The dementia guide
dementiaLiving well after diagnosis About this guide
This guide is for anyone who has recently been told
they have dementia. This could be any type of dementia,
such as Alzheimer's disease, vascular dementia or
mixed dementia.
It will also be useful to close friends and family of someone with dementia, as it contains information for anyone taking on a caring role. The booklet will help people to understand more about dementia and the treatments, support and services that are available. It includes information about living as well as possible with dementia and about making plans for the future. You might choose to read the whole booklet, 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 people who may prefer to read an overview of the section rather than the whole thing. You will find a checklist on page 118. It lists some of the things discussed throughout this guide that you can do to help you live well now and plan for the future. This guide has been produced by Alzheimer's Society with support and funding from the Department of Health.
For more information visit alzheimers.org.uk
A diagnosis of dementia can cause a range of emotions. The news If you can, talk to friends and family about how you're feeling. might come as a shock, or, for some people, it may bring a sense of Other people need to understand what you're going through. relief as it provides an explanation for the problems they have been They might be finding things hard too, so talking can help both experiencing. It can also have a big impact on family and friends. you and them. There are also specialist health and social care professionals you can talk to for support.
If you, or someone close to you, have recently been diagnosed with dementia, you might be feeling angry, frustrated, worried, You will find a list of Alzheimer's Society services on page 106 fearful, sad, embarrassed, lonely, guilty or even relieved. Everyone is and other useful organisations that may be able to provide different, but all these reactions are possible at different times and information or support on page 110.
they are all normal. How you feel will probably vary from one day to the next. If you'd like to talk about the information in this guide, please
phone Alzheimer's Society's National Dementia Helpline on
0300 222 1122 – calls are charged at a low-cost rate. The Helpline
‘ We went out and celebrated when I was diagnosed,
is for anyone affected by dementia and is open 9am–5pm because I finally knew what was wrong with me.
Monday–Friday and 10am–4pm on Saturdays and Sundays. I could tell people "I have Pick's disease".'
Trained helpline advisers can provide you with information, support, guidance and signposting to other appropriate organisations.
Graham, East Sussex, living with Pick's disease Throughout this booklet you will see suggestions for
Alzheimer's Society factsheets. You can order these using the
form on page 121 or see alzheimers.org.uk/factsheets
‘ Even though we expected it, our first reaction was
For factsheets specific to Northern Ireland, please contact your to be frightened and upset. I think [my husband]
local Alzheimer's Society office.
thought it diminished him as a person and felt
ashamed. But time has changed that, because it
It's important to know that you aren't alone – about 800,000 hasn't diminished him in any way.'
people in the UK have dementia. It's possible to live well with dementia and there is support available for you and your family.
Brenda, West Sussex, carer for a person with Alzheimer's disease Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
1 About dementia
In this section
For more information visit alzheimers.org.uk
Key points: About dementia
Dementia occurs when the brain is affected by There are also some rarer conditions that cause a disease. It's not a normal part of ageing.
dementia. Together, they account for only about five per cent of all people with dementia.
Dementia affects everyone differently and can cause a wide range of symptoms. These can include Various factors increase the risk of someone problems with memory, thinking, concentration and developing dementia. Ageing, genes, health language. People may become confused or struggle and lifestyle all play a part. with how they perceive things. Dementia can also cause changes in mood or emotions and affect how Most people with dementia are over 65 years someone behaves. of age, but dementia does also affect younger people. Dementia is progressive, which means that symptoms get worse over time. However, many Some people are diagnosed with a condition people with dementia lead active and fulfil ing cal ed mild cognitive impairment (MCI). lives for many years.
This causes symptoms that are similar to dementia, but aren't as serious. People with There are many different types of dementia. MCI have a higher risk of developing dementia, The most common are Alzheimer's disease but not all of them wil . and vascular dementia, which are sometimes combined (cal ed mixed dementia). Less common are dementia with Lewy bodies and frontotemporal dementia.
The dementia guide What is dementia?
What are the symptoms?
The word dementia describes a group of symptoms that may Everyone experiences dementia in their own way. Different types include memory loss, difficulties with planning, problem-solving of dementia can also affect people differently. However, there are or language, and sometimes changes in mood or behaviour.
some common symptoms that are listed below.
Dementia isn't a natural part of ageing. It occurs when the Memory loss:
brain is affected by a disease. • problems recalling things that happened recently (although some people easily remember things from a long time ago) There are many known causes of dementia – probably more • repeating themselves (such as asking the same question than 100. The most common types are Alzheimer's disease and vascular dementia. Some people have a combination of these, known as mixed dementia. To find out more, see Types Difficulty thinking things through and planning:
of dementia on page 14. • problems concentrating, following a series of steps, grasping new ideas or solving problems • struggling with familiar daily tasks, such as fol owing a recipe or using a debit or credit card.
• There are around 800,000 people in the UK who • difficulty finding the right word have dementia.
• struggling to fol ow a conversation or misinterpreting things.
• The chance of developing dementia increases significantly with age. One in 14 people over 65 years of age, and one Being confused about time or place:
in six people over 80, has dementia. It is more common • losing track of what time, date or season it is among women than men. • not knowing where they are, even in a place they know wel .
• Over 17,000 younger people (under the age of 65) in the UK have dementia. This is cal ed early-onset or Sight and visual difficulties:
• difficulty judging distances (eg 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.
The dementia guide 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 and more support with daily activities like cooking or personal care such as washing and dressing. Dementia does shorten life expectancy, although some people live with it for many years.
At all stages there will be ways to make life better. To find out more, see sections Living well on page 39, Services for people with dementia on page 71 and Support for carers on page 85.
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 cel s.
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 on page 14.
The dementia guide Why do some people get dementia?
There is also a shortage of some important chemicals in the brain when someone has Alzheimer's disease. Reduced levels of these Scientists are still researching why some people get dementia while chemicals mean messages don't travel around the brain as wel others don't. Most now believe it depends on a combination of as they should.
age, genes, health and lifestyle. For more information see factsheet 450,
Alzheimer's disease usually begins gradually with mild memory Am I at risk of developing dementia?
loss. This is because the first changes in the brain are often in the part that controls memory and learning. A person with Alzheimer's disease might forget people's names or where they have put things. They might also have problems with language, such as Types of dementia
finding the right word for something. There are many known types of dementia. Around 95 per cent Other early symptoms include feeling confused or finding it hard of people with a diagnosis will have one of the four main types to fol ow what is being said. Some everyday activities might seem – Alzheimer's disease, vascular dementia (or a mixture of these challenging, for example, someone might get muddled checking two, called mixed dementia), dementia with Lewy bodies or change at the shops. Some people also become more withdrawn frontotemporal dementia – all described on the fol owing pages. and experience mood swings.
Alzheimer's disease is the most common type, fol owed by vascular For more information see factsheet 401,
dementia. To find out about rarer causes of dementia, and a related What is Alzheimer's disease?
condition known as mild cognitive impairment, see page 21. For more information see factsheet 400,
What is dementia?
Inside the brain
The word ‘vascular' relates to blood vessels. Vascular dementia
results from problems with the blood supply to the brain – without enough blood, brain cel s can die.
Inside the brain
Abnormal material called ‘plaques' and ‘tangles' builds up in the
There are several types of vascular dementia. One type is caused brain. This disrupts how nerve cel s work and communicate with by stroke (called stroke-related dementia). Another is caused by each other, and the affected nerve cel s eventually die.
poor blood supply to deep parts of the brain (called subcortical vascular dementia). Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Strokes happen when a blood clot blocks the flow of blood to part of the brain, or when a blood vessel bursts in the It's possible for someone to have more than one form of dementia brain. Vascular dementia sometimes fol ows a large stroke. – cal ed mixed dementia. The most common combination is More often though, it comes after a number of small strokes Alzheimer's disease with vascular dementia. It's also possible to (cal ed multi-infarct dementia). have a combination of Alzheimer's disease and dementia with Lewy bodies.
Subcortical vascular dementia – when there is poor blood flow to the deep parts of the brain – is often due to narrowing of the Dementia with Lewy bodies
arteries supplying the brain. Inside the brain
This form of dementia gets its name from tiny abnormal structures If someone has had a large stroke, symptoms of vascular dementia called Lewy bodies that develop inside brain cel s. Similar to the can begin suddenly. Symptoms can then remain stable or even plaques and tangles of Alzheimer's disease, these structures get a little bit better over time in the early stages. If the person disrupt the way the brain functions, reducing levels of chemical has another stroke, these symptoms might get worse again.
messengers and causing cel s to die. If someone has a series of small strokes, their symptoms may Lewy bodies are also found in people with Parkinson's disease. remain stable for a while and then get worse in stages (rather One third of people who have Parkinson's disease eventually than have a gradual decline). With subcortical vascular dementia, develop dementia (cal ed Parkinson's disease dementia).
symptoms may get worse gradually or in stages.
The symptoms of vascular dementia will depend on which part of People who have dementia with Lewy bodies might find it hard to the brain has been damaged. Some people might have physical remain alert and have difficulties planning ahead, reasoning and weakness on one side due to a stroke. Other changes include solving problems. These symptoms typically vary a lot from one difficulty thinking quickly or concentrating and there might be day to the next.
short periods when they get very confused. Some people might also become depressed or anxious. Memory loss isn't always a People might have problems with how they see things. For example, common early symptom.
it might be hard to judge distances or they might mistake one object for another. Many people see things that aren't really there For more information see factsheet 402,
(visual hallucinations). Disturbed sleep patterns are also common.
What is vascular dementia?
