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A Guide to the Dementia Journey What to expect and when Step-by-step support Packed with info and advice for family carers

Living Well



We’ve don e the researc h for you.

Contents Introduction


Chapter 1: Why every journey is different


Chapter 2: Early challenges: what to expect


Chapter 3: Dementia and the law: know your legal rights


Chapter 4: Moderate dementia: what might you expect?


Chapter 5: More mid-stage challenges


Chapter 6: Coping with the system


Chapter 7: Later stage dementia - what to expect


What is


Introduction "When people say ‘you have Alzheimer’s,’ you have no idea what it is, you really don’t know anything about it. And you don’t know what to expect." Nancy Reagan, widow of President Ronald Regan who lived with dementia for more than 10 years.

• What’s likely to happen on the dementia journey? • How long could it last? • When will the person I love need more care than I can provide? • Will they soon forget who I am? If you’ve ever asked yourself one of these questions — and found it difficult to get an honest answer — this book is for you.


Chapter 1: Why Every Journey Is Different If you and a loved one are at the beginning of the dementia journey you might feel daunted about what’s ahead, and worried about how you’ll cope. Knowing what to expect and how things are likely to progress can make life easier for everyone, so here are the key things to consider: Don’t panic Whilst the next few years might not be easy, and you could face difficult challenges and decisions, the good news is that time is probably on your side. Dementia does tend to progress slowly, over several years, and most people find they can still lead a pretty normal life at first, with only a few tweaks and perhaps a little support. So whatever the future holds, you and your family have time to prepare — and time to enjoy life, too.

In a nutshell You’re probably well aware that dementia is a progressive illness which means that it gets worse in time. At first, symptoms can be so mild that they’re hardly noticeable to anyone except those closest. Gradually, the person you care about may need more help with day-today living, including a few tweaks to make sure their home is dementia-friendly. Eventually they may need to accept more support - from family, friends or outside agencies - if they are to remain independent. At some point you may all have to consider bigger changes in the way you live if the person with dementia is to remain safe and happy.

BUT The dementia journey is rarely as simple as this. Whilst a slow gradual decline over many years is, generally speaking, the likely outcome, you are likely to experience plenty of bumps along the way too, which might take you by surprise or leave you wondering if something’s ‘going wrong.’ It might be helpful to understand how the dementia journey is often described. There are two basic schools of thought that you may come across.


1. The stages theory You often hear the dementia journey described as a series of three ‘stages’ based on symptoms. These are: • Early stage: when mild and minor changes in memory or behaviour start to happen. Forgetting recent events, repeating yourself, mislaying things regularly are all common signs of this stage but they can be so subtle that many people mistake these changes for normal ageing. • Middle stage: when more obvious changes occur which might put the person with dementia — or others — at risk. For example, they may get lost when they go out, forget how to work a cooker, go walking late at night, or start mixing up night and day. • Late stage: when loss of memory is pronounced and they become increasingly frail. Your loved one may need help with eating, bathing and gradually become very dependent on others.

Late Stage Dementia

Mid Stage Dementia

Early Stage Dementia

BUT Whilst the stages theory can be a useful and straightforward guide, it isn’t an exact science so it’s best not to get too bogged down in wondering which ‘stage’ the person you’re caring for, might be at, or worrying when the next ‘stage’ is likely to occur.


Remember, the stages theory is based on symptoms only and doesn’t take into account: •

Personal circumstances — some symptoms of dementia can become much more pronounced if the person is living on their own. For example, they might only be in the ‘early stages’ but be experiencing serious difficulties in day-to-day life, which could make it seem as if they’re in the ‘middle stage’.

Good days and bad days — this is one of the most common characteristics of the dementia journey and one which can cause much surprise. For example, many carers experience days when they wonder how on earth their loved one will be able to spend another day living on their own…only to find that the next day they are far more alert and yesterday’s ‘crisis’ seems to have passed.

Personality — emotional resilience, strength, determination and intelligence can play a big part in the dementia journey, sometimes even disguising how far the condition has progressed. For example, you may assume your loved one is still in the ‘early stages’ of his journey when in fact the damage is more severe — he’s just doing a very good job of hiding it!

2. The personal journey theory As our understanding and awareness of dementia increases, another theory about how dementia progresses has begun to emerge, which focuses on ‘the journey’ itself rather than the symptoms that may, or may not occur. This theory emphasises the uniqueness of each journey and advocates a person-centered approach identifying key themes, milestones and challenges along the way, rather than a chronological series of symptoms.

There are four basic strands to the ‘personal journey’ theory. These are: • The system journey — this is the health and medical part of the journey, it includes where people live, how they learn to navigate ‘the system’ and milestone events such as being diagnosed, giving up driving, or deciding whether to move house or into a care home. • Relationships and community — this is about the part played by friends and family on the dementia journey, it includes events such as telling other people about the diagnosis, how relationships might change and new friendships may emerge. • Changing and adapting — this focuses on how a person with dementia might come to terms with their new reality, make adjustments and begin to live ‘in the moment’ rather than dwelling too much on the future.


• Focusing on me — this looks at what the person with dementia (and their loved ones) might do to stay well physically, psychologically and emotionally. It includes how they may cope with stress and anxiety and go about finding new purpose and meaning in life.

BUT Although this theory conveys a very thorough and realistic picture of the dementia journey — and one which most people will find they relate to — it is quite complex to navigate, and since symptoms aren’t the focus (they’re hardly mentioned at all) it can be difficult to work out ‘where’ you or your loved one might be right now — and where you might be headed.

Good to know Both theories have something of value to offer a person with dementia and their loved ones. •

Having a rough idea of which ‘stage’ you might be at can be reassuring since it suggests that even the most distressing symptoms you might witness or experience are simply a common part of the condition — not to be taken personally.

The personal journey theory offers a rich, vivid insight into the complexities of life with dementia, suggesting that the journey itself isn’t a downhill slide into oblivion, but a multifaceted pathway, which can even contain some positive experiences and valuable lessons along the way.


Looking closer at the Stages Theory Whilst this three-stage theory gives a general overview of dementia, it can seem too simplistic for anyone who is living with the condition. Many people therefore find it more useful to see the journey broken down further (see below) and explained in more detail.

The seven stages of dementia This offers a more clearly defined picture of the whole dementia journey 1. Normal — no symptoms of dementia or Alzheimer’s are apparent, though changes in the brain might already be occurring — these can happen several years before symptoms emerge. 2. Normal forgetfulness — this involves minor memory problems which can easily be put down to ‘senior moments’ or stress. 3. Mild Decline — loved ones may begin to notice subtle changes and signs that something ‘isn’t right.’ You might be frequently losing your purse, or keys or forgetting appointments. If you seek advice from a doctor at this point you could be told you have Mild Cognitive Impairment. Experts believe this stage can last up to seven years. 4. Moderate Decline — this is when symptoms become clearer to everyone. The person with dementia might find it difficult to manage money or pay bills, or remember what they had for breakfast. If they visit their doctor at this point, and undergo a Mini Mental State Examination (MMSE) it’s likely they will be diagnosed with dementia. The average length of this stage is around two years. 5. Moderately Severe Decline — loved ones may need more help with day-to-day living during this stage. Whilst they can probably still bathe and take care of other personal needs on their own (such as using the loo), they could find it difficult to dress appropriately or be unable to remember simple facts about themselves, such as their address or phone number. However, they usually recognise family and friends and can recall events from decades ago (especially their childhood) with great clarity. On average this stage can last around 1.5 years. 6. Severe Decline — this is the point at which many people with dementia move into care homes or need constant supervision at home. You might need to help them with bathing and they may also become incontinent. You could notice changes in their personality and behaviour — such as anger and aggression — which can be upsetting and difficult to cope with. However, although they might be very confused, they often still know and recognise the people closest to them — which can be some comfort. Experts believe this stage can last, on average, 2.5 years. 6

7. Very Severe Decline — your loved one might not reach this stage, since many people with dementia pass away before it happens, often as a result of other health conditions such as strokes or heart attacks. But if they do get this far, they’ll need round-the-clock care and the support of professional carers (if they haven’t already got this). Whilst this stage can undoubtedly be harrowing for loved ones, it’s important to remember that the person with dementia may not experience it in the same way, since they no longer really understand what’s happening. Providing everyone does their best to keep them comfortable and calm, there’s every chance this stage can end peacefully for them — and for you. It’s very difficult to put a time scale on the illness at this point. However, research shows that if no other medical conditions emerge, this final stage of life can last up to five years.

Good to know Although these stages of dementia are well documented and researched, it’s best not to dwell too much on the finer details, or think too much about ‘which stage’ you might be at. Everyone’s dementia journey is unique — some people will move slowly through some stages and quicker through others. It’s far more important to make the most of where you are now, and to focus on what you can do, rather than worry about what you may, or may not, be able to do later down the line.


Chapter 2: Early challenges — what to expect Your loved one has probably been experiencing slight memory problems or suffering from mild cognitive impairment for quite a while. However, most people find they can lead a pretty normal life during the early stages of the dementia journey, with only a little support from family or friends.

Early Stage Dementia

Four symptoms of early dementia - and how to cope 1. Forgetting recent conversations, events and people Whilst they probably won’t have any difficulty remembering something that happened twenty or thirty years ago, recent events will be much more difficult to retain. For example, a conversation on the phone could be quickly forgotten, or — more worryingly perhaps — a tap, or a cooker, that’s been left on.

2. Being unwilling to take risks It’s only natural to be more cautious if you’re worried about your memory. However, if this understandable caution begins to seriously affect their life, it might be worth offering support. For example, if they’d like to go back to church but are afraid to go alone, could you go with them — or arrange for someone in their religious community to collect them? Practising faith can be a great comfort. 8

3. Finding it difficult to plan or organise They may still love the idea of having the whole family over for Sunday lunch or tea (it brings back so many happy memories) but the organisation is just too difficult. So instead, why not suggest other people in the family take turns, share the cooking, and bring the food with them. The person with dementia can still be kept busy and purposeful setting the table or helping to serve the food. TIP: Check out simple ways to keep their home organised and running smoothly.

4. Losing important items such as keys, purse or phone This can cause enormous frustration, stress and panic — and a lot of wasted time. The best way to deal with it is to accept it’s likely to happen often, and plan as many ways as possible to avoid it.

A word of warning: Don’t take these early stage symptoms too literally, because: • Every dementia journey is unique — your loved one might not fall into one particular category. • Some symptoms appear one day… and then vanish the next. • Most people experience ‘good days’ and ‘bad days’ throughout their journey. On a ‘good day’ it may seem as if there’s nothing wrong at all. On a ‘bad day’ it can look as if they’ve suddenly declined and are now in the moderate to late stages of the illness.

The good news Although daily life may have changed, many people find it’s still pretty good, they can still drive, continue to lead a good social life and live independently.


Coping with: Forgetfulness and confusion Forgetfulness and confusion are often part of everyday life if you have dementia, but forgetfulness has many different causes, only one of which is dementia. As one of the most noticeable symptoms of dementia, forgetfulness and confusion can also trigger a range of emotions in both the person who is living with dementia and their carer. It can be frustrating, upsetting and even, on occasions, funny. So whether they’re forgetting a conversation that you had the day before, getting lost in a town that they’ve lived in for 40 years, experiencing repetitive behaviour or even hallucinations, it’s important to know what you might expect with these symptoms.

Causes of forgetfulness and confusion 1. Dementia 2. Other medical conditions 3. Urinary tract infections (UTIs) and dementia

1. Dementia It’s tempting to assume that the first signs of forgetfulness and confusion must be an indication of dementia. Awareness of the condition is at an all-time high, so it’s easy to jump to conclusions. And it’s true, dementia can cause these symptoms. In diseases such as Alzheimer’s or vascular dementia, deterioration and shrinkage of brain tissue (known as atrophy) affects the links between brain cells, which make it harder for people to store memories. This means they’re more likely to forget information and this can lead to confusion.

2. Other medical conditions Forgetfulness and confusion aren't just symptoms of dementia. They can also be caused by other issues and conditions including depression, certain medications, a lack of sleep, poor nutrition and thyroid problems. That’s why it’s so important to be seen by a doctor before jumping to any conclusions about whether you have dementia or not.

