Living with dementia

Advice about how to live well with dementia, including information if you look after someone with dementia.

Living well with dementia

Dementia can affect all aspects of a person's life, as well as those around them.

If you have been diagnosed with dementia, it's important to remember that:

• you're still you, even though you have problems with memory, concentration and planning
• everyone experiences dementia differently
• focusing on the things you can still do and enjoy will help you to stay positive

With the right help and support when you need it, many people can, and do, live well with dementia for several years.

Stay socially active

Keeping in touch with people and engaging in social activities, such as going to the theatre or cinema, or being part of a walking group or choir, is good for your confidence and mental wellbeing.

If you have someone who helps care for you, an active social life is good for them, too.

Many venues and organisations are now dementia-friendly. For example, cinemas put on dementia-friendly screenings of the latest films, and leisure centres run dementia-friendly swimming sessions as well as other activities.

It's a good idea to join a local dementia-friendly group, perhaps at a memory café (a "dementia-friendly" café) or community centre. You can share experiences and use tips from others who are living with dementia.

Telling people about your dementia

When you're ready, it's best to tell others about your diagnosis. It's also good to tell them what you may have trouble with, such as following a conversation or remembering what was said.

You may find some people treat you differently than they did before.

This may be because they don't understand what dementia is or want to help but don't know how.

Try to explain what your diagnosis means and the ways in which they can help and support you.

For example, if you're no longer able to drive, they could take you to a weekly activity.

You may also find that you lose touch with some people. This may be because you no longer do the activities together that you used to do, or you find it harder to stay in touch.

This can be difficult to accept. But you can meet new people through activity and support groups. Focus on the people who are there for you.

Look after your health

It's important to look after your physical and mental health when you have dementia:

• Eat a healthy, balanced diet and drink plenty of fluids.
• Exercise regularly. This could be a daily walk or gardening, or you could try tai chi or dancing.
• Ask your GP if you would benefit from flu vaccination and pneumonia vaccination.
• Get enough sleep. Try to avoid naps during the day and caffeine and alcohol at night.
• Depression is very common in dementia. Talk to your GP, as there are talking treatments that can help.
• Have regular dental, eyesight and hearing check-ups.

If you have a long-term condition, such as diabetes or coronary heart disease, try to attend regular check-ups with your GP, which should include a review of the medicines you're taking.

See your GP if you feel unwell, as things like chest or urine infections can make you feel very confused if they're not treated promptly.

Tips to help cope with dementia

Coping with memory loss and problems with thinking speed can be distressing. But there are things that can help.

Try these tips:

• have a regular routine
• put a weekly timetable on the kitchen wall or fridge, and try to schedule activities for when you usually feel better (for example, in the mornings)
• put your keys in an obvious place, such as a large bowl in the hall
• keep a list of helpful numbers (including who to contact in an emergency) by the phone
• set up direct debit for regular bills so you don't forget to pay them
• use a pill organiser box (dosette box) to help you remember which medicines to take when (a pharmacist can help you get one)
• make sure your home is dementia-friendly and safe

Staying independent with dementia

Being diagnosed with dementia will have a big impact on you and your life. You and your family may worry about how long you can look after yourself, particularly if you live alone.

Everyone experiences dementia differently and the rate at which symptoms become worse varies from person to person.

But with the right support when you need it, many people live independently for several years.

Living at home when you have dementia

In the early stages of dementia, many people are able to live at home and enjoy life in the same way as before their diagnosis.

Following a dementia diagnosis, you should have been given advice on how you can keep doing what is important to you for as long as possible as well as information about local support and services that you may find helpful.

But as the illness gets worse, it is likely that you will find it more difficult to look after yourself and your home. You may then need extra help with daily activities, such as housework, shopping and adaptations to your home.

How technology can help you at home

Advances in technology mean there is now a growing range of products and services to help those with dementia or other long-term conditions live independently and safely. This is also known as assistive technology.

Monitoring systems (telecare)

Monitoring systems, also known as telecare, can help to keep you safe. They include devices, such as:

• portable alarms or fixed position alarms – when activated these make a high-pitched sound or send an alert to a family member's pager or phone
• movement sensors – to detect, for instance, when someone has fallen out of bed
• smoke alarms and carbon monoxide detectors
• sensors or detectors that automatically send a signal to a family member, carer or monitoring centre by phone

If you've had a needs assessment, your local council may provide a monitoring system. You may have to pay towards the cost of this.

