddle muff • Copies of meaningful photographs that staff can use to spark conversations • Newspapers, magazines or books • Music/ radio with headphones • Favourite game or activity, e.g knitting, colouring book

CASE STUDY When she went in to visit her mum this morning, Pat found Maria sitting on the bathroom floor having fallen in the night. Maria seemed confused and angry and wouldn’t let Pat help her up so she had to call an ambulance. Pat had made a grab bag a few months earlier when Maria had a heavy cold, so today she picked it up and took it to A&E. From the information in the grab bag, the staff immediately knew that Maria had dementia and were able to place her in a quiet room with Pat. Maria was shivering so Pat was able to dress her in the cardigan that she’d packed in the bag, and when Maria started to become anxious and wanted to go home, Pat was able to distract her by going into the bag again and getting out some old family photographs.

LEGAL STUFF 3 documents you should know about 1. Health and Welfare Lasting Power of Attorney (LPA) One of the best ways to prepare for a hospital stay is to make sure that your loved one has a Health and Welfare LPA (Lasting Power of Attorney) in place. This will ensure that their decisions about medical treatment and care are always taken into account, even if they are no longer able to express these views themselves.

2. Deprivation of Liberty Safeguards (DOLS ) There is a law in place to make sure that someone with dementia is always kept safe and gets the treatment they need and deserve. It’s called Deprivation of Liberty Safeguards (DOLS). If your loved one is put on a DOLS it means that, in exceptional circumstances, hospital staff might be able to intervene and give them treatment they don’t necessarily want, but which is in their best interests.

3. Do Not Resuscitate (DNR) This will be something doctors may discuss with the patient and their family. Do not be alarmed by this discussion. Some patients have strong wishes that, in the event of their death, they do not wish to be resuscitated. This means chest compressions and electric shock via defibrillator to the heart. Sometimes doctors feel it is in the best interest of their patient that this form is signed to stop unnecessary discomfort at the time of their death. This is usually a joint decision between the patient and the doctor. It is usually discussed on admission to hospital and can be changed at any time. If the patient cannot make this decision then family members are asked. This only affects what happens after the patient has died. It doesn’t affect any of their treatment during their hospital stay. Some people worry it means that antibiotics/fluids/ surgery will be withheld. It doesn’t. If you already have a DNR form, it’s important that you take it to hospital with you or put it in the hospital bag. You can’t assume that paramedics and hospital staff will know it exists.

Chapter 2 – Working out who is who When a person is admitted to hospital, they are cared for by a group of professionals collectively referred to as the “Multi-Disciplinary Team” (MDT) which means a group of people with different professional backgrounds bringing their expertise and specialist skills to work with the patient on a particular clinical issue. Carers are an essential part of the MDT so make sure that you introduce yourself to the relevant people and find a reliable line of communication. You may not be used to identifying yourself as a “carer” if you are a spouse, for instance, or a child. But it is a useful catch-all word that fits the system, so don’t feel awkward if it’s used.

TOP TIP “Most wards have a photo board of all the staff on the ward with their uniforms and their titles. This is generally located in a visible area of the ward. Some just have a uniform board which describes the different coloured uniforms.” Nike Tella, Dementia Nurse

Meeting so many people with slightly different clinical agendas can be bewildering for families who may lose track of all the professionals they are speaking to. They may feel as if they’re giving the same information to different people, over and over again.

TOP TIP “It is a good idea to carry a notebook with you to write things like this down. It’s often overwhelming when lots of different healthcare professionals tell you information. This is not only helpful for you but also for other family members.” Elizabeth Willis, Dementia Nurse

Whilst hospital and ward teams will vary between organisations and you may meet some of the professionals listed below and not others, it can be helpful to have a broad overview of who the different team members are and how they can help. 12

The people you might meet Doctors When a person is admitted to hospital they will be under the care of a Consultant which is a very senior doctor who takes ultimate responsibility for medical management of your loved one’s care. The consultant will usually have a team of junior doctors who will see the patient more frequently during daily “ward rounds”. A ward round is when the junior doctors, led by the consultant, do a review of their patients, checking test results and updating treatment plans for the day. Often the consultants will lead a weekly “multi-disciplinary meeting” (MDM) in which all the key members of the team discuss the progress of the patients and agree on care plans covering clinical treatment and discharge.

Nurses Nurses are responsible for the day to day running of the ward and delivering the daily care plans for the patients. They regularly monitor a patient’s vital signs to ensure they are recovering and that their care plan is the right one. Nurses are also responsible for administering medication and supporting patients with their personal care, eating and drinking. On any one ward, there may be several different types of nurses working at different levels. Here’s a selection; •

Staff nurse – is a general nurse working on the ward, this person will often be looking after a number of patients throughout their shift

•

Ward Sister – is the ward manager and nurse in charge. This is usually the best person to ask about discharge plans or any other issues that come up on the ward 13

•

Matron – is the ward sister’s manager and will generally cover a larger area (for example several wards) but can be on hand for specific problems or issues if these cannot be resolved by the ward sister

TOP TIP “Try to start up conversations with nursing assistants, as they are often the people who see the most and become the ‘patient’s voice’.” Clarissa O’Keefe, Dementia Trainer

•

Specialist nurses (eg dementia nurse) – specialist nurses cover a range of areas and will be the experts in that field. Your hospital may have a dementia nurse that you can contact to talk about your relative. Other specialities may also be involved depending on the reason for admission; for example cancer specialist nurses, respiratory specialist nurses, palliative care nurses, etc.

TOP TIP “Often a carer’s input can be very useful, for example in establishing a baseline, so it’s worth trying to find out when the OT is likely to come and if you can be there.” Julia Jones, John’s Campaign

Nursing Assistants The backbone of the ward, this is the staff group who will usually spend most one-to-one time with patients. They will help out with personal care and feeding, which makes them a really good source of information about how your loved one has been during their shift.

Occupational Therapist (OT) An OT assesses a person’s “functional ability” which means their ability to perform tasks ranging from going to the bathroom to making a cup of tea. They start by understanding a patient’s “baseline” which means their usual level of ability prior to admission into hospital. Assessing a patient’s abilities once they are in hospital allows the OT to compare their current level with their baseline. If there are any changes in functional ability, the OT can help to improve this using a mixture of adaptive aids and strategies. An OT might ask to see your loved one’s home environment, which is referred to as a home visit. This is an assessment of what the person’s needs might be once they return home. An OT should be able to provide you with equipment to improve independence at home and this may be provided on either a short-term or long-term basis. Examples of equipment include a raised toilet seat, grab rails or equipment to get in and out of the bath.

Physiotherapist (PT) A PT assesses a person’s ability to mobilise (walk) and transfer (move from one position to another, for example, sitting to standing). The PT takes information about their previous level of mobility and compares that to how they are currently mobilising. If they are not as mobile as they were prior to coming into hospital, the PT may provide a mobility aid (for example a walking stick or zimmer frame) and may prescribe exercises to improve strength and balance. PTs are often able to diagnose musculoskeletal problems by analysing a person’s walking pattern (known as a “gait”) as well as manage the risk factors that contribute to falls.

Speech and Language Therapist (SLT) A SLT works with difficulties that a person may experience in relation to their communication, or their swallowing during eating and drinking. As their dementia progresses, they may

TOP TIP “If your loved one has difficulty communicating, e.g. word finding problems, grammatical errors, slurring speech etc, these professionals can offer great support and help to ensure that you both understand each other better.” Karissa, Guys and St Thomas

experience difficulties with their communication such as word-finding difficulties or developing slurred speech. SLT’s can assess and diagnose a communication difficulty and may be able to advise on strategies for making communication simpler, or create ways to enable a patient to express themselves in an alternative way such as using pictures or gestures. Some people with dementia develop problems with chewing or swallowing as their dementia progresses. The SLT is able to assess their swallowing and may prescribe a modified diet consisting of foods of differing textures. Pureed or easy chew diets can encourage them to swallow what is in their mouth safely whilst still enjoying the taste of food.

