A guide to living with dementia

Dementia Facts:

• More than 850,000 people in the UK are living with dementia, with numbers set to rise to over 1 million by 2025
• Dementia is not a normal part of ageing, but your chances to develop dementia increase as you get older
• 225,000 people will develop dementia this year. That’s one every three minutes.
• 1 in 14 people over the age of 65 have dementia, as well as 1 in 6 people
• Dementia is more common among women than men
• More than 40,000 people under 65 years old have dementia in the UK

Types of dementia

The symptoms of dementia are caused by a range of more than 100 diseases that cause a loss of nerve cells in the brain. It is also possible to develop more than one disease at the same time, in which case you’ll refer to it as ‘mixed dementia’.

Alzheimer’s, vascular dementia and mixed dementia are the most common types of dementia:

Around 95% of people with dementia will have one of these five main types:

• Alzheimer’s disease
• Vascular dementia
• Dementia with Lewy bodies
• Fronto-temporal dementia
• Mixed dementia

Read on to find out more about the most common types of dementia.

Alzheimer’s disease

What is it?

Alzheimer’s disease is the most common cause of dementia.

It occurs when abnormal ‘plaques’ and ‘tangles’ build up inside the brain and cause nerve cells to die. The brain is made up of billions of nerve cells connected to each other. When the ‘plaques’ break these connections, the nerve cells start to die.

People with Alzheimer’s disease also have less of the ‘chemical messengers’ in the brain that make it possible for signals to travel between cells. This means that, in people living with Alzheimer’s disease, some of the messages travelling within the brain can get lost.

What are the symptoms of Alzheimer’s?

The symptoms vary from person to person - it is in fact very rare to find two people with Alzheimer’s who are experiencing the same symptoms at the same stage of the disease.

However, since Alzheimer’s is a progressive disease, in all cases symptoms will get worse with time as more parts of the brain get damaged.

Early Symptoms

The first symptoms of Alzheimer’s are characterised by memory lapses, especially regarding recent events, while memories for events that happened a long time ago are usually intact. The reason for these symptoms lies in the hippocampus, a region of our brain responsible for making new memories.

The hippocampus is a region of the brain where recent memories are formed. It helps us to find our way and to recognise places and positions.

With Alzheimer’s, two proteins (tau and amyloid) start to build in the hippocampus causing brain cells to die, before spreading to the rest of the brain. This is why the early symptoms of the disease usually include loss of recent memories and disorientation.

Alzheimer’s can have a big impact on people’s daily routines and activities. These are some examples of early-stage symptoms of Alzheimer’s:

• Forgetting how to do simple tasks
• Feeling lost and not recognising where you are
• Forgetting names, recent conversations or appointments
• Losing track of the time of day or date

Later stage symptoms of Alzheimer’s

As the disease progresses, people with Alzheimer’s will be likely to develop:

• Difficulty solving problems and making decisions
• Struggles in finding the right words and following a conversation
• Problems judging distance and seeing objects in three dimensions
• ‘Delusions’, meaning they may start to believe things that are not true
• ‘Hallucinations’: they may see things that are not there
• Sudden changes in mood and personality, including agitation and aggressive behaviours

They will also become more frail, and struggle to eat and walk by themselves, in which case they will increasingly need care and support.

Vascular dementia

What is it?

Vascular dementia is the second most common cause of dementia after Alzheimer’s. It occurs when blood vessels in the brain get damaged. A healthy brain needs a constant supply of oxygen and other nutrients travelling through blood vessels. With vascular dementia, blood vessels start to leak or get blocked, preventing blood from reaching the brain cells.

The most common types of vascular dementia are:

• Stroke-related vascular dementia:

  A stroke happens when blood supply to part of the brain is cut off. This is most often caused by a clot which blocks the supply of oxygen to the brain, causing brain cells to die. About 20% of people who have a stroke develop vascular dementia within the following six months as a consequence. Vascular dementia can also start after a number of mini-strokes (also called transient ischaemic attacks, or TIAs). Sometimes these mini-strokes are too small for a person to even notice.

• Subcortical vascular dementia:

  This is caused by changes to very small blood vessels in the brain, which become thicker and twisted, reducing the blood flow. This type of vascular dementia sees the damage of the white matter, the nerve fibres that carry signals around the brain.

What are the symptoms of vascular dementia?