Read more about personal alarms, monitoring systems (telecare) and key safes.

Daily living aids

These include products that help with day-to-day tasks, such as:

• clocks showing the day and date as well as the time
• reminder devices, such as pill dispensers, which prompt you to take medicine at appropriate intervals, or appointment alerts
• telephones with big buttons – these can be pre-programmed with frequently used numbers
• music players and radios with easy-to-use controls

Smartphones and tablets

Many people with dementia find using a mobile phone or tablet helps. These devices often have a range of apps that can help people, such as an alarm clock, notes function and a reminder function.

There are also many apps specifically designed to help people with dementia – and their carers – including dedicated games, digital photobooks and reminiscence aids.

Voice-controlled virtual assistants can also help you stay independent. For example, they can remind you to take medicines and provide answers to questions about weather or train timetables.

Working when you have dementia

If you've received a dementia diagnosis, you may be worried about how you'll cope at work. You should speak to your employer as soon as you feel ready.

In some jobs, such as the armed forces, you must tell your employer. If you're unsure, check your employment contract.

If you want to continue to work, speak to your employer about what adjustments can be made to help you, such as:

• changes to your working hours
• scheduling meetings at different times
• changing to a different role that may be less demanding

Under the Equality Act 2010, your employer has to make reasonable adjustments in the workplace to help you do your job.

Driving

This doesn't necessarily mean you will have to stop driving immediately. Some people with dementia prefer to give up driving because they find it stressful, but others continue driving for some time as long as it's safe for them to do so.

The DVLA will ask for medical reports and possibly a special driving assessment to decide whether you can continue driving.

Planning ahead

You may have many years of staying independent with dementia ahead of you. But while you're still able to make your own decisions, it's a good idea to make plans so that your wishes for your future care can be respected.

These plans can include:

• choosing someone you trust, like a family member or friend, to act on your behalf to manage your affairs, both financial and medical – this is called Lasting Power of Attorney
• making an advance statement – this covers the treatment and care you'd like to receive in the later stages of dementia, including where you would like to be cared for
• making a will – if you haven't done so already

Read more about managing legal affairs when you have dementia.

Activities for dementia

Having dementia doesn't mean you have to stop doing the things you enjoy.

There are all sorts of activities you can do – physical, mental, social and creative – that help you to live well with dementia and improve wellbeing.

If you care for someone who has dementia, a shared activity can make both of you happier and able to enjoy quality time together.

You can continue with the activities you already enjoy, though they may take longer than they used to, or try new activities.

Stay socially active

Keeping in touch with people is good for your confidence and mental wellbeing, like meeting up with friends and family.

You could try activities like:

• dance, tai chi, yoga, swimming or joining a walking group to help keep you active and sociable – look out for local dementia-friendly swimming, gym and walking sessions
• arts-based activities – drawing and painting classes, drama groups and book clubs can all help you stay involved
• reminiscence work – share your life experiences and stories from the past with photos, objects, video and music clips, either as a book or on a tablet or other digital device

Tablets and smartphones

These digital devices can be very useful for people with dementia.

From online games, puzzles and dedicated dementia apps, to Zoom and YouTube, they provide a way to stay engaged with others and enjoy a range of activities.

Out and about

Many communities and organisations are working to become dementia-friendly.

This means that organisations and venues may have specialist events and activities for people with dementia, such as:

• dementia-friendly cinema screenings and streaming of live theatre productions
• sensory gardens – a garden or plot designed to provide different sensory experiences, including scented plants, sculptures, textured touch pads and water features
• woodland walks

If you'd like to venture further from home, there are organisations that can support both you and the person caring for you.

Activities for the later stages of dementia

It's often assumed that people in the later stages of dementia are unable to engage in activities, but this isn't true.

Activities will often need to be simplified and are more likely to focus on the senses, such as:

• sight
• hearing
• touch
• taste
• smell

Playing music, having objects to touch and interact with, and hand massage can all help people with dementia in the later stages.

How to make your home dementia friendly

The way your home is designed and laid out can have a big impact on someone with dementia.

Symptoms of memory loss, confusion and difficulty learning new things means that someone with dementia may forget where they are, where things are and how things work.

Although it's not advisable to make major changes to the home overnight, there are some simple things you can do that may help someone with dementia to continue living independently at home.

Needs assessment

If the person with dementia hasn't yet done so, it's important to get a needs assessment from your local council. If it seems you need alterations in the home, such as grab rails in the bathroom, you may be referred for a separate assessment of your home.