TOP TIP “It’s really useful to glean as much expert advice as possible while the person with dementia is in hospital. Keep writing things down in your trusty notebook and considering how they might work in the home situation.” Julia Jones, John’s Campaign

Dietitian As a person’s dementia progresses, they may experience changes to their appetite, their attitude towards food and drink and even changes in preferences that they may have always had. People may find remembering to feed themselves or the actual act of feeding more complicated and, as a result, malnourishment and weight loss are a common problem in people with advancing dementia. A dietitian is an expert in food and nutrition and the ward staff may ask them for advice to establish whether a patient’s diet can be altered to minimise the risk of malnourishment and ensure that they are getting as many calories and vitamins as possible. This may involve reviewing the types of meals they eat and how often, or it might involve prescribing supplement shakes or juices. 16

Ward Clerk The ward clerk is the â&#x20AC;&#x2DC;front of houseâ&#x20AC;&#x2122; member of staff on the ward. Their duties vary but generally they will be the team member who answers the phone, sends out letters and books transport for patients who are being discharged. Ward clerks also ensure that the patientâ&#x20AC;&#x2122;s discharge summary (a letter detailing the events of the admission including the diagnosis, medication and follow-up plans) is sent to the GP and that a copy also goes home with the patient.

Housekeeper The housekeeper manages the day to day logistics of the ward including stock levels and food and drink. Often the housekeeper will be responsible for helping patients order their food from the menu and serving tea and coffee, so they may be a good person to tell about any food/ drink preferences or eating habits.

Domestics Domestics keep the ward clean and tidy and often spend a large part of their shift in the same areas as patients. This means that even though they are not clinical staff, they do spend a lot of time face to face with patients and can sometimes pick up on things that other team members may have missed.

Others The following are team members who may or may not be employed in your local hospital. The best way to find out if your hospital has any of the staff below is to ask the ward sister or check the hospital website or the PALS department.

Dementia Lead Most hospitals have a named senior dementia lead but the roles and duties of these leads vary. In some organisations, the dementia lead is a Consultant who runs their own team but who has agreed to take on the title dementia lead. This person may or may not carry a caseload of patients or get involved with carers. In some organisations, there is a wellestablished dementia lead, usually a nurse or a therapist, who acts as a specialist within that organisation. These individuals often carry a caseload of patients either directly or in an advisory role and they are often able to support and signpost carers or family members. Sometimes dementia leads are part of a larger dementia team or they may be in a stand alone role. Your ward sister will be able to tell you about what is available for you (activity boxes, for instance, or special visiting arrangements).

Carer support worker Some hospitals offer an in-reach service from community carer support groups in the local area. These support workers specialise in assessing the needs of and advocating for people 17

who provide a caring role. They may be able to meet with you and talk about your caring role and the impact it has on you, and they can often help develop a strategy for ensuring that your needs are supported too. Carer support workers usually operate from the community and run activities such as coffee mornings, support groups and sometimes educational sessions. To learn whether or not your hospital has a carer support worker, ask your ward sister. If the hospital doesnâ&#x20AC;&#x2122;t have a service in-house, ask the ward sister for details of the community branch where you will be able to self-refer.

Discharge planner Some hospitals have a discharge planning team who coordinate the discharges on a particular ward. This person may be a nurse or a therapist or sometimes they have a nonclinical background. It is important to know who is responsible for planning your loved oneâ&#x20AC;&#x2122;s discharge as carer involvement is crucial in planning a safe and timely discharge from hospital. If there is no discharge team in the hospital, it may be a nurse or a therapist who is leading the discharge process. Your ward sister will have oversight of all discharges and any ongoing issues so make sure you ask the ward sister who you should be speaking to about planning the discharge together.

CASE STUDY Having been diagnosed with a broken wrist, Maria has been moved to an elderly care ward. When Pat comes to visit she is shocked by how small and frail Maria looks in the hospital bed. Pat has had several phone calls asking about Maria’s home circumstances but nobody can tell her what’s going on. Today, she knocks on the ward sister’s door and sits down with Sister Burns. Sister Burns explains that the doctors still haven’t decided whether or not Maria will need an operation or whether they will put a cast on her wrist. She tells Pat that the team will have a meeting tomorrow to discuss it and then she will let Pat know the outcome. Sister Burns tells Pat that Maria has been angry with the doctors on their morning rounds and that she hasn’t allowed them to inspect her wrist. Pat explains that Maria is not a morning person and probably feels embarrassed to have visitors so early, especially if she hasn’t had a chance to do her hair yet. Sister Burns writes everything down and thanks Pat for the information.

And what about YOU? Accept that this feels uncomfortable for you too. You are also in an unfamiliar environment and just as people with dementia rely on daily routine to feel calm and in control, perhaps you do as well. The disruption caused by their hospital admission can cause unexpected difficulties for you so be prepared.

Chapter 3: Visiting Patients can feel confused and frightened when they are in hospital. Visiting regularly can help keep them orientated and maintain their well-being whilst they are there. Family carers are an enormous help to hospital staff and you should always be made to feel welcome by the team treating your loved one. After all, you are the person who knows them best and your experience, knowledge and participation is a crucial part of delivering good treatment and planning safe discharge for the person with dementia.

TOP TIP “If the person with dementia has other family or friends, it can be useful to agree an informal rota of visits so that when other people are going to visit, you can have time off.” Julia Jones, John’s Campaign

But what should we talk about? It is very common for people with dementia to appear significantly more confused when they are in hospital compared to how they usually are at home. This can happen for lots of reasons ranging from delirium to changes in medication to just being in an unfamiliar environment. Seeing your loved one in hospital and finding them to be more confused can be really scary and upsetting. They might say or think things that are untrue or they might think that they are somewhere other than a hospital. This can put carers in a difficult position and it’s sometimes unclear what is the right thing to do; should you correct them or should you go along with it? Being prepared for unusual conversations allows you to give the person with dementia the reassurance that they are looking for but avoids the risk of arguing about their current version of reality. • Don’t argue, reassure It’s a real skill to know when you should go along with something and when you should correct, and that skill gets more precise with practice. If a person with dementia tells you they came into hospital this morning, there may not be much to be gained from saying, “well actually you’ve been here for 6 days”. If however, they tell you that they are in their own home and they seem really frightened that all of these staff and patients have somehow got into their property, that might be an opportunity to say, “we’re in hospital now, you’ve been here for the past couple of days”. If they disagree with you and say, “no I AM at home” then maybe start a new conversation about home. You might say something like, “remember when you first moved in, we were so young weren’t we?” Try to remember it’s more important for them to feel reassured and safe, than to be factually correct.

• Acknowledge their emotions Sometimes patients with dementia internalise their anxiety and fear during the day and when a family member visits it gives them a chance to get it all out. Unfortunately, this can mean that anger and frustration can end up being directed at you when you visit which can often feel really unfair. Try to allow them that outlet without taking it personally.

TOP TIP “You might want to warn less regular visitors about possible additional levels of confusion: you might also like to ask them to do simple practical tests like prompting the patient to keep drinking.” Julia Jones, John’s Campaign

• Stick to familiar topics In hospital, a person with dementia is often bombarded with questions that they cannot answer. Their autonomy and independence are further undermined by finding themselves in an unfamiliar environment that is difficult to navigate, both physically and cognitively. Talking about familiar topics and happy memories from the past helps them to feel more in control and connected. You may have heard these stories hundreds of times, but the pleasure and the benefits are in the telling. • Use props If all else fails, don’t be afraid to use props to spark conversation or capture attention. Bringing in a newspaper or magazine can trigger a familiar routine and give you plenty to talk about, even if you’re only looking at the pictures. If that’s too much, reading to the person can still create a special moment between you. Photographs are another great way to help them feel connected and talk about themselves and their life. Remember that the emphasis here isn’t on you providing entertainment but on finding the right vehicle or topic for them to find self-expression. Sometimes just sitting quietly beside them as they nap is enough. • Stay calm – It’s easy to say, but it’s really important that you try to keep calm and focused whilst visiting your loved one in hospital. Not only will this make your life easier, but it will also make your interactions with them easier. People with dementia can be astute at interpreting and responding to body language, so if you visit them when stressed, angry or upset, they’re likely to pick it up. This can have a negative effect on them as they are already feeling vulnerable and nervous and will be looking to you for reassurance and positivity. Going off the ward to clear your head or restricting how long you spend on the ward in times of high tension can be useful coping strategies. 22

TOP TIP “If there is nobody else to share visiting responsibilities with, consider talking to the ward sister about whether they have a volunteer visiting service. If they do, this person could offer some companionship and conversation to your loved one to take some of the pressure off you. The patient might enjoy a change of face as well.” Julia Jones, John’s Campaign

CASE STUDY Worried that the doctors haven’t been able to see Maria properly, Pat visits the ward one morning to help get her ready before the ward round. When she arrives at the ward she notices a large sign on the door saying; “Visiting time strictly between 2 and 6pm – Sister Burns”. Pat walks onto the ward and is stopped by a nurse and told that she is not allowed onto the ward. Pat can hear her mother screaming and pops her head into the room on the way out. Sister Burns and two doctors are around her and when she sees Pat walk in, Sister Burns says, “oh look this is her daughter – maybe she can help”. Pat calms Maria down and the doctors examine her properly. Afterwards, Pat asks Sister Burns if her ward is part of John’s Campaign. Pat explains to her what the campaign is about and Sister Burns says that it sounds like a fantastic idea.