The symptoms of vascular dementia can be similar to those of Alzheimer’s, including memory loss, problems with language and communication, and disorientation.

However, some symptoms are specific to vascular dementia, including:

• Struggles in concentrating
• Problems completing tasks that require multiple steps
• Slower thinking, with more time spent processing information
• Swift mood changes, from apathy to anxiety
• Loss of bladder control and/or weakness of one part of the body (in people with subcortical vascular dementia)
• Paralysis or visual and speech problems (in people with stroke-related vascular dementia)

The symptoms of vascular dementia will get worse over time, often including behaviours that can be considered as unusual or out of character, with the person affected becoming less and less aware of what happens around them.

Dementia with Lewy bodies

What is it?

Dementia with Lewy bodies (DLB) is the third most common type of dementia. The name comes from the German doctor who first identified the Lewy bodies, small deposits of proteins that form inside nerve cells in the brain. As they build up, these clumps disrupt the way nerve cells communicate. Lewy bodies are also the main cause of movement problems in Parkinson’s disease.

The cerebrum plays a role in memory, attention, movement and in processing visual information. In DLB, Lewy bodies build up in the gray matter in the cerebrum, damaging the nerve cells in this area of the brain.

What are the symptoms of dementia with Lewy bodies?

DLB shares some symptoms with Parkinson’s disease and with other types of dementia (especially with Alzheimer’s), including memory loss and difficulty in thinking.

However, there are also a set of symptoms which are specific to DLB:

• Changes in attention: attention and alertness levels vary greatly during the day or day-to-day. People with DLB can often stare into space for a long time, or communicate in a disorganised way.
• Visual hallucinations: in the early stages of DLB, is common to see things that are not there. This may lead to ‘delusions’ (thinking things that are not true).
• Disturbed sleep: it’s common to fall asleep during the day, but struggling to sleep at night. Violent movement can occur as a result of vivid dreams while sleeping.
• Movement problems: stiffness, slower movement and shaking can occur, similarly to what happens with Parkinson’s disease. This can also lead to general unsteadiness, proneness to falls and faint.

Like the other types of dementia, dementia with Lewy bodies is progressive, and therefore symptoms will become more extensive with time.

Frontotemporal dementia

What is it?

Frontotemporal dementia is relatively rare, and it is usually diagnosed at a younger age (between 45 and 65 years old) than other forms of dementia. People whose dementia is diagnosed before 65 years old are referred to as having ‘young onset dementia’.

Frontotemporal dementia affects the frontal lobe of the brain.

The frontal lobe plays a role in our behaviour and emotions and help us distinguish between good and bad actions. The left frontal lobe also controls speech, while the right one helps us recognise familiar faces and objects.

Frontotemporal dementia is caused by the death of several brain cells in the frontal lobe, which affect speech, personality, behaviour and emotions.

What are the symptoms of frontotemporal dementia?

The symptoms of frontotemporal dementia vary according to which part of the frontal lobe is affected. These are the main three types of frontotemporal dementia:

• Behavioural variant FTD: the most common type of FTD, it affects the part of the frontal lobe that regulates behaviour
• Progressive non-fluent aphasia: affecting the part of the temporal lobe that controls speech
• Semantic dementia: damaging the region of the frontal lobe that is responsible for the understanding of language

Symptoms of behavioural variant FTD:

• Lack of inhibitions: this might include behaving in socially inappropriate ways such as making inappropriate jokes or showing a lack of tact.
• Lack of interest: such as showing apathy or losing interest in looking after themselves.
• Lack of empathy: lose interest in other people’s feelings. This is only a result of the disease, not to be attributed to a person’s personality.
• Obsessions: people can develop new strong interests, which often are acted out as repetitive, obsessive behaviours.
• Changes in eating habits: it’s common to crave sweet, fatty foods, and to lose a sense of when to stop eating and drinking.
• Struggles with planning: unlike Alzheimer’s, FTD, in its early stages, does not cause problems with recent memory. Thinking issues are more around making decisions and organising.