Better lighting

Most people with dementia, and older people in general, benefit from better lighting in their home. It can help to avoid confusion and reduce the risk of falls.

Try to reduce glare, shadows and reflections.

Lighting should be bright, even and natural (as much as possible). Increase natural light during the day by making sure:

• curtains are open
• nothing is blocking the windows, such as unnecessary nets and blinds
• hedges and trees are cut back if they block out sunlight

Lighting is particularly important on the stairs and in the toilet. Light switches should be easy to reach and use.

Automatic light sensors can be a good addition. Lights come on automatically when someone passes the sensor.

It is also important to make sure the bedroom can be made dark at night, to help with sleep.

As dementia is more common among older people, it's important to have regular eye tests so that any problems can be spotted and treated.

Reduce excess noise

Carpets, cushions and curtains absorb background noise. If you have laminate or vinyl flooring, simply walking across the room can be very noisy. If the person with dementia wears a hearing aid, it will magnify these sounds which can be uncomfortable.

Reduce background noise by turning the television or radio off if nobody is paying attention to it.

It's important to have regular hearing checks, even if the person with dementia has hearing aids fitted.

People with dementia can have their symptoms made worse by problems with sight and hearing together (known as deafblindness or dual sensory loss).

Safer flooring

Try to avoid rugs or mats on the floor, as some people with dementia may become confused and think the rug or mat is an object that they need to step over, which could lead to trips or falls.

Avoid shiny or reflective flooring, as this may be perceived as being wet, and the person with dementia may struggle to walk over it.

The best flooring to choose is matt and in a colour that contrasts with the walls. It might help to avoid colours that can be mistaken for real things, such as green (grass) or blue (water).

Contrasting colours

Dementia can affect how well someone can tell the difference between colours. Choose:

• contrasting colours on walls and floors
• furniture and furnishings in bright or bold colours that contrast with the walls and floors, including beds, tables and chairs
• contrasting colours for doors and banisters to make them stand out
• a toilet seat in a contrasting colour to the rest of the bathroom
• crockery in contrasting colours to the tablecloth or table to help define the edges of dishes

You could also paint your front door a bright colour with a large door number that's easy to read so your home is easier to find from the outside.

Avoid bold patterns and stripes as they can be confusing and disorientating.

Reflections can be troubling

Check mirrors and cover or remove them if they're likely to cause confusion in the person with dementia. They may be distressed if they don't recognise themselves.

Similarly, it can help to close the curtains in the evening so they can't see their reflection in the window glass.

Labels and signs can help someone get around

Labels and signs on cupboards and doors can be helpful, such as a toilet sign on the bathroom or toilet door.

Post-it notes placed at certain points around the house, such as a note next to the front door saying, "check for your keys", can serve as useful reminders.

You could also buy a noticeboard or whiteboard that can be used to list daily household tasks, such as taking the bins out or charging a mobile phone.

Signs should be:

• clear
• have words and an appropriate picture that contrast with the background
• placed slightly lower than normal as older people tend to look downwards

It may also help to put photos on cupboards and drawers to show what's inside them. For example, you could put a photo of cups on the kitchen cupboard.

Alternatively, see-through cupboard doors can be a great help to someone with dementia, as they can then see what's inside.

Dementia-friendly household items

It's possible to get products for the home that are specifically designed for people with dementia. For example:

• clocks with large LCD displays showing the day, date and time
• telephones and remote controls with big buttons
• reminder devices that give an audio prompt to help people remember to take medicines or lock the front door

You may find that the person you care for prefers traditional-style fixtures and fittings, such as taps, a toilet flush or bath plugs.

Ensure that any tables are stable and have round, smooth edges. They should be at a suitable height, so that food and drink can be seen and a wheelchair can fit underneath if needed.

Gardens and outside spaces

Like everyone else, people with dementia may benefit from going outside to get some fresh air and exercise. Make sure that:

• walking surfaces are flat to prevent trips or falls – if a person is unstable on their feet, you could fit handrails to help
• any outdoor space is secure to prevent someone wandering off
• flower beds are raised to help people with restricted mobility look after their garden
• there are sheltered seating areas to enable someone to stay outside for longer
• lighting is adequate – any entrance to the garden should be easy to see and use.

Bird feeders and bug boxes will attract wildlife into the garden. And a variety of flowers and herbs can help someone stay engaged.

