Living Well with Dementia

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1 East and North Hertfordshire Clinical Commissioning Group Herts Valleys Clinical Commissioning Group Supported by: Living Well with Dementia Living Well with Dementia Please insert a photograph of your choice here.

2 Foreword It is with great pleasure that I can now introduce the Hertfordshire Living Well with Dementia handbook. As the Chair of the Health and Wellbeing board, I am keen to highlight that dementia is one of the key priorities for the county. It is always high on the agenda and Hertfordshire is providing a greater range of more personalised services to meet the increasing number of people living with dementia. The county has a growing population of older people and demographics suggest this is set to rise year after year. If we apply the Alzheimer s Society calculations of people suspected to have a type of dementia this will mean 14,000 people will be living with dementia in Hertfordshire in We know that the sooner a person is diagnosed with dementia, the more opportunity for choice and control they have over their plans for the future. Local GPs, Hertfordshire Partnership University Foundation Trust, Hertfordshire County Council and the Alzheimer s Society provide an Early Memory Diagnosis and Support Service known as EMDaSS for people in the early stages of dementia. This guide has been developed in conjunction with the Alzheimer s Society and other stakeholders to support individuals, their families and carers throughout the early stages of a diagnosis of dementia. I hope it will be a useful tool for family and friends as it provides information for anyone taking on a caring role and can also be an information source for professionals. Cllr Colette Wyatt-Lowe November 2013 Herts Valleys Clinical Commissioning Group has identified Mental Health and Older People as two of the five programmes that make up our clinical strategy for the people of West Hertfordshire. We know that the number of people with dementia is set to increase significantly in the next 3 years, and we are committed to making sure that they get the best quality of care as well as making sure that their carers are fully supported too. There is significant evidence that diagnosing people in the early stages of dementia helps them and their carers to maintain their independence and lead fulfilling lives for longer. It also means that they can receive support from local health, social and voluntary services to make plans and informed choices for the future. It is with this in mind that I m very pleased to have been asked to introduce this new Living Well with Dementia handbook. I hope that it will help people with dementia and their carers as well as all those who are involved in providing care and services to them to better understand the condition and the services available to help. Dr Nicolas Small Chair, Herts Valleys Clinical Commissioning Group November 2013 Meeting the mental health needs of our patients is a real priority for East and North Herts Clinical Commissioning Group. I am the mental health lead for the Clinical Commissioning Group and a member of the Governing Body. Offering mental health support early on has been shown to improve the physical health of our patients, they respond better to treatment and they recover more quickly. Helping patients in this way also has benefits for the wider NHS and local health economy too. The Living Well with Dementia handbook is really important in helping improve the lives and wellbeing of people with dementia. It provides a wealth of practical information, but equally as important, it also provides those caring for and treating the patient with a picture of the person, their likes and dislikes as well as a useful insight into their daily routine. This in turn helps us provide the patient with a care plan that reflects their wishes and is familiar to them, causing them as little disruption and stress as possible. Dr Prag Moodley November 2013

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4 Welcome to your Living well handbook This handbook has been developed within Hertfordshire to support people who have received a diagnosis of dementia. The guide will be a useful tool for family and friends of people with dementia, as it contains information for anyone in a caring role. It may also be useful for professionals and care workers so that they can share information and prevent the need to ask unnecessary questions. It is to help provide an understanding about what treatment, support and services are available within Hertfordshire for people with dementia and includes information about living well with dementia and making plans for the future. You might choose to read the whole document, or, if you prefer, focus on the parts that seem most relevant to you. Each section starts with summarised key points. These have been included for those who may prefer to read an overview of the section rather than the whole thing. Following a diagnosis of dementia you may be feeling a range of emotions: anger, frustration, fearful or maybe it will bring a sense of relief to understand what has been going on. Everyone will deal with the news in a different way, but all of these emotions may be present throughout your journey. They are perfectly normal feelings. Your close family and friends may also experience a range of emotions as they too prepare for the changes ahead. Talk with family and friends you may be able to support one another. If you find it hard talking to those close to you, Health and Social Care professionals are available, along with dementia advisors within the Alzheimer s Society who can be a great support. It is important to understand you are not alone. There are approximately 800,000 people in the UK and 14,000 in Hertfordshire living with dementia. Carers in Herts and the Alzheimer s Society run peer support groups to make relationships with people in similar situations if you desire. At the back of the document you will find details of organisations within Hertfordshire as well as national organisations, who can be a person at the end of a phone, create a friendship or be a point of contact as and when needed throughout your journey. Please remember you are not alone. I agree the personal information contained within this folder can be shared with Health and Social Care professionals. Signed:... Print Name:... Date:... 1