Symptoms of non-fluent aphasia and semantic dementia:

• Non-fluent aphasia:
  • Hesitant speech, mis-pronunciation and errors in grammar
  • Difficulty to understand complex sentences
• Semantic dementia
  • Speech is fluent, but people lose their vocabulary, often asking about the meaning of words, or describing the words they can’t remember
  • Difficulty recognising familiar objects and people

The later stages of frontotemporal dementia will see less differences between the three variants, with people with the behavioural variant developing symptoms from the language variants and vice versa. Most people at the very last stages will lose the ability to communicate all together and may no longer recognise friends and family.

Between 10% and 20% of people with FTD will also develop a motor disorder, whose symptoms include slow movement, loss of coordination and twitching.

Mixed dementia

What is it?

Someone has ‘mixed dementia’ when they develop more than one type of dementia at the same time. The most common types of mixed dementia are:

• Alzheimer’s and vascular dementia
• Alzheimer’s and dementia with Lewy bodies

At least one in 10 people with dementia has mixed dementia, which is more common in people over 75 years old.

The symptoms vary according to which one of the two types of dementia is ‘predominant’.

Stages of dementia

As we mentioned, all types of dementia are progressive and see symptoms worsen with time. The way dementia progresses is different for every person involved and depends on many factors: from the health state of the patient, to their access to support and treatments, and even to their emotional resilience.

It can be useful to identify some main stages in order to understand how dementia evolves and to better plan for the future. However, it is generally better to focus on how to live well with dementia in the present time, than worrying about what may come next - especially considering that everyone will experience dementia in their own way.

Early stages of dementia

In most cases, by the time patients become aware of the first symptoms, the disease has been damaging the brain for years.

“In the early stages of dementia, the symptoms already impact daily activities, but people are still relatively independent, adopting small adjustments to their routine.”

Later stages of dementia

Someone in the later stages of dementia will experience aggravated symptoms, which depend on the type of dementia they have. They will also become frail and unable to look after themselves and do simple daily activities. They’ll therefore have to rely on someone else to take care of them.

You can find more information on the later stages of dementia on the Alzheimer’s Society website.

Rate of progression

It’s difficult to identify a reliable rate of progression for dementia, as this will depend on the person’s general health conditions (such as if they have a heart disease or diabetes), their age and on the type of dementia they have. People with early-onset dementia usually see a faster progression than people with Alzheimer’s disease, for example.

Research seems to show that life expectancy after a dementia diagnosis is around ten years, but that varies greatly from person to person, and it should just be used as a guidance.

Spotting the signs of dementia

Although the idea of getting a dementia diagnosis may be daunting, there are several good reasons for seeing your GP when you first start to notice symptoms.

Benefits of an early diagnosis

If you know what you are dealing with, you will be able to access the right support that will help you to take control, plan your future and live as well as possible.:

• Your symptoms might actually be indicative of something else, or just be a normal part of ageing.
• You will get the right information about your condition and will be able to learn about what you are facing.
• You will get a better understanding of the symptoms and an explanation of what is going on. Research from the Social Care Institute for Excellence shows that an early diagnosis can help people to live independently in their own home for longer, with reduced care home and hospital admissions.

But how can you distinguish between the normal signs of ageing and the early symptoms of dementia? Check out these examples:

To find out more about what to do if you think you or a loved one are showing the signs of dementia, go to the chapter Diagnosing dementia.

Dementia risk factors

We are all at risk of developing dementia. However, some factors can increase one’s risk of developing the condition. Some risks factors, such as age and genetics, are beyond our control, but there are many others that depend on lifestyle choices and habits which we can change in order to prevent developing dementia.

Note that having any of the risk factors does not mean you will necessarily develop dementia. At the same time, avoiding risk factors only makes dementia less likely, but it doesn’t guarantee you will stay healthy.

Risk factors beyond our control

• Age: after 65 years old, the risk of dementia doubles every five years.
• Genetics: scientists have identified more than 20 genes that affect someone’s risk of developing dementia.
• Family history: those who have a family member with dementia are more likely to develop the disease.
• Ethnicity: people from some ethnic groups are more likely to develop dementia than others. For example, South Asian people are more likely to develop vascular dementia than white Europeans.

Lifestyle risk factors

• Physical inactivity: being inactive has a harmful effect on heart health and the correct functioning of the brain.
• Alcohol: alcohol consumption above the NHS recommended intake increases the chance of dementia.
• Smoking: smoking affects the vascular system, including the blood vessels in the brain.
• Diet: a diet that contains too much saturated fat, salt and sugar, and which leads to weight gain, affects the probability of developing dementia.
• Medical: conditions: cardiovascular factors, such as high cholesterol, high blood pressure, obesity and type-2 diabetes, increase one’s chances of developing dementia.