However, if someone has dementia with Lewy bodies, their memory will often be affected less than someone with Alzheimer's disease.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
Many people with dementia with Lewy bodies also develop symptoms like those in Parkinson's disease, including shaking (especially in the hands), stiffness and difficulty moving around.
For more information see factsheet 403,
What is dementia with Lewy bodies (DLB)?
Inside the brain
The term frontotemporal dementia covers a range of conditions.
It was originally called Pick's disease and this term is sometimes
still used. Frontotemporal dementia mostly affects people in their
40s, 50s and 60s (younger than most people who get Alzheimer's
disease or vascular dementia). It's caused by damage to areas of
the brain called the frontal and temporal lobes. These areas control
behaviour, emotional responses and language skil s.
In most cases, abnormal proteins col ect within brain cel s in these lobes and cause the cel s to die. Important chemicals that carry messages around the brain are also affected.
Early symptoms
There are three different forms of frontotemporal dementia –
behavioural variant, semantic dementia and progressive
non-fluent aphasia.
With behavioural variant frontotemporal dementia, changes in personality or behaviour are often noticed first. The person might seem withdrawn or not to care as much about other people. They might make socially inappropriate remarks. They may also become obsessive or impulsive, for example developing fads for unusual foods.
For more information visit alzheimers.org.uk
The dementia guide When someone has semantic dementia their speech is usually Rarer causes of dementia
fluent but they lose the meaning or understanding of some words. A wide range of other conditions can lead to dementia. These are Language is also affected in progressive non-fluent aphasia. rare, and together account for only about five per cent of all people Speech is often slow and requires a lot of effort. with dementia. However, they are more common in younger people with dementia. People in the early stages of frontotemporal dementia often don't experience day-to-day memory loss.
These diseases include: • corticobasal degeneration For more information see factsheet 404,
• Creutzfeldt-Jakob disease What is frontotemporal dementia?
• HIV-related cognitive impairment• Huntington's disease• alcohol-related brain damage and Korsakoff's syndrome Dementia in younger people (early-onset dementia)
• multiple sclerosis More than 17,000 people in the UK now living with dementia • Niemann-Pick disease type C were diagnosed before they reached the age of 65. The terms • normal pressure hydrocephalus ‘early-onset dementia', ‘young-onset dementia' and ‘working • progressive supranuclear palsy.
age dementia' are used to describe their diagnosis. For more information see factsheet 442,
People under 65 can develop any type of dementia. However, Rarer causes of dementia
they are more likely than older people to have a less common type, such as frontotemporal dementia or another dementia with a genetic cause. Only a third of younger people with dementia have Alzheimer's disease.
Mild cognitive impairment
While many of the symptoms are similar, younger people with Some people are diagnosed with mild cognitive impairment (MCI) dementia may have different support needs from older people, if they have problems with their memory, thinking, language or as they may have younger families and still be working. Younger the way they see and interpret things (visuospatial skil s), but these people may also have different interests and expectations of aren't severe enough to be dementia. People with MCI have an how they can continue to live well with dementia.
increased risk of developing dementia, but some don't develop dementia and a few will even get better.
For more information see factsheet 440,
Younger people with dementia
For more information see factsheet 470,
Mild cognitive impairment
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
2 Treatments
In this section
For more information visit alzheimers.org.uk
Key points: Treatments
There is no known cure for dementia, but there A person with vascular dementia wil usually are drugs and other therapies that can help with be prescribed drugs to treat any underlying some of the symptoms. With a combination of conditions, such as high blood pressure or these, lots of people can live well with dementia heart problems.
for many years.
People with dementia can also benefit from Four drugs have been developed to treat approaches that don't involve drugs. One example Alzheimer's disease. Donepezil (eg Aricept), is reminiscence therapy, which involves talking rivastigmine (eg Exelon) and galantamine about things from the past, using prompts such (eg Reminyl) are for people in the early and middle as photos or music. Another example is cognitive stages of the disease; memantine (Ebixa) is for stimulation, which might involve doing word those in the later stages. The names in brackets puzzles or discussing current affairs.
are common brands of these drugs. People with dementia may experience depression These drugs lessen symptoms of Alzheimer's or anxiety. They are often prescribed disease for a while in some people. They are antidepressant drugs and may be offered talking sometimes given to people with mixed therapies, such as counsel ing or cognitive 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.
The dementia guide Drugs to treat dementia
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.
Other physical il nesses need to be treated too – see Staying healthy on page 48.
Four drugs have been developed to tackle some of the physical changes in the brain that cause Alzheimer's disease. Donepezil, rivastigmine and galantamine
People who have mild to moderate Alzheimer's disease may be
prescribed donepezil (for example Aricept), rivastigmine (for
example Exelon) or galantamine (for example Reminyl). The names
in brackets are common brands of these drugs. People who have
mixed dementia in which Alzheimer's disease is the main cause
may also be prescribed these.
These drugs are initially prescribed by a specialist, such as a geriatrician (for older people) or neurologist (for diseases of the brain and nervous system) in a hospital or a psychiatrist at a memory clinic. The GP will generally then take over routine prescribing with a review by the specialist every six months.
The three drugs all work in a similar way and offer similar benefits.
They work by increasing the amount of a chemical called
acetylcholine which helps messages to travel around the brain.
People with Alzheimer's disease have a shortage of this chemical.
Call the National Dementia Helpline on 0300 222 1122
The dementia guide Possible benefits Some people find these drugs lessen their symptoms for a while. The four drugs described in the previous section aren't Possible benefits include improvements in motivation, anxiety recommended for vascular dementia unless this is part of mixed levels, confidence, daily living, memory and thinking. dementia with Alzheimer's disease.
Possible side effects It may be possible to slow down the progression of vascular Side effects are usually minor – often loss of appetite, nausea, dementia by taking drugs that treat the underlying conditions. vomiting and diarrhoea. If one of the drugs causes problematic The GP will often prescribe drugs for people with vascular dementia side effects, it's possible to switch and try another.
who are at risk of having a stroke or heart attack by treating high blood pressure, high cholesterol, diabetes or heart problems. (In many cases the person will already be taking some drugs to People who have moderate Alzheimer's disease but can't take control these conditions.) any of the three drugs listed on page 26, for example because of the side effects, might be offered memantine (Ebixa). It is also becoming more common to be offered memantine in the later stages of Alzheimer's disease when symptoms become severe.
Dementia with Lewy bodies
Someone with dementia with Lewy bodies might be offered one
Memantine works by protecting brain cel s from the harmful effects of the three anti-Alzheimer's drugs (donepezil, rivastigmine or of a natural substance called glutamate. People with Alzheimer's galantamine). In particular, they may benefit from one of these if disease often have harmful y high levels of glutamate in their brains. they have distressing symptoms, such as seeing things that aren't there (hallucinations) or believing things that aren't true (delusions).
Possible benefitsMemantine can temporarily slow down the progression of symptoms in people in the middle and later stages of Alzheimer's The anti-Alzheimer's drugs haven't been shown to offer any disease. It may also help with agitation or aggressive behaviour, benefits to people with frontotemporal dementia and may even both more common in later stages of dementia.
be harmful. They are not approved for treating frontotemporal dementia and generally shouldn't be prescribed. Possible side effectsMemantine usually has fewer side effects than the other three It's common for people with behavioural variant frontotemporal drugs, although it can still cause dizziness, headaches, tiredness, dementia to be prescribed antidepressant medication. This can increased blood pressure and constipation. reduce inappropriate and obsessive or compulsive behaviours.
For more information see factsheet 407,
Drug treatments for Alzheimer's disease
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Questions to ask the doctor
Drugs aren't the only way to treat or manage the symptoms of • Are there any medications that can help me? dementia. There are many other things that can help people to • Why are you offering me this medication? live wel . These include a range of therapies such as talking • How do I take this medication? therapies, reminiscence therapy, cognitive stimulation therapy – What happens if I miss a dose? and complementary therapies. – Can I stil take my other medication? – Can I drink alcohol? • What are the pros and cons of this medication? Talking therapies, such as counsel ing (see below) or psychotherapy – How wil it help me? (see page 32), give people the chance to speak in confidence to – How wil it affect my symptoms? a qualified professional about problems or issues that might be – How wil it improve day-to-day life? bothering them. They might help someone to come to terms – Might I suffer any side effects? with a diagnosis and identify ways to live well with dementia. – What changes should I tel you about? Talking therapies may also help with symptoms of depression or • Are there other treatments I could try instead? anxiety (see page 36). • Have you got any information I could take away? Talking therapies typically involve regular sessions with a therapist, either one-to-one or sometimes in a group. They can be face-to-face, over the phone or online. Some people will have just one session while others will have therapy that continues for many months. Counselling
Counsellors listen to problems in a non-judgemental and supportive
way. They support people to talk about their difficulties and
identify solutions.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide When choosing a private therapist it's important to ask about what Psychotherapists help people to understand how their personalities they can offer that will help, their approach, confidentiality and fees, and life experiences influence relationships, thoughts, feelings and and whether they are accredited by a professional organisation.
behaviour. Understanding this can make it easier for people to deal with difficulties.
For more information see factsheet 445,
Talking therapies (including counselling,
There are several different types of psychotherapy. One of the psychotherapy and CBT)
most common types is cognitive behavioural therapy (CBT) (see below). Family therapy can also be helpful to resolve problems arising due to changes in relationships.
‘ Before his diagnosis I thought it was me, that I
was imagining things. It helped me to talk to a
Psychotherapy may help to treat depression, anxiety and counsellor at the time. [My husband] went to see
problematic behaviour in people with dementia.
him a few times too. We both found it useful.'