5 Frequently Asked Questions (FAQs) What is dementia? (see page 24) Where can I store my important documents? (see page 11) How will dementia affect me? (see page 25) What services are out there to help me? (see page 47) What benefits are me or my family entitled to? (see page 41) Are there things I can do to help myself? (see page 33) Can I make my own choices? (see page 7) Am I able to take any anti-dementia drugs to help my condition? (see page 28) What financial decisions do I need to make now so my wishes are considered in the future? (see page 43) How can I stay independent? (see page 33) 2

6 Part One - About Me My contacts My details My wishes My care plans Part Two - Understanding dementia What is dementia? Types and symptoms Following a diagnosis Progression of dementia Part Three - Living well Maintaining independence Staying active Staying healthy Planning ahead Part Four - Getting support Community support Alternative housing Funding Carer support Useful contacts 3

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8 Part One About me Part One About me

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10 My contacts Emergency contact Name... Address... Post code... Telephone number... Relationship to me... Other contacts Key holder Name... Address... Telephone number... Neighbour Name... Address... Telephone number... General Practitioner Name... Address... Telephone number... 4

11 My details My name is... I like to be called... Date of birth... I live at address... Postcode... Telephone number... I live with... My belief or faith is... The people who are important to me are: The people who know me best are: 5

12 Talking to Me My first language is... I wear glasses: No Yes for reading all the time I use a hearing aid in my: left ear right ear both ears The batteries are:... Moving about I need help Yes No The help I need is... I use a walking aid Yes No Type... Allergies Type of allergy... 6

13 Eating and drinking I like... I don t like... I may need help with... I wear dentures: Yes No Hygiene I like to: bath shower strip wash I do this: everyday every 2/3 days every week I may need help with... When at home I like to wear... 7

14 At night Likes At night my usual routine is:... At night it helps me to settle if:... Dislikes The things that bother me and make me anxious are:... The things that cause me discomfort are:... 8

15 I enjoy During my life I have done the following:... My regular routines are as follows: (e.g. morning walks, meet friends, watch rugby etc.)... A good day for me is when:... 9

16 A bad day for me is when:... Interests:... Family and friends My family and friends are:... 10

17 My wishes Power of Attorney Attorney s name(s)... Registered Yes No Date... Property/finance Health and welfare Living will Living Will/Advance Directive completed Yes No If Yes, held with... Advanced requirements Do you have an Advance Care plan? No Yes / where is it stored?... Do you have an Advance decision to refuse treatment? No Yes / where is it stored?... Do you have an Advance statement of preference and wishes? No Yes / where is it stored?... This is me document completed Yes No You can store these documents in the wallets located after page

18 My care plans Current prescription record Date Drug Dose Frequency.../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../....../.../... This is a personal record and should be checked for accuracy 12

19 Medical contact details Title and symbol Name Contact Number GP Hospital Dementia Advisor Community Psychiatric Nurse Consultant Psychiatrist Speech and Language Therapist Physiotherapist Occupational Therapist Social Worker District Nurse Chemist Dentist Optician 13

20 Other useful contacts Bank Building Society Library Hairdresser 14

21 Dates, appointments, messages and comments Date and time Event 15

22 Dates, appointments, messages and comments Date and time Event 16

23 Calendar January M T W T F S S February M T W T F S S March M T W T F S S April M T W T F S S May M T W T F S S June M T W T F S S July M T W T F S S August M T W T F S S September M T W T F S S October M T W T F S S November M T W T F S S December M T W T F S S

24 Calendar January M T W T F S S February M T W T F S S March M T W T F S S April M T W T F S S May M T W T F S S June M T W T F S S July M T W T F S S August M T W T F S S September M T W T F S S October M T W T F S S November M T W T F S S December M T W T F S S

25 The following wallets can be used to store any relevant documents e.g. This is me, Power of Attorney etc. and the photo wallet to store any pictures or photographs you wish to share. 19

26 Wallet for storing documents 20

27 Wallet for storing documents 21

28 Photo/picture wallet 22

29 Photo/picture wallet 23

30 Part Two Understanding dementia Part Two Understanding dementia

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32 Understanding dementia Key points Dementia occurs when the brain is affected by a disease. It s not a normal part of ageing Dementia is progressive, which means that symptoms get worse over time. However, many people with dementia lead active and fulfilling lives for many years There are many different types of dementia. The most common are Alzheimer s disease and vascular dementia, which are sometimes combined (called mixed dementia). Less common are dementia with Lewy bodies and frontotemporal dementia Dementia affects everyone differently and can cause a wide range of symptoms. These can include problems with memory, thinking, concentration and language. People may become confused or struggle with how they perceive things. Dementia can also cause changes in mood or emotions and affect how someone behaves There are also some rarer conditions that cause dementia. Together, they account for only about five per cent of all people with dementia. What is dementia? Dementia isn t a natural part of ageing. The word dementia describes a group of symptoms that may include memory loss, difficulties with planning, problemsolving or language, and sometimes changes in mood or behaviour. These symptoms occur when the brain is damaged by certain diseases including Alzheimer s disease and damage caused by a series of small strokes. There are many types of dementia - probably more than 100. The most common types are Alzheimer s disease and vascular dementia. Some people have a combination of these, known as mixed dementia. Dementia is progressive, which means the symptoms will gradually get worse over time. How fast it progresses will depend on the type and the individual person. Each person is unique and will experience dementia in their own way. 24