These factors are all avoidable through lifestyle choices and regular health checks.

How to reduce your risk of dementia

While some factors causing dementia are out of our control, we can influence many others by simple lifestyle changes which are very beneficial to our overall health, not only to prevent dementia.

• Eat healthy: a diet rich in fruit, vegetables, fish and cereals is recommended. Also reduce your alcohol intake, or give up alcoholic drinks entirely.
• Keep your mind active: exercise your mind by learning a new language or skill, by reading challenging books or doing puzzles.
• Quit smoking: the benefits of stopping smoking are evident, even in later life.
• Exercise regularly: 30 minutes, five times a week is a good start.

These are the three steps you should take in order to get a diagnosis:

1. Visit your GP

If you notice some of the symptoms mentioned above are occurring or becoming frequent, it may be time to talk to your GP to check if they are the early signs of dementia. Your GP should be preferably somebody who knows your medical history well, so that they can have a clearer picture of other conditions that may cause the symptoms you are experiencing.

If you are a relative of the person who needs a diagnosis, it would be good for you to accompany your loved one to the appointment. This is not only to offer support, but also to provide the doctor with your input and to get more information, should you take on any caring responsibilities.

During the appointment, the GP will ask you about what you have been experiencing, and may do some blood tests and some memory and cognitive tests (such as asking you to name some animals or remember a street name). Depending on your symptoms, they may refer you to a specialist or to a memory clinic for a further assessment.

2. Attend a specialist assessment

Dementia is usually diagnosed by a specialist doctor such as a neurologist, a psychiatrist or a geriatrician who your GP can refer you to. They will carry out more indepth tests than your GP will be able to do, including:

• Analysis of background information: be prepared to share as many details as possible about your medical history and current symptoms, as this will help the specialists with their diagnosis. Keeping a diary of what has been happening may be helpful.
• Memory and mental assessments: these will be used to check mental abilities and as a benchmark to measure changes over time.
• Blood tests: these are to exclude other possible causes of the symptoms.
• Brain scans: these may be needed to see if a stroke or brain tumor may be behind the symptoms.

3. Get a diagnosis

The specialist will send the results of their assessment to your GP, who will then communicate them to you during an appointment. Your GP may also ask for a family member to attend, so that they understand your circumstances and what the next steps might be, in case you are diagnosed with dementia. If you do receive a dementia diagnosis, it is important to ask your GP or specialist questions, and these might be a good start:

• What type of dementia do I have?
• What symptoms should I expect in the future?
• What can I do to reduce the symptoms?
• How quickly is it going to progress?
• What help is available in my local area?

What next? It is a time to think broadly about the condition and who your diagnosis may have an impact on (as well as yourself), and who may be able to support you in the future.

One of the things you should do after a dementia diagnosis is tell the people around you and this process will help decide who to speak to first.

Do not rush things - take the time you need to come to terms with your diagnosis. However, you should make sure the people close to you know about your condition - they will have a vital role in building a support network around you and in helping you maintain a good quality of life, as well as thinking through these steps.

In the following chapters, we’ll look at what to do following a dementia diagnosis, including:

• Finding the right therapies
• Making sure you look after your physical and mental health
• Discovering practical solutions to help you cope with your symptoms
• Arranging care
• Claiming benefits and paying for your care
• Putting in place legal arrangements
• Finding more information and support

Common medications for dementia

Your GP or specialist may discuss the prescription of drugs that can help manage the symptoms of dementia, and in some circumstances may be able to delay the onset or development of these symptoms for some time. There are different types of medications that might be prescribed depending on the type of dementia that is diagnosed, the symptoms being experienced as well as the interaction with any other medications currently prescribed and the potential side effects. It is also important to consider other approaches that might also help, which we discuss in the next section.

Non-drug therapies and coping mechanisms

Dementia can affect many aspects of daily life, and it is therefore essential to identify different ways to cope with the challenges it brings. There are different services, groups and organisations that operate locally and so you should ask your GP what support is available in your area or speak to an organisation like the Alzheimers’ Society directly.