And what about YOU? Most carers would rather put the needs of the person with dementia before their own and whilst this is admirable, it isn’t always the best idea. Looking after your own health and well-being is one of the most useful things you can do to support the person with dementia and sometimes that might mean taking some time off or away from the hospital. Taking time out for yourself is not selfish, it is an investment in your ability to keep doing your caring role as well as you are.

John’s Campaign John’s Campaign is a movement founded by Nicci Gerrard and Julia Jones following the death of Nicci’s father, Dr John Gerrard in November 2014. Earlier that year, John, who had a diagnosis of Alzheimer’s disease, was admitted into hospital with an infection of his leg ulcers. John had been happy and independent at home and was cared for and supported by a rotation of loving family members. When he was admitted into hospital, the family found that the ward John was admitted to had a very strict visiting policy and for most of the day, they were not allowed to see him. John, who was used to having family around him all the time, became increasingly distressed, agitated and his abilities deteriorated significantly. Five weeks after being admitted, John was discharged home a shadow of his former self and Nicci strongly believes that this deterioration would have been avoidable had the family been permitted to spend their days with him; supporting and encouraging him as well as keeping him connected to the world. A generation ago, if a child was admitted into hospital, their parents would only be able to see them during visiting hours. This situation is unthinkable now and children’s wards are equipped to accommodate parents of sick children as well as the children themselves. Essentially, John’s Campaign seeks to secure the same rights for carers of people living with dementia as the rights we give the parents of sick children. Since its launch almost three years ago, John’s Campaign has received overwhelming support from carers, politicians, hospital staff and institutions. Over 400 hospital wards and other organisations have pledged their support to the campaign, which in practice means that carers of people with dementia have open access visiting and are actively welcomed onto the ward as partners in care.

It’s important to remember that open visiting is a right, not an obligation. Some family members use the admission into hospital of a loved one as an informal period of respite. If the person has been experiencing worsening health in the days and weeks prior to admission, then the carer is likely to have been under increased stress and pressure, which may mean that they need some time to recover and recharge. Only you know what is right for you and your loved one, but being open and honest with the ward about your needs and the needs of the person can foster a relationship of mutual understanding and trust. Some hospitals have extended their pledge to support carers beyond the abolition of visiting times. Many hospitals have special offers for carers of people living with dementia, which may include reduced or free parking, food and risk concessions and some overnight facilities for sleeping. To find out about what you can access and whether your local hospital and ward has signed up to John’s Campaign visit the website at johnscampaign.org.uk

Chapter 4: Delirium What is delirium? Delirium is a term we use to describe a sudden onset of confusion. Delirium is very common, with 15% of people in hospital experiencing it at any one time. Having dementia increases the likelihood of developing delirium but this condition can affect anybody, regardless of age or medical history. Delirium can often be overlooked when a person has dementia because the hospital team may not know what level of confusion is normal for them. It is really important that the team receives clear and accurate information from you so that they can identify and investigate any sudden changes in behaviour or memory that may indicate an underlying delirium.

TOP TIP â&#x20AC;&#x153;If your loved one has experienced delirium before it would be worth mentioning this to the medical team so that they can look out for early signs.â&#x20AC;? Dr Julia White, GP

What does delirium look like? There are two types of delirium; hyperactive delirium and hypoactive delirium. A person may have either hypo or hyperactive delirium or they may have a combination of both.

1. Hyperactive delirium The person may appear more agitated or emotional. Their memory may be worse than usual and their speech may seem muddled. With this type of delirium, they can often seem frightened or angry and may experience hallucinations or hold paranoid or persecutory beliefs (for example that they are in prison or that somebody is poisoning their food). In hyperactive delirium, they may appear to have endless amounts of energy and may need very little or no sleep.

2. Hypoactive delirium The person may appear more lethargic or withdrawn than usual. They may find it difficult to concentrate or focus on the thread of conversation when they are talking or when you are talking to them. With this type of delirium, your loved one can often seem very withdrawn or depressed. In hypoactive delirium, they may appear to have no energy and may spend most of the day and night sleeping. Although this type of delirium is much more common, it is also harder to spot. Common causes of delirium include; • • • • • • •

An acute infection (commonly urine or chest infection) Constipation Pain Post-surgery Medication Dehydration Change in environment

What can you do to help? It’s really important to identify what has caused the delirium so that the underlying cause can then be treated. For example, a urine infection that has caused a delirium. The delirium will not improve until the infection has been treated with antibiotics. When the underlying cause is addressed and resolved, delirium can improve in days or weeks. For a person with dementia, it can take longer for the delirium to resolve. People who have recovered from delirium can often experience frightening or upsetting memories of how it felt to be delirious.

TOP TIP “Dehydration can contribute to delirium or other delirium causing conditions such as constipation. Prompting the person to regular take sips of water is a simple way that any visitor can help.” Julia Jones, John’s Campaign

Communicate If your loved one seems suddenly more confused, paranoid or lethargic whilst in hospital, ensure that the doctors and nurses are aware of it. This should prompt them to “Think Delirium” and investigate whether there is an underlying cause. The quicker they have this information, the quicker the delirium can be addressed.

Understand It can be scary and upsetting to see a dramatic change in how a loved one thinks or behaves. Delirium can cause a person to behave in a very challenging way that is out of character for them. Keep in mind that they are acutely unwell, and that given the right treatment, this should significantly improve.

Visit It is tempting to tell family or friends not to visit when a loved one is delirious. You may feel as though you make things worse when you’re there or it may feel uncomfortable and distressing to see somebody experience delirium. Only you know what is right for you, but generally speaking, having familiar people visit and spend time with the person you love helps them to feel safe and less anxious in an unfamiliar environment like a hospital.

Did you know? Some hospitals have leaflets explaining about delirium which you could give to other family and friends who might visit. TOP TIP “If you have time, try to talk to other friends and relatives about what happened when they visited. It can be very helpful to compare observations and share what hasn’t gone well.” Julia Jones, John’s Campaign

Reassure and re-orientate People with delirium often fluctuate between moments of lucidity and confusion. Vivid dreams and strange ideas can sometimes make a person feel that they are going mad. Reassure them that they are safe and in hospital. Remind them of where they are, why they are there and that they are a bit mixed up at the moment. Perhaps you could bring them a clock or a watch to tell them what time or day it is. Try not to argue or contradict any mistaken beliefs they may have; if necessary change the subject and stick to comforting, familiar topics.

TOP TIP “Sometimes less is more, as often people with dementia get fatigued by too much chat! Mirror body language and smile and nod reassuringly not patronisingly.” Clarissa O’Keefe, Dementia Trainer

CASE STUDY The team has decided Maria won’t need an operation and that a simple cast will suffice, which Pat is really relieved about. Maria tolerates the cast well and appears more settled on the ward now that Pat is able to visit her in the mornings. One day Pat comes to visit and Maria is much more sleepy than usual and can only keep her eyes open for a few minutes. After lunch, she suddenly wakes up and starts talking about a baby that she can hear crying in the other room. Maria seems to think that she is in her old house and swears at Pat when she tries to correct her, something that she would never usually do. Pat speaks to Sister Burns about this, who tells her that Maria may have a delirium. The doctors find no sign of infection but Maria’s confusion gets worse and worse. Sister Burns explains that lots of things other than an infection can cause delirium and says she will get to the bottom of it.