33 Types and symptoms What are the symptoms Everyone experiences dementia in their own way. Different types of dementia can also affect people differently. However, there are some common symptoms that are listed below. Memory loss: Problems recalling things that happened recently (although some people easily remember things from a long time ago) Repeating themselves (such as asking the same question over and over). Difficulty thinking things through and planning: Problems concentrating, following a series of steps, grasping new ideas or solving problems Struggling with familiar daily tasks, such as following a recipe or using a debit or credit card. Problems communicating: Difficulty finding the right word Struggling to follow a conversation or misinterpreting things. Being confused about time or place: Losing track of what time, date or season it is Not knowing where they are, even in a place they know well. Sight and visual difficulties: Difficulty judging distances (e.g. on stairs) Misinterpreting patterns or reflections in mirrors. Mood changes or difficulties controlling emotions: Becoming unusually sad, frightened, angry or easily upset Losing interest in things and becoming withdrawn Lacking self-confidence. 25

34 Changes over time Dementia is generally progressive, which means that symptoms gradually get worse over time. How quickly it progresses varies greatly from person to person. Many people with dementia maintain their independence for many years. In the middle and later stages of dementia, people will need more support with daily activities like cooking or personal care such as washing and dressing. Dementia can shorten life expectancy, although some people live with it for many years. What are the causes? Dementia is caused by physical changes in the brain. As dementia progresses, the structure and chemistry of the brain changes, leading to damage and gradual death of brain cells. Damage to different parts of the brain will have different effects. For example, in one area it might affect short-term memory, while in another it might affect a person s ability to organise things. To find out more about changes to the brain, see types of dementia. Types of dementia Alzheimer s disease Alzheimer s disease, first described by the German neurologist Alois Alzheimer in 1907, is a degenerative disorder of the brain. During the course of the disease plaques and tangles form in the structure of the brain. These changes result in the death of large numbers of brain cells, particularly in the outer layer of the brain. People with Alzheimer s disease also have a shortage of some important chemicals in the brain. These chemicals (called neurotransmitters) are involved in the transmission of messages within the brain. The cause of Alzheimer s disease is currently unknown but, like many medical disorders, it is probably caused by a combination of genetic factors and environmental influences. Much of the research ongoing worldwide is focused on finding the cause of Alzheimer s disease. As our understanding on what goes on inside the brain and nerve cells increases, we gain insight, leads and clues about the other dementias. Many past and current research projects have looked at the effects of the build-up of amyloid protein in the brain. What causes this excess of amyloid is not clear. The genes responsible for amyloid production have been identified and studied extensively. Examples of research programmes funded by Alzheimer s Society can be found on their website: 26

35 In a small number of families there appears to be a clear inheritance of the disease from one generation to the next. However, it seems that this is usually only the case in early-onset Alzheimer s disease, where people develop the illness at a relatively young age. In most cases, the effect of inheritance is small. For example, if a parent or other relative has Alzheimer s disease, your own chances of developing the disease are only a little higher than if there were no cases of Alzheimer s disease in the immediate family. Other factors that may contribute to, or protect against, Alzheimer s disease (such as environment, medication, injury or lifestyle factors including diet) are being studied, but no conclusions have yet been reached. Vascular dementia The second most common form of dementia is vascular dementia. This is caused by irregularity in the blood supply, or vascular system. Stroke is one of the most common causes of vascular dementia. A stroke occurs when either the blood flow in the brain is blocked by a blood clot in an artery or when a blood vessel bursts in the brain. In some cases the person may have a series of small strokes (also called infarcts), each of which may be so small that you and the person may be unaware that anything has happened. This type of vascular dementia is sometimes referred to as multi-infarct dementia. Because recovery often occurs after a stroke, some people may show partial improvement after a period of deterioration, before once again showing a further loss of abilities. People with high blood pressure, high cholesterol and diabetes are at a greater risk of vascular disease. Avoiding being overweight (through healthy eating and exercise), stopping smoking and avoiding excessive alcohol intake can help prevent vascular disease. Dementia with Lewy bodies In dementia with Lewy bodies, microscopic protein deposits - or Lewy bodies - develop inside nerve cells, leading to the death of brain cells. Researchers have found that there is a link between this form of dementia and Parkinson s disease. In Parkinson s disease, Lewy bodies are located in the area of the brain that controls movement. The picture is further complicated by the fact that some people with Parkinson s disease may also go on to develop dementia. People with dementia with Lewy bodies often experience visual misperceptions - sometimes thought of as hallucinations - and possibly mistakes in cognitive perception, especially in the early stages. 27