Depending on your needs, these non-drug therapies and activities may help you cope with the symptoms of dementia and with the physical, mental and emotional issues associated with the condition:

• Cognitive behavioural therapies can help if you develop depression or anxiety.
• Counselling is available if you need to discuss how you feel following a diagnosis.
• Cognitive stimulation therapy consists in regular activity sessions to keep your mind active.
• Life story and reminiscence therapies encourage people with dementia to share stories from their past, improving their mood and mental wellbeing.

Take care of your physical health

1. Exercising regularly will help you live better with your diagnosis for longer. What is appropriate will depend on your personal circumstances and general health. A 20-30 minutes aerobic exercise which increases your heart rate is great to improve physical and mental health. If you were practicing a sport before your diagnosis, keep doing it - it will help to preserve your identity and keep you motivated. Joining a group exercise class may also help you socialise, and as such is perfect to keep your body and mind active at the same time.

2. Eating a Mediterranean diet (rich in whole grains, fruits and vegetables, fish, and healthy fats coming from nuts and olive oil) is thought to improve brain health.

Stay socially active

It is important not to let dementia make you feel isolated and lonely. These are some of the strategies you can adopt to make sure you keep cultivating your relationships and always have someone to go to for support, advice or simply for a friendly chat

1. Don’t be afraid to ask and accept help from others. Following a dementia diagnosis, you may feel embarrassed to share your struggles, and worried to lose your independence if you did. However, it’s exactly the people close to you who, with their support, will enable you to maintain your independence as the disease progresses.
2. Connect with others at the same dementia stage as you. The way you experience dementia is different from anyone else’s, but it can be useful and reassuring to meet people in a similar situation, and exchange tips and worries with someone who really knows what you’re going through.
3. Maintain close relationships. You may fear your acquaintances will shy away at the news of your diagnosis, but your truest and closest friends will stay and support you, if you let them.

Take care of your mental health

Remember that, apart from specialist counselling and cognitive therapies, also staying physically and socially active will have very positive effects on your mental wellbeing. By making sure you take care of your body and have someone close to you to go to for support, you will have already tackled some of the most important mental health challenges for people with dementia.

Here are some other difficulties you may experience, with some tips about how to cope with them:

Practical solutions and tips

There are many practical solutions you can adopt to make your daily life easier and to maintain your independence while living with dementia.

One of the first challenges you will encounter will be dealing with changes in your memory and mental capability. To cope with these sorts of changes, there are practical everyday steps that can make a material difference. You may consider keeping a journal outlining what you’ve done, what you are planning to do, and when.

Also placing post-it notes with your daily tasks (“feed the dog”, “take medication”, for example) somewhere visible can help you not to forget about the important things.

An effective way to create new coping strategies is also by keeping a list of the things that have become difficult, decide whether they are still necessary, and write down a solution for each issue. Check out the Alzheimer’s Association chart for some great practical examples.

It’s a lot about trial and error, and you will have to see what works best for you, as everyone experiences dementia differently. The Alzheimer’s Society also have some helpful resources you can explore.

Daily living aids

New products are created every year to make the lives of people with dementia easier.

These dementia living aids include:

• Clocks with inbuilt alarms to act as a reminder of regular tasks
• Adaptive clothing that makes dressing easier
• Telephones with photos of your loved ones: you simply need to click on their image to call them
• Automatic pill dispensers that remind you when you have to take your medication

You can have a look at the Alzheimer’s Society’s online shop for more information.

First it may be occasional help with tasks such as housekeeping, paying bills or remembering appointments. Then, at the latest stages of dementia, you will need support in a range of aspects of daily living, including getting dressed and bathed.

Whatever type of care you choose for yourself or your loved one, make sure it is ‘person-centred’. This takes into account not only your needs, but your wants, what gives you quality of life, and dignity. This way, care is tailored to the person’s interests, abilities, personality and history. Each individual’s dementia is different, and therefore dementia care should be designed around you as an individual.

How to get care

The Local Authority Social Services team is often the first port of call to start your care journey and your GP may refer you to them directly.

The Local Authority will provide a needs assessment and from this you can start to develop a care plan. Note the local authority will assess your needs to determine your eligibility for care and then assess your financial circumstances. You can find more information on this in our funding care guide.

What is a care plan?