CBT aims to help people make changes to how they think Wendy, Powys, carer for a person with dementia (cognition) and what they do (behaviour). These changes can improve the way people feel. CBT suggests ways of making things easier by focusing on the here and now. It's widely used to treat Other non-drug treatments
depression and anxiety, and there is growing evidence that it There are other non-drug treatments that may be helpful as can also help people with dementia and depression. CBT usually dementia progresses. Some of the more common approaches are involves between five and 20 sessions. A carer might attend the reminiscence therapy or life story work and cognitive stimulation. sessions too so they can then help the person with dementia to However, what is available and how to be referred can vary around use the techniques at home.
the country. Ask your GP, memory service or local Alzheimer's Society for details. Finding a therapist for talking therapies
For therapy to be successful, people need to build a good
relationship with a therapist they trust. A person with dementia
will benefit from seeing a therapist who has experience and
understanding of the condition.
The GP, memory service or local social services department should have details of local therapists. Ask about a referral. Some talking therapies are available free through the NHS while private therapists will charge.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Reminiscence therapy and life story work
Reminiscence therapy involves talking about things from the past, using prompts such as photos, familiar objects or music.
eatm Life story work is usually shared between the person with dementia
and a family member, friend, or support worker. A scrapbook or photo album is used to record details of the person's life experiences, values and beliefs. Sometimes these approaches are combined using a memory box of favourite possessions or memorabilia. Techniques like this are popular because they draw on early memories, which people with dementia tend to retain best.
There is evidence that reminiscence therapy and life story work, particularly when done one-on-one, can improve mood, wel being and some mental abilities such as memory. By talking about who they are, people with dementia can help others focus on them, and not their dementia.
Cognitive stimulation therapy
Cognitive stimulation therapy (CST) is done in small groups and
initially involves a programme of themed activity sessions over
several weeks. It might involve doing word puzzles or discussing
current affairs in one session and playing an instrument along to
music in another. CST also includes elements of reminiscence
therapy. There is evidence that cognitive stimulation approaches
such as CST improve mental abilities and quality of life.
Call the National Dementia Helpline on 0300 222 1122
The dementia guide Complementary therapies are a broad range of treatments, Drugs are just one approach to treating depression and anxiety. which are outside of conventional medicine. They are used to Antidepressant drugs work by correcting the level of some treat or prevent il ness and promote health and wel being.
chemicals in the brain. However, research shows that common antidepressants don't work as well for depression in people with Some complementary therapies that may help people with dementia as for those without dementia.
• aromatherapy – particularly with lemon balm and lavender It can take several weeks for someone to notice the benefits of taking an antidepressant. Many people experience some side • bright light therapy (sitting in front of a light box) effects to begin with, but these usually lessen after a week or two. • music therapy.
The GP might advise people to try different antidepressants, at different doses, to find what works best. Complementary therapy should be used alongside (not instead of) conventional medicines. Anyone thinking about trying these Benzodiazepines (another type of drug commonly used to treat therapies should tell their GP. The GP might be able to make a anxiety) aren't generally suitable for people with dementia because referral through the NHS or suggest practitioners in the local area.
they can cause severe drowsiness or increase confusion, and are addictive if used for more than two weeks. Alternative drugs for For more information see factsheet 434,
anxiety are available – speak to your GP.
Complementary and alternative therapies
and dementia
There are other ways to treat depression and anxiety that don't involve taking drugs. These include talking therapies (such as CBT), reminiscence activities and life story work. To find out more, see Treating depression and anxiety
Non-drug treatments on page 31.
People with dementia – particularly vascular dementia or Other simple things that can help with depression and anxiety Parkinson's disease dementia – may experience depression include keeping active, doing enjoyable activities and talking to friends and family. Eating a healthy diet and not having too much alcohol or caffeine can also help. Depression and anxiety – mood disorders – are more common in the early stages of dementia. In later stages someone is more likely to develop behaviour that seems out of character. Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
3 Living well
In this section
For more information visit alzheimers.org.uk
Key points: Living well
If you've been diagnosed with dementia, there are lots of things you can do that will help you Ask an occupational therapist (a health to live as well as possible. professional who supports people to maintain everyday skills) for advice on activities.
To help you cope with memory problems you could try using a large diary, and perhaps keeping Having dementia doesn't mean you should feel it next to a calendar clock. Also try keeping unwell or depressed. It's important to try and stay important items, such as keys or glasses, together healthy. Regular exercise and eating a balanced in the same place.
diet can help. If you smoke, try to stop.
Try to make your home safer. Remove things that Arrange regular checkups with your GP, as are easy to trip over and install carbon monoxide well as regular dental, eye and hearing checks. detectors and smoke alarms. You could also get Get the annual flu vaccine and see the doctor automatic timers for plugs, lights and heating.
promptly if you feel unwel .
Try to stay active and social: it can help you retain skil s and memory, as well as improve your self-esteem, sleep and wel being. Wherever possible, keep doing what you enjoy, even if you have to do it a little differently. The dementia guide A positive outlook
Coping with memory loss
Living with dementia is challenging and you may feel angry or Memory loss can be distressing and undermine your confidence. frustrated about what's happening to you. There are lots of practical things that can help. You might try some of the following: Your plans for the future might change, but dementia doesn't • Keep a notebook or large ‘week to view' diary. Write down things change who you are. A diagnosis of dementia doesn't mean that you want to remember, such as names or to-do lists. Keep the you need to stop doing the things that you enjoy, but you might diary by the kettle or phone, so you get used to referring to it.
have to do them in a different way. • Put labels or pictures on cupboards to help remind you where things are. Or you could keep frequently used items – a cup, plate There are some practical things that you can do to help you live as and cutlery – out on a table.
well as possible. Focus on the things you can and want to do, and • Place useful telephone numbers by the phone. try not to become isolated. Keeping busy with activities you enjoy • If you find it helps, put a note on the door to remind yourself may help you to feel more confident.
to lock up at night. • Ask your pharmacist about putting your pil s in a disposable dosette box which has the days of the week marked on it. ‘ You must carry on doing the things you enjoy, and
not sideline yourself from your friends and family or
For more information see factsheet 526,
Coping with memory loss
clubs and groups. We've always led busy lives, going
out and about – and we still do.'
Brenda, West Sussex, carer for a person with dementia 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.
For more information see factsheet 437, Assistive
technology – devices to help with everyday living
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Making things easier
Keeping safe at home
• Put a regular routine in place – you might find it reassuring Having dementia can make accidents at home more likely. There is to do things at the same time each day or week. a range of equipment available that can help you stay safe, from • Keep things straightforward – simplify your routine or personal alarms to timers that switch off electrical items. It can daily tasks to make them more manageable. be easier to get used to them if you do so early on, rather than • Take things one step at a time – try to focus on introducing them if an emergency or crisis arises in the future. one thing at a time and break each task down into a step-by-step process. You might want to consider these ideas: • Don't be afraid to ask questions – there is nothing wrong • Prevent falls by making sure the house is well lit and removing with asking someone to repeat or explain something. trip hazards, such as rugs. Have handrails fitted on the stairs or • Don't feel like you have to rush things – give yourself in the bathroom.
plenty of time and take things at a slower pace if you • 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.
For more information see factsheet 503,
Safety in the home
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Being active
You might find that activities take you longer than they did before. You might need to make changes to the way you do Keeping as active as possible – physically, mentally and socially – things, or have some support to do them. It's important to will bring great benefits. It can help you meet people, retain skil s adapt to these changes, rather than not doing the activity at all. 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 • playing games or cards and doing word, number or • reading books, newspapers or magazines• 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. 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. For more information see factsheet 521,
Staying involved and active
Call the National Dementia Helpline on 0300 222 1122
The dementia guide Visiting the doctor regularly means that any other health problems Having dementia doesn't mean you should feel il , depressed or that could make your dementia appear worse should get picked anxious. It's important that you check with the doctor if you're up quickly. This is especially important if you also have diabetes, or feeling unwel , because other il nesses and infections can make heart or breathing problems. you more confused and forgetful. You might find the fol owing tips useful: • have regular sight and hearing checks • Try to eat balanced meals and drink plenty of fluids.
• have regular dental checkups • Take regular physical exercise if you can. • pay attention to foot care and make sure your shoes fit wel .
• If you enjoy the occasional alcoholic drink, you might want to keep doing this (unless your GP advises you not to). For more information see factsheet 522,
• If you smoke, consider stopping.
• Keep warm. • Get enough sleep. • If you find yourself regularly feeling low, anxious or irritable, you may be depressed. This can be treated, so talk to someone close to you about it. See your GP if it continues or gets worse.
• Have the flu vaccine each year and ask about the pneumonia vaccine for over-65s if this applies. ‘ I don't in many ways think of myself as being ill.
Most of the things I could do, I can still do, just
not in the same way.'
Rusty, Wiltshire, living with Alzheimer's disease Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
4 Planning ahead
In this section
For more information visit alzheimers.org.uk
Key points: Planning ahead
After you've had time to adjust to your diagnosis, Make sure you have an up-to-date wil . Consider make sure your financial and other affairs are in setting up a Lasting Power of Attorney. This wil al ow someone you trust to make decisions on your behalf if you're no longer able.
There are things you can do to make managing money easier. Talk to your bank about a ‘third-party To have a say in your future medical care, you mandate' which will al ow someone else to deal can also set up an advance decision. Talk to your with your bank account. Consider getting a ‘chip GP or solicitor about this. and signature' card, so you don't have to remember a PIN number.