3. Urinary tract infections (UTIs) and dementia A UTI is caused when bacteria start to grow in the tube that carries waste liquid from the bladder out of the body. People of any age can get them, but when people over 60 develop one, they cause distinct symptoms that are different from younger people. 10

When younger people get a urinary tract infection, they most commonly experience painful urination, an increased need to urinate, lower abdominal pain, back pain on one side, fever and chills. But because our immune system changes as we get older, and responds differently to infection, seniors with a UTI may show increased signs of confusion, agitation or withdrawal, rather than pain. Urinary tract infections can make dementia symptoms worse, but a UTI does not necessarily signal dementia or Alzheimer’s. They can cause distressing behaviour changes for a person with Alzheimer’s — often referred to as delirium — and can develop in as little as one to two days. Symptoms of delirium can range from agitation and restlessness to hallucinations or delusions.

Symptoms of forgetfulness and confusion •

Difficulty remembering information.

Struggling to keep track of conversations.

Getting routines or processes muddled up.

Disorientation — not understanding why you’re in a particular place at a particular time.

Repetitive behaviour.


Delirium — more extreme symptoms of confusion, which tend to come on suddenly. 11

How should you respond to forgetfulness and confusion? Be patient: It can be frustrating if someone is constantly asking you the same question or getting confused, but try to stay calm and remain patient if you can. Getting angry will only end up upsetting you both. Offer a brief explanation: Don’t overwhelm the person with lengthy statements or reasons. Instead, clarify with a simple explanation. Use props: Photographs, signs and other thought-provoking items can help to remind the person of important relationships, places and information. Correct through suggestion: If they’re getting the name of an item wrong, or are lost and want to go a particular route, don’t scold or tell them off. Instead, try, ‘I have a feeling it might be this way’, or ‘I think that’s your granddaughter, Helen.’

Coping with: Boredom: People with dementia don’t always sit staring into space when they’re bored so it might not be obvious that the person you’re caring for is suffering from boredom, although there are some common behaviour traits that can suggest boredom is a problem. These include: 1. Wandering 2. Restlessness 3. Agitation 4. Daytime sleeping 5. Loneliness

Why are they bored? Elderly people often become bored because they’re not able to do as much as they used to. This could be because of ill health, or because they’re no longer working and miss the daily structure and buzz that work brings, or maybe their memory loss means they simply can’t do activities they used to love. However, there is still a wide range of activities that the person you’re caring for can do and, generally speaking, being busy helps them to feel calm and contented. It also contributes to their self-esteem and self-worth, general wellbeing and independence. Best of all, staying active can bring you and your loved one closer together.


Did you know? Activity can boost the memory of people with dementia. A study published in the journal Nature found that an enriched environment (with plenty activities and company) may help to improve their cognitive skills.

What can you do? The key to preventing boredom is to identify suitable activities and include them into a daily plan. Make sure you think about the following when organising the activities:

Their personal interests What did they enjoy doing when they were younger? Were they a keen painter, musician or dancer? Perhaps they loved films, books or poetry.

Their ability to do things Focus on what they CAN do rather than what they CAN’T do, and concentrate on enjoyment rather than doing something well, or completing it in full.

Their mobility and energy If they lack the same strength or flexibility to do the activities they used to love, that doesn’t mean they should be ruled out. You simply need to approach them from a different direction. For example, if they loved tea dances, but aren’t able to stand for that long now, they’ll probably still enjoy going to watch other people dance. Think about how quickly they will tire during the activity. 13

Good and bad days While dementia is a progressive condition, you will find that the person you’re caring for has both good and bad days. Some days they will have bags of energy and will be able to get out and about and do lots of activities. Other days they will struggle to understand certain activities and prefer to do something less taxing. The important thing is that you’re flexible and take each day as it comes.

Consider the activity What will the environment be like while doing the activity — will it be noisy, busy or will there be bad lighting? What time of day are you starting the activity? If they get tired at certain times of the day, you may want to pick things that are sedentary and more peaceful.


Coping with: Restlessness If the person you’re caring for is feeling restless you could find it really challenging to cope with. But there’s often a reason for restless behaviour.

What are the causes of restlessness? Restless behaviour can take different forms, including fidgeting, pacing, agitation and sundowning. When you think about it, it’s not surprising; if you’ve spent your whole life doing certain activities (such as working, travelling or looking after children) then find you can’t do them anymore, you’re bound to become restless!

Other reasons for restlessness can include: •

Communication problems: They might be trying to tell you something but the dementia has made talking difficult.

Anxiety: They may feel unsafe or unsure about a certain situation.

Boredom: If they’ve not got much to do all day, they could end up getting bored and restless.

Hunger, thirst or needing the toilet: If a basic need isn't being met , it’s no wonder they’ll be feeling restless and trying to sort it out.

Pain, discomfort or a medical problem: Joint pain, toothache, constipation or a urinary tract infection (UTI).

What can you do about restlessness? Coping with restlessness can be very difficult. If it mainly occurs at the end of a long, busy day, it can be particularly tough. But if it happens during the night and wakes you up, it can be absolutely exhausting. If you’re struggling, try some of these…

Get a health check-up If the restlessness is being caused by an underlying health problem, this should be picked up by a doctor, so organise a trip to the GP for a check-up.


Ensure regular meal times Someone with dementia may forget to eat or drink, so if you think their restlessness is being caused by hunger or thirst, make sure they have easy access to food or drink, and remind them to make use of them. You may need to set up a mechanical reminder if they struggle to remember. There are several inexpensive gadgets you can buy to remind them it's time to eat or drink.

Set up a daily routine It’s a good idea to put a daily care plan in place for someone with dementia. Providing structure to their day will ensure they know what to expect and when that might be.

Provide activities As part of the daily care plan, make sure you include different hobbies and activities to keep the person you’re caring for stimulated and engaged. It could be listening to old music, playing a board game, doing some gardening or even daily chores such as housework.

Get out and about Burning off excess energy will help to reduce the risk of restlessness — whether that’s a daily walk or even seated exercises.

Check for continence issues Whether or not they use incontinence products, it’s worth checking if they need to have pads changed or just use the toilet.

Occupy their hands If the restlessness takes the form of fidgety hands, giving them something to keep their hands busy could help. Soft toys and dolls are popular, but you can also buy soft sensory cushions that have zips and ties to fiddle with, a ‘rummage box’ full of buttons or other items which they can sort or handle. Remember, if the restlessness is taking the form of wandering, sundowning or sleep problems, there’s also plenty you can do.


Coping with: Wandering and walking Many people with dementia are prone to wandering which can be really stressful for carers and loved ones. In many cases, although it may appear to people that the person is simply ‘wandering’ around aimlessly, they’re often trying to get somewhere for a specific reason — they’re walking with purpose — and it’s just that the reason doesn’t quite tie in with where they should be at that current time. While this can be a challenging symptom of dementia, if you can recognise the reasons behind why someone might keep walking off or disappearing, you may be able to prevent it from happening.

Why are they wandering? Continuing with a habit or routine They say old habits die hard, so if the person with dementia had a very specific routine or habit that they used to follow, they may want to carry on with this, even if it’s something that is no longer appropriate, or necessary. For example, they might decide it's time to go and do a weekly shop or to get on a bus and go to the office they used to work in.

Boredom Someone who is lacking in stimulation may simply decide that they’ll go looking for something to do, or simply fancy going for a walk to provide a sense of purpose, which means they could wander off. 17

Restlessness or a need to burn up energy If the person with dementia used to have a very busy or active life, and is suddenly stuck at home, or with a limited social life, they may simply have the urge to get out and about.

Confused Ever find yourself walking into a room and then not remembering why you were in that room? This happens a lot when you have dementia, so the person you’re caring for may be trying to ‘retrace’ their steps until they remember what it was they were doing. Likewise, if they don’t remember an area, they may wander off until they can start identifying something familiar like a landmark. Or, they may be stuck in a memory lapse from their past, and be keen to return to a familiar spot — such as a previous house they lived in — as they recognise it.

Looking for something or someone Wandering may occur because they’ve suddenly decided they need to find an old friend they haven’t seen for a long time or they’re wondering where they parked the car (despite not driving for three years).

Trying to get away from something If the situation or place they’re currently in is painful, stressful or unpleasant in any way, they may simply walk off to get away from it all. Likewise, if the environment is very noisy, they might walk off to find somewhere more quiet and peaceful — and who can blame them?!

Should you use a tracking device? Tracking devices may be a great way to keep a loved one with dementia safe, but they can also raise legal and ethical issues. Here’s both sides of the argument...

In a nutshell Losing a loved one who leaves the house when you aren’t looking or when you’re out and about, is one of the worst moments in caring for someone with dementia, and there are many horror stories in the press about what can happen. A tracking device, sometimes called a locator device or safer walking technology, is one of the latest GPS gadgets which can be used to monitor your loved one’s whereabouts, and could help you locate them if they walk away. But does that mean it’s morally ‘right’ to use them? Here are the pros and cons of tracking devices so you — and the person you’re caring for — can make up your own minds. 18

Pros 1. Greater independence If they’re wearing a tracking device, it may be possible for a person with dementia to go out independently, knowing that if they get lost or feel unwell, a loved one will be able to assist them. 2. Increased confidence A dementia diagnosis can shatter self-confidence. Whilst some people still insist on going out, others become too afraid to leave home on their own — a locator device could offer an invaluable boost to self-esteem. 3. Peace of mind for both of you If you can run a bath without having to worry that the person you’re caring for might go missing, it’s bound to make you feel less anxious, and it could also improve your relationship with your loved one. It’s also worth considering that people in the early stages of dementia can be aware that their loved ones are worrying about them when they go out, and may therefore be happy to wear a GPS tracking device as a way of offering them reassurance. 4. Allows normal life to continue Most people with dementia want to stay in their own home for as long as possible and tracking devices can play an important role in making that happen. 5. Lots of choice and variety There’s a big range in price — you might find trackers are cheaper than you think — and there’s a wide range of ways to use them, you can attach them to key rings or even have one put in a shoe!

Cons 1. Loss of privacy Some people believe tracking devices go against important principles of freedom and civil liberty. Does anyone, they argue, have the right to take away another person’s freedom to go where they please, when they please, simply because they have dementia? 2. Stigma and loss of dignity It could be argued that tracking devices are the same as the ‘tags’ we use on dogs and criminals. 19

3. They’re dehumanising The challenges of the dementia journey are human and critics say they should be solved by human beings, not by technology. 4. They could lead to reduced quality of care If tracking devices become an essential, everyday part of the care package, some people fear they could lead to a reduction in staff supervision in care homes, and a more lax approach to dementia care in general.

Should I ask permission before using a tracking device? Yes, you should ask the person living with dementia if they agree to you using this kind of device. Make sure you explain carefully what the tracking device is, and why you think it could be a good idea. If they have concerns, talk about them and be willing to repeat the conversation as many times as necessary. TIP: If you don't think a tracking device is necessary, it might still be worth having a conversation about them with the person you care about. If they agree that a device could be a good idea and would be happy for you to use one at some point if necessary, then you can avoid ethical worries later on if a tracking device does become necessary.


Chapter 3: Dementia and the law: Know your legal rights It’s best to educate yourself now about the legal aspects of the dementia journey, here's what the person you care about should know about the law and how it could protect them. How to keep your job if you have dementia: Many people who are diagnosed with dementia either want or need to keep working. Coming to terms with a dementia diagnosis can be difficult enough without having to worry about work. If you have a form of early-onset dementia it may be absolutely essential that you continue working, particularly if you have a mortgage and a family to support. Even if finance isn’t your main concern you may still have plenty of skills and experience to contribute to the workplace.

Good to know •

The law is on your side. The 2010 Equality Act requires employers to avoid discrimination and make ‘reasonable adjustments’ to ensure people with dementia are not disadvantaged in the work place.

If your employer says the company cannot afford to make these ‘reasonable adjustments’ you could apply for financial assistance through schemes such as Access to Work — run by Jobcentre Plus — which provides practical support and funding for additional costs associated with overcoming work-related obstacles resulting from a disability or health problem.


What are ‘reasonable adjustments’? Here’s seven examples: • Clear labelling of storage and filing/data systems so that you can organise your work. • Rearranging your work space to minimise distraction. This could mean moving you to a quieter area of an office, or putting up barriers or soundproofing to help make your work area quieter. • Clear signage so you can find your way around the building/office more easily. • A change of working hours and/or flexible working to suit your condition. • Giving some of your duties to someone else. • Transferring you to a different role which you may manage more easily. • Allowing you to take paid disability leave (similar to sick leave) whilst, for example, the adjustments are being made.