36 Rarer forms of dementia There are many rarer disorders that cause dementia. Fronto-temporal dementia initially affects the front portion of the brain, leading to a loss of judgment and inhibition. Pick s disease is an example of fronto-temporal dementia. Korsakoff s syndrome is caused by a lack of thiamine (vitamin B1) and is often associated with heavy drinking over a long period. Binswanger s disease is a rare form of vascular dementia. Creutzfeldt-Jakob disease (CJD) is caused by a transmissible agent, known as a prion, that invades the brain and causes dementia. In 1996 a new form of CJD - variant CJD was identified and linked to BSE (bovine spongiform encephalopathy), a prion disease affecting cattle. Progressive supranuclear palsy (PSP) is a comparatively rare, progressive condition. Its most striking feature is paralysis affecting eye movements and problems with vision. Dementia is also associated with a number of other conditions- including Huntington s disease, HIV and AIDS, motor neurone disease and multiple sclerosis. We also know that people with Down s syndrome are more likely to develop Alzheimer s disease. Treatments There is no known cure for dementia, but there are drugs and other therapies that can help with some of the symptoms. With a combination of these, lots of people can live well with dementia for many years. Four drugs have been developed to treat Alzheimer s disease. Donepezil (eg Aricept), rivastigmine (eg Exelon) and galantamine (eg Reminyl) are for people in the early and middle stages of the disease; memantine (Ebixa) is for those in the later stages. The names in brackets are common brands of these drugs. These drugs lessen symptoms of Alzheimer s disease for a while in some people. They are sometimes given to people with mixed dementia or dementia with Lewy bodies. These drugs aren t suitable for people with frontotemporal dementia, who may be given antidepressant drugs for some of their symptoms. A person with vascular dementia will usually be prescribed drugs to treat any underlying conditions, such as high blood pressure or heart problems. 28

37 People with dementia can also benefit from approaches that don t involve drugs. One example is reminiscence therapy, which involves talking about things from the past, using prompts such as photos or music. Another example is cognitive stimulation, which might involve doing word puzzles or discussing current affairs. People with dementia may experience depression or anxiety. They are often prescribed antidepressant drugs and may be offered talking therapies, such as counselling or cognitive behavioural therapy. Currently, there is no known cure for dementia. Scientists from around the world are involved in research to try to find one. However, there are drugs that can help to improve some of the symptoms or stop them progressing for a while, depending on the type of dementia. Non-drug treatments and support after diagnosis (such as information and advice) are also valuable. Questions to ask the doctor about medications Are there any medications that can help me? Why are you offering me this medication? How do I take this medication? What are the pros and cons of this medication? - How will it help me? - How will it affect my symptoms? - How will it improve day-to-day life? - Might I suffer any side effects? - What changes should I tell you about? Are there other treatments I could try instead? Have you got any information I could take away? Talk with your GP and/or memory nurse about what may help your situation. 29

38 Following a diagnosis Having a diagnosis of dementia often raises as many questions as it answers. What will happen in the future? What can be done to help? Why has this happened? Will other members of the family develop the same problems? Don t be afraid to ask - your GP or specialist is a good place to start. You could also speak with your Dementia Advisor. Having a name for the person s problems can be helpful, but you will need to have as much information as possible if you want to plan for the future. What can be done at this stage? You may want to think about the following: Are there any treatments available that will help or treat other conditions that have been identified? If you have vascular dementia, what can be done to prevent further damage? Discussion of these issues with the specialist is an important follow-up to the diagnosis You may want to think about your medical support in the future. A good working relationship with the doctor is invaluable Do you want to set up an advance decision? An advance decision allows the person with dementia to make a binding refusal for certain kinds of medical treatment. This means that if at some point in the future you do not have the mental capacity (ability to make the decision) to refuse treatment, the advance decision will tell the doctors your wishes to refuse this treatment. Doctors have to follow the wishes made in an advance decision Are there financial matters that need to be discussed and sorted out? You might want to find out about creating lasting powers of attorney (LPA). Under the Mental Capacity Act a person is allowed to appoint someone else to make decisions for them in the future, should they lack capacity (ability to make decisions) to do this for themselves. These appointed people are called attorneys and the legal document giving them this power is called a Power of Attorney. You can have a Lasting Power of Attorney for your health and welfare, for financial and property matters or for both. Some families also discuss the person s preferences about their future care at this stage. Do you want to be cared for in a care home, for example? This sort of discussion is often put off, but may be of great value when talked through openly and honestly 30