If you drive, you must tell the Driver and Vehicle Licensing Agency (DVLA) in Great Britain or You and your carer may be entitled to a range of Driver and Vehicle Licensing Northern Ireland benefits. If you have dementia you may be eligible (DVLNI) about your diagnosis. You will find their for Attendance al owance, or (if under 65) Disability contact details on page 114. You must also tel living allowance or the new Personal independence your car insurer.
payment. Your carer may also be eligible for Carer's allowance. Ask social services, a Citizens Advice If you're working when you're diagnosed with Bureau or Age UK for advice. You wil find their contact dementia, you may choose to carry on doing so. details in the Other useful organisations section It's important to talk to your employer. starting on page 110.
If you stop working or reduce your hours, you Now is the time to plan ahead and talk to others about may be eligible for some further benefits. the future. If you're able, try to do it as soon as you can.
The dementia guide 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 wil .
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.) If they aren't already in place, consider setting up direct debits for regular payments such as gas and electricity bil s. That way they will get paid automatically and may also be cheaper.
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.
Call the National Dementia Helpline on 0300 222 1122
The dementia guide 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 People with dementia and their carers may be entitled to a range apply in the future if you reach a point where you no longer have of benefits. Some are means-tested so they depend on income capacity (ability) to make decisions for yourself. See Lasting Power or savings. Accessing them can seem complicated but there are of Attorney on page 61 for information on how to arrange for people who can advise on what to claim for and help you to someone you trust to make decisions on your behalf in the future. complete the forms (which can be long and detailed).
Debit and credit cards
Try to get help from someone with experience of these forms to If you have memory problems, you may find it difficult to complete them with you. Help may be available from a social remember PIN numbers for debit or credit cards that have a worker, a local welfare rights service, a Citizens Advice Bureau or ‘chip and PIN' device. Talk to the bank about alternatives, such Age UK, as well as the Benefit Enquiry Line and the Department for as a ‘chip and signature' card or photocard. 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 If you have property or savings, you might set up a trust. This wil home (see Other useful organisations starting on page 110).
ensure things are managed the way you have chosen, now and in the future. Seek advice from a solicitor or financial adviser.
Types of benefits
For more information see factsheet 467,
Attendance allowance, Disability living allowance and
Financial and legal affairs
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 www.gov.uk (see Other useful organisations for contact details).
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Disability living allowance (DLA) is only available to people who claim before their 65th birthday. People who are awarded the There are other benefits available. For example: benefit will continue to receive it after that age. There is more • State pension or Pension credit – if the person with dementia about DLA (and the new Personal independence payment – PIP – or their carer is retired, check that they are getting all the State which is replacing it) in the section Benefits for people of working pension or Pension credit they are entitled to. Phone the Pension age with dementia on page 68.
Service or go online to www.gov.uk • Housing benefit or Council tax support – if the person is on a Benefit claim forms include questions about which activities the low income, they may also be entitled to means-tested Housing person with dementia finds difficult or impossible to carry out. benefit (if renting) or Council tax support. The local council can They also ask about care and supervision, such as whether the advise. Many people with dementia also qualify for reductions person needs help with bathing or cooking. A medical assessment on their Council tax bil , irrespective of their income or savings, isn't always required for Attendance allowance or DLA but will be through Council tax discounts.
• Winter fuel and Cold weather payments – when someone has reached the qualifying age they will usually be entitled to Winter These benefits can be claimed whether the person lives alone fuel payments to help with heating bil s. Some people may also or with other people. If the person with dementia is admitted to qualify for Cold weather payments during very cold spel s.
hospital or residential care for a prolonged period, any Attendance allowance, DLA or PIP may be suspended temporarily. For information about benefits specifically for people of working age, see page 68.
Carer's allowance
If the person with dementia has someone who looks after them
For more information see factsheets 413, Benefits
for at least 35 hours a week, that person may be entitled to Carer's and 431, Benefit rates and income/savings thresholds
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 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 The carer doesn't have to be related to the person with dementia ‘appointee' – to receive, and manage, the money you get in or live with them, but they must be 16 or over and earning less benefits. The proposed appointee will have to prove that they are than a set amount each week. If a carer of a person with dementia managing your money with your best interests in mind. DWP wil is claiming Carer's allowance, the person with dementia may lose monitor the situation.
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 www.gov.uk Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Making decisions for the future
Lasting Power of Attorney
Many people with dementia choose to give someone they trust Everyone needs to make decisions from time to time about their ‘power of attorney'. This means that the ‘attorney' – often a health, care and finances. As dementia progresses, it will become spouse or grown-up son or daughter – can make certain decisions harder for you to do this. If you're able to, think about your future, on your behalf if you lose the capacity (ability) to do this. In all talk to others and plan ahead as soon as you can. You can make cases decisions must be made by the attorney in the best interests decisions and plans so that your future care and finances are of the person with dementia.
handled in a way that reflects your wishes. These choices could range from how your money is managed to how you want to be The legal document to set this up is called a Lasting Power of cared for at the end of your life. Attorney (LPA). This isn't currently available in Northern Ireland because the law is different – see Enduring Power of Attorney If you have dementia, the law protects your right to: on page 62. There are two types of LPA: • make your own decisions and be involved in any decisions • LPA for health and welfare (a personal welfare LPA) – this
allows the attorney to make decisions about the healthcare and • get support with making decisions about the future that you welfare of the person with dementia. It can include decisions are finding difficult to make now about whether to refuse or give consent to medical treatment. • put plans in place in case you are unable to make decisions It can also cover where the person lives. • LPA for property and affairs – this can give the attorney
• appoint someone you trust to make decisions in your best powers such as paying bil s, col ecting income and benefits, interests if you can't.
accessing bank accounts and sel ing a house on behalf of the person with dementia. Everyone should make a wil . It allows you to choose who inherits The forms needed to apply for an LPA are available for free from your money and your possessions. Talk to a solicitor about making the Office of the Public Guardian (by phone or online) and to or updating a wil . buy at some stationery shops. See Other useful organisations starting on page 110 for contact details. Many people pay a solicitor If you are living with dementia, you can still make a will or change to help them complete the LPA forms, but you don't have to do this. it, as long as you understand the decision you're making and the implications of any changes. A solicitor can offer advice.
If someone with dementia decides to set up an LPA, they need to do this while they still have the mental capacity to do so. The LPA will need to be registered with the Office of the Public Guardian before it can be used. There is a fee for this.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide There are some important differences between the two types Getting legal advice
of LPA. A personal welfare LPA can only be used if the person's dementia means they have lost the capacity to make such If you decide to pay for a solicitor, you may want to talk to a few decisions. If an LPA for property and affairs is set up, a person different ones and compare prices and services. It's important with dementia can choose to hand over responsibility for financial to find a solicitor you are comfortable with and whose advice affairs earlier, while they still have mental capacity. you trust and understand.
Enduring Power of Attorney
Your local Citizens Advice Bureau may be able to offer To give someone power of attorney in Northern Ireland, you wil advice, or you can search the Solicitors for the Elderly website need to make an Enduring Power of Attorney (EPA). Talk to your or phone them to find a solicitor in your area. You can solicitor about setting this up. also find a local solicitor on The Law Society website. (See Other useful organisations starting on page 110 for In England and Wales EPA was replaced by LPA in October 2007 contact details.) (see page 61). An EPA only covers property and affairs (not health and welfare). EPAs made before this date are still valid but you can no longer make a new EPA (unless you live in Northern Ireland). For more information see factsheet 472,
Deputies and controllers
Lasting Powers of Attorney
If someone with dementia no longer has the capacity to make a power of attorney, in England and Wales a family member or close friend can be appointed as a ‘deputy'. They would be appointed Other ways to plan for future care
by the Court of Protection fol owing a legal process which is more If you have been diagnosed with dementia, you can choose to expensive than setting up an LPA and can take several months. make decisions about your future care in a range of ways other than an LPA. Discussing views and preferences about the future Deputies must act in the person's best interests and the decisions with family and health or social care professionals is called advance they make can be checked annually by the Court of Protection.
care planning. This can cover one or more of: • Lasting Powers of Attorney (see page 61) In Northern Ireland a ‘control er', similar to a deputy, can be • advance statement (see page 64) appointed by the Office of Care and Protection to make property • advance decision to refuse treatment (see page 64) and financial decisions. • ‘do not resuscitate' order – a decision not to have your heart or breathing restarted if they stop.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Discussions about care at the end of life can be difficult for people If you're considering an advance decision, seek advice from your with dementia and their families. There shouldn't be any pressure GP. They will advise about the advantages of choosing or refusing on you to have these discussions. particular medical treatments. You may also want to talk to a solicitor to make sure the content and wording of the advance If you have dementia and you do want to plan ahead, you wil decision is correct. Speak to your close friends or relatives about need to have the capacity to do so. If you're thinking about your advance decision as involving them will help them understand advance care planning, it's important to do it as soon as you can.
For more information see factsheet 463,
If you want to, you can write down your priorities and preferences Advance decisions and advance statements
for the future. This is called an advance statement – it might cover where you would like to be cared for or how you like to do day-to-day things. It's used if you're in a position in the future where you cannot decide for yourself.