Did you know? More than 40,000 people under the age of 65 have dementia in the UK and 18 per cent of them continue to work after a diagnosis.

Three common fears if you have dementia: ‘My boss will think I’m not up to it’ Lack of awareness and stigma about dementia has led to negativity from some employers in the past about the ability of a person with dementia to continue working. However, this is changing fast as more organisations become dementia-friendly, increase their awareness of the condition through staff training, and realise the practical and financial benefits of supporting dedicated employees who are living with dementia for as long as they can.

Fact Early retirement of people with dementia costs English businesses £627m a year.


‘Workmates will gossip about me’ The stigma of a dementia diagnosis is widely accepted but the increasing number of dementiafriendly communities — and people living with the condition — means this is also changing fast, as more people gain first-hand experience of dementia themselves. Ignorance is usually the main reason for gossip, so if you feel you can be honest with workmates try to tell them about your diagnosis, the more people who understand about dementia the better it will be for everyone.

Fact By 2025, more than 1 million people in the UK will have dementia.

‘I might struggle and end up having to leave anyway’ Dementia is a progressive condition and at some point on the journey you may feel it’s best to stop working. However, that could be quite some time away, and until then, providing both you and your employer are honest with each other, there’s every chance you will be able to continue working either in your current role or in a modified one. TIP: Make sure you and your boss have regular, structured review meetings to ensure any reasonable adjustments that have been made to help you are still effective, and to also consider any other support you might need.

What else might happen? If you work for an organisation which has an Occupational Health department you may be referred for an assessment. Don’t worry about this, it’s just another way to explore in more detail what part of your job you can still do and any parts which may be affected. You may also discuss other skills you have which aren’t currently part of your job, and what the next likely step in your condition might be. Remember, you don’t have to panic. The law is on your side.


How long can I keep driving if I have dementia? Living with dementia doesn’t always mean that you have to give up your car straight away. In fact, most people continue to drive for around three years after being diagnosed with dementia.

Find out why and when you might need to stop driving Being able to drive is often a key part of maintaining independence as you get older, so if you’ve just been diagnosed with dementia you’re probably really concerned that you might lose your driving license immediately. But don’t panic. The good news is that a diagnosis of dementia or Alzheimer’s doesn’t have to put a stop to your driving.

Could this be YOU? You’ve been driving for decades and consider yourself a safe, responsible driver who’s never been involved in a road traffic accident. After all these years behind the wheel, driving is simply an automatic action that needs very little thinking, you are still perfectly capable of driving your car…

Two facts worth knowing Whilst you have every intention of continuing to drive safely, and the skills involved might feel totally automatic, driving does in fact require a complex mixture of thought processes and manual skills, which sadly can be affected by dementia. 1. Your spatial awareness — the ability to judge distances between areas — might not be as accurate as it used to be, and this can impact quite noticeably on your ability to work out safe distances while you’re driving. 2. Dementia can also affect your ability to make sense of road signs, remember routes and rules of the road, have quick enough reaction times to allow for stopping, starting and the actions of other drivers, and being able to read the road. BUT — Dementia is a condition that gets gradually worse, many of these symptoms may not be a problem for you yet, and it’s quite possible you could continue to drive for some time.


Telling the DVLA about your dementia

Fact It is a legal requirement to declare your diagnosis to the Driver and Vehicle Licensing Agency (DVLA) and you could face a fine if you fail to do so. Once this is done, unless your doctor has already advised that you stop driving, the DVLA will send a questionnaire to get permission to look at medical reports from your doctor. Advisors at the DVLA will then make a decision on whether you can continue to drive based on these reports. They may also request that you take a driving assessment at a mobility centre so you can be appraised. If they decide that you can still drive, you’ll get a new driving licence that’s valid for a limited time period (usually one year, but it can be longer). This means you’ll need to be reviewed once the licence runs out. If it’s decided that you can’t drive any more, you can appeal the decision, but you won’t be allowed to drive until the appeal is heard.

Remember! As well as telling the DVLA about your diagnosis, you’ll also need to inform your car insurance provider, as that could affect you if there was an accident.


Unsure if you should be giving up driving? These are the signs of unsafe driving: •

Forgetting how to locate familiar places or getting lost on the way home

Failing to observe or understand traffic signs

Making slow or poor decisions in traffic

Driving at an inappropriate speed – either too fast or too slow

Becoming angry or confused while driving

Hitting curbs – a classic sign of losing spatial awareness

Poor lane control and struggling to move between them, or overtake

Making errors at traffic lights, cross roads and roundabouts

Confusing the brake and accelerator pedals

Returning from a routine drive later than usual

Forgetting where you are going whilst driving

Talking to a loved one about their driving This might not be an easy conversation (in fact it might be more than one conversation) especially if the person you’re worried about doesn’t seem to realise they’re having difficulties, denies them or blames other drivers for their mistakes. If you’re having the conversation with a parent or someone you’ve always respected, consider how humiliating it might feel for them to be told by someone much younger (and less experienced on the roads) that they are no longer safe behind the wheel.

How to start Try something like this ‘I know how much your car means to you, but I also know how much you care about road safety and that you would want me to tell you if I thought it was time you gave up driving. Well, I think that time has come.’ If they seem surprised, gently give a few examples of some recent incidents that have worried you. Appeal to their sense of responsibility ‘I know you might still think you’re safe on the roads, but if you did make a mistake and other people got hurt, imagine how dreadful you would feel?’


Remind them that you are there for them to provide love and support (and a lift!) whenever possible. Tell them about the other choices they still have to retain their independence, such as discounted railcards and buses — you could even have some leaflets ready for them to read.

Not convinced? If they can’t accept it — or think you’re over-reacting — provide them with more evidence. For example, 1. Request a note from their doctor reiterating why they cannot drive. 2. Ask an objective third party, or even the driving authority to reassess their driving.

Say it again If you do manage to persuade them, there’s always a possibility that they might forget this conversation and will try to drive again. Be patient and repeat the conversation as many times as necessary, but stay firm and focussed — safety comes first. Remember, dementia doesn’t just cause driving problems, it can also cause mood and personality changes. Try not to take it to heart if your loved one becomes angry or frustrated as they’re struggling to understand what you’re telling them. You aren’t alone and you are doing the right thing.

Still not convinced? For some people, giving up their car is like losing a limb, and they simply refuse to do it. If this sounds familiar, you might have to consider taking away their car keys or moving the car so they can’t see it or drive it. But before you do this make sure they have other ways to get around and aren’t left feeling trapped at home.


No licence? No panic! What to do now… Being told you can't drive anymore is bound to be hard and might involve some big changes for the person you care about. If they are really struggling to come to terms with it, try to help them focus on other ways to get around, such as;

1. Free buses Make use of whatever public transport is available to you, including discounted or free travel fares. You will be able to apply for a bus pass that gives you free off peak local travel (after 9.30am on weekdays and at weekends) once you reach state pension age.

2. Cheap trains You can apply for a Senior Railcard from the age of 60, which will give you substantial discounts on fares.

3. Use your feet A walk to the local shops is far better for your physical and mental wellbeing than driving – and you won’t have to worry about parking either!

4. Phone a friend Don’t be afraid to ask friends or neighbours for a lift. After all, wouldn’t you be happy to help them if they were in your position?

5. Community transport If you need to get to a hospital appointment, there may be some form of free transport available to you, sometimes through the Royal Voluntary Service or a local charity.




Keeping your freedom and staying safe: What the law says Over time, someone with dementia will eventually lose the ability to understand information and make decisions based on that information. But when and how can anyone be sure that this time has come? Here’s a few laws you should know about.

The Mental Capacity Act 2005 This act is designed to protect and empower vulnerable people who are unable to make important decisions for themselves. These are the essential facts worth knowing.

In a nutshell Being free to make your own decisions (even if they’re ones that other people don’t approve of) is a fundamental human right and one which the law takes very seriously. The Mental Capacity Act 2005 might have a grim sounding name but it was put in place for good reasons. It has two basic functions: 1. It tells people what to do and how they can do it if someone can’t make decisions on their own. 2. It spells out very carefully what the term ‘lacking capacity’ actually means so that it cannot be open to abuse.


What does the law say? There are five key principles to the Mental Capacity Act 2005, and as well as protecting people affected by dementia, it’s also designed to help those with brain tumours, strokes, severe depression, schizophrenia and learning disabilities. 1. Every adult has the right to make their own decisions if they have the capacity to do so. Family carers and healthcare or social care staff must assume that a person has the capacity to make decisions, unless it can be established that they don’t. 2. People should receive support, and all possible steps should be taken, to help them make their own decisions. 3. People have the right to make decisions that others might think are unwise, and this should not automatically result in them being labelled as ‘lacking capacity’. 4. Any act done for, or any decision made on behalf of, someone who lacks capacity must be in their best interests. 5. Any act done for, or any decision made on behalf of, someone who lacks capacity should be an option that is less restrictive of their basic rights and freedoms — as long as it is still in their best interests.

Are you acting in their ‘best interests’? If you’re caring for someone with dementia it’s really important to be aware of what this term actually means. •

The person who lacks capacity must be involved in decisions as much as possible.

You must be aware of their wishes and feelings.

You must also consult with other people involved in their care.

ou should not make any Y assumptions based on their age, appearance, condition or behaviour.

ou need to consider Y whether the person you’re acting for is likely to regain capacity to make the decision in the future.


How will you know when they no longer have mental capacity? The Mental Capacity Act sets out a two-stage test: 1. Does the person you’re caring for have an impairment of, or a disturbance in the functioning of, their mind or brain, whether as a result of a condition, illness, or external factors such as alcohol or drug use? 2. Does the impairment or disturbance mean they are unable to make a specific decision when they need to? Individuals can lack capacity to make some decisions but have capacity to make others, so it is vital to consider whether the individual lacks capacity to make the specific decision. Also, capacity can fluctuate with time — someone with dementia may lack capacity at one point in time, but may be able to make the same decision at a later point in time. Where appropriate, individuals should be allowed the time to make a decision themselves. If the answer to both questions is yes, then they’ll be deemed lacking in mental capacity, and they may need help and support making decisions. Anyone can assess capacity. For everyday decisions, a relative or carer is the person most likely to need to assess whether the person is able to make a particular decision. Professionals are more likely to have to formally assess capacity when decisions are more complex. If the decision is about treatment, a doctor may assess capacity; if it is a legal decision, a solicitor may assess capacity. All medical and social care professionals and paid carers, as well as people performing certain roles and functions created by the Mental Capacity Act, must ‘have regard to’ the Code of Practice that accompanies the Act when they are supporting someone that lacks capacity. This involves paying attention to the Code and being able to demonstrate familiarity with its guidance. If they do not follow the Code, they should be able to give convincing reasons why they are not.

Deprivation of Liberty Safeguard (DoLS) Despite the grim sounding name, a Deprivation of Liberty Safeguard is actually an important piece of law designed to make sure that someone with dementia is always kept safe and gets the treatment they need and deserve.

In a nutshell If your loved one has reached a point where they can’t make decisions which are in their own best interests, in some circumstances they may need to be ‘ deprived of their liberty’ in order 31

to keep them safe. Try not to worry, this should only happen in exceptional circumstances. For example, if they’re in hospital for an important operation but keep wandering off, or refuse to have it due to a ‘lack of capacity’, then the medical staff may need to intervene and, if necessary, sedate them. This is called being deprived of ‘liberty’ because they are being stopped from doing what they want.

Why do we need the Deprivation of Liberty Safeguards? Depriving someone of their liberty is a very serious matter and safeguards are necessary to make sure the person affected is looked after properly and kept safe. If you’ve been told that your loved one may need to have their liberty ‘deprived’ in a particular situation, a special agreement called a Deprivation of Liberty Safeguards (DoLS) Authorisation should be in place. A DoLS Authorisation covers people in England and Wales over the age of 19 who have a mental disorder such as dementia or a learning disability.