You might find it useful to have a key safe installed so family members, carers or the emergency services can quicky enter the home if needed.

Looking after someone with dementia

Caring for someone with dementia can be challenging and stressful. But with the right support, it can be rewarding and often satisfying.

Support for you as a carer

You may not think of yourself as a carer, particularly if the person with dementia is a partner, parent or close friend.

But both you and the person with dementia will need support to cope with the symptoms and changes in behaviour.

It's a good idea to:

• make sure you're registered as a carer with your GP
• apply for a carer's assessment
• check if you're eligible for benefits for carers
• find out about training courses that could help you

Get a carer's assessment

If you care for someone, you can have an assessment to see what might help make your life easier. This is called a carer's assessment.

A carer's assessment might recommend things like:

• someone to take over caring so you can take a break
• training in how to lift safely
• help with housework and shopping
• putting you in touch with local support groups so you have people to talk to

A carer's assessment is free and anyone over 18 can ask for one.

You can also find out about managing legal affairs for someone with dementia.

Helping someone with everyday tasks

In the early stages of dementia, many people are able to enjoy life in the same way as before their diagnosis.

But as symptoms get worse, the person may feel anxious, stressed and scared about not being able to remember things, follow conversations or concentrate.

It's important to support the person to maintain skills, abilities and an active social life. This can also help how they feel about themselves.

How you can help

Let the person help with everyday tasks, such as:

• shopping
• laying the table
• gardening
• taking the dog for a walk

Memory aids used around the home can help the person remember where things are.

For example, you could put labels and signs on cupboards, drawers and doors.

As dementia affects the way a person communicates, you'll probably find you have to change the way you talk to and listen to the person you care for.

Read more about communicating with someone with dementia

Dementia and relationships

Dementia can affect all aspects of a person's life, including relationships with family and friends.

If you've been diagnosed with dementia, you'll probably find that your relationships with others will change over time.

If a member of your family or a friend has been diagnosed with dementia, or you're caring for someone with dementia, your relationship with that person will change.

It's important to remember that everyone experiences dementia differently. But with the right help and support, relationships can still be positive and caring.

Telling people about your dementia diagnosis

Communication is an important part of any relationship. When you're ready, tell others about your diagnosis.

It's also good to tell them what you may have trouble with, such as following a conversation or remembering what was said.

You may find that some people treat you differently than they did before.

This may be because they do not understand what dementia is or are afraid of the effect on your relationship.

Try to explain what your diagnosis means and the ways in which family and friends can help and support you.

Let your friends and family know that you're still you, even though you have dementia.

Tell them you're still able to enjoy the activities you did before diagnosis, though some may take longer than they used to.

Read more about activities for dementia

How your relationships may change

As the symptoms of dementia worsen over time, it's likely that you'll need extra help and support.

If you've been used to managing your own or the family's financial and social affairs, this can be hard to accept.

It can also be difficult for the person who now has to help you, as the balance of your relationship with them will change.

Other ways your relationships may change include:

• you may become more irritable and less patient – those close to you may find this hard to cope with
• you may start to forget people's names – this can be frustrating for both you and others
• your partner or adult child may become your carer – this can be hard for you both to accept, as you once were able to care for them

It's important to talk about your feelings and frustrations. It's also important to keep in contact with family and friends and try to make new friendships through local activities and support groups.

Communication and dementia

Communicating with others is a vital part of any relationship. Over time, someone with dementia will find it more difficult to communicate.

They may:

• repeat themselves
• struggle to find the right word
• find it hard to follow what others are saying

This can lead to frustration for the person, but also for those family and friends around them.

But there are ways to help.

How to communicate if you have dementia

Tell those close to you what you find hard and how they can help you.

For example, you may find it helpful if people calmly remind you:

• what you were talking about
• what someone's name is

Other things that can help include:

• making eye contact with the person you're speaking with
• turning off distractions like radio or TV
• asking people to talk more slowly and repeat what they have said if you do not understand it
• asking people not to remind you that you repeat things

How to communicate with someone with dementia

If you've noticed that the person with dementia is withdrawing into themselves and starting fewer conversations, it can help to:

• speak clearly and slowly, using short sentences
• be calm and patient, giving them time to respond
• give them simple choices – avoid creating complicated choices or asking lots of questions
• try not to patronise them or ridicule what they say – include them in conversations with others
• try to make sure your body language is open and relaxed
• use other ways to communicate, such as rephrasing questions because they cannot answer in the way they used to, or using prompts such as photographs or objects

Find out about caring for someone with dementia

Communicating with someone with dementia

Dementia is a progressive illness that, over time, will affect a person's ability to remember and understand basic everyday facts, such as names, dates and places.

Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason clearly will change.

If you are looking after a person with dementia, you may find that as the illness progresses you'll have to start discussions to get the person to make conversation. This is common. Their ability to process information gets progressively weaker and their responses can become delayed.

Encouraging someone with dementia to communicate

Try to start conversations with the person you're looking after, especially if you notice that they're starting fewer conversations themselves. It can help to:

• speak clearly and slowly, using short sentences
• make eye contact with the person when they're talking or asking questions
• give them time to respond, because they may feel pressured if you try to speed up their answers
• encourage them to join in conversations with others, where possible
• let them speak for themselves during discussions about their welfare or health issues
• try not to patronise them, or ridicule what they say
• acknowledge what they have said, even if they do not answer your question, or what they say seems out of context – show that you've heard them and encourage them to say more about their answer
• give them simple choices – avoid creating complicated choices or options for them
• use other ways to communicate – such as rephrasing questions because they cannot answer in the way they used to

Communicating through body language and physical contact

Communication is not just talking. Gestures, movement and facial expressions can all convey meaning or help you get a message across. Body language and physical contact become significant when speech is difficult for a person with dementia.

When someone has difficulty speaking or understanding, try to:

• be patient and remain calm, which can help the person communicate more easily
• keep your tone of voice positive and friendly, where possible
• talk to them at a respectful distance to avoid intimidating them – being at the same level or lower than they are (for example, if they are sitting) can also help
• pat or hold the person's hand while talking to them to help reassure them and make you feel closer – watch their body language and listen to what they say to see whether they're comfortable with you doing this

It's important that you encourage the person to communicate what they want, however they can. Remember, we all find it frustrating when we cannot communicate effectively, or are misunderstood.

Listening to and understanding someone with dementia

Communication is a two-way process. As a carer of someone with dementia, you will probably have to learn to listen more carefully.

You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking.

Active listening can help:

• use eye contact to look at the person, and encourage them to look at you when either of you are talking
• try not to interrupt them, even if you think you know what they're saying
• stop what you're doing so you can give the person your full attention while they speak
• minimise distractions that may get in the way of communication, such as the television or the radio playing too loudly, but always check if it's OK to do so
• repeat what you heard back to the person and ask if it's accurate, or ask them to repeat what they said

Coping with dementia behaviour changes

Dementia can have a very big effect on the person affected. They may fear their loss of memory and thinking skills, but they also fear the loss of who they are.

They may also find they do not understand what's going on or why they feel they're not in control of what's happening around them or to them. All of this can affect their behaviour.

Common changes in behaviour

In the middle to later stages of most types of dementia, a person may start to behave differently. This can be distressing for both the person with dementia and those who care for them.

Some common changes in behaviour include:

• repeating the same question or activity over and over again
• restlessness, like pacing up and down, wandering and
  fidgeting
• night-time waking and sleep disturbance
• following a partner or spouse around everywhere
• loss of self-confidence, which may show as apathy or disinterest in their usual activities

If you're caring for someone who's showing these behaviours, it's important to try to understand why they're behaving like this, which is not always easy.

You may find it reassuring to remember that these behaviours may be how someone is communicating their feelings. It may help to look at different ways of communicating with someone with dementia.

Sometimes these behaviours are not a dementia symptom. They can be a result of frustration with not being understood or with their environment, which they no longer find familiar but confusing.

How to cope with common changes in behaviour

Although changes in behaviour can be difficult to deal with, it can help to work out if there are any triggers.

For example:

• Do some behaviours happen at a certain time of day?
• Is the person finding the home too noisy or cluttered?
• Do these changes happen when a person is being asked to do something they may not want to do?

Keeping a diary for 1 to 2 weeks can help identify these triggers.

If the change in behaviour comes on suddenly, the cause may be a health problem. The person may be in pain or discomfort from constipation or an infection.

Ask a GP for an assessment to rule out or treat any underlying cause.

Keeping an active social life, regular exercise, and continuing activities the person enjoys, or finding new ones, can help to reduce behaviours that are out of character.

Read more about activities for dementia.