Unlike the other documents mentioned previously, an advance Having a diagnosis of dementia doesn't necessarily mean statement isn't legally binding. But it should be taken into account you have to stop driving straightaway. But it does mean tel ing when deciding what is in your best interests. You will need to sign it, certain people and possibly taking a driving assessment. As tell people about it, and keep it somewhere safe.
dementia progresses, there will be a time when stopping driving becomes essential. Advance decision to refuse treatment
If you would like to make sure you have a say in your future
If you have a driving licence, the law says you must inform the medical care, you can make an advance decision (in England and Driver and Vehicle Licensing Agency (DVLA) in Great Britain or Wales) or an advance directive (in Northern Ireland). This legal Driver and Vehicle Licensing Northern Ireland (DVLNI) promptly document enables you to refuse, in advance, specific medical about your diagnosis of dementia. You must also tell your car treatments or procedures in case you become unable to decide insurance company. this for yourself. Decisions might include whether to be resuscitated if your heart stops, for example. You can't use an advance decision The DVLA or DVLNI will request a report from your doctor and or advance directive to refuse basic care such as food, drink and might also ask you to take a driving assessment. The DVLA or DVLNI will use these to decide whether you can still drive. Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
Many people with dementia choose to stop driving voluntarily. It's best to stop if you feel less confident or become confused even on familiar routes. Having to stop driving can be difficult to adjust to but there can be some benefits. These include feeling less stressed and saving money on insurance and fuel. Taking control of alternative travel options, such as getting a free bus pass, can help you with the transition, as can talking through how you feel with family and friends.
For more information see factsheet 439,
Driving and dementia
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. 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. For more information visit alzheimers.org.uk
The dementia guide Talking to your employer
• Working tax credit – this is a means-tested benefit that can be In some jobs you're legally obliged to tell your employer about your claimed by some people who are working and on a low wage. diagnosis, so you will need to check your contract. If you drive as Working tax credit is being phased out from 2014, and will be part of your job, you should let your employer know straightaway.
replaced by Universal credit (see below).
You might feel anxious about tel ing your employer about your • Statutory sick pay – this can be paid for up to 28 weeks if diagnosis, but doing so will help give you protection under the law. someone has a job but has been sick and unable to work. It isn't Once your employer knows, they must try to make ‘reasonable affected by any savings. This benefit is paid by the employer, adjustments' so you can keep working if you're able.
who can give information about claiming.
Leaving work
• Employment and support allowance – this is the main benefit for At some stage, you might decide to stop working or retire early. people of working age who are unable to work due to ill health. It's important to seek advice about your pension rights. This is It can be based on either a National Insurance record or a means particularly important because the State pension age is changing test. It can also provide some support for paying mortgage interest.
for some people.
• Income support – this is a means-tested benefit paid to certain Benefits for people of working age with dementia
people, including some carers, who aren't expected to look for People of working age with dementia might be eligible for a work. It's intended to provide for basic living expenses and can range of benefits. Depending on individual circumstances these be paid on top of other benefits such as Carer's allowance. People who were receiving Income support because of sickness or disability will gradually have this replaced with Employment • Disability living allowance (DLA) or, from June 2013, Personal and support allowance.
independence payment (PIP). These are based on daily living, care and mobility needs, not on the dementia diagnosis. • Housing benefit and Council tax support (see Other benefits They aren't means-tested or based on National Insurance contributions. There are two components to DLA: personal care needs and mobility needs (for example difficulty walking It's important to have a full benefits check. Speak to an adviser outside), with different rates for each component according to at the Benefit Enquiry Line, Age UK or Citizens Advice Bureau.
how much help is needed. However, DLA is being phased out. From June 2013, new claims for DLA won't be taken and people under 65 will need to apply for PIP instead. PIP will have daily There will be changes to the benefit system in 2013. The new living and mobility components. (If you already receive DLA you Universal credit will replace many working-age means-tested will be transferred to PIP some time before March 2018.) benefits in Great Britain from October 2013 and Northern Ireland from April 2014.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
5 Services for people Serv
ices for pe
In this section
For more information visit alzheimers.org.uk
Key points: Services for people
There is support available to help you live wel Lots of different health and social care and stay independent for as long as possible.
professionals can support you – from community nurses to social workers and The main sources of information and support are dementia support workers.
the NHS, social services, private companies, and charities and not-for-profit organisations.
If you need non-medical support at home, the first step is to ask social services for a community To find services in your area, start by contacting care assessment.
your local memory service, social services department, GP, Alzheimer's Society or Citizens Social services will draw up a care plan that looks Advice Bureau. NHS Choices also provides details at how they can meet your needs. They may of local services.
charge you for some services or they may cover the costs, possibly in the form of a personal budget Organisations such as Alzheimer's Society or direct payment (money from the local authority and Age UK can support people with dementia, that you use to pay for your care and support).
their families and carers in a range of ways. These include dementia support workers There are some services specifical y designed and support groups, telephone helplines and for the different needs of younger people with information materials. You will find contact dementia. Your memory clinic, GP or local details on pages 106–117.
Alzheimer's Society can tell you about what is available in your area.
The dementia guide 5 Services for people with dementia Where to go for support
There are a wide range of NHS professionals who can help, such as: A diagnosis of dementia can be daunting and raises many questions • medical specialists, eg psychiatrists (for mental health), about the future. Asking for help can feel difficult, particularly if geriatricians (for older people) and neurologists (for diseases you've always been independent. You might not feel you need it of the brain and nerves) straightaway, but it can be useful to know that a wide range of • nurses, eg practice nurses, district or community nurses, information and support is available. For example, health and social community psychiatric or community mental health nurses, care professionals can support you in a number of ways. Attending and specialist dementia nurses such as Admiral Nurses a support group can help you to meet people in a similar situation • psychologists (for assessment of memory problems and and share your feelings, experiences and useful information. This talking therapies) support can help you to enjoy a good quality of life and to live in • audiologists (for hearing) your own home for longer, if that is what you would like to do. • optometrists (for sight) • dentists (for teeth) Most people will know how to contact their GP for free healthcare. • physiotherapists (for exercise and mobility) You might not know as much about the social care and support • chiropodists (for feet) system offered by the local authority (council). It provides or • occupational therapists (for maintaining everyday skil s) arranges a variety of non-medical care and help. Some services • speech and language therapists (also help with problems are free but you may have to contribute to the costs of others, related to swal owing) depending on your income and savings. • counsel ors (for talking therapies)• dietitians (for advice on diet and nutrition).
National Health Service (NHS)
Most people will have already used health services through the NHS such as a GP or specialist (for example a consultant). You may also ‘ I had the strength of a really wonderful community
have attended a memory clinic. Services provided by the NHS are free.
psychiatric nurse. Her main brief was to help
[my wife] but along the way she gave me lots of
guidance on caring and on aspects of the illness
I didn't understand. I could call her and email her
with any questions. She was a tremendous help.'
David, Northamptonshire, carer for a person with Pick's disease Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 5 Services for people with dementia Social services and social care
Information and advice from social services are free for everyone. Social services staff can help work out what care and support It's also free to have your needs assessed (see How to access social someone with dementia and their carer needs. They may also care on page 79). When it comes to receiving care and support arrange for care and support to be provided, often by a different services, some people will get them for free but others will need organisation. Social care professionals include social workers, home to pay. This will depend on the level of a person's needs, and their care assistants and home carers.
income and savings. These staff can help people to remain independent for as long If someone is caring for a person with dementia, they can have as possible in their own home. Services provided or arranged by their own needs assessed too. See Support for carers on page 85.
the local authority might include: • help in and around the home – eg with shopping, cooking, Charities and not-for-profit organisations
cleaning, or washing and dressing Charities and not-for-profit organisations can be a valuable source • equipment and adaptations to make life easier and homes of local support, advice and information for people with dementia, safer – eg a raised toilet seat, hand rails or a carbon their families and carers. National organisations include Alzheimer's monoxide detector Society, Dementia UK and Age UK. You can call their national • help with meals at home helplines, visit their websites or drop into a local office (if there is • help with taking medication one) for more information. Ask whether the fol owing services are • arranging a place at a day club or support group available locally and how to access them: • help managing money and paying bil s, dealing with paperwork • dementia advisers and claiming benefits • dementia support workers • respite care (temporary care to allow carers to take a break) • specialist dementia nurses • intermediate care or re-ablement (eg where staff support people • dementia support groups at home after a hospital stay) • dementia cafés • extra care housing (homes where care and support are available on site).
• befriending• singing groups• advocacy services• telephone helplines• discussion forums• information – online and in factsheets or booklets.
For organisations and contact details see Alzheimer's Society services and support on page 106 and Other useful organisations starting on page 110. Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 5 Services for people with dementia How to access social care
A wide range of private companies provide care and support services at home (sometimes called domiciliary care) for people Community care assessment
with dementia. Someone with dementia might pay for a care The first step for getting support at home is to ask for a community assistant using their personal budget (see page 81) or from their care assessment. This aims to find ways to help you maintain your independence and quality of life. It is sometimes called a care assessment or needs assessment, and will involve a discussion For a list of local registered private agencies, contact your local between you and someone from social services. You might also social services, the UK Homecare Association, or visit the website be asked to fill in a questionnaire, which they can help you with of the relevant regulator: the Care Quality Commission (in England), Care and Social Services Inspectorate Wales or the Regulation and Quality Improvement Authority (in Northern Ireland). For contact The assessment might cover living arrangements, what you are details see Other useful organisations starting on page 110.
and aren't able to do for yourself, any worries you have and how you would like to be supported. Friends or family members can For more information, see factsheet 454,
contribute to the discussions.
How health and social care professionals can help
Social services may also ask the GP and other professionals for their opinions. To arrange a community care assessment, you or a relative or Dealing with different
friend can contact social services directly. Alternatively a GP, consultant or other professional involved in your care can make • If you're unsure about someone's role, ask them to explain it. a referral. Assessment, information and advice are always free.
• Consider asking a friend or relative to be with you when you see professionals. • Write down what you want to discuss with someone before ‘ We now get direct payments and pay for my
carer directly. I get Disability living allowance too.