A care plan includes:

• The type of support you need
• The recommended solutions to meet your needs (i.e. at-home support from a professional carer, adaptations to make your home safer, or a place in a care home)
• Your personal budget (the amount the council will spend on your care each week)
• What needs (if any) can be met by the local authority, and how

How to get a care plan

You can get a care plan from your local authority by following three steps:

• 1. Request an assessment from the social services team at your local council. This could be either: A needs assessment, if you need care for yourself. This assessment is free and is necessary to evaluate your needs and whether you qualify for local authority care. A carer’s assessment, if you need help caring for someone else. This is also free and can be requested at the same time as the needs assessment, in case you need both.

• 2. You should receive your care plan a few weeks after your needs or carer’s assessment.
• 3. A care plan provides a picture at a point in time. However, over time your needs may change as your symptoms progress, and so it is important that this is reviewed regularly.

Find more information about care plans.

Care options for people with dementia

The care plan provided will include some recommendations about the type of care you should consider. Being ‘person-centred’ and tailored to your individual situation and personal circumstances, care options will vary greatly between people.

They may include:

• Care at home, either from a family member or from professional carers, and different types of home-care (day, night and live-in care)
• Home changes: in considering how you can remain at home safely there may be some suggestions of home adaptations or home-aids to support you
• Day centres and other weekly care activities (often used as respite for home carers)
• Other care environments: from sheltered housing and assisted living to residential and nursing care homes.

You should discuss all these options with your family and we really recommend advance needs planning wherever possible. Taking the time to think these options through before a point of crisis or when a need becomes more acute will give you the opportunity to evaluate your options further and thereby reduce the stress and anxiety associated with the change.

Having a discussion with your family sooner, taking account of your circumstances and care preferences now and for the future, will also give clarity to them and any health practitioners involved in your care. This is especially important in case you reach a point in future when you are not able to make decisions for yourself, and your family may need to make a decision on your behalf, for example whether to move into a care home.

You can find more information on this in the section about the Mental Capacity Act.

Here’s an overview of the different care types, with their pros and cons:

Living with family

Pros

- You get to stay in a familiar environment cared for by people you know well. This might be your own home, if they move in with you, or their home.

- It’s an affordable care option. Note if you sell your home it may be included in your assets when determining whether you qualify for funded care.

Cons

- This option may be only viable in the early stages of dementia. As the condition progresses you will be likely to need more complex specialist care.

- Caring responsibilities can be overwhelming. Family carers have to give up many aspects of their daily routine to look after their loved ones.

Tips

- Do a trial run before any longer-term commitments are made. - Establish clear rules, including who will take on caring duties and how bills are going to paid for.

- Make sure caring responsibilities are shared within the family, or that you have respite care arranged from time to time to avoid carers’ burnout.

Professional care at home

Pros

- It offers personalised and professional support in your own home.

- It’s flexible. There are different types of homecare: visiting day care, night care or even live-in care, and the amount of care you receive can be increased or decreased depending on your needs.

- It’s cheaper than moving into a care home.

Cons

- Your home may need adjustments to make it safer and more practical for your circumstances.

- If you need medical support from qualified nurses, this would need to be coordinated separately.

Tips: There are two main solutions available to help you organise home care:

- Managed care services which oversee every aspect of the care on your family’s behalf. They take care of risk assessments and design care plans.

- Introductory services, which may be more affordable, help you find the right carer and run background checks. This way, you will be able to choose the carer and self-manage your care.

Care home

Pros

- It offers round-the-clock care from trained staff, which may include medical professionals.

- It may offer more opportunities for social engagement than care at home, with other residents to interact with.

Cons

- Research has shown that moving to an unknown environment can aggravate the symptoms of people with dementia.

- It can be very expensive.

- You may feel you lose part of your independence.

Tips

- Residential homes are run by healthcare professionals, for people who require personal care.

- Nursing homes are run by nursing staff, for people who require ongoing medical support.

Sheltered housing

Pros

- These self-contained flats featuring shared facilities and communal spaces offer you more independence than a care home.

- They are ideal for couples, who aren’t always able to share a room in care homes and whose needs are not yet at a level requiring around the clock support.

Cons

It might not be an option for those with more complex needs, given the lack of care provision. In sheltered housing, residents are unsupervised, while in assisted living facilities some care is provided, but not as much as in a traditional care home.

Tips

Every facility has its own rules (such as no-pets policies), so check well before joining one.