And what about YOU? Try not to let your life become dominated by the hospital. Although having a loved one in hospital is a pressured and significant time, you may also have work commitments or other family responsibilities that you don’t want to neglect – and the person you care about wouldn’t want you to either. 29

Chapter 5: Pain Pain in people living with dementia is often an under-reported and undertreated problem in hospital. Untreated pain may be missed by hospital staff because dementia patients aren’t able to describe or report their pain in the same way that you and I can. Responses to pain may take emotional or behavioural forms such as anxiety, tearfulness or irritability which can be misinterpreted as a symptom of dementia by staff who don’t understand the person. Unmanaged pain can cause a number of problems for someone with dementia and those looking after them. Pain is a leading cause of delirium and is thought to be responsible for a large proportion of “distressed behaviours” including anger, aggression and restlessness. Pain can change the way that a person communicates, interacts and participates in life on the ward, which can impact their recovery.

Why does this happen? As a person’s dementia progresses, they may lose some of the skills they may have previously relied on to identify and report pain. Changes to their memory, communication skills and problem-solving may make it less likely that they can understand what their pain is and formulate a plan to have the pain treated. This means that often, people with dementia have to rely on the expertise of those around them to be able to spot that they are in pain and provide the appropriate treatment. Unfortunately, lots of the changes pain can cause also resemble some of the symptoms of dementia. In order for the nurses to administer pain relief to the patient, these drugs have to have been prescribed by the doctors on the ward. It is very common for patients with dementia to be prescribed for pain relief “PRN” which is an abbreviation of a latin phrase meaning “as required”. This type of pain management plan makes doctors feel they have prescribed the right pain relief. However, because it relies on the patient asking for pain relief it is often not an appropriate strategy for those with dementia as they lose the ability to recognise pain and ask for pain relief.

How to spot pain in somebody with dementia When trying to detect pain in someone with dementia it is often useful to look out for nonverbal signs and clues. This means that if a person experiences pain but has lost the ability to tell you or to problem-solve a treatment, they are still able to have their pain managed in an efficient and appropriate way. As the person who knows your loved one best, you are in a really useful position to be able to spot whether there are any changes to the way they seem or are behaving. 30

Signs to look out for include: Sounds Although a person may not be able to directly tell you that they are experiencing pain, they could be making some sounds and noises that suggest pain is present. Examples of sounds include crying, shouting, screaming, sighing, shallow or laboured breathing or any other sound that is unusual for them. Perhaps theyâ&#x20AC;&#x2122;re speaking at a volume or pace that is unusual for them or they may appear more repetitive or muddled than normal.

Facial expression Knowing how your loved one looks when they are relaxed makes it much easier for you to be able to spot when they look tense, uncomfortable or in pain. Whilst facial signs of discomfort will vary according to the individual, there are some common things to look out for including frowning, a furrowed brow, tense jaw, downturned mouth or grimace.

Body language The presence of pain may cause a personâ&#x20AC;&#x2122;s body language to change. They may cradle or nurse a part of their body or they may attempt to guard or protect a part of their body. You may notice changes in the way they sit, walk or hold themselves. They may appear more rigid and tense or they may develop a repetitive movement pattern, for example, tapping the hands or fiddling with buttons.

Behavioural changes Changes in behaviour, routine and the way that they interact with others can all be signs of untreated pain. A person who is usually relaxed and chatty may suddenly appear irritable and 31

distant or somebody who is usually very active may want to stay in bed all day. Pain can cause people to lose interest in food and some may have difficulty sleeping. Pain is also responsible for some of the “distressed behaviours” people with dementia can experience, for example, aggression, swearing and agitation. It is important to remember that these behaviours are usually caused by underlying problems, untreated pain being a very common one.

Pain causing conditions As most people get older, they develop a number of long-term conditions of which dementia may be one. It’s important to remember that dementia doesn’t travel alone, and the person’s other conditions may also be causing pain and need to be treated and managed. Arthritic diseases as well as age-related damage to joints, bones and muscle cause general aches and pains as well as more acute pain. There are likely to be instances where pain is present for reasons that are not immediately obvious. For example, if a person has had a fall, they are likely to experience pain even if they have no visible injuries. Similarly, if they are usually very active and are now spending a lot of time in bed or sitting down, this can cause significant musculoskeletal pain. Oral and gum pain is common in people with dementia and if your loved one has lost weight, or if they have not been brushing their teeth regularly whilst in hospital, denture pain, cavities and other problems in the mouth can be very uncomfortable.

What if I spot any of the above signs? Report it If you see one or more of the above non-verbal indicators of pain, it’s really important that you are able to share that information with the medical team who won’t know your loved one as well as you. It’s important that you take note of what signs are present as you will know what to look out for in the future. Similarly, the hospital team can learn these signals and may be better at spotting pain in the future if they know what individual signs the person with dementia shows.

Discuss treatment plan Once the presence of pain is established, it is important to discuss pain management options with the medical team caring for them. Many people find that administering a painkiller regularly on a four-hourly basis is the best way to keep on top of pain. The medical team will be able to advise you on what the right choice for pain relief is, mindfully avoiding medication that may make your loved one feel more confused or become constipated. For people with dementia who do not like taking pills or who take them irregularly, it may make sense to think about a different way of getting pain relief to them. For example, we have found that a pain relieving patch (where the medicine is slowly released through the skin over a steady period of time) can deliver good pain relief in a minimally intrusive way. 32

Calm and distract Studies have shown that the subjective experience of pain is worse for people who are lonely, bored or worried. This means that once an appropriate pain management plan is in place, there are lots of other things that you can do for your loved one to make their experience of the pain improve. Regular visits, meaningful activities and chats about familiar topics can help distract them from any unpleasant feelings or sensations. Giving them something to do can help them find pleasure elsewhere and provide a distraction from the pain. If your loved one is spending more time in bed or a chair than usual, you may be able to ask the ward physiotherapist whether they can prescribe any gentle exercises for them which you can practice together.

TOP TIP â&#x20AC;&#x153;Sympathy (and cuddles) rarely go amissâ&#x20AC;? Julia Jones, Johnâ&#x20AC;&#x2122;s Campaign

CASE STUDY One morning, Pat comes onto the ward and can hear her mother shouting from down the corridor. She rushes into her room to see that Maria has pulled the cast off her wrist and is walking around holding carrier bags full of clothes and toiletries, saying that she wants to leave. Gemma, the nursing assistant looking after her, says that she has been like this all night and hasn’t slept. They sit Maria down and Pat starts to calm her whilst Gemma looks at her charts. Maria is restless and pulls at her nightie repeatedly. Pat tries to put an arm around her and she pulls away, face and shoulders tense and rigid. Gemma says she thinks it could be the pain. Even though Maria is prescribed paracetamol PRN, she has never asked for them so she’s had no pain relief. Pat asks Maria if she is in pain and she says no. Gemma speaks to the doctors and they prescribe a stronger drug to be administered every four hours. Half an hour after taking it, Maria is much more settled and is able to have her cast put back on. Pat says that if her mother is every as distressed as this again, would they please call her and she will try to come and see her. The hospital reassures here that they can cope but they will respect her wishes.

And what about YOU? Don’t underestimate how difficult this experience might be for you, particularly if the person you love seems to be in pain. You’re likely to be feeling worried, upset and out of control. Even if you manage to put on a brave face, you could still be feeling very anxious about your loved one’s health, their future and the circumstances that brought them into hospital in the first place. If you can, confide in a friend you trust, someone who is prepared to just listen while you off load. Or you could try writing down how you’re feeling. Sometimes keeping a journal and putting all your worries and fears down on paper can really help.