39 Progression of dementia It can be helpful to think of the way that dementia progresses as a series of stages. But everyone experiences dementia differently - some people will experience symptoms earlier or later, or not at all. The following is simply a guide to the kind of difficulties that may be experienced. Early stage dementia This phase may only be apparent in retrospect. At the time it may be or put down to stress or depression or, in older people, to the normal process of ageing. The start of dementia is very gradual and it is usually impossible to identify the precise moment it starts. The person may: Be apathetic Show less interest in hobbies or activities Be unwilling to try new things Find adapting to change difficult Become less good at making decisions or plans Be slower to grasp complex ideas Blame others for stealing mislaid items Become more self-centred and less concerned about others and their feelings Forget details of recent events Be more likely to repeat themselves or lose their thread Become irritable or upset if they fail at something. Middle stage dementia Here the problems are more apparent and impeding. The person may: Be very forgetful of recent events - memory of the distant past is generally better, but some details may be forgotten or confused Be confused regarding time and place Become very clinging Become lost if not in familiar surroundings Forget names of friends or family, or confuse one family member with another Forget about saucepans or kettles and may leave gas unlit Walk around streets, perhaps at night, sometimes becoming lost Behave in ways that may seem odd - for example, going out in their nightclothes See or hear things that are not there Become repetitive Neglect hygiene or eating, perhaps saying they have had a bath or a meal when they have not Become angry, upset or distressed very rapidly. 31

40 Late stage dementia Here the person is more severely impeded and needs a great deal of help. The person may: Be unable to find their way around Undress at the wrong time or in public Be unable to remember for even a few minutes that they have, for example, just had a meal having recently just eaten Constantly repeat one or more phrases or sounds Be incontinent or simply not understand the need to get to the toilet Show no recognition of friends and relatives Need help or supervision with dressing, feeding, washing, bathing and using the toilet Fail to recognise everyday objects Have difficulty communicating or understanding what is said Be disturbed at night Be restless, perhaps looking for a long dead relative or for a small child now grown-up Be aggressive, especially when feeling threatened or closed in Make involuntary movements Have difficulty walking. Further information, help and support can be found by contacting your dementia support worker or at Name:... Contact number:... 32

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42 Part Three Living well Part Three Living well

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44 Living well Key points If you ve been diagnosed with dementia, there are lots of things you can do that will help you to live as well as possible To help you cope with memory problems you could try using a large diary, and perhaps keeping it next to a calendar clock. Also try keeping important items, such as keys or glasses, together in the same place Try to stay active and social: it can help you retain skills and memory, as well as improve your self-esteem, sleep and wellbeing. Wherever possible, keep doing what you enjoy, even if you have to do it a little differently Having dementia doesn t mean you should feel unwell or depressed. It s important to try and stay healthy. Regular exercise and eating a balanced diet can help. If you smoke, try to stop Arrange regular checkups with your GP, as well as regular dental, eye and hearing checks. Get the annual flu vaccine and see the doctor promptly if you feel unwell Maintaining independence A positive outlook Living with dementia is challenging and you may feel angry or frustrated about what s happening to you. Your plans for the future might change, but dementia doesn t change who you are. A diagnosis of dementia doesn t mean you need to stop doing the things that you enjoy, but you might have to do them in a different way. There are some practical things that you can do to help you live as well as possible. Focus on the things you can and want to do, and try not to become isolated. Keeping busy with activities you enjoy may help you to feel more confident. There are many practical ways to deal with memory problems. You can try to: Keep a notebook or large week to view diary. Write down things you want to remember, such as names or to-do lists. Keep the diary by the kettle or phone, so you get used to referring to it Put labels or pictures on cupboards to help remind you where things are. Or you could keep frequently used items - a cup, plate and cutlery - out on a table 33

45 Place useful telephone numbers by the phone If you find it helps, put a note on the door to remind yourself to lock up at night Ask your pharmacist about putting your pills in a dispensing box which has the days of the week marked on it. Technological aids that people can find useful include: Reminder messages - when you go in or out of the house,a recorded voice reminds you to pick up your keys or lock the front door Calendar clocks - these show the date and the day of the week Keeping the clock next to a diary or weekly planner can help you orientate yourself when checking appointments Locator devices - these help you find frequently mislaid items such as keys. You attach a small electronic tag to the item. If you mislay it, you can click a button on the locator device to make the tag beep. Keeping safe in your home Having dementia can make accidents at home more likely. There is a range of equipment available that can help you stay safe, from personal alarms to timers that switch off electrical items. It can be easier to get used to them if you do so early on, rather than introducing them if an emergency or crisis arises in the future. You might want to consider these ideas: Prevent falls by making sure the house is well lit and removing trip hazards, such as rugs. Have handrails fitted on the stairs or in the bathroom Use a personal alarm to alert people if you fall Install carbon monoxide detectors and smoke alarms Use timers for plugs, lights and heating systems to turn things on and off automatically. Ask your local fire service about a free home fire safety visit. An occupational therapist can give advice on items that could improve your safety and help you stay independent. Ask your GP or staff at the memory clinic or social services to refer you to one. 34