How to care for people with dementia

There are around seven million carers in the UK, and 11% of them are caring for someone with dementia (data from CarersTrust).

Family members can and often do start to care for their loved one after their dementia diagnosis. If you are one of them, make sure you collect as much information as possible about your relative’s type of dementia and the symptoms associated with it. This way, you’ll understand what level of care is likely to be required and how it will progress.

Advance needs planning will likely result in a greater range of options being available when you need them, and often reduces the stress and anxiety through feeling prepared and more informed, for both the person living with dementia and their carer(s).

Here are some care tips based on common symptoms and needs you can find in people with dementia:

COMMUNICATION PROBLEMS

• Speak clearly and ask ‘yes or no’ questions, if required.
• Make an effort to talk to them and include them in conversations - they’ll feel less lonely and isolated.

MEMORY LAPSES

• Help them with visual reminders, such as notes around the home.
• Make sure important objects are in obvious places, such as keys near the door, and that they are eating and drinking regularly.

MOOD SWINGS AND AGGRESSIVE BEHAVIOURS

• Try to see things from their point of view. What could be distressing them or upsetting them?
• Reassure them and move them to a quiet place.

• Keep a diary to identify whether there are any particular events or circumstances that lead to higher levels of agitation or aggression.
• Don’t take it personally. Their behaviour is a symptom of dementia.
• Most importantly, stay safe yourself.
• Find more information on how to deal with aggressive dementia behaviours.

SLEEP DISTURBANCES

• Ask your loved one why they are not sleeping well.
• Leave clocks in their bedroom and around the house, and make sure it’s easy to understand what time it is.
• Create a consistent routine, so that they always go to bed at the same time.

Financial and legal matters for dementia carers

These are some of the steps you should take if you decide to care for a family member:

1. Apply for a carer’s assessment. This is free, and includes respite care, information on local support groups, help and equipment.
2. You may want to set up a lasting power of attorney (LPA), which will ensure that if the person with dementia loses capacity, their affairs can be looked after by you as their advocate. Remember that an LPA needs to be set up while the person with dementia is still capable of making decisions for themselves, and needs to be registered with the Office of the Public Guardian before it can be used. We go into more detail about LPAs further in this guide.
3. Check if you are eligible for financial support. Carers can claim benefits if they spend at least 35 hours a week caring for their family member, are over the age of 16, aren’t studying for more than 21 hours a week and earn under a certain amount. Find out more about carer’s allowance, and download our free Funding Care Guide for more information about how to pay for your loved one’s care.

Support for carers

As a family member and carer of someone with dementia, you can find many helpful sources of information and charities who offer support. A good place to start is the Alzheimer’s Society. Others include:

• Age UK
• Alzheimer’s Research UK
• Carers UK
• Dementia UK
• The National Dementia Helpline

Following a dementia diagnosis, it is important to start making plans, both legal and financial, even if these may be the last things you want to think about at that moment. This way, you will have direct control on some very important decisions, and help your family and loved ones know your wishes.

Mental Capacity Act

The Mental Capacity Act 2005 (England and Wales)* helps people who want to plan for their future and protects their interests when they lack the mental capacity to make decisions about their treatment and care.

These are the Mental Capacity Act’s main principles:

• Everyone should be supported to make their own decisions wherever possible.
• Someone should always be assumed to have the capacity to make their own decisions, unless their capacity assessment proves otherwise.
• Any decisions made on someone’s behalf must be in their best interests.

*The Mental Capacity Act applies to people over 16 years old living in England and Wales. Scotland has its own Adults With Incapacity Act and Northern Ireland has the Mental Capacity Act.

What is a capacity assessment?

A health professional is responsible for assessing whether someone is capable of making specific decisions at a specific moment in time.

They will check the following:

• If the person understands information related to the decision If they can remember this information
• If they can use this information to make a decision
• If they can communicate the decision to others

As dementia symptoms get worse, you may lose capacity to make decisions independently. It is important to make sure that your family and carers know your wishes. Check out the next section for some legal arrangements that can help you do so.

Lasting Power of Attorney and other legal matters

If you are worried about losing mental capacity and not being able to make independent decisions about your future as a result of your dementia diagnosis, you should consider these legal tools:

Lasting Power of Attorney: this allows you to appoint a person (called ‘attorney’) to make decisions for yourself once you’ve lost mental capacity. There are two types of LPA:

• The health and welfare LPA involves decisions about the person’s health and welfare.
• The property and financial affairs LPA involves decisions around your property and finances.