Chapter 6: Mobility Mobility refers to the way a person is able to move around, usually by walking, but mobility can also describe a person’s ability to use a wheelchair or other assistive equipment. A key part of mobility is what we refer to as “transfers”; this refers to the process by which we move from one position into another, for example, from lying to sitting or from sitting to standing. Mobility is a key component of how the team in hospital will assess your loved one’s independence and progress. Mobility in hospital It is very common for someone with dementia to experience problems with their mobility as a result of illness or accident. Infections, falls and other causes of hospital admissions take their toll on a person’s health and well-being, which can easily translate into a significant deterioration of their physical abilities. People who are unwell are less likely to be active and, for people over the age of 80, ten days in bed can age muscles by ten years. Inactivity in hospital can also contribute towards other health problems such as skin integrity (making it more likely that they will develop a pressure sore), circulation and breathing problems. The hospital environment itself can cause additional difficulties for people living with dementia and they are often at the highest risk of hospital related deterioration or “deconditioning syndrome” as it is sometimes known. The noise, layout and poor signage of many hospital wards can cause some people to become more reliant on help when completing the daily activities they were able to do for themselves prior to admission, such as using the toilet, washing and dressing. Hospital wards focus a great deal on the issue of falling and the “falls risk” posed by allowing patients to be up and mobile. Whilst fall prevention work is fundamental to a safe ward, sometimes this fear of patient falls can have an unintended effect on the person themselves and a “risk-averse” approach may end up creating more dependence. For example, if a ward nurse is worried that they may fall, they might encourage them to stay in bed or remain sitting rather than practising their walking. This has profound consequences for a frail older person and can sometimes be the difference between dependence and independence. The good news is that there is an increasing awareness of the consequences of inactivity amongst older patients and many hospitals now run initiatives to get them up and moving around on their wards.

Here are 4 ways you can help them 1. Work with the right professionals A number of professionals are likely to be involved with assessing and practising your loved one’s mobility; physiotherapists, occupational therapists, nurses and nursing assistants to name a few. Your involvement, and support at an early stage can help them gather the right information to make the best clinical decisions. Helping the team understand what level of mobility is normal for your loved one and what equipment and/or techniques they are used to (for example a person may use a raised toilet seat to help them stand up from the toilet or they may “furniture walk”, which is a technique where people walk around a space using furniture to support them). The physiotherapist may be able to provide you and your loved one with some gentle exercises that can be practised in bed or on a chair. If the ward team is happy that their fall risk is low, they may allow you to practice walking with them when you visit, but it’s important to discuss this with the team beforehand.

2. The right equipment The physiotherapist may have prescribed a piece of equipment for your loved one to use to promote independence and safety. This equipment may be a walking stick, a zimmer frame, crutches or something else and it’s important that you understand how it should be used so that you can encourage the person you care for to use it when walking. In addition to prescribed equipment, there are items that you can bring in to improve their ability to mobilise independently; well-fitting slippers or trainers, glasses and hearing aids. Some wards like to encourage patients to wear their own clothes so if you do bring these in they should be warm, breathable and non-restrictive garments.

3. Help make walking a part of the normal daily routine Walking should not just be a specialist task that only the physiotherapist does with the patient, walking should be a regular part of life on the ward and a normal part of completing other tasks if appropriate. The best strengthening exercises are performed as part of a personâ&#x20AC;&#x2122;s usual daily tasks, for example, standing at the sink to brush their teeth or walking to the bathroom to use the toilet rather than having a commode wheeled to their bedside. Being up and mobile has a number of positive effects, such as helping build appetite and reducing the risk of constipation. If your loved one is unable to walk, ensuring that they are sitting up in a chair rather than lying in a bed where possible can still be of benefit.

4. Help keep them active and engaged When a person with dementia is in hospital and is potentially anxious and frightened by their disorientating new surroundings and routine, it can sometimes be hard for the staff to successfully engage them in an activity such as walking. This difficulty in engaging patients can happen for a variety of reasons; maybe they canâ&#x20AC;&#x2122;t understand what they are being asked to do or why or maybe they are frightened of falling and feel safer in bed. In this scenario you could really help staff by explaining the best ways to reassure and motivate the person you love,so that they feel more inclined to get up and walk. Sharing information about their interests, routine and personality can help the staff build a relationship with the person you care about, which can improve how they work together.

Did you know? Reduced mobility and infection puts patients at risk of blood clots. Their doctor may suggest a daily injection to help prevent blood clots from occurring whilst they are in hospital. Increasing their mobility will reduce these risks, even simple movements such as pointing and bending their ankles when sitting down or lying in the bed can help.

CASE STUDY Although Maria’s fracture is healing well, the medical team is worried that her mobility is much worse than it was before the fall. Pat meets with the Physiotherapist who tells her that Maria is not always willing to practice her walking. Pat joins the Physio for a session with Maria and notices Maria seems scared and embarrassed. Pat wonders whether Maria feels self-conscious in the hospital gown in case it opens at the back. She agrees with Sister Burns that she can bring in Maria’s tracksuit bottoms and trainers. Pat tells the Physio that Maria used to love the armchair exercise class at the day centre so starting with some chair exercises might help Maria understand what she is doing. The Physio gives her exercises, which Pat and Maria do together. Her confidence increases and she starts to make progress with her mobility.

And what about YOU? Don’t forget to take care of yourself. Perhaps you might decide to meet up with friends, catch up with your favourite television programme or take a long hot bath. Remember, taking time out for yourself is not selfish...it’s essential.

Chapter 7: Distressed behaviour Nobody likes being admitted to hospital. If you have dementia, hospital can be an even more confusing, noisy, hectic place to be. In addition to feeling unwell, we take people who rely on their familiar surroundings and support network and put them in the middle of a busy ward, surrounded by busy staff and frail patients and we begin to exercise control over every part of their lives. Dementia impacts a person’s ability to adapt to new situations and as a result, patients can feel overwhelmed by these new circumstances and become frightened and agitated. Changes to behaviour, especially those that seem out of character for the person we care about, can be extremely difficult for relatives, friends and carers to manage. Although changes to behaviour can be a part of some advancing dementias, many people living with dementia can experience or exhibit distressed behaviour at times, especially when in a hospital environment.

Examples of distressed behaviours include: • Shouting • Agitation • Aggression • Paranoia • Anxiety • Repetitive questions or actions • Wandering • Sadness including tearfulness Healthcare professionals sometimes refer to this as “challenging behaviour” but critics of this term argue that calling behaviour “challenging” implies that the things people with dementia do and say are a “problem” that we have to deal with. It’s much more helpful to think of these behaviours as a way of communicating distress. This should prompt us to try to understand the meaning behind the behaviour and find out how best to help. Changes to behaviour, especially those that seem out of character for the person we care about, can be extremely difficult for relatives, friends and carers to deal with. A diagnosis of dementia can cast a shadow over their life and we begin to interpret everything they say, do and feel as symptoms of a medical problem. It’s easy to forget that people with dementia are individuals who have personalities, opinions, passions and eccentricities just like everybody else.

What causes distressed behaviour? When you or I feel upset or frustrated, there are many things we can do to manage our emotions. We all use coping strategies without even realising we are doing so; for example if you’re feeling angry you might go for a walk to clear your head; if you are in pain you might take a painkiller and if you are worried you might call a loved one and talk things over or put on the TV as a distraction. Having dementia doesn’t change the way that you experience life’s difficulties and emotions. What dementia can affect the ability to think of coping strategies and to carry them out. For example, how can you go for a walk to clear their head if you can’t get out of their chair without assistance? How can you relieve their pain if they can’t work out what this horrible sensation that you are feeling means? How can you talk through their worries with a loved one if you can no longer articulate your thoughts and feelings? Dementia changes a person’s ability to communicate as well as their ability to reason (think things through) and problem-solve. This causes a great deal of frustration and stress for the person living with dementia, which can also be difficult for the people around them too. More often than not, “challenging behaviour” such as anger and agitation is the result of the person with dementia feeling misunderstood or unheard. Without their usual coping strategies, people with dementia search for alternative forms of expression and often this expression takes the form of behaviour. For example, if Mr Robinson has a bad headache, his dementia may prevent him from being able to resolve this by understanding his head is painful and would benefit from taking a painkiller and then lying in a dark and quiet room. Frustrated, these circumstances may cause him to become angry and tearful and when asked what is wrong he may shout or become quiet. If the message that we take away from this is just that Mr Robinson is angry, we miss the communication in his 40

behaviour and therefore the opportunity to help him.