• Write down anything important they tel you. Social services tell you about all the support you
can have. There are things I was offered – respite,
meals on wheels – that I didn't want.'
Graham, East Sussex, living with Pick's disease Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
5 Services for people with dementia Getting help: a care and support plan
Social services will appoint someone, usually a social worker, to be responsible for planning your care and support. The social worker will draw up a written care and support plan and give you a copy. Social services should work with you to agree how to meet your needs in a way that suits you best. They might offer to provide some services themselves or suggest private companies or charities that can help. Some people affected by dementia choose to arrange services for themselves. Some people will have to pay towards their social care. Contributions depend on income, savings and assets. The value of your home won't normally be taken into account if you are living there. If the local authority is paying for some or all of your care, they should talk to you about a personal budget. This is an agreed amount of money allocated to you by the local authority to pay for care and support that meets your assessed needs. Personal budgets are designed to make sure that someone can choose and receive the help that meets their needs.
A personal budget can be used in many different ways. Social services will help you write a plan which will say what type of care and support you want, and how the personal budget will be allocated. There are no restrictions to say that care services have to be organised through social services. Some people choose to receive their personal budget as a direct payment. They can then use it to employ a personal assistant, or to pay for home care from an agency. For more information visit alzheimers.org.uk
The dementia guide 5 Services for people with dementia Tips on personal budgets
The number of services suitable for younger people is growing, but progress is slow and services may not be available in your local area. • You can choose to receive your personal budget as a direct payment. This means that you or a family Ask your memory clinic, consultant, GP or social services about member or friend is responsible for keeping records of support and services for younger people with dementia. Contact how it's spent in line with your support plan. Alzheimer's Society about putting you, your family or carers in • Alternatively, you don't have to receive your personal contact with others in the local area, or in similar circumstances. budget as a direct payment if you don't want to. You can Alzheimer's Society's online discussion forum, Talking Point, includes ask social services to manage it for you, or ask them to a section for younger people with dementia and their carers. arrange for a local organisation to help you to manage it.
• Ask social services for help and information about personal You might also find it helpful to visit websites and subscribe to budgets. They can tell you about local organisations that newsletters that support people with a particular type of dementia. can help you understand how to use one. As a younger person, if you're eligible for funded social care you're more likely to be offered a direct payment to pay for your care. This can help you get support that's tailored to your needs.
Services for younger people
For more information see factsheet 440,
Younger people with dementia
If you have been diagnosed with dementia and are in your 40s, 50s or early 60s, you will have very different interests, care and support needs from someone diagnosed in their 80s or 90s. For example, younger people are more likely to be working (or have a partner who is), have dependent children or possibly dependent parents, and still have a mortgage. Services for people with dementia have often been developed around the needs of older people, and in some cases access is restricted to those over 65. Even where a service is open to younger people, the type of care and support provided may not always be appropriate or flexible enough to meet individual needs. Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
6 Support for carers Support for carers
In this section
For more information visit alzheimers.org.uk
Key points: Support for carers
Caring for someone with dementia can be very There are practical tips that can make caring stressful and at times upsetting, but also rewarding.
for someone with dementia a little easier. For example, encourage the person to keep doing Carers often go through a wide range of emotions, what they can to retain their independence. including loss, guilt and anger. They may also have positive feelings, such as satisfaction from being When communicating, make eye contact, listen able to support the person with dementia.
careful y, be aware of your body language and speak clearly.
A lot of information and advice is available to support you in your caring role. Sources of support As a carer, you may well find changes in the for carers include family and friends, health person's behaviour difficult to cope with. This might professionals, memory services, social services, include them repeating themselves, fol owing you, carers' support groups and organisations such as pacing and shouting out. Keep in mind that they aren't doing these things deliberately, and try not to take it personal y. They may be in pain or trying As a carer, it's important to look after your own to tell you something, for example that they are health and wel being. Try to eat a balanced diet, bored or frustrated.
and to get enough sleep and exercise. Make sure you have some time to yourself.
Talk to a doctor – ideal y a specialist – about behaviour that is challenging or causing either of you distress or worry. There are things that can be done to help.
The dementia guide 6 Support for carers Looking after yourself
Caring for a person with dementia can become gradually more If someone close to you has been diagnosed with dementia, it's demanding, physically and emotionally. Getting support will make important not to underestimate the impact this may have on you. it easier for you to cope and better for the person you care for. Whether you're the husband, wife, partner, daughter, son, brother, sister or friend of the person, your relationship will change. Many There are many sources of support, including: people find that they have taken on the role of a ‘carer' without • Friends and family – while it can be difficult to accept help, making any decision to do so.
try to involve family members and share responsibilities as it will take the pressure off you a little. Caring for and supporting someone with dementia can be • Benefits and your employer – if you work, explore flexible stressful and at times upsetting. It can also be very rewarding. working options with your employer. If you decide to stop It's important that you look after your own health and wel being, working, take advice about your pension entitlements. Find out and turn to others for support when you need it. There is advice about any benefits you might be entitled to. See page 57 for available to help you understand dementia and do all you can to more information. support the person you care about.
• Social services and the carer's assessment – as a carer you're entitled to have your individual needs assessed by social services upon request. You may be offered support When you're caring for someone with dementia, you're likely to services to help you in your caring role. The local authority experience a wide range of emotions at different times. These may might charge for some of these services, taking your income range from positive feelings – you get satisfaction from supporting and some savings into account. the person – to other feelings of loss, grief, guilt, embarrassment • Support workers – many voluntary organisations have and anger. You may also feel awkward about any reversal of your trained dementia support workers who can provide practical previous roles. It can help to know that this is normal for lots of information, guidance and support about caring for someone people caring for someone with dementia.
with dementia. They can offer home visits or support over the phone. Try and take time to reflect on how you're feeling, and talk to • Support groups – local carers' support groups give you a chance someone you trust. You might choose a professional, a friend or to chat to others going through similar experiences. You can family member, or someone at a carers' support group. If you use share practical tips and get emotional support. Ask your memory the internet, you could try an online discussion and support forum service or local Alzheimer's Society about groups in your area. like Talking Point. For more information see Alzheimer's Society services and support on page 106 and Other useful organisations on page 110.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 6 Support for carers • Online discussion forums – these can be a helpful source of support at any time of the day or night. You can talk online Try to make sure you have some regular time to relax or do with other people who are going through similar experiences something just for yourself – this can have a big impact to seek advice and share practical suggestions. See page 106 on your wel being. Try to get out regularly to meet friends. for more information. • National Dementia Helpline (0300 222 1122) – trained advisers If possible, consider an outing or short break, as this can relieve can support you, provide information and refer you to other stress and leave you feeling refreshed. Find out about day care or sources of support. See page 106 for more information. respite support for the person you care for so that you can take time out knowing they are well looked after.
Your health and wellbeing
As a carer, it can be easy to put the other person's needs first and For more information see factsheet 523,
ignore your own. Looking after yourself is vital for your own health Carers: looking after yourself
and wel being. It will also help make sure you can do your best to care for the person with dementia. Your health
Tips for supporting a person
It's important to make sure that you eat a balanced diet and make time for regular exercise and physical activity. Even going for a walk can help. Much of how you care for the person will come naturally and be See your GP about your own health on a regular basis. If you're based on instinct. You will probably know the person best, and you having problems sleeping, ask your doctor for advice. If you have to shouldn't underestimate the value you can bring to their care. It's help move or lift the person you're caring for, ask your GP to refer important to continue to see the person and not just their dementia. you to a physiotherapist for advice so that you don't risk injuring yourself. If you feel sad or anxious a lot of the time, talk to your GP about it as early as possible, as these could be signs of depression. With time, dementia will affect the person's ability to carry out tasks in everyday life that they would have found straightforward previously. Try to support and encourage them to continue to do ‘ It's real y important to try and get some time on
as much as they can for themselves. When you help out, try to do your own, for yourself. I go and read a book upstairs,
things with them, not for them. This can help the person retain or I take the dog out. You need that little space.'
their independence as well as improve their wel being, confidence and self-esteem. Ann, Wiltshire, carer for a person with dementia Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
6 Support for carers You might find the fol owing tips useful when you're caring for someone close to you:• Focus on what they can do rather than on what they can't. This will help to promote their independence. For example, lay clothes out for them to dress themselves as far as possible. • They may find it hard to remember or concentrate on things, so try to be flexible and patient. • Put yourself in their shoes – try to understand how they might be feeling and how they may want to be cared for. • Offer support sensitively and try to give encouragement.
• Make sure they have meaningful things to do, from everyday chores to leisure activities. Do things together if you can.
• Include the person in conversations and activities as much How dementia affects the way someone communicates will vary. In most types of dementia, people will at times struggle to find the right words or fol ow a conversation. This can be upsetting and frustrating for you and the person with dementia. However, there are lots of ways to help you understand each other: • Make eye contact. Try to listen as careful y as you can, even when you are busy. • Make sure you have the person's full attention. Consider whether any distractions, such as noise, are affecting things.
• Notice your body language. Think about how you use gestures, facial expressions and touch. You can give a lot of reassurance through physical contact, if it feels right. • Speak clearly and think about the words you use. If you aren't being understood, use simpler words or explain things differently.