How does a Deprivation of Liberty Safeguards Authorisation work? 1. The medical or care team must follow strict parameters laid down by a Code of Practice within the Mental Capacity Act. 2. They’ll need to apply to the local council or health trust (known as the supervisory body) for a DoLS and an assessor will be sent out to evaluate the situation. 3. It is the assessor who will decide if the person with dementia needs a DoLS. 4. If the assessor decides that the person is being deprived of their liberty, but it’s in their best interests, they’ll be issued with a Deprivation of Liberty Safeguards Authorisation. The process may involve a few changes until this is provided, or the assessors may decide the person should not be deprived of their liberty. 5. Once a DoLS Authorisation has been issued, the person affected will get a special representative who will visit them to make sure they are being looked after in a way that keeps them safe. 6. At any point, a review can be requested to check on this, and if the person affected or members of their family disagree about the DoLS, they can ask the Court of Protection to make a final decision. 32

Other examples of a deprivation of liberty: •

Staff in a care home having control over decisions in your life.

Medication being given against a person’s will.

taff deciding whether a patient can be released into the care of others or to live S elsewhere.

Staff refusing to discharge a person into the care of others.

Family, carers or friends not being allowed to visit.

In all the above situations, a deprivation of liberty should only happen if it’s for the greater good of the patient and to keep them safe.

The Mental Health Act If you’re caring for someone with dementia, it’s worth familiarising yourself with a few key parts of The Mental Health Act 1983, which are designed to protect the rights of people with dementia.

In a nutshell The Mental Health Act 1983 consists of more than 100 parts and deals with when and why it might be necessary for someone with a mental health problem (including dementia) to be admitted into hospital against their will. This is called being ‘sectioned.’ If you’re caring for someone with dementia the thought of them ever being ‘sectioned’ is probably very distressing — nobody wants to see a loved one taken into hospital if they don’t want to go — the word itself might seem frightening or shaming to you and everyone you know.

Three facts worth knowing • A section should only ever happen as a last resort when all other alternatives have been explored. If you don’t think this has happened you can challenge it (see below). • A section is designed to protect, not punish, the person with dementia and keep them safe from harm. • In 2012–13 nearly 9000 people over 65 were sectioned under the Mental Health Act, at least half of these were estimated to be sectioned as a result of severe dementia. 33

Three sections of the Mental Health Act you should know about: Section 2 If your loved one is behaving in a way that poses a danger to their own health, or to the health of others, they can be detained in hospital for an assessment by doctors under this section of the Mental Health act. But if they agree to go into hospital of their own free will the Mental Health Act does not need to be used, so it’s always best to try persuading them. Two doctors need to agree that the section is necessary, one of them must be a dementia specialist, the other is often a GP who knows the person well. Once the section is in place your loved one will not be allowed to leave the hospital without close supervision, though you can of course visit and advise staff on the best ways to help them stay calm. The maximum amount of time this sort of section can last is 28 days.

Section 3 This is similar to section 2 but can last for six months (or longer, if reviewed) and should only be used if a person needs treatment and refuses to accept it voluntarily. Treatment can mean anything from specialist nursing to medication or psychological therapies. 34

Section 117 Section 117 requires councils to provide free care home funding, or care at home — which is not means tested — for patients who are sectioned under Section 3 (see above). It’s important to be aware of Section 117 because it might save your loved one quite a lot of money. Take legal advice if your local council does not offer this funding or decides to withdraw it when your loved one still needs it.

Guardianship orders Doctors might decide that a Guardianship Order is more suitable for a person with dementia than a hospital section. The Mental Health Act allows individuals (such as a relative) or an organisation (such as a local authority) to be appointed the ‘guardian’ of someone with dementia. • Guardians must always act in the best interests of the person in their care, and can make decisions about where they should live and what medical treatments they receive. • Guardians cannot force anyone to do something they don’t want to do so they need to have a very good relationship with the person who has dementia. • Guardians have no control over money or finances.

How to challenge a section 1. You can ask for a hospital discharge (you will have to put this in writing). However, if doctors don’t agree, they can overrule it. 2. You can take legal advice and apply for something called a First-tier Tribunal or Mental Health Tribunal which may, or may not, find in your favour.

Good to know Although it can undoubtedly be traumatic, a section might also come as a relief. If you’ve been worried sick about your loved one’s behaviour but unsure what to do for the best, handing over the decision to experts (who aren’t emotionally involved) could mean that the person you’re caring for soon gets the sort of help they need — and you won’t have to worry quite so much.


Chapter 4: Moderate dementia: what might you expect? If the person you’re caring for has been living with dementia for some time, you may find that their condition has progressed. Mid-stage dementia is often the longest stage. For people with Alzheimer’s it can last many years so you both have time to adapt and still enjoy life as much as possible.

Mid Stage Dementia

Common symptoms of mid-stage dementia: 1. They’ve started to mix up day and night. 2. When you go out they keep walking off and getting lost. 3. They’re not looking after themselves as well as they used to. If this rings true, it might be that you need to reconsider your daily care plan and make some changes to keep the person you’re caring for safe and happy during the middle stage of dementia.

What’s happening? Damage to their brain means that the person you’re caring for may now find it increasingly difficult to express themselves verbally or do routine tasks such as dressing or bathing. If they’re still driving, they will need to stop, and this, combined with the need for more support with daily life, often results in them losing some of their independence. 36

Warning Everyone’s journey through dementia is unique, and these signs and symptoms of ‘mid stage’ dementia are only meant as a guide. Try not to take them too literally.

Good to know Although it’s undoubtedly upsetting to see a loved one becoming more confused and perhaps lose some of their independence, it’s also important to note that many people with mid-stage dementia still lead productive and purposeful lives. There are lots of stimulating, meaningful activities they can still enjoy — and some new ones they might want to take up, such as art or music.

Coping with the challenges of daily life Practical issues, such as getting dressed, bathing and brushing teeth can become problematic during the mid stages of dementia. Here’s a few ways to cope.

Six ways to make dressing easier The clothes you wear are often an expression of who you are as a person, so struggling to pick out an outfit each day and even knowing what order or how to put it on can be very difficult. So it’s no wonder that struggling to dress can be a common problem for someone living with dementia. Memory loss can mean putting on a shirt or trousers could suddenly seem much harder, especially if they also have mobility problems or difficulty with fiddly buttons or zips. Understanding the ‘rules’ of dressing (such as which clothes they should put on first) or dressing appropriately for the season and temperature outside can be a struggle, too. Luckily, with a little guidance, you can help someone living with dementia to still make their own decisions about what they wear, which will, in turn, help to make them feel more purposeful and happy. 37

1. Plan the night before Picking out clothes together the night before can help avoid the often overwhelming feeling of having to pick them out from everything in their wardrobe in the morning. You can chat through what the weather might be like and plan clothes accordingly. Then hang each item on a numbered hanger so that they know what order the clothes need to be put on the next day. Make sure the clothes are not inside out and that zips and buttons are all undone.

2. Give them a choice It’s important to get the balance right between giving your loved one some choice about what they want to wear each day, to foster a feeling of independence, but not too much, as being asked to choose something from a whole pile of clothes can feel overwhelming. You might want to label drawers so they can find some clothes themselves if they’re able.

3. Make the room comfortable Ensure that the room is warm enough to get undressed in and that the curtains are drawn so people can’t see in (especially if they’re in a downstairs bedroom). They may also need a grab rail or a chair to sit on while they dress and to provide support.

4. Give guidance If they can’t dress themselves, or lack the confidence, they’ll need a bit of direction, and the amount you give will depend on each individual. It may just be the case that they need a verbal prompt — ‘now put on your shirt, and then put your trousers on’. However, some people will struggle actually putting the clothes on and you may need to step in. Use actions and point to different areas of the body to help them understand which clothing goes wear. If they make a mistake, try to stay calm. Just patiently explain what they need to do — even have a laugh about it — and keep going.

5. Use dressing aids There are various gadgets and aids that can help to make dressing easier, particularly if they have mobility problems. These include shoe horns, elastic laces and gadgets to help you put arms through sleeves, do up bras and put socks and stockings on. You can also buy items of clothing that are especially adjusted to make dressing easier, such as back fastening shirts and trousers with side zips.

6. Allow plenty of time It may take longer than before to get someone with dementia dressed. Whether that’s because they’re unwilling to get into or out of clothes (which is a common occurrence), or because 38

they’re simply less mobile, it’s important to not rush the process so that they feel comfortable and calm.

Top tip: Grooming Shaving If the person you care for prefers to be clean shaven, they may need a little help to do so. If they’re used to an electric razor, these can be easier as they’re less likely to cause nicks and cuts. However, the noise may be disconcerting to some so bear this in mind. If they use a traditional razor and are no longer able to shave without cutting themselves, you’ll need to help them. Place a towel over their front and around their neck to catch any drips of water, wet their face, apply shaving cream and shave in the direction of the hair growth.

Hair styling Having your hair done can be a very enjoyable experience. Having a say in their appearance will increase their sense of independence, too. Whether it’s giving them a blow dry, or taking them to the hairdressers each week, experiences like this can really help improve their quality of life.


How to keep teeth clean: Your step-by-step guide to dental care Are you worried the person you’re caring for isn’t brushing their teeth properly? Do they refuse to let you do it for them? Tooth brushing is actually quite a complex task which can become increasingly difficult for a person with dementia.

Why it’s important • If the mouth isn’t kept clean it could cause painful gum infections and tooth decay. • Tooth ache can cause people with dementia to go off their food or become restless and easily irritated. Dental work, such as fillings and tooth extraction, isn’t pleasant at the best of times, but can be traumatic for someone with dementia — and is best avoided.

What might help? Prompts During the early stages of the dementia journey, a quick reminder may be all that’s needed. This could mean a phone call, a text, or a note stuck in a prominent place in the bathroom.

Sensitive supervision If you suspect a loved one might be struggling to remember what to do with a toothbrush, you could suggest you both brush your teeth at the same time. Watching you, and copying what you do, might be enough.

Not working? Don’t worry, you aren’t alone. If the person you’re caring for refuses your help and/or is adamant they’ve already brushed their teeth, it can be extremely difficult to persuade them otherwise.

Here’s a step-by-step guide that’s worth trying: 1. Use the kitchen sink, rather than the bathroom. A change of environment could lead to a change in response. Put their toothbrush and toothpaste right next to the sink (beside yours) where they can easily see it. 40

2. Say something like, ‘we need to brush our teeth’ or ‘why don’t we brush our teeth together?’ Then turn on the water, pick up your brush and get started. 3. Brush your own teeth without talking. 4. When you’re finished, put down your toothbrush and say, ‘oh my mouth feels really fresh and clean now.’ Then pick up their toothbrush, put some toothpaste on it and hand to them smiling but without talking. 5. If they still refuse to take the brush, try offering it again once more, smiling. But if they still won’t budge, smile and say, ‘it’s up to you,’ and walk away. 6. Try this technique several times a day — maybe you might be able to find a time when they’re more responsive to the idea? 7. Don’t give up. Try to stay positive, remember you’re doing the best you can under very difficult circumstances.

Maintaining dignity and personal hygiene Helping the person you’re caring for with their personal hygiene, requires the utmost sensitivity and skill, but it isn’t impossible. Washing, dressing and combing your hair — all activities that we would normally do without a second thought as part of our daily routine. But for someone with dementia, remembering to bathe or being able to brush our hair or shave can end up becoming an extra challenge to deal with.

Is this someone you know? •

You notice that they have been wearing the same outfit four days running.

They’ve got cuts on their face from shaving.

You can tell they haven’t washed for a while.

Someone who always used to be ‘well turned out’ is starting to look quite dishevelled.

Why is it happening? Alzheimer’s disease and other causes of dementia can mean someone could forget to wash or change their clothes regularly. They may not remember that they wore the exact same outfit yesterday, and the day before that, or whether or not they had a shower yesterday. They may also be suffering from mobility problems which could affect their ability to get into or out of baths or showers, or put items of clothing on. 41

What can you do? Talking to them about this isn’t the easiest of conversations. They may be embarrassed that they’re unable to cope, particularly with something like washing and bathing, which is such a personal activity. If you think that simply highlighting the issues could cause more hassle than it’s worth, you could try approaching it differently. For example, making it sound as if you want to ‘treat’ them and make them feel pampered. Offering to run them a lovely bubble bath or take them to the hairdressers (or book a mobile hairdresser) might go down far better than an awkward conversation You may want to get some products to help with bathing and items that can make the process safer and easier, such as steps, seats or hoists. You should also, of course, think about ways to maintain dignity while bathing so it doesn’t have to become traumatic for either of you. Ultimately, personal hygiene is a vital part of dementia care because it is integral to the sense of identity of someone with dementia, as well as being a key part in ensuring their comfort. Taking steps to maintain it is important for ensuring a good quality of life for them.