Other things that can help include:

• providing reassurance
• a quiet, calming environment
• activities that give pleasure and confidence, like listening to music or dancing
• therapies, such as animal-assisted therapy, music therapy, and massage

Remember also that it's not easy being the person supporting or caring for a person with behaviour changes. If you're finding things difficult, ask for support from a GP.

Repeating the same question or activity

Repeating the same question or activity may be a result of memory loss where the person cannot remember what they've said or done.

It can be frustrating for the carer, but it's important to remember that the person is not being deliberately difficult.

Try to:

• be tactful and patient
• help the person find the answer themselves, for example, if they keep asking the time, buy an easy-to-read clock and keep it in a visible place
• look for any underlying theme, such as the person believing they're lost, and offer reassurance
• offer general reassurance, for example, that they do not need to worry about that appointment as all the arrangements are in hand
• encourage someone to talk about something they like talking about, for example, a period of time or an event they enjoyed

Restlessness and fidgeting

People with dementia often develop restless behaviours, such as pacing up and down, wandering out of the home and agitated fidgeting.

Try to:

• make sure the person has plenty to eat and drink
• have a daily routine, including daily walks
• accompany them on a walk to shops or consider tracking devices and alarm systems (telecare) to keep them safe
• give them something to occupy their hands if they fidget a lot, such as worry beads or a box of items that mean something to them

Sleep disturbance

Dementia can cause problems with the person's body clock, or sleep-wake cycle.

A person with dementia may get up repeatedly during the night, unaware that it's night time.

This can be particularly hard on carers, as their sleep is disturbed, too.

Try to:

• provide plenty of activity and exposure to daylight
• make sure the bedroom is comfortable and provide a nightlight or blackout blinds if needed
• cut down on caffeine and alcohol in the evening

Following a partner or carer around

Dementia makes people feel insecure and anxious. They may "shadow" their partner or carer as they need constant reassurance they're not alone and they're safe.

They may also ask for people who died many years ago, or ask to go home without realising they're in their own home.

Try to:

• have the person with you if you're doing chores such as ironing or cooking
• reassure them that they're safe and secure if they're asking to go home
• avoid telling them someone died years ago and talk to them about that period in their life instead

Loss of self-confidence

Dementia can make people feel less confident about going out or doing other activities. This may seem like they've lost interest in people or activities they usually enjoy.

Try to:

• remember they may still be interested in an activity but feel they'll have trouble coping with it
• reassure them the activity, or getting there, will be straightforward
• explain clearly where they are going and who they may be seeing
• consider simpler activities or social occasions, as, for example, joining in a conversation among a large group of people may be too difficult

Aggressive behaviour in dementia

In the later stages of dementia, some people with dementia will develop what's known as behavioural and psychological symptoms of dementia (BPSD).

The symptoms of BPSD can include:

• increased agitation
• aggression (shouting or screaming, verbal abuse, and sometimes physical abuse)
• delusions (unusual beliefs not based on reality)
• hallucinations (hearing or seeing things that do not exist)

These types of behaviours and psychological symptoms are very distressing for the carer and for the person with dementia.

It's very important to ask your doctor to rule out or treat any underlying causes, such as:

• uncontrolled pain
• untreated depression
• infection, such as a urinary tract infection (UTI)
• side effects of medicines

If the person you're caring for behaves in an aggressive way, try to stay calm and avoid confrontation. You may have to leave the room for a while.

If none of the coping strategies works, an antipsychotic medicine can be prescribed as a short-term treatment. This should be prescribed by a consultant psychiatrist.

If you're looking after someone with dementia

Your needs as a carer are as important as the person you're caring for.

To help care for yourself:

• join a local carers' support group or a specialist dementia organisation – for more details, call the Carers Direct helpline on 0300 123 1053; lines are open 9am to 8pm Monday to Friday, and 11am to 4pm at weekends
• try to make some time for yourself, but if it's difficult to leave the person alone, ask if someone can be with them for a while, such as a friend, relative, or someone from a support group
• consult a GP if you're feeling low or depressed as you may benefit from counselling or other talking therapies

More information

Read more about caring for someone with dementia.

Find dementia information and support.

Dementia and end of life planning

It can be difficult and distressing to think about end of life when you may be living well with dementia, with the support of family and friends.

But planning ahead, sometimes called advance care planning, is important as it can help you decide:

• how you'd like to be cared for in the final months of your life
• where you'd like to be cared for
• who you'd like to be with you

Making plans while you're still able to make decisions can help you let people know your wishes and feelings while you're still able to.