46 Staying active Keeping as active as possible - physically, mentally and socially - will bring great benefits. It can help you meet people, retain skills and memory, boost your self-esteem, improve sleep and avoid depression. Some creative activities can be helpful too, such as painting, writing a diary or listening to music. You may find that some of these things can help: Taking regular physical exercise Gardening Looking back on good times by creating a scrapbook or photo album Playing games or cards and doing word, number or jigsaw puzzles Listening to audiobooks, the radio or music Arts and crafts - new or old favourites Day trips or holidays Seeing friends and family Spending time with a pet. Reading books, newspapers or magazines You might find that activities take you longer than they did before. You may need to make changes to the way you do things, or have some support to do them. It s important to adapt to these changes, rather than not doing the activity at all. Things to do There are many things you can still do: You might look at old photographs or souvenirs from past events or holidays. Remembering past times is often a pleasant way of passing the time There are many tasks around the house that you may like to help with. Dusting the furniture or mopping the floor, wiping up after meals, laying a table, raking leaves or a little gentle digging are all activities that can be enjoyed Simple preparation of food, such as chopping vegetables, kneading dough and cutting pastry shapes for biscuits and pies, can be genuinely helpful and can feel satisfying Games that you may have previously taken part in, like dominoes, draughts, bingo and indoor bowls, you can still enjoy You may not want to keep a dog or a cat, but pets do bring pleasure to some people. You might encourage visitors to bring their animals 35

47 You may still enjoy singing, dancing and listening to music when other abilities are seriously affected The radio may still be enjoyed - but be aware that television can be confusing. Some people with dementia lose the ability to tell the difference between what is real and what is on screen and can become frightened and upset. Exercise Regular exercise is good for everyone. It can: Enable you to remain mobile and therefore independent for as long as possible Help you feel better and sleep better Help reduce anxiety, stress and depression. Improve circulation and help to prevent stiffness and muscle wastage Look for a form of exercise that you enjoy. A good walk in the open air can help the person you are caring for to sleep well and will help to prevent stiffness and circulation problems. You may find that walking arm in arm with a close relative, friend or partner gives a moment of natural mutual support which is not possible during a normal day within four walls. As the dementia progresses you may need to try other strategies to keep yourself reasonably fit. Your GP should be able to refer you to a community physiotherapist or an occupational therapist who will be able to advise you on some suitable exercises. Holidays together A change of scene can be very rewarding. If there is something you and your partner, friend, etc. both like doing such as walking, going somewhere where there are good walks and beautiful countryside may do you both good. If you are going to a hotel or bed and breakfast, talk to the manager about your situation beforehand. They will usually be understanding. 36

48 Staying healthy Eating Sometimes a person with dementia loses their appetite. There may be several reasons for this. You may be depressed. Depression may lead you to lose interest in food. If you feel this is the case try to get help from your doctor. Depression can often be helped with appropriate treatment Sometimes it actually hurts to eat. Check your gums - they may be sore. Also check if your dentures are comfortable. You may need to arrange a visit to the dentist Lack of exercise may mean that you are not using enough energy to feel hungry. Try to go out for walks or into the fresh air as often as possible. As the dementia progresses, you may no longer understand what food is for If swallowing becomes a problem, you will need to get professional help. A speech therapist can be contacted through your GP. Alternatively, you may be eating too much. This may be due to changes in the brain caused by dementia and is often only a temporary phase. In some cases overeating may be due to memory loss. You may have forgotten that you have just eaten. If you are eating excessive amounts then you may have to think about reducing your intake of food. Being overweight can lead to, or exacerbate, health problems such as arthritis and heart disease. Think about: Putting some foods out of sight or out of reach Finding a satisfactory activity as a substitute for eating Choosing non-fattening snacks such as fruit. During the later stages of dementia, some people develop a taste for specific foods. Foods with strong flavours are surprisingly popular at this stage. This is due to the physical damage to the brain, and is not harmful. So long as it s healthy, try to have the food you want to eat. If you are worried about your nutrition talk to your GP, who may decide to prescribe vitamins or other dietary supplements. 37