Dementia and sleep problems Everyone feels better after a good night’s sleep and people living with dementia are no exception. As the illness progresses many people are unable to get a full night’s sleep. But there are ways to help them (and you) sleep and rest more.

Recognise these problems? It’s very common for someone with dementia to experience sleep disturbances. This can be extremely difficult and tiring, not just for them but for you too. Some of the most common symptoms include: •

Difficulty sleeping

Frequent waking during the night

Night time wandering

Daytime napping

undowning — an increase in restlessness or aggression in later afternoon or early S evening which is related to body clock problems.

Why do they happen? Changes in the brain We’re not entirely sure what causes sleep problems in people with Alzheimer’s disease and other dementias, but like many of the other symptoms, it’s most likely down to changes within the brain. This can cause mix-ups in the body’s circadian rhythm (body clock), which can make it harder for people to realise when it’s day and night.

Disorientation after dreaming Dementia can lead many people to become confused and struggle to distinguish between reality, older memories and even dreams. They may wake from a dream and assume that as it was daytime in their dream, it must be daytime when they’re awake, too.

Less need for sleep It’s common among older adults for them to need less sleep, or shorter spans of sleep than they did when they were younger, which could cause them to wake more frequently.


Medical problems Some health issues and medications can affect sleep. These include restless legs syndrome, urinary tract infections, depression and sleep apnoea (an abnormal breathing pattern).

Coping strategies It’s extremely important that you look into ways of dealing with sleep problems as disturbed sleep can often affect the carer even more than the person with dementia, as they cannot get enough sleep and are constantly worrying about what will happen during the night.

Tips to try: 1. Ensure the sleeping area is comfortable. Check the room temperature isn’t too hot or cold, that they have adequate bedding, and that if they do get up, they can see their way to get to the bathroom if needed with night lights. 2. Consider putting blinds or blackout curtains in the room so they can see that it’s dark and don’t need to get up. 3. Put a clear clock near to their bed which shows not just the time, but whether it’s day or night. 4. Watch caffeine and alcohol intake near to bedtime as they can disturb sleep. Large amounts of food, especially sugary meals can also make it harder to fall asleep. 5. Make sure you get out and about with the person with dementia during the day. Exposure to daylight is important for helping to regulate the body clock. 6. Install a bed monitor if you’re worried about night time wandering, which will alert you if they leave the bed or bedroom. 7. Think about your own mental and physical exhaustion. The person you’re caring for may pick up on your stress and this can contribute to sundowning at the end of the day.

A word on sleep medication… It can be tempting to say that all the person with dementia needs is to pop a couple of sleeping pills to help them sleep through the night. However, the risk of giving sleep medication to someone with cognitive difficulties may not be worth it. They’re at increased risk of falls and fractures, confusion and a decline in the ability to care for themselves. It’s definitely worth trying some of the other strategies before looking into sleeping pills, and if they are used, they should only be for a limited amount of time, as advised by their doctor. 44

Chapter 5: More mid-stage challenges The middle stage of the dementia journey can bring an increasing number of behaviour challenges and practical concerns. Here’s the most common issues you could face and how to deal with them sensibly and sensitively. Coping with hallucinations If your loved one has already experienced a hallucination you may have found it very scary and difficult to watch, but there are ways to cope.

In a nutshell A hallucination can involve seeing, hearing, smelling, feeling, tasting (or a combination of them all) something that isn’t there. Hallucinations are caused by changes in the brain which, if they occur at all, usually happen in the middle or later stages of the dementia journey. Hallucinations are more common in dementia with Lewy bodies and Parkinson’s dementia but they can also occur in Alzheimer’s and other types of dementia.

BUT • There’s a difference between a hallucination and a delusion, which is usually caused by paranoia or suspicious feelings and thoughts. • Some ‘hallucinations’ are simply visual mistakes caused by eye sight problems which are quite common in people with dementia. (See below).


Is it really a hallucination? First make sure that what you’re dealing with is a hallucination caused by dementia and not simply the result of:

Eye sight problems Dementia can affect sight and vision in many different ways. For example, a person with dementia might mistake a reflection in the mirror for an intruder or think people on TV are in the room with them. They could also have problems recognising familiar faces or become wary of familiar environments, for example, a shiny floor might look wet, a shadow in a corner might look like a hole. So before assuming they’re having an hallucination, arrange a sight test with an optician and make sure each room in the home is well lit and dementia-friendly.

Other health issues A kidney or bladder infection, alcohol, and certain medications (such as some anti-depressants, stroke or migraine medication and drugs for Parkinson’s) can also cause confusion and lead to hallucinations.

Dealing with hallucinations •

Don’t try to reason with your loved one because it simply won’t work. In fact, knowing you don’t believe them might make them even more upset and agitated.

Do stay calm. Your loved one isn’t going mad, what they’re seeing is simply a symptom of their illness. You could try saying something such as ‘Don’t worry, I’ll take care of you, I’m here to protect you.’

Don’t pretend you can see or hear what they can. It won’t help and it could make your loved one even more confused or agitated.

Do check your environment. Turn off the TV, turn on lights so the room is well lit, and turn off anything that might be triggering a hallucination such as a TV, computer or radio.

Don’t diminish their experience. Saying ‘Oh, don’t be silly there’s nothing there’, is quite demeaning because it belittles what they’re seeing, which to them is very real.

Do be kind and acknowledge how your loved one might be feeling during the hallucination. For example, ‘It sounds very scary, I can see how upset you are.’


Do distract the person you’re caring for if possible. For example, if they’re hearing voices that aren’t there, try chatting to them. It’s harder to hear voices if someone is really talking to you. If they can ‘see’ someone, sit facing them and get eye contact if you can. Again, if they can see you clearly during the hallucination it could make the experience less powerful and less intense.

Did you know? Around one in 10 people with dementia with Lewy bodies experience olfactory hallucinations — smells that aren’t really there.

Need more help? If your loved one is still becoming very distressed by hallucinations: 1. See your GP but make sure you take some notes with you about the hallucinations. For example, how long they last, what they involve, what time of day they happen and details of any medication they might already be taking. 2. If nothing else seems to help, you may want to consider anti-psychotic medication. Anti-psychotics do carry risks and have, unfortunately, often been oversubscribed in the past but they can be very effective in reducing or stopping hallucinations, so don’t automatically discount them if your loved one is really suffering. BUT — if the person you’re caring for has dementia with Lewy Bodies any prescription for antipsychotics must be strictly monitored and regularly reviewed.

Good to know Many carers say that activities which help to reduce anxiety such as art or music therapy and reminiscence or pet therapy, have helped their loved ones cope with hallucinations.


Agitation and aggression: what’s causing this behaviour? It’s one of the most upsetting and difficult symptoms of dementia. Find out what could be causing hostile or violent behaviour in the person you love or care for. Dealing with aggressive behaviour can be really tricky. However, once you begin to understand the reason behind the behaviour you can start to make sense of it and learn to respond in a way that helps to stop it. Aggressive behaviour can be either verbal, such as swearing, screaming and shouting, or physical, such as hitting, pinching, scratching, hair-pulling and biting. BUT — it’s important to remember that aggression isn’t a universal symptom of dementia — some people will get it, and some won’t.

Causes of agitation and aggression 1. Physical discomfort If the person you’re caring for is ill or in pain, they may lash out because the pain makes them feel confused or frightened — they simply don’t understand it. It could be down to illnesses such as a bladder or throat infection, or they may feel uncomfortable because they’re constipated or thirsty. And don’t forget about any long-term health issues which could be causing discomfort, such as arthritis, or the affect that medications could be having on their mental wellbeing.


2. The environment Is the room too bright, noisy, crowded, hot, cold or just generally over-simulating? This could make someone with dementia feel lost or overwhelmed and then lash out in fear or frustration.

3. Social issues Find out if the person you’re caring for is lonely, bored or lacking social contact. If other people are involved in their care it’s worth finding out if there’s been any changes recently. For example, if a favourite carer is on holiday it might make someone with dementia feel unsafe, and start acting aggressively.

4. Psychological problems Dementia affects your perception and understanding of the outside world. If you feel as if your rights are being ignored — as some people do — it can make you want to lash out. Changes in the brain can also make people living with dementia feel more extreme reactions than they used to. So whereas before they might have reacted with frustration if they felt someone was being rude to them, now they respond with violence.

Did you know? More than half of people with dementia are verbally or physically aggressive. Dementia can also cause hallucinations, delusions and paranoia, which can lead to aggression, as they don’t really understand what is going on. If the person you’re caring for doesn’t recognise where they are, or who you are, they might think you’re a stranger trying to hurt them. So it makes sense that they might lash out and hit you — wouldn’t you do the same?


How should you respond to aggressive behaviour? Being on the receiving end of aggressive behaviour caused by dementia is undoubtedly difficult and often traumatic. However there are steps you can take to manage it both now and in the future. There’s no ‘one size fits all’ answer, but generally speaking it’s best to: 1. Try to stay calm 2. Identify the cause 3. Step into their shoes 4. Reassure and listen 5. Use distraction tactics 6. Don’t punish them 7. Talk to a friend

1. Try to stay calm While this might seem easier said than done, an angry or defensive response could make the situation worse. Try not to show any fear or alarm, take a deep breath and step back to give them some space to calm down.

2. Identify the cause This won’t always be obvious, but think about what happened immediately before they became violent and ask yourself if that could have triggered it. For example, could they be in pain or uncomfortable and can you remedy it?

3. Step into their shoes Try to look at the situation from their perspective. If they’ve reacted strongly after you’ve tried to bathe them or helped them use the toilet, it could be because they feel embarrassed or ashamed. Even though you know you’re only trying to help, dementia can mean the person you’re caring for no longer has the same level of reasoning or logic.

4. Reassure and listen Once they have stopped acting violently, and are willing for you to approach them, maintain eye contact and talk in a low, soothing (but not patronising) voice. Explain calmly that you want to help and listen if they’re able to tell you what the problem is.


5. Use distraction tactics Try shifting the focus to another activity if you think this is what is causing the aggression, or pick a pastime that is more relaxing, such as listening to music or going for a walk with them.

6. Don’t punish them It can be easy to feel like you want to scold the person like a naughty toddler when they’ve been aggressive, but they probably have no real concept of what they’ve done wrong, or why it’s inappropriate (and may not even remember the incident the next day).

7. Talk to a friend Try to avoid unleashing your frustrations on the person you’re caring for. Make time to meet with friends who understand your situation, talk to your GP, a counsellor or a dementia support worker, or even vent your feelings in a blog or in a support group for carers. . There will be other people out there who are in the same boat.

What about next time? If you’re worried this could be the first of many aggressive incidents, think about how you might be able to prevent it happening in the future. Make a note of the incident so you’ll remember exactly how it panned out and what potential ‘triggers’ you can avoid. For example, if it happened when you tried to help them bathe, think about doing it differently next time - or asking someone else to help them instead. You might also want to find out what products are available to help the person you care about maintain some independence... in this area and reduce the risk of further flare-ups. Look for common signs that they might be in pain. For example, rubbing or pulling at an area of the body, a change in appetite, a temperature or swelling and inflammation. Expect some trial and error when working out how to manage aggressive behaviour, particularly as the person you're caring for may not react in the same way the next time.

Good to know In the past, people who developed aggressive tendencies related to dementia were prescribed anti-psychotic drugs. There’s now a strong move away from the use of these drugs, and if they are used, it should only be as the very last resort and for a minimal amount of time. 51

How can I help to prevent falls in someone with dementia? Falls can be a big worry if you’re caring for someone with dementia who is becoming increasingly frail and unsteady on their feet. But there are steps you can take to keep your loved one safe and well.