For more information visit alzheimers.org.uk
The dementia guide 6 Support for carers • Stick to one topic at a time and make sure questions are straightforward – having too many choices can make Behaviours that may seem unusual include: decisions difficult. • repetition – eg asking the same question, or repeating an action, • Bear in mind that other things, and not just dementia, can affect communication – hearing or eyesight problems, pain • restlessness – pacing or fidgeting or side effects of medication. • lack of inhibition, such as social y inappropriate behaviour in • If it feels right, it can sometimes help to deal with public – this is particularly common in the behavioural form misunderstandings and mistakes using humour. Laughing of frontotemporal dementia together can ease tension. But you will need to judge how • night-time waking, sleeplessness and ‘sundowning' (increased the person responds to this.
agitation or confusion in the late afternoon and early evening) • When others are around, ensure you involve the person in • fol owing you around or calling out to check where you are the conversation and avoid talking across them.
• putting things in unusual places, and then forgetting where For more information see factsheet 500,
• suspicion – eg the person thinking someone has taken something belonging to them, when they have actually mislaid it.
It may help to remember that the person isn't being deliberately Changes in behaviour
difficult and their condition may be affecting their sense of At times, people with dementia behave differently from how they reality. Try to think of things from their perspective and offer used to. Many carers find dealing with this more difficult than reassurance. It's important to think about what the person is trying adjusting to symptoms such as memory loss. to communicate to you. Working out what the problem is, if there is one, will be the first step to resolving it. Try to avoid correcting While it can be very difficult, it's best to deal with any potentially or directly contradicting the person with dementia. At times it tense situations as calmly as you can – take some deep breaths or might be appropriate to try to distract the person, for example by leave the room for a while if you need to. Keep in mind that even changing the conversation, having something to eat or going for where behaviour appears to be targeted at you, this may be just a walk together.
because you're there. If problematic behaviour persists or causes distress, seek advice and support from the GP, memory service, community mental health nurse or Admiral Nurse (mental health nurses who specialise in dementia). If behaviour persists and you're not in contact with a dementia specialist, ask for a referral to one.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Behaviours that challenge
Someone with dementia – particularly as the disease progresses – can develop challenging or distressing behaviours. These are increasingly called ‘behaviours that challenge' but you may still hear them included under the broader term ‘behavioural and psychological symptoms of dementia' (BPSD). Challenging behaviours can become severe and very distressing, for carers and for the person with dementia.
Behaviours that chal enge might include:• becoming very agitated• shouting or screaming – perhaps in response to mistaking something they can see for something else, or seeing things that aren't there (hal ucinations) • behaving aggressively, either physically or verbally.
These types of behaviour are often very upsetting. Symptoms might be caused by a general and curable health problem, such as pain or discomfort due to constipation or an infection. See the GP for a medical assessment.
Try to understand why the behaviour is happening. It might be an indication that the person has a need that isn't being met. If there are no physical causes, it may be that aspects of the person's care or home environment are causing the behaviour. Boredom and frustration are two common causes. It can help to keep a record of when the behaviours happen to help you understand them or spot any triggers. The person's own reality and perception of time may both be different from yours.
Call the National Dementia Helpline on 0300 222 1122
The dementia guide 6 Support for carers See if activities, particularly social ones, help. You could also try aromatherapy, massage, or music or dance therapy. Contact with animals can help some people. Other useful activities, if available, You may come across the term ‘person-centred care'. In the include talking therapies, reminiscence therapy or life story work. context of dementia, person-centred care means health and See Non-drug treatments on page 31 for more information. social care professionals should be offering care that reflects these principles: For more information about unusual and challenging
• valuing the person with dementia – treating them with behaviour see factsheets 525, Unusual behaviour
dignity and respect, promoting their rights and 509, Aggressive behaviour
• treating them as an individual – understanding their history, lifestyle, culture, likes and dislikes • seeing things from their perspective If these approaches don't work, or if symptoms of challenging • providing a positive social environment in which they can behaviour are severe or very distressing, the doctor might suggest live wel , with opportunities for nurturing relationships in medication. This may be one of the drugs mentioned in Drug the wider community. treatments on page 37, an antidepressant or anti-anxiety medication. Care of a person with dementia, wherever it's given, should If these drugs don't help, the doctor may recommend an always be based on these principles. You and the person antipsychotic drug. If so, talk to the doctor about the benefits with dementia, where possible, should always be involved in and risks. These drugs don't work for everyone and can have developing person-centred care. As a partner, family member serious side effects. Antipsychotics should be offered only after or friend, your knowledge and understanding of the person all non-drug options have been exhausted, and only then for a is invaluable.
short period (up to 12 weeks). For more information, see factsheet 408, Drugs used
to relieve behavioural and psychological symptoms
in dementia
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
7 Research
In this section
For more information visit alzheimers.org.uk
Key points: Research
Researchers are finding out more about what You can get advice and guidance on getting causes dementia and how to diagnose it better. involved in health research from NHS Choices. They are developing new treatments and ways You will find their contact details on page 115.
to improve quality of life for people living with the condition.
Alzheimer's Society has a Research Network that you can join to help influence how funds If you, or someone close to you, have been are al ocated to research projects. diagnosed with dementia, you may want to Email [email protected]
take part in research. This could mean being or phone 020 7423 3603 to get involved.
part of a clinical trial to test a new treatment or giving blood for genetic research. Or you could give your views on the healthcare and support services you have received.
You can go online to register your interest in getting involved in dementia research. Or you can ask at your memory service about trials in your area.
The dementia guide How to get involved in research
Research studies often need people to fit specific criteria such as a certain type or stage of dementia. Your age, the medication you Researchers, in partnership with many people with dementia and are taking and other health conditions might mean that there isn't their carers, are working hard to find a cure for dementia. They always a study suitable for you. However, you can also explore what are looking into its causes, how it might be prevented, ways of research is taking place in your area through the UK Clinical Trials diagnosing the disease earlier and how to improve quality of life for Gateway (see DeNDRoN in Other useful organisations).
people living with the condition.
If you do take part in research, you will be ful y informed and Taking part in research
asked to give your consent. You can leave the study at any time Many hospitals support research into dementia. This important without affecting the rest of your care.
work would not be possible without the help of people affected by the condition. Taking part in research can take many forms. It You can find out more about research in dementia from might mean being in a clinical trial to test a new treatment, giving Alzheimer's Society or Alzheimer's Research UK (see Other blood for use in genetic research, or giving views on the quality of useful organisations starting on page 110 for contact details). healthcare and support services. Taking part offers an opportunity to provide advice and share your opinions with researchers.
Influencing dementia research
You have a right to choose to take part in relevant and appropriate research as part of your care and treatment within the NHS.
Alzheimer's Society funds and supports a range of research. This is carried out in partnership with dementia researchers and people Most people who take part in research value the opportunity affected by dementia to improve the quality and relevance of the to make a difference. They say that they welcome the chance research that is funded. Alzheimer's Society's Research Network, to try new treatments or services, to influence and improve care made up of over 230 people with dementia, carers and former and to have their condition monitored more closely. Some people carers, plays an integral part. help decide which research is funded rather than take part in research directly. Research Network volunteers share their views by reviewing research proposals, discussing projects with researchers, helping to set research priorities and raising awareness of the importance If you or your carer would like to take part in research, there of dementia research. All volunteers receive training and support. are several ways to do it. Ask the GP or at the memory service Volunteers can be involved as little or as much as they would about research happening in your area that you can help with. like and it's possible to volunteer from home. If you'd like find You can also register your interest online (see Dementias and out more about the Research Network, visit alzheimers.org.uk/
Neurodegenerative Diseases Research Network – DeNDRoN – researchnetwork, email [email protected] or call
in Other useful organisations starting on page 110). 020 7423 3603.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 8 Alzheimer's Society services Information
8 Alzheimer's Society
Alzheimer's Society produces a wide range of information for people with dementia, carers, family and friends. This includes the factsheets listed throughout this guide. You can read this services and support
information at alzheimers.org.uk/factsheets To request printed
copies, use the order form on page 121 or phone 0300 303 5933.
Alzheimer's Society provides a range of services and
resources to support people affected by dementia.
Alzheimer's Society provides a range of local services in England, Wales and Northern Ireland. Please note that not all the services listed below are offered everywhere, due to the availability of These are available wherever you live in England, Wales and funding. Contact your local Alzheimer's Society office or the Northern Ireland.
National Dementia Helpline for more information about Society
services in your area or visit alzheimers.org.uk/localinformation
National Dementia Helpline – 0300 222 1122
The Helpline is for anyone who is affected by dementia or Dementia Adviser services
worried about their memory. Trained advisers provide information, Dementia Advisers provide information, advice and guidance to support, guidance and signposting to other appropriate people with dementia and their carers, from diagnosis onwards. organisations. The Helpline is open 9am–5pm Monday–Friday They help people affected by dementia identify what information and 10am–4pm Saturday and Sunday. You can also contact the is needed and provide resources and advice to meet these needs.
Helpline by email at [email protected]
Dementia support services
Talking Point online discussion forum
Dementia support workers provide expert practical advice and Talking Point is an online support and discussion forum for support to help people with dementia, their carers and family to anyone affected by dementia. It's a place to ask for advice, understand the condition, cope with day-to-day challenges, and share information, join in discussions and feel supported. to prepare for the future. Talking Point is available 24 hours a day, every day of the year.
Visit alzheimers.org.uk/talkingpoint
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 8 Alzheimer's Society services Carer Information and Support Programme
Dementia Cafés provide a safe, comfortable and supportive The Carer Information and Support Programme is a series of environment for people with dementia and their carers to get workshops for people caring for a family member or friend with together and socialise, receive information and share experiences.
dementia. The workshops provide family carers with practical information on caring for someone with dementia and the chance Singing for the Brain® groups
to share their experiences with others.
Singing for the Brain® is a stimulating group activity based on the principles of music therapy for people in the early to moderate Advocacy services for people with dementia
stages of dementia and their carers.