49 Drinking We all need to drink enough - between six and eight glasses of water a day is a rough measure of what is needed. Double-handled cups or mugs are easier to hold than ordinary ones, and some people find it easier drinking through a straw Try to make sure that you do not drink a lot late in the evening to reduce the need for getting up through the night Real fruit juices are an easy way for you to take in some necessary vitamins If you enjoy alcohol, there is no reason why you shouldn t continue to do so in moderation. Take care if you are on strong medication. Check with the doctor that it is okay to have a moderate amount of alcohol. Planning ahead After you ve had time to adjust to your diagnosis, make sure your financial and other affairs are in good order. There are things you can do to make managing money easier. Talk to your bank about a third-party mandate which will allow someone else to deal with your bank account. Consider getting a chip and signature card, so you don t have to remember a PIN number. You and your carer may be entitled to a range of benefits. If you have dementia you may be eligible for Attendance allowance, or (if under 65) Disability Living Allowance or the new Personal independence payment. Your carer may also be eligible for Carer s allowance. Ask social services, a Citizens Advice Bureau or Age UK for advice. Now is the time to plan ahead and talk to others about the future. If you re able, try to do it as soon as you can. Make sure you have an up-to-date will. Consider setting up a Lasting Power of Attorney. This will allow someone you trust to make decisions on your behalf if you re no longer able. To have a say in your future medical care, you can also set up an advance decision. Talk to your GP or solicitor about this. If you drive, you must tell the Driver and Vehicle Licensing Agency (DVLA) in Great Britain or Driver and Vehicle Licensing Northern Ireland (DVLNI) about your diagnosis. You will find their contact details on the contacts pages in the last section of this handbook. You must also tell your car insurer. 38

50 If you re working when you re diagnosed with dementia, you may choose to carry on doing so. It s important to talk to your employer. If you stop working or reduce your hours, you may be eligible for some further benefits. There is no right way of telling family or friends about a diagnosis of dementia. The decision will depend on the strength of the relationships and the personalities involved. You may be feeling confused and anxious and in need of reassurance. You may have some important decisions to make, including: How and when to tell family and friends of the diagnosis Whether to carry on working When to stop driving How you would like to be cared for now and in the future. Driving A diagnosis of dementia is not in itself a reason to stop driving. Many people with dementia drive safely for some time. But if someone can no longer drive safely because of health reasons, it is illegal for them to continue to drive. Anyone who holds a current driving licence or wishes to reapply for a new licence must inform the Driver and Vehicle Licensing Authority (DVLA - contact details at the back of this book) if they are given a diagnosis of an illness which may affect their ability to drive. This includes a diagnosis of dementia, and it is a criminal offence not to inform the DVLA of such a diagnosis. The DVLA will seek permission to obtain medical reports from the person s GP and/or specialists. Based on the medical information it receives, it will make a decision as to whether the person can continue to drive. The DVLA may also ask the person to take a driving assessment. A person who receives a diagnosis of dementia must also immediately inform their car insurance company. Failure to disclose this information might jeopardise the validity of their policy. Having other transport options may make it easier to come to terms with a decision to stop driving. Obvious alternatives include taxis and public transport. The transport section of your local council may have information on subsidised transport schemes. Working It s possible to continue working after a diagnosis of dementia. Some people find working helps them to feel better physically and emotionally. Others might feel that stopping is for the best. 39

51 Getting help If you re experiencing difficulties in your job, consider talking to your employer or getting advice. Advice is available from a range of places, including your GP, human resources department at work, Advisory, Conciliation and Arbitration Service, your trade union if you have one, the Citizens Advice Bureau and the disability employment adviser at your local Jobcentre Plus office. Financial matters Once you have had a chance to adjust to your diagnosis, take time to ensure your affairs are in order. It s important to make sure that all your essential documents can be found easily. Things to think about include: details of your bank accounts, tax, benefits and pension, as well as mortgage or rent documents, insurance policies and your will. It may become more difficult for you to make decisions or choices about financial or legal matters as time goes on. There are lots of things you can do to make sure you get to choose how you live now and in the future. Where possible, make these plans as early as you can with a trusted friend, family member or professional. (Choose someone who is likely to be able to support you as time goes on.) Direct debits If they aren t already in place, consider setting up direct debits for regular payments such as gas and electricity bills. That way they will get paid automatically and may also be cheaper. Bank accounts During the later stages of dementia, the bank might advise couples who have joint bank accounts to have separate accounts. This can make some things simpler. Benefits and pensions, for example, can be paid directly into your account. Any means-testing for benefits will be more straightforward too if the accounts are separate. If you need or want someone else to deal with your account, you can arrange a third-party mandate to allow this. You will need to fill in a form from the bank to set this up. The mandate will not apply in the future if you reach a point where you no longer have capacity (ability) to make decisions for yourself. A Lasting Power of Attorney will help to arrange for someone you trust to make decisions on your behalf in the future. 40