Common messages hidden within distressed behaviour include; Pain – Research shows that people living with dementia are less likely to be offered or receive adequate pain relief than people who don’t have dementia. This isn’t because people with dementia experience pain differently to us, but it might be that they find it difficult to recognise pain, locate it to a part of their body and report it to a doctor or loved one. Delirium – Delirium is a sudden state of increased confusion usually caused by an underlying factor such as infection, pain, constipation or dehydration. A person exhibiting signs of delirium may experience changes in their behaviour that can be difficult to manage. Understanding and recognising these behaviours help carers identify a delirium and ensure that underlying causes are identified and treated. (see Chapter 4 for more information) Boredom – Most people living with dementia will have had a lifetime of roles and responsibilities, as part of a family and a community, as well as professionally. These roles and the tasks we perform to fulfil them, are where people find meaning and fulfilment in life. The way that we care for people with dementia can sometimes involve us removing or restricting their roles and responsibilities. Some of these adjustments are necessary and unavoidable, however, people who have no roles, responsibilities or autonomy over their daily routine can often be left with a feeling of purposelessness or unfulfillment. Feelings of boredom can lead to frustration, irritability, depression and agitation.

Depression and anxiety – These psychological conditions are significantly more common amongst people living with dementia and are often overlooked because the symptoms can be mistaken for part of the person’s dementia. Changes in the brain as well as their abilities and circumstances can lead to distressing behaviours such as disturbed sleep, reduced concentration, agitation, restlessness and wandering. 41

Versions of reality – You may find yourself in an uncomfortable situation when a person with dementia talks about things that you know are factually incorrect. It is not uncommon for people to believe that they are much younger than they are, that their parents are still alive or that they need to go out to work or to pick up children that you know are now pensioners themselves. In situations like this, carers sometimes get bogged down in fact and detail which can often lead to confrontation and feelings of anxiety or loss. A bit of detective work can help you to sift out the meaning from the communication. For example, if they talk a lot about needing to go to work or pick up their children from nursery, you could interpret that those roles (employee, mother) brought meaning into their life. As a carer, you might want to talk to them about these roles and listen to their stories. You may want to think about ways that you can create a meaningful role in their life now, even something as simple as supporting them to do chores or parts of their daily routine.

How can I manage this? The most important skill to develop is to not take difficult behaviour at face value. Like everyone, people with dementia do and say things for a reason that is meaningful to them. What may appear irrational or illogical to us makes sense to them and it is our job to try to work out the message hidden in the behaviour. Remember that dementia changes the ability to communicate in such a way that we ought to think of dementia as a different language. If we want to be able to communicate effectively with the person, we have to learn to speak the language of dementia. This means we need to watch what they are doing, not just what they are saying and repeatedly ask yourself the question, ‘She seems angry. What is she trying to tell me?’

Keep a behaviour diary Keeping a record of what a loved one does and when can give you an idea of what their message might be. If the person becomes frightened and tearful four times a day, try to take note of the time to help work out what the underlying need is. I used to look after a lady who was very calm and pleasant most of the time, but four or five times a day she would become extremely agitated and aggressive. Because she had a diagnosis of dementia, people didn’t think to interpret this behaviour to try and find the meaning and, instead, attributed everything she said and did to her dementia. I started to note the times of the day this happened and noticed that the distressing behaviour coincided with episodes of incontinence. Was her aggression an attempt to communicate that she was feeling panicked because she needed the toilet? From noting the times, I was able to pre-empt her episodes and ensured that I regularly took her to the toilet around the time that she would have become distressed. Once we had established this new routine, we noticed that she no longer had episodes of aggression and agitation because we had understood her communication.

Try to identify triggers As well as identifying patterns, a behavioural diary may help you to identify triggers or causes of distressed behaviour. To get the best information from a person’s behaviour, it is important to consider as many details as possible. During or after an incident it may be helpful to ask yourself the following questions; • What time of day did this happen? • Who was present? • What room were we in? • What were we doing? • What did the person say? • What was their behaviour like? • Did anything seem to make things calmer? • Did anything seem to make things worse? • How long did it last for? • Could they remember the incident afterwards and if so could they tell you what happened? Once you start analysing episodes of distressed behaviour in this way you may start to identify triggers. For example, aggressive or violent incidents that occur in care homes often do so in the bathroom when people with dementia are being washed or are using the toilet. This allows staff to understand how these circumstances might be triggering the person; • They are in a small room with a carer they don’t recognise • There is no natural light in this room • The person’s clothes are removed so they may feel embarrassed or undignified • The carer performs intimate care that the person may not understand so they shout and try to resist Once you identify a trigger, you are able to think of ways to either remove the trigger or, if this is not possible, add extra support for the person at times when they are likely to be triggered. If you were problem-solving around the above scenario, you may consider the following strategies; • Can the person have a stripwash with a warm bowl of water in a room they are familiar with if they don’t like the bathroom • Can they be encouraged to do as much of the task as they can interdependently, especially intimate areas • Make sure the carer keeps reassuring the person with dementia and talking them through the task 43

If any of these strategies help, you can then start to think about which one was most useful and make it a regular part of their daily routine.

Let the team know Distressed behaviours are some of the most difficult elements of dementia that people can experience. For family carers, seeing these behaviours in the hospital can cause a great deal of stress, worry and upset. It’s important for you to let the team know about any new behaviour that you observe because this might be indicative of an underlying treatable problem such as a delirium or pain.

Communication / Non-verbal communication We know that a person’s ability to communicate is affected by their dementia, but we also need to think about the way in which their dementia should change our communication too. Remember that dementia is a language and we need to adapt our communication in order to accommodate the needs of a person living with dementia.

Here are some key tips to consider when communicating; • Look at the person when you are talking to them • Minimise any environmental distractions, for example, close the curtains around the bed, turn the TV down/ off if possible, and make sure that you have their full attention. Sometimes monitors and other hospital equipment can be distracting – ask staff whether they can be moved away from their line of vision • Speak slowly and get straight to the point • Pause in between sentences to ensure that they have understood you • Repeat yourself as often as necessary • Although people with dementia may lose the ability to communicate verbally, they often retain the ability to communicate non-verbally. This means you should use other forms of communication when interacting with them. For example, gesture, facial expressions and the tone of your voice. If their processing ability is slow you may decide to hold your smile just a little longer until you know they’ve seen it • If somebody is shouting and distressed, try to use a low, soothing tone to your voice. If you match their energy you will likely escalate how they are feeling • If you are feeling impatient or stressed out, the person with dementia is likely to pick that up and react to it. Make sure you give yourself a moment to clear your head and keep your composure • Avoid complex conversations and crowding. People with dementia often cope much better with one to one conversations. However, if there must be more than one person, do everything possible to make them feel included, even if it means just holding their hand and promising them that you’ll explain everything later, when you’re on your own together 44

TOP TIP “Try music. Music can be such a help as a means of expression and therefore a method of calming distress. Many hospitals are aware of the power of music and some have music players and headphones you can borrow if you don’t have your own. Discussing and sorting out a playlist can be an enjoyable activity in itself and somethiing that other members of the family may like to help with.” Julia Jones, John’s Campaign

Reassurance The experience of dementia is frightening and unsettling at times for the people living with the diagnosis. Kindness, patience and an understanding of this are key to helping them feel safe and understood. Don’t underestimate the power of a kind gesture such as holding a hand, a cuddle or a cup of tea.

TOP TIP “If the person you care about has young onset dementia, being on a hospital ward with other people who are much older may cause some behavioural changes, such as alienation leading to withdrawal, feelings of a lack of identity which may translate into a younger person being fearful of their own future living with dementia. If you have concerns about this make sure you talk to the medical team.” Clarissa O’Keefe, Dementia Trainer

CASE STUDY Although Pat tries to see Maria as often as she can, soon she needs to return to work and can’t spend as long on the ward as she had been doing. This seems to have an impact on Maria who becomes very upset and angry instead of her usual cheerful self. Gemma the nursing assistant tells Pat that Maria scratched her when she was trying to help with her exercises and she has been shouting and swearing at the other patients. Pat is really upset and embarrassed and blames herself. Gemma wonders whether Maria is feeling bored and lonely and asks Pat whether she would agree to Maria being visited by a volunteer. The next day a retired lady called Jennifer comes to visit her and brings a box of dominoes with her, Maria’s favourite game. The two strike up a friendship and Jennifer visits Maria when Pat is tied up with work. The next time Pat comes to visit, Maria seems much happier and relaxed on the ward.