Advocacy helps people with dementia to express their views, to access information and services, and to secure their rights. Community support services (including befriending)
Using their professional expertise, a trained advocate will support Befriending services connect people with dementia with a and empower someone with dementia to make informed choices volunteer who has similar interests. This enables people with and decisions, for example about the care they receive. dementia to continue with hobbies and interests in their own home or local community, supported by the volunteer. Day care and support services
Day care and support services give people with dementia the Community support services are provided by either volunteers or opportunity to continue their hobbies and interests, try out staff to support people to get involved and socialise in their local new activities, and socialise with others in a friendly and safe community. Unlike befriending, the service is not based on shared environment outside of their home. interests but solely on the needs of the person with dementia. Home care and support services
Support groups for people with dementia
Specialist home care and support services offer people with Support groups for people with dementia provide a safe and dementia personalised one-to-one support in their own home supportive environment where attendees can talk about issues they to help them maintain their independence. are facing. They can share practical information and experiences with others who understand what they are going through. Support groups for carers
Support groups provide a friendly and supportive environment for those caring for someone with dementia to talk to other carers about their experience.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 9 Other useful organisations AT Dementia
9 Other useful
[email protected] Provides information on assistive technology that can help people with dementia live more independently. Action on Elder Abuse
Benefit Enquiry Line (BEL)
0800 243 355 (textphone) A specialist organisation with a focus exclusively on the issue of elder abuse. Provides advice and information on the benefits you can claim if you're disabled or a carer.
0800 169 6565 (advice)www.ageuk.org.uk Benefit Enquiry Line Northern Ireland
0800 243 787 (textphone)www.nidirect.gov.uk/benefit-enquiry-line Aims to improve later life for everyone through information and advice, services, campaigns, products, training and research.
Provides advice on benefits to people in Northern Ireland.
Alzheimer's Research UK
British Psychological Society
[email protected] A leading dementia research charity.
Provides access to a list of clinical and counsel ing psychologists who offer private therapy services. Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 9 Other useful organisations Care and Social Services Inspectorate Wales
Citizens Advice Bureau (CAB)
www.adviceguide.org.uk (online information resource) Citizens Advice Bureau offers free, confidential, impartial and The independent regulator of health and social care independent advice to help people resolve problems with debt, services in Wales. benefits, employment, housing and discrimination. To find your nearest CAB, use the website above or look in the phone book.
Care Quality Commission
Dementia UK
0845 257 9406 (Admiral Nurse helpline) [email protected] (Admiral Nursing Direct) The independent regulator of health and social care services in England. National charity committed to improving quality of life for all people affected by dementia. They provide Admiral Nurses who Carers Trust
are mental health nurses specialising in dementia care. 0844 800 4361 [email protected] Dementias and Neurodegenerative Diseases Research
Works to improve support, services and recognition for anyone living with the challenges of caring for a family member or friend.
(UK Clinical Research Network Study Portfolio) Carers UK
DeNDRoN is part of the National Institute for Health Research Clinical Research Network, supporting research to make patients, and the NHS, better. Department for Work and Pensions
Provides information and advice about caring, alongside practical and emotional support for carers.
Government website with details of benefits and pensions, and how to claim them.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 9 Other useful organisations Driver and Vehicle Licensing Agency (DVLA)
[email protected] Government-funded agency that issues driving licences and vehicle registration documents in Great Britain.
Mental health charity that publishes information on all aspects of mental health and provides a range of support Driver and Vehicle Licensing Northern Ireland (DVLNI)
through local associations.
NHS Choices
www.nhs.uk/service-search (for local services) Government-funded agency that issues driving licences and vehicle www.nhs.uk/carersdirect (or call 0808 802 0202) registration documents in Northern Ireland.
www.nhs.uk/conditions/clinical-trials (guidance on getting involved in health research) The UK's biggest health website, provides a comprehensive health information service that aims to put people in control Online government services and information, replacing Directgov of their healthcare. and covering benefits, driving, housing, money and tax, working and pensions.
NHS Direct Wales (Galw Iechyd Cymru)
0845 4647
Law Society
020 7242 [email protected] NHS Direct service for people in Wales – it provides information in English and Welsh. The body representing solicitors in England and Wales.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 9 Other useful organisations NHS 111 service – previously NHS Direct (England)
Regulation and Quality Improvement Authority
Information on a wide range of health topics. Telephone service The independent regulator of health and social care services in gives access to round-the-clock clinical information, confidential Northern Ireland.
advice and reassurance. NHS 111 (telephone 111) replaces NHS Direct England. Silver Line
NI Direct
Official government website for Northern Ireland citizens. Supports older people by signposting to services, offering a Information and services about benefits, driving, housing, money befriending service to combat loneliness and empowering and tax, pensions, health and wel being.
those who may be suffering abuse and neglect.
Office of the Public Guardian and Court of Protection
Solicitors for the Elderly
0844 567 6173 (for help finding a solicitor) Provides information and advice on powers of attorney and An independent, national organisation of solicitors, barristers deputyship. It also helps attorneys and deputies to carry out their and legal executives who provide specialist legal advice for older duties and protects people who lack mental capacity to make and vulnerable people, their families and carers. decisions for themselves.
UK Homecare Association Ltd
0800 731 7898 (claim line) 0845 606 0265 (general queries) The national association for organisations who provide social care, Helps with State pension eligibility, claims and payments, including nursing services, to people in their own homes.
including Pension credit.
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide 10 Checklist
Below is a checklist of things you can do after reading
this guide. These will help you to live well now and make
plans for the future:
1 Understand more about your diagnosis – for example,
6 Arrange a benefits check for you and your carer.
the type of dementia you have, and what your drugs are for (if prescribed). (Page 7.) Write or update your will and appoint an attorney. 2 Talk to others about how you're feeling and ask your GP
if there are any therapies or activities that could help you. (Page 31.) 8 Tell the DVLA/DVLNI and your car insurer about your
diagnosis (if driving). (Page 65.) 3 Try some methods to help you to cope with memory
9 Ask social services for a community care assessment
and a carer's assessment. (Page 79.) Introduce exercise to your daily routine and review your diet to make sure it's balanced. (Page 48.) 10 Get in touch with Alzheimer's Society to find out about
local services for you and your carer. (Page 106.) 5 Organise regular checkups with your GP, dentist,
optician and chiropodist. (Page 49.) Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
The dementia guide Factsheets order form
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Publication title Alzheimer's Society is the UK's leading dementia
support and research charity, touching the lives of
millions of people affected by the condition. Over
100,000 people rely on our local support services,
and thousands more benefit from our information,
helpline advice and online support.
We campaign for a better quality of life for people with dementia and for greater understanding of the condition. We also fund an innovative programme of medical and social research into the cause, cure and prevention of dementia.
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Alzheimer's Society would like to acknowledge the
Department of Health for their support and contribution
of funding towards the production and distribution of
this guide.
We hope that you found this publication helpful. If
The Department of Health is working with organisations including you have any comments, and in particular suggestions
Alzheimer's Society to go further and faster in improving dementia for how it could be improved in the future, please get
care, focusing on raising diagnosis rates and improving the skil s in touch.
and awareness needed to support people with dementia and their carers.
Please write your comments below and send them back to us using the contact details below.
Alzheimer's Society would also like to acknowledge the fol owing organisations for their endorsement of this guide: • The Royal Col ege of Psychiatrists – the professional and educational body for psychiatrists in the UK. • The Royal Col ege of General Practitioners – a network of more than 45,000 family doctors working to improve care for patients. It works to encourage and maintain the highest standards of general medical practice and act as the voice of GPs on education, training, research and clinical standards.
• The Association of Directors of Adult Social Services – the body that represents all the directors of adult social services in England.
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Alzheimer's Society Publications team
Devon House
58 St Katharine's Way
London E1W 1LB
or email [email protected]
Call the National Dementia Helpline on 0300 222 1122
For more information visit alzheimers.org.uk
This booklet has been reviewed by health and social care professionals and people affected by dementia. We would like to thank them for their generous and valued contributions.
It can be downloaded from our website at alzheimers.org.uk/dementiaguide
Sources are available on request.
This publication contains information and general advice. It should not be used as a substitute for personalised advice from a qualified professional. Alzheimer's Society does not accept any liability arising from its use. We strive to ensure that the content is accurate and up to date, but information can change over time. Please refer to our website for the latest version and for full terms and conditions.
Alzheimer's Society, 2013. All rights reserved. Except for personal use, no part of this work may be distributed, reproduced, downloaded, transmitted or stored in any form without the written permission of Alzheimer's Society.
First published: 2013. Next review: 2015 Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499. Alzheimer's Society operates in England, Wales and Northern Ireland.
Call the National Dementia Helpline on 0300 222 1122
Alzheimer's Society is the UK's leading support and research
charity for people with dementia, their families and carers.
We provide information and support to people with any
form of dementia and their carers through our publications,
National Dementia Helpline, website, and more than
2,000 local services. We campaign for better quality of life
for people with dementia and greater understanding of
dementia. We also fund an innovative programme of medical
and social research into the cause, cure and prevention of
dementia and the care people receive.
If you have any concerns about Alzheimer's disease or any
other form of dementia, visit alzheimers.org.uk or call the
Alzheimer's Society National Dementia Helpline on
0300 222 1122. (Interpreters are available in any language. Calls
may be recorded or monitored for training and evaluation purposes).
Alzheimer's Society
Devon House
58 St Katharine's Way
London E1W 1LB
Source: http://www.2gether.nhs.uk/files/Alzheimer_s_Society_Diagnosis_booklet.pdf
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