52 Debit and credit cards If you have memory problems, you may find it difficult to remember PIN numbers for debit or credit cards that have a chip and PIN device. Talk to the bank about alternatives, such as a chip and signature card or photocard. Trusts If you have property or savings, you might want to set up a trust. This will ensure things are managed the way you have chosen, now and in the future. Seek advice from a solicitor or financial adviser. Benefits People with dementia and their carers may be entitled to a range of benefits. Some are means-tested so they depend on income or savings. Accessing them can seem complicated but there are people who can advise on what to claim for and help you to complete the forms (which can be long and detailed). Try to get help from someone with experience of these forms to complete them with you. Help may be available from a social worker, a local welfare rights service, a Citizens Advice Bureau or Age UK, as well as the Benefit Enquiry Line and the Department for Social Development in Northern Ireland. The GOV.UK website also provides useful information. For some benefits, the Department for Work and Pensions (DWP) can arrange for someone to visit you at home. Attendance Allowance, Disability Living Allowance and Personal Independence Payment. These are the main benefits that people with dementia can claim. They are based on daily living, care and mobility needs, not on the dementia diagnosis. They aren t means-tested or based on National Insurance contributions. They are tax-free. Attendance Allowance is for people who are 65 or older. It s based on a person s need for help with personal care (for example with taking medication, or washing or dressing). There are two rates, depending on whether help is needed in the day or at night (lower rate), or both day and night (higher rate). You can request a claim form by calling the Benefit Enquiry Line or at uk (see Other useful organisations for contact details). Disability Living Allowance (DLA) is only available to people who claim before their 65th birthday. People who are awarded the benefit will continue to receive it after that age. 41

53 Benefit claim forms include questions about which activities the person with dementia finds difficult or impossible to carry out. They also ask about care and supervision, such as whether the person needs help with bathing or cooking. A medical assessment isn t always required for Attendance Allowance or DLA but will be for Personal Independence Payment (PIP) These benefits can be claimed whether the person lives alone or with other people. If the person with dementia is admitted to hospital or residential care for a prolonged period, any Attendance Allowance, DLA or PIP may be suspended temporarily. Carer s allowance If the person with dementia has someone who looks after them for at least 35 hours a week, that person may be entitled to Carer s allowance. They will only be eligible if the person with dementia receives Attendance allowance, the DLA care component at the highest or middle rate, or the daily living component of the new PIP at either rate. The carer doesn t have to be related to the person with dementia or live with them, but they must be 16 or over and earning less than a set amount each week. If a carer of a person with dementia is claiming Carer s allowance, the person with dementia may lose some of their own benefits. Seek advice before deciding whether the carer should claim. You can get a claim form by calling the Benefit Enquiry Line or at Other benefits There are other benefits available. For example: State pension or Pension credit- if the person with dementia or their carer is retired, check that they are getting all the State pension or Pension credit they are entitled to. Phone the Pension Service or go online to Housing benefit or Council tax support- if the person is on a low income, they may also be entitled to means-tested Housing benefit (if renting) or Council tax support. The local council can advise. Many people with dementia also qualify for reductions on their Council tax bill, irrespective of their income or savings, through Council tax discounts Winter Fuel and Cold Weather payments- when someone has reached the qualifying age they will usually be entitled to Winter Fuel payments to help with heating bills. Some people may also qualify for Cold Weather payments during very cold spells. 42

54 Putting someone else in charge of benefits If you are living with dementia, you can contact the Department for Work and Pensions to appoint someone you trust - an appointee - to receive, and manage, the money you get in benefits. The proposed appointee will have to prove that they are managing your money with your best interests in mind. DWP will monitor the situation. Making decisions for the future Everyone needs to make decisions from time to time about their health, care and finances. As dementia progresses, it will become harder for you to do this. If you re able to, think about your future, talk to others and plan ahead as soon as you can. You can make decisions and plans so that your future care and finances are handled in a way that reflects your wishes. These choices could range from how your money is managed to how you want to be cared for at the end of your life. If you have dementia, the law protects your right to: Make your own decisions and be involved in any decisions that affect you Get support with making decisions about the future that you are finding difficult to make now Put plans in place in case you are unable to make decisions in the future Appoint someone you trust to make decisions in your best interests if you can t. Wills Everyone should make a will. It allows you to choose who inherits your money and your possessions. Talk to a solicitor about making or updating a will. If you are living with dementia, you can still make a will or change it, as long as you understand the decision you re making and the implications of any changes. A solicitor can offer advice. Lasting Power of Attorney Many people with dementia choose to give someone they trust power of attorney. This means that the attorney - often a spouse or grown-up son or daughter - can make certain decisions on your behalf if you lose the capacity (ability) to do this. In all cases decisions must be made by the attorney in the best interests of the person with dementia. The legal document to set this up is called a Lasting Power of Attorney (LPA). This isn t currently available in Northern Ireland because the law is differentsee Enduring Power of Attorney on page