Why do people with dementia fall? The likelihood of suffering a painful fall increases for everyone as they get older, this can be because of health conditions such as heart disease and low blood pressure (hypotension). Around one in three adults over 65 who live at home will have at least one fall a year, and about half of these will have more frequent falls. Sometimes, falls are caused by sight or hearing problems (the latter because things like ear infections can severely affect balance). However, people with dementia are particularly prone to falls not just because of their age, but also because as their brain deteriorates, it affects their spatial abilities, gait and ability to judge distances. People with Lewy body dementia and Parkinson’s disease dementia are most likely to have problems with falls, but it can affect anyone with the condition.

How to prevent falls Falls are part of getting older, and in many cases, it’s not always easy to prevent them altogether. However, there are some steps you can take to reduce the risk.


Look at the environment Remove clutter: Make sure that the main living areas of the home are free of clutter — piles of books, low coffee tables, bags, boxes — so they don’t become a tripping hazard. Check their slippers: Those comfy, cosy slippers they love to wear could cause a serious fall if they’re worn out or flimsy. In fact, slippers are one of the biggest causes of accidents at home in elderly people. Get rid of slippers without backs and bin any that have no grips. The ‘bootie’ style is definitely safest. Think about colour contrasts: Brain changes in people with dementia mean they can struggle to notice the difference between colours unless they contrast well. For example, a cream-coloured sofa or chair that matches the cream carpet is a lot harder to notice than a blue or brown sofa. This means they could stumble as they try to sit down or trip as they walk past it. Similarly, dark mats in the middle of the floor can look like a hole in the ground to someone with dementia as their brain and eyesight aren’t communicating properly, and it means they could try and step round or over the ‘hole’ which could lead to a fall. Watch out for loud noises: Sudden loud noises — such as a shrill telephone sound or loud door knocker — could cause someone with dementia to turn quickly, meaning they become disorientated, dizzy and may fall. Obviously you want them to be able to hear when people are trying to contact them, but be mindful of the fact that if the sounds are too loud, they could pose a risk, too. Be careful of slippery surfaces: In most cases, the biggest risk for slipping is in the bathroom. This is because the floor can become wet, or someone can trip over a discarded towel or bathmat. However, also watch out for bathroom floor tiles that are very shiny, as someone with dementia may get confused and think the floor is wet, causing them to try and step over or around the floor and lead to a fall.

Provide support Set up grab rails: Think about ‘problem areas’ in the house where someone with dementia may struggle with mobility. The key places are probably entering the house (particularly if there are steps to come up to the front door), the stairs, low seats or armchairs, bedrooms and bathrooms as they’re all places where you’re going from sitting to standing positions or having to step up. A well-positioned grab rail could come in handy here to provide extra support.


Adjust your phone ringer If the phone starts to ring and someone is trying to reach it in time, they may try to rush to pick it up before the answerphone kicks in (which is when many people then hang up). If there are only a few rings, and the person you’re caring for isn’t especially mobile, this could prove tricky. Set up the phone so that it rings for a decent length of time for someone to get from one area of the house to the other to answer it, and then have it click onto an answerphone.

Think about activities Encourage exercise Getting out and about isn’t just good for boosting mood. It can also help to build strength in muscles, which is vital for helping older people maintain their balance and stability. While walking is a great place to start, other activities such as yoga, tai chi, Pilates or resistance exercises are even better.

Watch out for sundowning Sometimes, people with dementia can become restless and aggressive around late afternoon and early evening. This is known as sundowning and needs to be monitored as it’s also a time of increased risk of falls, as the person affected will be distracted and more prone to walking off. If sundowning is a problem, try to arrange activities that will help to keep them focused but calm during this time.

Get prepared If falls have become a real issue or worry, it’s worth looking into what products are available to help someone at risk. Some may not actually prevent the fall, but they could help the person once they’ve fallen, to reduce any damage done and get help as soon as possible.


Alarm pendants Often worn round the neck as a necklace, but also available as a bracelet, an alarm that someone can press if they fall and can’t get up is a really good idea. They’ll give the person with dementia and their carer peace of mind in case the worse should happen. HOWEVER, if they’re prone to forgetting to put their pendant on each morning, you may need to set up some kind of system to remind them.

Movement sensors These can be placed throughout the house to monitor movement and alert someone if there hasn’t been any for a while (they can also do the opposite and tell you if there’s been movement when there shouldn’t be — at night, for example). That way, if a loved one falls over and can’t move for a few hours, a message can be sent to a carer or family member to let them know so they can check on them.

Hip protectors Hip fractures and breaks are all too common in people over 65 and can have a disastrous effect on mobility and confidence. However, you can buy special underwear which have built in padding around the hips to help cushion them in case they take a tumble. And don’t worry, you won’t be forcing them to look like the Michelin man — the protectors are actually quite small and discreet and usually won’t be noticed under clothing.

Low beds Try to avoid high divan-style beds as getting in and out of them can cause falls. Of course, very low beds can also be difficult to pull yourself up from, so try to find a happy medium and perhaps set up some rails near the bed to help them pull themselves up into a standing position safely.


Chapter 6: Coping with the system The health and social care system is designed to help you and your family on the dementia journey. Here’s some of the people you’re likely to meet and the kind of support you might be offered. The role of social services People with dementia generally receive help from two places; the NHS and social services. Whilst NHS care is generally free for everyone, (including nursing, community nursing and hospital care) the support you get from social services might not be completely free because it’s means-tested. But you won’t know for sure unless you’ve had an assessment.

Did you know? Social Services is sometimes divided into children’s services and adult services. For any query relating to dementia, you need to contact adult services.

Your Social Services Checklist 1. Find the phone number. Then add it to your contacts book — you might need to use it quite a lot.

2. Ask for an assessment The person you care about should receive a community care assessment. (See below). If they haven’t had an assessment yet, phone your local social services department and ask for one. If you’re caring for someone with dementia you should have a carer’s assessment. If you haven’t, call social services to arrange one. A social worker should then contact you to sort out an appointment.

3. Read the care plan Once the assessment is completed you should be given a care plan detailing what help the person with dementia needs and how the help will be provided. If they do qualify for free help you should also be offered the option of having a personal budget.


So what can social services offer? A wide range of support could be available to make your life easier. For example, help with washing and dressing, meals on wheels or frozen food delivery, shopping, cooking and cleaning. You can also get help with taking medication, managing money, paying bills and claiming benefits. You might even find you’re entitled to free equipment and adaptations to make your home safer.

People you might come across Social workers This is the person most likely to carry out your assessments and who can make all the care and support arrangements (which might sometimes be carried out by a different organisation). They might also be called a care manager or a case manager.

Care workers This is the person who helps your loved one with tasks outlined in their care plan. If they need help with dressing, cleaning or shopping they will assist them. Care workers have many different names, including home care worker, personal assistant, social care worker and carer. If a care assessment reveals that this kind of assistance is required, it should be provided by social services, but it may not be free of charge. Your loved one's income and savings are likely to be taken into account and they may have to pay for some or all of the care themselves.


Occupational therapist If you think their home may need any special equipment or adaptations, an occupational therapist can offer advice. Some occupational therapists are employed by social services and others are employed by the NHS so it’s worth asking your social worker or GP how you can access their support. TIP: Community health specialists and community or district nurses are employed by the NHS not social services, so ask your GP about what help they can provide.

When dealing with social services • Be patient. If you have a query or problem you might have to repeat your story several times before you get the right help from the right person, but persistence usually pays off. • Be organised. Keep copies of forms, letters and any other information you’ve already been given. • Be positive. You might be pleasantly surprised by the variety of help on offer and the quality of the information and support you can access.

Good to know A social worker can also help you work out what benefits you might be entitled to, and if you don’t qualify for free help they can still tell you about services you could access. Social services should also be able to give you a list of local registered private agencies if you’d prefer to go down that route instead.


How do community nurses help with dementia care? Community nursing can be a vital resource for people with dementia and their carers. Being able to call upon the expertise of a health care professional who is medically qualified, may also have experience of dementia, and is willing to support you in your own home, is often a huge help. Here’s three types of community nurse you might meet on the dementia journey:

1. Community mental health nurse Also known as community psychiatric nurse (CPN) a community mental health nurse looks after and supports people with mental health problems such as depression, anxiety, psychotic illnesses and dementia. The first time she visits your loved one she might carry out an assessment to find out the kind of problems they are having and what she can do to help. For example, she can suggest practical ways to help with memory problems such as assistive technology and dementia clocks. She may visit them at home (or you can sometimes see her at your GP’s surgery). She might be able to refer the person you care about for a more detailed memory assessment and may even be able to check that they're receiving the benefits they're entitled to.

2. Community nurse Also known as a district nurse, she provides care to people just out of hospital or those who are housebound. If your loved one is recovering from an operation, an accident or an illness which required medical intervention, they will probably get a few visits from a community nurse. Her job is to carry out general practical nursing tasks such as changing bandages, dressing wounds, checking insulin levels of people with diabetes, making sure medication is effective and properly managed and referring patients on to other services they may need such as physiotherapy or social services.

3. Specialist dementia nurse Some parts of the UK now have their own Community Dementia Nurse (CDN) based in GP surgeries, who are there to help you deal with specific dementia-related issues. If you’re lucky enough to have a CDN (ask at your local surgery) make the most of her — the combination of medical and practical knowledge she has could be invaluable. CDNs are still quite few in number, though that is likely to change as the need for them rises. You may be able to access an Admiral Nurse based in your area. Admiral nurses are specialist dementia nurses who visit you at home and provide practical and emotional support to the person you’re caring for, and to you. They are skilled enough to take on quite complex cases and to help you make tough decisions, such as moving a loved one into a care home, or dealing with behaviours and feelings you might find it difficult to discuss with anyone else. 59

How to get a visit from a community nurse Ask at your GP’s surgery. You may be able to contact a community nurse directly or you may have to make an appointment to see a GP who will then refer you.

Good to know Admiral Nurses aim to help everyone who needs them and are based throughout the UK. For more information call the Admiral Nurse helpline on 0800 888 6678

How to get more help at home Are you worried that your loved one with dementia needs more support? Here’s how to get a care needs assessment and make sure they’re getting all the help they’re entitled to. Many people living with dementia find they need more help with day-to-day life as their illness progresses. Perhaps they’re having more trouble preparing meals, shopping for food, or getting around the house? Paying for help can be expensive but this might not be necessary because your loved one may be entitled to free or low cost care provided by their local authority. To find out if they’re eligible, they must have a ‘care needs assessment’, which is sometimes called a ‘community care assessment’ or a ‘needs assessment.’ 60

How do I arrange a care needs assessment? There are several ways to do this. The person with dementia can request one themselves by phoning social services (these requests are usually handled by the Adult Services team or Adult Social Care department). If they aren’t able to do this, you can call on their behalf. A GP, nurse, or social worker can also make the referral.

What happens next? Before the assessment takes place, the person with dementia will be sent some information in advance, including the kind of questions they might be asked. Areas of interest include how they’re currently managing, who helps them, what they can and can’t do and how they’d prefer to be helped in the future. It’s worth spending some time looking at the questions together and thinking about your needs and wishes.

Two tips: 1. Make notes or keep a journal in the days leading up to the assessment. Is there a particular time of day when extra care might be very useful? Is there a task or activity that your loved one may need extra help with? Would mobility aids be useful? You may find you’re entitled to some free equipment. 2. Collect evidence that what you’re asking for is fair and reasonable. For example, if the person with dementia recently burnt themselves on a cooker can you get a letter from a doctor or nurse to add strength to your concerns about their safety in the kitchen?

Three facts about the care needs assessment: 1. A care needs assessment is usually carried out in the person’s home, but it can sometimes be done over the phone. 2. It’s carried out by a social worker — who may be called a care manager — but a nurse or doctor might also be involved. 3. It can sometimes be carried out at the same time as a carer’s assessment.

Golden rule: Be honest It’s pointless putting on a brave face during a care needs assessment or pretending you can cope when you can’t. The assessment is designed to make sure a person with dementia gets the help they need and deserve so they can continue to enjoy life.


How care needs are assessed Whether or not your loved will get free or low cost care as a result of a care needs assessment depends on: • Financial situation — their income and assets such as savings and shares will be taken into account. • ‘Eligible care needs’ — these are based on the findings of the care needs assessment and can include the need for assistance with eating and drinking, personal hygiene, safety at home, dressing or simply being helped to maintain a social life so they don’t become lonely and isolated. If the person you’re caring for meets the criteria, a care plan will be drawn up detailing what help they will receive. If they are asked to make a financial contribution towards any of this, the amount should be ‘reasonable’ and should not leave them in financial hardship. If they aren’t considered eligible now, you could request a review to take place when their illness progresses or if your loved one’s financial situation changes.