And what about YOU? Take time off if you need to. Some family carers learn to see their loved one’s time in hospital as a chance for them to have some informal respite, and there’s nothing wrong with that. If you need a break, don’t be afraid to tell hospital staff and try not to feel guilty. Remember, hospital staff might work very hard but their job is over when your loved one leaves hospital…and your job begins all over again.

Chapter 8: Discharge (going home) Once your loved one is medically stable, the team caring for them will start making plans to discharge them as soon as possible. If they are being discharged somewhere other than their usual place of residence, either temporarily (for example, to a rehabilitation facility) or permanently (for example, into a nursing or residential home), a series of assessments and conversations need to take place with you and the person with dementia beforehand. Being told that the person you care about is being discharged from hospital can make families worry; are they being discharged too soon? Have the consequences been thought through properly? Itâ&#x20AC;&#x2122;s really important that you are involved in any conversations about discharge so that you feel happy with and understand the discharge plans, have the opportunity to express your concerns and have your own needs assessed. Itâ&#x20AC;&#x2122;s also worth remembering that no matter how good the hospital is or how kind the staff, hospital is still not the best place for a person with dementia to be and, with the right support, most people do better in a more familiar, nonclinical environment.

Assessments prior to discharge Once a person is admitted onto a hospital ward, the first priority is to formulate a medical treatment plan. Depending on the reason for admission, this plan may involve antibiotics, scans, procedures or surgery. The aim of this treatment plan is to ensure the person is medically stable and therefore has the potential to recover and be discharged. Once they are medically stable, a series of assessments will start taking place by the Multi-Disciplinary Team (MDT) caring for them on the ward. Â 47

TOP TIP “Make sure you speak with the discharge team if you are concerned your loved one will be able to convince the team they are fine at home without any help but in fact you feel they need more support. This happened with my own grandfather who had mild dementia. He would tell the team every day that he managed fine on his own at home, when in reality he needed 4 carers a day plus my mother’s help.” Julia Jones, John’s Campaign

The assessments they have will depend on individual need but may include: • Physiotherapy assessment of mobility and transfers – prescription of equipment if required, for example, walking stick or Zimmer frame. • Occupational therapy assessment of ability to perform their usual daily tasks and participate in a meaningful routine of their choosing. This may also include an assessment of the person’s home environment with equipment and adaptations provided if required – for example, rails in the person’s home, a commode or equipment to help get in and out of the bath. • Speech and language therapy assessment to determine whether communication or swallowing guidance may help them. • Dietitian assessment to help optimise the amount of nutrition and calories they are consuming. They may recommend changes in diet or the use of nutritional supplements. • Social services assessment to determine whether or not your loved one requires a temporary or longer-term package of care. A package of care is a support plan designed by social services whereby a care worker visits your loved one’s house to support them with any activities they need help with. Packages of care are designed around their specific needs and vary widely. It may involve minimal support, for example, one or two visits a week from somebody to help with grocery shopping or household chores or up to three or four visits per day from someone to help with all elements of the person’s life and care including preparing meals and/ or using the toilet. The support that is provided may be free or it may be means tested (meaning that the person with dementia may be asked to make a financial contribution towards their care) depending upon the individual circumstances and the council providing the care. • Social services should also assess your needs as a carer. This may be done whilst the person with dementia is in hospital or it may happen soon after they have been discharged home. 48

The purpose of a carer’s assessment is to determine any support needs you may require as a result of your caring duties. To be entitled to a carers assessment you do not necessarily need to be the person’s full-time carer or live with them. Sometimes fitting in caring around your studies, job or your own family life can be just as demanding as providing full-time care. Social services may carry out the assessment themselves or they may ask a voluntary organisation to carry it out on their behalf. The carer’s assessment should cover the following areas; your caring role and what is involved, your health, your well-being, stress levels and any worries you might have as well as how your caring role impacts other parts of your life including work, relationships and hobbies. After the assessment, if the council feel that you have eligible needs they will draw up a care support plan to provide practical assistance to you in your caring role. • If the person with dementia is not returning to their home and if their needs have increased to the point where they require a nursing or residential home then a different set of assessments need to take place. These assessments, usually part of the “NHS Continuing Healthcare” system, assess whether the person’s primary need for a move to this type of facility relates to their physical health (requiring care provided by a registered nurse) or whether the care falls under social care (requiring care provided by a care assistant). Your social worker and hospital ward will be able to discuss things in greater detail if this is the case.

Getting involved early Given the extensive amount of work and assessment that goes on prior to a decision to discharge, no carer should feel that the decision has been made suddenly or that plans have come out of nowhere. Good communication between the hospital team, the person with dementia and you is essential to making the right decisions around discharge and ensuring that everybody feels supported and comfortable.

TOP TIP “From my experience as a GP a lot of patients worry that when I send them into hospital it means they are never going to come home. After explaining that they will be part of any discussion on what will happen on discharge eases some anxiety from the start.” Dr Julia White, GP

Here are some tips for encouraging early involvement in discharge planning: • Introduce yourself to the ward team and ask to be involved in any discussions around discharge. You should ask the team who is taking a lead on planning the discharge for your loved one, if it is being done as a team then ask who is the best person for you to liaise with. If you are unable to meet face-to-face with the ward sister, ask whether or not you can have their email address. This will allow you to write down your thoughts and ideas about discharge and have them shared with the team. • Keep up to date with what is happening – lots of variable factors are involved in planning a discharge and sometimes plans do change or need to be modified at short notice. To ensure that you are up to date, you should regularly check in with the ward sister or the person who is leading the discharge. If you are able, it can be useful to visit the ward during the doctor’s ward round which usually happens in the mornings. If you only come to the ward in the evenings, you could consider providing your loved one with a “communication book”, asking each professional who sees them that day to write down their updates from the day. If there is more than one person in your family involved in caring for the person with dementia, it is often a good idea to decide on one spokesperson or single point of contact and stick to that. Having lots of different voices with different perspectives involved can cause messages to be lost and plans to become confused. • Understanding the decision-making process – When a person with dementia is admitted to hospital, there is a legal presumption that they are able to make decisions for themselves under the Mental Capacity Act 2005. This is a piece of legislation designed to protect and safeguard the rights of people who may not be able to make decisions for themselves. If the team has reason to believe that the person is not able to make a specific decision for themselves then the burden of proof is on them to demonstrate that they cannot make the decision, in other words, that they ‘lack capacity’. They do this by performing a mental capacity assessment on the person with dementia. Whoever conducts the assessment must ensure that it focuses on a single decision, and that the decision itself is presented in a way that best suits the person with dementia’s decision-making abilities. Their ability to understand, retain, weigh and communicate pertinent information in regard to this particular decision, will all be assessed. If a they are found to have capacity then they will be left to make the decision in question for themselves. If they are found to lack capacity, a decision will be made on their behalf either by an appointed Power of Attorney (LPA), an Independent Mental Capacity Advisor (IMCA), family/ carer and the treating team involved in their care. The decision reached must be in the person’s best interests and should take into account any previous wishes or opinions the person with dementia had prior to losing capacity.

Practical considerations prior to day of discharge • Medication – has the medication changed and if so, what is the new schedule? Is this change something that the person will be able to manage or will they need support in keeping up with the schedule? If this is the case, their doctor or pharmacist may be able to provide them with a dossette box or they can be purchased privately. • Clothing – do they have a weather appropriate outfit for the day of discharge? This should include outdoor shoes and a coat as well as other warm clothing such as a cardigan or a jumper. • Follow-up plan – If their medical treatment is finished then they will likely be discharged back into the care of their local GP who will receive a letter from the hospital detailing the events, diagnoses and treatment during the admission. In some cases, for example, if the person has had an operation or procedure, they may be required to attend an outpatient appointment in the weeks or months post-discharge. It is important for you to find out as much as you can about this, including when and where the follow-up appointment letter will be sent.

does not happen as it should, you have a person to contact who can help you. Many people feel that this gives them peace of mind in the days following a discharge home and will tape the list next to the telephone for easy reference.