It can also help them if they ever have to make decisions about your care.

A care plan is completely voluntary, and you're free to change or withdraw a plan whenever you like.

Practical issues

The care plan you were given after diagnosis should be reviewed at least every year and, when you feel able to, you can add your wishes about end of life.

An up-to-date care plan that includes end-of-life plans should be shared by those involved with your care. With your permission, your plan can also be shared with your partner and family.

Other things you may wish to consider include an:

• advance statement
• advance decision

You can review and change an advance statement or an advance decision during a care review.

If you have not already done so, and while you're still able to make decisions, it's important to:

• make a will
• set up a lasting power of attorney

Advance statement

An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future care.

You can write the statement yourself, with support from relatives, carers or health and social care professionals if needed.

It can include:

• how you want any religious or spiritual beliefs to be reflected in your care
• where you'd like to be cared for – for example, at home or in a care home
• how you like to do things – for example, if you prefer a shower instead of a bath
• music, TV or DVD preferences

An advance statement is not legally binding, but your attorney (if you have one) and healthcare team will take it into account.

Advance decision

An advance decision (sometimes known as an advance decision to refuse treatment, or ADRT) is a written statement you can make now to refuse a specific type of treatment, in case you lack mental capacity in future to make your own decisions.

It's a good idea to discuss the treatments you're deciding to refuse with your doctor or healthcare team, so that you fully understand the consequences.

You may want to refuse a treatment in some circumstances, but not others. You may also want to refuse a treatment that could potentially keep you alive, known as life-sustaining treatment.

Life-sustaining treatments include:

• cardiopulmonary resuscitation (CPR) – this may be used if your heart stops
• ventilation – this may be used if you can't breathe by yourself
• antibiotics – these help your body to fight infection

An advance decision is legally binding if it meets certain criteria, but you cannot ask for anything that's against the law, such as euthanasia and assisted suicide.

If you decide to refuse life-sustaining treatments in the future, your advance decision needs to be:

• written down
• signed by you
• signed by a witness

Make sure your doctor has a copy of the advance decision to include in your medical notes.

Where you can be cared for

When you're approaching the end of life, you may be offered care in a variety of settings, such as:

• at home
• in a care home
• in a hospice
• in a hospital

The people providing your care should take into account any wishes you have expressed. They should also support your family, carers or other people who are important to you.

The care you receive will include the palliative care you have probably received at an earlier stage of dementia, alongside end-of-life care.

Palliative care is for anyone diagnosed with a life-limiting illness. It involves making you comfortable by managing pain and other distressing symptoms.

Depending on your needs and where you receive care, the team of healthcare professionals looking after you may include:

• palliative care nurses
• your GP
• community nurses
• hospice staff
• social care staff
• physiotherapists
• complementary therapists

End-of-life care at home

You may not need to move away from home to receive care, as end-of-life and hospice care can be provided at home. To find out what's available locally, ask your GP.

Your GP can arrange for community nurses to provide nursing care at home.

You may also need specialist care from community palliative care nurses, who can also provide practical and emotional support for you and those caring for you.

Social services may also provide services and equipment to help you remain at home.

In a care home

You may already be in a residential or nursing home and wish to stay there, as trained staff are available to look after you day and night.

Your care may involve the local hospital's palliative care team, the local hospice team, your GP, community nurses and district nurses.

Hospice care

Hospices are specialist units run by a team of doctors, nurses, social workers, counsellors and trained volunteers. They're smaller and quieter than hospitals, and feel more like a home.

The care provided in a hospice is free. It also extends to those who are close to the person with dementia, as well as into the bereavement period after the person has died.

It may be possible to attend a hospice as a day patient to benefit from a wider range of services than at home.

Ask your GP or district nurse about a hospice near you.

In a hospital

Some people with dementia are admitted to hospital towards the end of their lives.

This is not something most people would have wanted, as hospitals tend to be noisy, with little facility for relatives to stay for as long as they want to.

But sometimes hospital is the best option. Many hospitals have specialist palliative care teams that work alongside the hospital doctors and nurses.

Support for carers and family

Coming to terms with the impending loss of someone you may have helped care for over a period of time is difficult and upsetting.

Talk to the healthcare professionals about your own concerns and wishes. These may include reassurance that the person's pain is being properly managed or the need to be with them at the end of their life.

After the death of a loved one, you'll experience bereavement in your own way. It's important that you're supported in this process.

Read about grief after bereavement or loss.