To put an LPA in place, you have to complete a form that corresponds to the type of attorney you need, and send it to the Office of the Public Guardian. You’ll need to register your LPA with the Office of the Public Guardian before it can be used. Important note: You should get an LPA before you lose mental capacity. This is because, if you lose mental capacity and don’t have an LPA, your family may have to apply to the Court of Protection, which can be long and costly. The LPA should be appointed while you are still able to make independent decisions.

Advance decision to refuse treatment (or ‘living will’): this is a legally binding document recording your preferences about medical treatment, in case you lose mental capacity. You can use it to state what specific treatments you don’t want to receive in the future.

Advance statement: you can use this to express your preferences about care and treatment. It is not legally binding, but it will be taken into consideration by those who manage your care in case you lose mental capacity.

Find out more about LPAs.

Financial matters

As you plan for the future, it is important to also consider how you wish to manage your money and assets going forward. You may think of putting in place a property and financial affairs LPA (see above) to make sure someone you trust will look after your finances in case you’re not able to do it yourself anymore.

Below, we’ll look at what type of benefits you may claim as a dementia patient, and discuss some ways you can fund your care.

State benefits for people with dementia

These are the three main types of benefits you can claim:

• Attendance allowance: for people aged 65 or over who need help with personal care due to illness or disability, including dementia.
• Personal independence payments (PIP): for people aged under the age of 65 who require support with personal care or mobility.
• Council tax reduction: if you have dementia, you may be eligible for a 25% council tax discount, worth an average of £400 per year, provided you are entitled to attendance allowance or PIP.

Tip: If you are a carer looking after a person with dementia, you may be entitled to carer’s allowance, a state benefit to help you financially in your caring responsibilities.

How to pay for your care

Navigating all the different aspects of funding your care can be daunting.

We recommend you download our free Funding Care Guide for an overview of:

• Local authority and NHS funding State benefits
• Care needs assessments
• Direct payments
• Self-funding your care

Working after a dementia diagnosis

Most people will be in retirement age when they are diagnosed with dementia. However this is not always the case, especially for people with early-onset dementia.

Dementia will gradually affect your work prospects and your ability to continue with your job. Speaking to Occupational Health as soon as possible following a diagnosis is a good idea, as is having regular reviews so that your job role can be adapted to deal with any new symptoms you develop.

Driving after a dementia diagnosis

You should consult the medical professionals involved in your diagnosis as to whether you are able to drive or not after a dementia diagnosis. In addition, you should inform the DVLA (or DVLNI in Northern Ireland) and insurer of your diagnosis.

If you are concerned about a person with dementia’s ability to drive, express your concerns with them, and suggest taking a driving assessment.

You may also be eligible for a parking Blue Badge - find out more on the Government website.

There are plenty of charities and organisations out there who can help you find information, practical help and personalised advice. Apart from those we list below, you can find local support groups in your area using the Alzheimer’s Society’s tool:

Age UK: charity offering help to older people in the UK

• Advice Line: call 0800 678 1602 for advice about care, benefits and more.
• Befriending services: with Call in Time, a volunteer befriender will phone an older person at an agreed time for a chat. Face-to-face befriending is also available in certain areas Alzheimer’s Research UK: the UK’s leading dementia research charity, dedicated to causes, diagnosis, prevention, treatment and cure.
• Their website offers useful resources to help understand dementia.
• You can also get involved by helping them with fundraising or volunteering.

Alzheimer’s Society: leading dementia support and research charity in the UK

• Talking Point: the Alzheimer’s Society’s online community is a good place to connect with others with dementia and find advice.
• You can also call the National Dementia Helpline on 0300 222 11 22.

Carers UK: leading membership charity for carers in the UK

• You can ask for advice on the Carers UK Forum.
• Learn more about financial support for carers by calling 0808 808 7777.

Dementia UK: specialist dementia support through the Admiral Nurse service. They also offer dementia advice on 0800 888 6678.

Society of Later Life Advisers – SOLLA: helping people find accredited financial advisers for financial needs in later life.

Young Dementia UK: advice and support for people whose lives are affected by young-onset dementia.