Practical considerations on the day of discharge • Morning discharges are usually preferable for a person living with dementia. This is because as the day wears on some people with dementia can experience an increase in confusion and anxiety as they become more tired and as darkness draws in (known as “sundowning”). Morning discharges give you plenty of time to get the person home and settled in before nightfall. If a morning discharge is to be successful, everything should have been fully confirmed and completed the day before discharge. • Transport is a key consideration of the discharge process. You will want to know how the person is getting home and what logistics are involved. Some hospitals move a person with dementia from the hospital ward to a “discharge lounge” to wait for transport. Usually, hospital transport is not a direct journey from the hospital to the person’s home and often, patients are transported in small groups in an ambulance. The person on the ambulance might be dropped off first or they might be dropped off last.

This can mean that a 20-minute journey could take much longer. For people living with dementia, this system is not ideal and your loved one may become confused, agitated or restless with the moves and changes involved. Speak to the ward about whether or not you would be able to travel home on the ambulance with them or, if the they are mobile, you may be able to take them home yourself in a car or taxi. • Keys – make sure that the ward has a copy of your loved one’s house keys so that they are able to get in once they arrive. If you have not been able to travel in the ambulance with them, it is sometimes a good idea to be at home waiting for them so that you can let them in and start to settle them straight away. • Groceries – even if the person is usually able to do some shopping themselves or go with you to the supermarket, it can be a good idea to make sure that there are enough fresh groceries in to last a few days. The discharge process can be very tiring and stressful for you and your loved one and the last thing you’ll want to do is have to pop out to the shops once they are home.

TOP TIP “Unfortunately, there is sometimes a delay in the GP surgery getting the discharge papers. If any medication has been changed and the only have 1-2 weeks of medication issued then it would be worth contacting the GP surgery to notify them that some changes have been made.” Dr Julia White, GP

Settling in at home It is likely that the person living with dementia will require some time and support to settle back into their home environment and daily routine. It’s usually easier to settle somebody back into home than it is to settle them into hospital, but the same principles apply. Reassurance, a calm and relaxed environment and quiet time can help them to feel safe and happy to be home. If they’ve been delirious or if they’ve had a change in their functional abilities as a result of their time in hospital, they may need some time to adapt to new circumstances. If your loved one is having a new package of care, it’s often useful to be there the first time the new carer visits. This gives you the opportunity to meet them and properly introduce them to your loved one, and it also helps the person with dementia adapt to a new dynamic if you are on hand to support and endorse it. Some family carers like to stay overnight for the first one or two nights after a loved one comes home from hospital. A relaxing wind down routine, including favourite television programmes, food and pyjamas plus an early night is often really useful.

TOP TIP “If they have a ‘This is Me’ book don’t forget to pack it and bring it home from hospital, with any new additions that Nursing Assistants / other MDT professionals may have included in it. This book and the information it contains is gold dust as it is the very essence of person-centred care and can be transferred to staff who may be working with the person in the community / home setting.” Clarissa O’Keefe, Dementia Trainer

CASE STUDY Maria has been in hospital for a week and the doctors feel that she is medically stable. Although she is walking a bit better now, she is using a stick and will need a bit of extra help at home. Pat is introduced to Francis, an OT who comes out to Maria’s house and installs an extra bannister on her staircase and some other bits of equipment to help her in the home. Cameron, a social worker, talks to Pat about how she is coping and says that he will visit Pat and Maria after the discharge to carry out a Carer’s assessment. Pat says that she is losing track of all the names and plans so Cameron suggests she writes down everyone’s name and phone number. The doctors have changed Maria’s medication and Sister Burns suggests the new medication is given in a dossette box to make managing the changes easier. Sister Burns says that Maria will receive a followup appointment in fracture clinic two weeks later. The ward arranges for them to travel home in the ambulance together the next morning and, although she is very tired, Maria is happy to be home. A week later, no appointment letter has arrived so Pat calls Sister Burns who looks on the system and tells her when Maria is next due in.

And what about YOU? Congratulate yourself. You’ve managed a very stressful experience and coped with lots of change and uncertainty. Feel proud of what you’ve achieved and give yourself a reward, whether it’s a bunch of flowers, a coffee with a friend or something more extravagant, you deserve it. The person you love is safe, well and at home. Mission accomplished. 55

Conclusion We hope you’ve found this guide useful and that it’s helped you get through a potentially very difficult experience. We also hope that the person you love doesn’t need to go into hospital again, but if they do, at least you now have a good idea what to expect and are familiar with the people you might meet. Spending time with a loved one in hospital can also make you think…Perhaps you’ve already considered what would happen if YOU were taken into hospital unexpectedly. What if you were in an accident, for instance? Do other people know you have this additional responsibility? No matter how unlikely it may seem, if you haven’t already got a plan in place, it makes sense to have one. As you’ve probably just discovered, being prepared can save you a huge amount of stress and worry. Now you’re both back home you probably just want to get back to normal, but first, if you can spare a few minutes, why not give the hospital some feedback? Don’t forget to mention what went well as well as what might have gone better. We know how busy you are but your feedback could help another family, just like yours. You can give feedback via Patient Opinion, www.careopinion.org.uk NHS family and friends or the Patient Advice and Liaison Service (PALs). Or you could simply send a card or letter to the ward.

Why you need an LPA If you or someone you know has dementia it’s very important to take out an LPA as soon as possible. Why? Because sadly, the longer you leave it, the more complicated and expensive the process can become. But don’t worry. Our expert team is here to help and give you free, friendly and impartial dementia-specific advice, so that you can sort out your LPA quickly and easily…and then get on with your life.

What is an LPA? A Lasting Power of Attorney (LPA) is a legal document which appoints one or more people you trust to make important decisions about your financial affairs and health care when you can’t make those decisions yourself.

What if you don’t have an LPA? The people you love and trust will not automatically be allowed to look after your affairs if you aren’t able to. Instead, they will have to go through a complex, lengthy and more expensive process (involving the Court of Protection) which could result in people you don’t know such as accountants and lawyers making decisions for you.

“Absolutely brilliant service. I’m pretty confident that I couldn’t have done it without you. I really like the Statement of Wishes, it gave me comfort that I was able to create something that would guide my daughters.” John 57

Introducing the first LPA designed specifically for people with dementia The Unforgettable LPA service is as cheap, simple and hassle free as possible, because we know that’s what you want. Our basic package is free and the other four are designed to suit different needs and budgets, ranging from a simple form-checking service to bespoke home-visits including mental capacity assessments. We’ve also created a free, unique Statement of Wishes document so that you can give your attorneys your views and preferences about everything from care homes and medication to gift buying and how they should manage your money.

How it works 1. Call us for a chat (or request a call back). We’re happy to explain everything you need to know and tell you about all the options 2. Get your free eBook. We’ll send you our Free Complete Guide to LPA which will give you all the essential information you need at your finger tips. 3. Start your LPA. Once you’ve decided what you want, just give us another call and we’ll get you started right away. Simple.

Our free LPA eBook will help you get to grips with it all

Why should you choose the Unforgettable LPA service? Free online service with great value support packages Our services specifically relate to challenges relating to dementia and memory loss Fast, easy and secure - simply answer our online questionnaire to complete your forms

Need Help? If you need help choosing the right package for you our team would be happy to help. Call us on 0203 322 9388, email us, or visit www.unforgettable.org/lastingpowerofattorney 58

If the person you love has dementia you probably dread the thought of them being admitted to hospital. How will they cope in an unfamiliar environment? How will YOU cope with the stress and worry? That’s why we’ve worked with dementia specialist Danielle Wilde to produce this unique and practical guide which will help you to prepare, show you what to expect and give you lots of great advice, tips and reassurance. This book will Provide you with all the essential information you need Give you the confidence and courage to manage the hospital environment About the author Danielle Wilde is the dementia lead at the Royal Free Hospital London NHS Foundation Trust. She is a dementia specialist occupational therapist with ten year’s experience of working in dementia care. Hear from others This is a concise, well constructed and easy to follow book which gives practical and thoughtful advice for carers. Many carers do not have the time to read long advice books and I think this book does well to address important points in a very clear way. I have already directed many of my patients to the unforgettable website and I will definitely be recommending this book also. Dr Julia White MBChB BSc MRCGP DRCOG www.unforgettable.org 020 3322 9070, happytohelp@unforgettable.org Unforgettable.org, Runway East, 58-64 City Rd, London EC1Y 2AL