What is a personal budget? A personal budget is the amount of money a person with dementia might be able to receive to make life a little easier. Personal budgets can be used to pay for anything from a full time carer, to a once-a-week taxi to visit grandchildren. The money is often paid directly to the person it’s intended for — this is called ‘direct payments’ — so that it goes into their bank account and they can be in control of it themselves, which is all part of the Person Centred Care ethos.


BUT — many carers are understandably concerned that their loved ones won’t be able to manage the budget themselves (it can be quite complicated). And even if they could manage it, they might not want the stress. SO — you — or they — can request that the money is managed by someone else. BUT — this can mean employing someone, including taking references and doing background checks etc. SO — the council will sometimes take on the role of managing the budget itself (or at least the biggest part of it). BUT — if your loved one is no longer considered to have Mental Capacity to either decide who should take on this role or to handle direct payments, you can ask to take on the responsibility for the budget yourself, by becoming what’s known as an ‘authorised person’.

How to get a personal budget Not everyone with dementia is entitled to a personal budget. To find out if your loved one is eligible you must: 1. Ask social services for a care needs assessment and fulfll certain financial criteria before being told if they are eligible. 2. Devise a care plan showing how the personal budget could be best used to meet your loved one’s needs. 3. Ask social services to check the care plan and get council approval. 4. Work out how to manage the budget itself (see above).

Good to know Although personal budgets might sound complicated, and the direct payment method has not been without its problems, the idea behind the creation of personal budgets was to highlight the uniqueness of every person’s dementia journey, and to acknowledge that every person will have different needs along the way — which is surely a step in the right direction.


Chapter 7: Late stage dementia — what to expect You are probably dreading this part of the dementia journey because it sounds so bleak, but there are ways to make more advanced dementia a little easier on everyone. What are the signs of later stage dementia? The person you’re caring for has been living with dementia for a long time — perhaps many years. You’ve both had your fair share of problems but, generally speaking, you’ve coped admirably well. However: 1. They now need round-the-clock care. 2. They rarely talk or have little conversation. 3. They no longer recognise you or any of their nearest and dearest. The advanced stages of dementia can be incredibly hard for family and friends, but it’s important to be realistic about what you can — or can’t — cope with, and to accept any help that you’re offered. Carers are often under a great deal of strain during this part of the journey, so make sure not to neglect your own health or needs.

Late Stage Dementia


Four symptoms of later stage dementia 1. Increased frailty Weight loss and other health issues, such as arthritis or a stroke, can lead the person you’re caring for to become increasingly frail and less mobile. Many people with dementia also gradually lose the ability to walk — they may start shuffling or prefer to stay seated most of the time.

2. Total reliance on others They will need lots of help with eating, dressing, washing and using the loo. In fact, this may be too much for you to cope with yourself and you might find it’s time to consider other options such as a care home.

3. Problems communicating Their verbal skills could now be very limited but it’s important to allow them to talk anyway if they want to, and for you to continue talking to them as you normally would. They may try to communicate in other ways if that’s easier. For example, some people may give clues through body language or facial expressions as to how they’re feeling.

4. Severe memory loss Even memories from childhood which were once so vivid may now seem hazy and they’re becoming increasingly disorientated. For example, believing they are newly married, or that you are their child not their partner. Warning: Each person with dementia is unique and these symptoms are only a guide as to what may happen in the later stages of dementia. Don’t take them too literally.

Good to know •

There are still ways to make life more pleasant and more comfortable for your loved one by stimulating their senses. For example, try playing their favourite music, giving them a hand massage, or spraying their favourite perfume around their room.

You aren’t alone. Get support from other people who are going through something similar, either by joining a support group or by going online and talking to someone in the Unforgettable Dementia Support Group.


Problems with eating: 10 ways to cope with chewing and swallowing difficulties It can be very scary to watch someone with dementia choke on their food or seem unable to swallow. Find out what you can do to help.

In a nutshell Swallowing and chewing problems tend to occur in the later stages of dementia, and can be very worrying for carers, particularly if their loved one is already frail. Here’s how you can help overcome some of the most common difficulties around chewing and swallowing and make mealtimes less stressful for everyone.

Six signs of swallowing or chewing problems: 1. Coughing during or after eating or frequently clearing the throat. 2. Grimacing when swallowing. 3. Exaggerated movement of jaw, lip or tongue. 4. Holding food in mouth but not doing anything with it. 5. Refusing to swallow or spitting lumps of food out. 6. Cramming too much food in the mouth or eating very fast. This behaviour can be very distressing to watch but if you can work out what’s causing it you might be able to prevent it happening, or at least reduce how often it occurs.


Why might they experience swallowing or chewing problems? A sore mouth Mouth ulcers, or red, bleeding gums can make chewing food very painful. Tooth ache Decayed, discoloured, lose or cracked teeth may also be causing pain. Do they grimace when they eat cold food such as ice cream? This could mean their teeth are very sensitive. Dentures that don’t fit If the person you’re caring for has lost weight their dentures may no longer fit properly. Loose dentures can cause painful mouth ulcers. If they seem reluctant to wear their dentures, this could be why. Medication Some medication causes a dry mouth, making swallowing and chewing more difficult. Infection Chest, throat or urinary tract infections (UTI’s) can cause further confusion and loss of appetite.

Dysphagia This is the medical term for the swallowing difficulties which can occur in moderate to advanced dementia. Dysphagia is also quite common in frail elderly people who’ve suffered other acute or chronic illnesses such as a stroke or respiratory diseases. As dementia progresses, dysphagia can become increasingly difficult to manage.

BUT Swallowing and chewing problems can differ widely, often depending on the type of dementia your loved one has.

Two facts worth knowing • A US clinical study compared swallowing problems in people with later stage Alzheimer’s and later stage vascular dementia and found that those with Alzheimer’s had more difficulties swallowing fluid, whereas those with vascular dementia found semi-solid food more difficult to manage. 67

• Frontotemporal dementia affects the frontal lobe of the brain which is linked to behaviour, and can cause some particularly challenging issues around food, including swallowing and chewing. Some people start eating compulsively, often sweets and other sweet foods. It’s also quite common for people with frontotemporal dementia to eat extremely quickly and cram food into their mouth, often resulting in choking.

Who can help? Go to the dentist — any teeth or gum problems might be quite easy to spot. Ask your doctor to refer you to a speech and language therapist for a swallow assessment, which could identify the precise cause of a swallowing problem. The therapist should also be able to offer you advice on coping. Ask for a referral to a dietician for nutritional advice and support.

10 ways to make eating easier 1. Offer soft food that requires minimal chewing. 2. Use smaller utensils and specially designed cups which allow drinking whilst keeping the chin down (avoid feeder beakers as they encourage people to tip their head back). 3. Choose strong flavours rather than bland ones, as these can stimulate the brain to swallow, and also try to offer a variety of hot and cold food in one meal. 4. If the person you’re caring for is extremely slow to swallow, try putting an empty spoon to their mouth, as if offering more food. This can act as a reminder to swallow. 5. Make sure they’re sitting upright and are as calm and comfortable as possible before you begin. 6. Consider thickening fluids to make the food easier to control, you can get advice about how to use them from your GP or a dietician. 7. Avoid small hard textures such as sweetcorn, peanuts and peas, and stringy textures such as cabbage, or bacon. 8. Cook food longer, mash it with a fork, or puree it in a blender or liquidiser. 9. Try not to offer mixed textures of liquids and solids, such as milk and cereal or minestrone soup as they can make choking more likely. 10. Be patient. Accept that meal times are probably going to take much longer than they used to, but try to prioritise them. If you can help the person you care for to eat more than they normally would, it’s probably worth the extra time and effort. 68

You can’t cope anymore Don’t forget that caring for a loved one with dementia is one of the most difficult jobs you can do. Caregiver stress and depression are common side effects, and if you’re not young yourself, it might seriously affect your own health, too. There’s no shame in accepting your loved one now needs more care than you can provide.

Is it time to choose a care home?

Feeling guilty? Don’t worry, this is a decision which can leave everyone feeling sad and guilty. But try asking yourself what your loved one would say to you if they didn’t have dementia. Would they say; ‘I want you to keep worrying and wearing yourself out so that I can stay at home,’ or would they say; ‘You’ve done enough for me, and I want you to be happy, too.’

Good to know

Handing over some of the day-to-day care to a professional could help your relationship rather than hinder it. Instead of being a nurse/carer you can go back to being their wife/ partner/son/daughter — and enjoy some quality time with each other.

You might be pleasantly surprised. More and more care homes are gearing up to the needs of people with dementia and can be very welcoming, homely places. Or you may find other choices available to you, such as assisted living or sheltered accommodation.


Two facts worth knowing • Around 322,000 people with dementia live in care homes — that’s one third of people with dementia. • Around 80 per cent of care home residents have some form of memory problem.

How do I pick a care home? You realise that your loved one can’t live at home anymore and you know it makes sense for them to move into a care home but: • You’re confused about which sort of home they’ll need • How can you trust what they say in their brochures? • What if you make the wrong choice? Choosing somewhere for your loved one to live is a massive responsibility — it’s no surprise many carers feel overwhelmed. But with the right information and support you should find it a bit easier.

Two types of care homes Residential care homes These are staffed with carers who can offer personal care such as washing, dressing and eating. Staff might also be trained in dementia care, but not in nursing. 70

Nursing care homes/EMI These have to have a qualified nurse on duty 24 hours a day. The term EMI (it stands for Elderly Mentally Infirm) is still sometimes used to describe nursing homes for people with dementia but it is generally considered an outdated term. These days, EMI usually refers to people who have later stage dementia or very complex needs. BUT — some residential care homes have EMI units which can be useful for people with dementia. It’s often reassuring to know that if their condition progresses, the care home will be able to accommodate any extra needs or nursing requirements, rather than the person with dementia having to move again to a different home.

How do you know which type of home to choose? The good news is you don’t have to make this decision yourself. Every person living with dementia is unique and many have other needs or medical conditions to take into consideration, too, so before you start looking at homes, your loved one needs to be assessed by a nurse who will decide whether they need nursing care or residential care. The assessment should happen in your own home. It’s quite detailed and often takes several visits to complete but it will help decide which choice would be best.

Did you know? If you’re told that nursing care is most appropriate for your loved one, they should be entitled to a contribution from the NHS towards their nursing care. This is called Registered Nursing Care Contribution.

Visiting care homes Once you’ve established the type of care home you’re looking for, get a list of potential homes in your area from the Care Quality Commission TIP: Read the home’s most recent inspection report too — it should be available online. TIP: Treat each visit as if you’re looking for a new home and choosing a good school for your children — at the same time. After all, you aren’t only looking for the perfect building and location, but for warm, caring staff to look after someone you love and who may, in many respects, be as vulnerable as a child.


TIP: If you feel nervous, make a list of questions you might want to ask (we’ve listed a few below but you can probably think of plenty others) and take a good friend with you for moral support. It’s probably best not to take the person with dementia to an initial visit, just in case the home itself is disappointing and puts them off the idea of moving completely.

Four questions to ask yourself: Is it homely? A care home that looks like a posh hotel might impress you — but you aren’t the one who will be living there! So ask yourself what the person with dementia would think of it. If the furnishings are shiny, new and modern, will they really feel at home? Or would they prefer a place that reminds them more of their own home now?

How does it smell? There’s no reason for a care home to have an unpleasant smell. Even if residents are incontinent, good quality care should be able to address any odour problems. If you can smell a home cooked meal, or cake baking on the other hand, that’s a good sign…

What are the residents doing? Is there plenty going on? Organised activities can be a great source of stimulation and a way for people with dementia to socialise. But watch out for other activities as well. For example, if you see a resident dusting or folding clothes that’s a sign they’ve been given a meaningful activity which gives them a sense of purpose. TIP: Don’t be put off if a few residents seem to be dozing in a chair — an afternoon nap may be part of their care plan.

How are residents dressed? Do they seem dishevelled, or nicely dressed? Are they clean shaven, does their hair look tidy or unkempt? These are all indications that the people who live in the care home are treated with dignity and respect. 72

Five questions to ask the manager or staff How do they get to know new residents? The more detailed their answer, the more likely it is that they are genuinely interested in giving person-centred care. You could test this further by asking, for example, if your loved one can be escorted to church every Sunday to practise their faith or if the fact that they enjoy a sherry every evening before dinner will be written into their care plan.

What would they do if a resident keeps asking to go home? If their answer is thoughtful and includes references to looking ‘beyond’ what they’re saying and helping them to feel calm, there’s a good chance they really understand person-centred care.

Can residents go into the garden whenever they want? Some care homes have beautiful gardens but residents are only allowed outside if there are enough staff to escort them.

Can they bring their own furniture and a pet if they have one? Some care homes do allow pets, but not all and most will try their best to accommodate some personal furniture to make your loved one feel really at home.

Can we decorate their bedroom? Some homes will allow you to this and it could really help someone with dementia to settle, especially if you can find a wallpaper or paint colour they’re really familiar with (perhaps one they have in their own home).

Like what you see? • Take the person with dementia to see the home and ask any other friends or relatives, whose opinion you’d value, to visit, too. • Drop in again — this time unannounced and at a different time of day if possible. Staff should still welcome you if they have nothing to hide. • Take advice before signing any contract with the home. You don’t have to pay, you could just take it to your local Citizen’s Advice Bureau and ask them to look over it. 73

Visiting a care home — what can I expect? Do you feel daunted or worried about visiting someone with dementia in a care home? Find out what might happen and how to make your visit enjoyable for both of you.

Could this be you? You really want to visit your relative, friend or neighbour since they moved into residential care but: • You’re worried you’ll get upset and feel helpless. • What will you talk about? The conversation could dry up very quickly. • If they don’t recognise you anymore it could be very depressing. These kind of thoughts are common and understandable, particularly if you don’t have much experience of dementia. But don’t let them prevent you from going to see a friend and making a difference to their day.

Here’s what to do: 1. Do your homework Find out what sort of care home the person you know is living in. For example is it a residential care home or a nursing home? There’s quite a difference between visiting someone in a nursing home (where most residents will be very frail) or a care home where you might find a much wider variety of people, many of whom could still appear fit and healthy. It’s also a good idea to phone ahead of your visit. Ask what kind of times are generally best to avoid. For example, meal times are usually very busy, and if the person you know experiences sundowning you might want to avoid early evening too. TIP: If possible, phone shortly before you visit as well, to check what sort of a day your friend is having. Living with dementia is all about learning to be ‘in the moment’ so if they’re having a particularly bad day (perhaps they didn’t sleep well the night before) it might be worth rescheduling your visit, especially if this is the first one.

2. Find a quiet place Care homes can be busy, bustling places with lots of activities going on — which is good news for the residents but not so good if you want to spend one-to-one time with the person you know. So try to find a quiet place for your visit. It could mean going to their room, or finding a visitors room (most homes should have these) or sitting in the garden. 74

3. Keep it short and sweet You don’t have to sit for hours trying to make conversation. It’s quality not quantity of time that matters. There are plenty of ways to spark a chat with someone who has dementia and a 30 minute visit spent laughing and reminiscing could really brighten their day. And if you leave them smiling, it will probably brighten your day too.

4. Take some props Conversation can become difficult quite quickly, especially if the person you’re visiting keeps asking difficult questions, finds it hard to communicate verbally or forgets who you are. So it’s worth taking something from the list below: • Photograph albums so you can relive some happy memories. • Reminiscence cards and books and magazines you can enjoy together. • A scrap book to start doing some life story work. • Once you’re feeling more confident, you could try talking. • Simple board games, cards or jigsaw puzzles. • Art and craft activities — there are hundreds to choose from, including colouring, painting, sewing and knitting. TIP: Children and babies can receive a very warm welcome from someone with dementia, and prove a great distraction from daily life, so don’t be afraid to take them with you too.


5. Be realistic Your aim is to create ‘moments of joy’ for the person with dementia — no more than that. Don’t underestimate the pleasure they might get from simply sitting with you and holding your hand, looking at some flowers in the garden, listening to some favourite music together or drinking tea and eating cream cakes with you.

6. Don’t take it to heart Despite all the effort you’ve made, the person you’re visiting may not be particularly responsive or grateful, they may even become upset or angry during your visit. Just remember, this is the illness talking, not the person you’ve always known and cared about, so try not to take it personally. Even if your visit is a complete disaster that doesn’t mean the next one will be the same. In fact, next time it could go really well. One of the only certainties on the dementia journey is that it can be very unpredictable! So whatever you do, don’t give up.


And Finally... Don’t be surprised if you find yourself facing either or both of these issues at some point on the dementia journey. It’s best to be prepared.

Dealing with stigma It’s a sad fact that a dementia diagnosis seems to carry an added burden. Alongside all the practical decisions and possible medical treatment, lies a stigma which can make life even more difficult.

Fear + Ignorance = Stigma (+ Inequality) Why does it happen? Fear and ignorance are largely to blame for the stigma surrounding dementia. The two make a powerful and insidious combination in which myths and misunderstandings get tangled up and produce a distorted picture of the illness. This, can lead to people with dementia not receiving the respect or care they deserve, when they need it most.

The fear factor Just as cancer was our biggest fear in the 60’s and 70’s, the ‘C’ word has now been replaced in many people’s mind with the ‘D’ word — and it’s not difficult to work out why. For while cancer is still a devastating illness, there has been great progress in awareness and treatments meaning, thankfully, that many forms are now survivable or even curable. Dementia however has no cure — yet — which can seem a frightening prospect. 77

Fact A recent survey revealed that people over the age of 55 fear dementia more than any other condition including cancer.

Ignorance is bliss Once fear sets in, many people come to the same conclusion. ‘If there’s no cure for dementia, what’s the point of knowing you have it.’ This kind of reasoning can lead someone who’s worried about their memory to put off seeking a diagnosis. It can also reinforce other misconceptions about the illness. After all, it’s far easier to tell yourself that your increasing forgetfulness is ‘just my age’ than to consider an ‘incurable’ alternative.

Two facts worth knowing •

round 850,000 people in Britain are thought to have dementia but only around half of A them have received a proper diagnosis. Experts think part of the problem is that many people are too afraid to get a diagnosis, so put off seeing a doctor.

1 in 4 people with dementia admit to trying to hide it.

How does stigma lead to inequality? The stigma of dementia doesn’t only affect people who may, or may not, have the condition. It also affects their friends, family and the wider community. This, in turn, can lead them to: •

eny it’s happening — because it’s too upsetting to think a loved one may have an D ‘incurable’ condition.

void people with dementia — because they’re worried about ‘saying the wrong thing’ or A feeling upset.

iscriminate — often without realising it. They may ‘talk down’ or not allow them to be D involved in decision making.

Did you know? Doctors say patients with dementia tell how their friends ‘disappeared’ after they were diagnosed and in some cases how their own children have stopped visiting. 78

The good news Things are changing rapidly. For example, an amazing two million volunteers in the UK have now signed up to become Dementia Friends to help raise awareness, combat loneliness and end the social stigma of the condition. Plus, all NHS staff — from hospital porters to surgeons — are to be given training in understanding dementia, as part of the government’s Challenge on Dementia programme.

Dealing with relationship changes If you’re caring for a loved one with dementia it’s bound to have some impact on your relationship, and on those around you.

Could this be you? You know you’re the right person to be caring for your partner or parent but,

• You worry it might permanently damage your relationship. • You feel uncomfortable doing tasks they used to do. • You find yourself grieving for the relationship you used to have. It’s hard enough being a carer without having to cope with the emotional roller-coaster that dementia brings with it. The vast majority of carers experience a raft of complex feelings and emotions about their changing relationship with the person who has dementia.

Three questions you might ask yourself 1. What’s my role? Your loved one may have been quite happy to take care of the bills and do most of the driving, shopping or cooking. Now you have to do more and more of those things yourself — it’s not a role that fits naturally, in fact it’s often a struggle. TIP: Ask for help. Taking over finances or home maintenance can be daunting so enlist the help of other family members or friends. The more adept you become at handling the practical changes, the more confident you will feel about dealing with the emotional ones.


2. Where are my friends? Despite growing awareness, dementia still carries a stigma which can result in friends or family you used to rely on or enjoy spending time with, avoiding you because they don’t know how to handle it. This, in turn, could lead you and the person you’re caring for to feel lonely and isolated or struggle with depression. TIP: Make contact with the people who’ve drifted away. Encourage them to visit or ask them to help in a different way. For example, maybe they could drive you to a hospital appointment or help you work out what’s wrong with the boiler?

3. What’s happened to my family? You might always have been a close, loving family and assumed you’d all rally around and support each other after the dementia diagnosis. Instead you’ve been squabbling and rowing about what to do, and can’t find any common ground on the financial or legal issues such as Power of Attorney. TIP: Keep talking. Once you’ve all had time to get used to the diagnosis (it might take some people longer than others so try to be patient), call a family meeting and try to find some common ground. If you still disagree take professional advice too or get help from online communities But try not to fall out. Remember, your loved one needs as much support, from as many different sources, as possible — and so do you.

How to cope with… 1. Anger Why? Being diagnosed with dementia can make many people feel angry at the sheer injustice of it. Unfortunately it’s often those closest to them (both physically and emotionally) who bear the brunt. A partner or parent who was once calm and quiet may now be prone to angry outbursts and aggression which seem to be mainly directed at you. 80

What might help: Take time out It’s important for both of you to have some space away from each other. Carers all need regular ‘me time’ and people with dementia need social stimulation. Maybe they could go to a day centre, visit a friend, or take up a new hobby that gets them out of the house.

2. Loss of what you had Why? You used to be honest and vulnerable with each other, share common interests and talk about things that mattered. Now you can’t help feeling sad about all you seem to have lost.

What might help: Find common ground Try to focus on activities and tasks you both still enjoy and can still share. For example, you may not be able to do the crossword together anymore, but you could go for walks, cook together, listen to music together or watch a favourite film. Simply enjoying each other’s company could make you feel closer and more positive.

3. Changes in your sex life Why? Dementia can often mean big changes to intimate relationships. Differing sex drives and changing roles can make sexual intimacy an area of great uncertainty and worry for both of you.

What might help: Stay positive Dementia doesn’t have to mean the end of a happy sex life. Many couples find new ways to enjoy physical intimacy and closeness by keeping an open mind about what ‘sex’ means to them, and then working out ways to achieve it. You could also talk to other carers in our community to find out how they’ve managed this very personal issue.


Good to know Dementia can also bring some welcome changes. For example, the person who used to be very quiet and reserved could become more outgoing and willing to have fun with the grandchildren. The person who used to spend hours cleaning the house might now prefer to dance or sing, and the person who found it difficult to say ‘I love you’ may have no such trouble now. So be ready to embrace these changes and enjoy them as much as you can!


What is We are the world’s best marketplace of products and services for dementia and memory loss. Whatever the stages and whatever the challenge you are facing, we are here to help. We’ll do this by: 1. Highlighting products that you didn’t even know existed which can make life easier every day. 2. Becoming informed about dementia through helpful articles and expert advice. 3. Finding reassurance in our friendly Facebook community or keeping up to date with all the latest dementia and memory loss news.


Unforgettable Foundation is a social business, which means we are committed to using business as a force for good. There are many ways that turn this into action, but part of it is donating at least 10 per cent of our profits (or a minimum of ÂŁ10,000 per year) to the Unforgettable Foundation. It funds education and research into dementia and gives grants to related charities and educational institutions in the UK.


If someone you care about has been diagnosed with dementia you probably have lots of questions about what might happen Whilst dementia is a complex condition and every journey is different, this down-to-earth little book will guide you through the issues you’re likely to face, and answer your most pressing concerns, including; How long can the the person I care for live independently? Will they eventually forget who I am? What can I do to make life easier for them?

So whether you're at the beginning of the dementia journey or quite a way through it, this Unforgettable Guide will help to address some of your biggest worries with compassion and care. 020 3322 9070,, Runway East, 58-64 City Rd, London EC1Y 2AL


A Guide to the Dementia Journey - What to Expect and When  

Step by step support for those who have been diagnosed with dementia - packed with information and advice for family carers.

A Guide to the Dementia Journey - What to Expect and When  

Step by step support for those who have been diagnosed with dementia - packed with information and advice for family carers.