In the sections below we'll focus on various topics relating to dementia to guide you to helpful and trusted information, and suggest things you can do.
This guide aims to help you:
Reactions to a dementia diagnosis vary - some people are shocked, some relieved to know what's wrong; others feel angry or helpless. There's no right or wrong way to react. But having the diagnosis early gives you the chance to make sure you can prepare and get the best out of life as the illness progresses.
There's no cure for dementia yet, but there's lots you can do to keep yourself well and plan for the future. The term dementia refers to the effects of a range of conditions. The most common is Alzheimer's disease. Other common types are vascular (or blood vessel) dementia, dementia with Lewy bodies and frontotemporal dementia. There are also around 100 rarer conditions that cause dementia, including Parkinson's disease, Huntington's disease, corticobasal degeneration (CBD) and progressive supranuclear palsy (PSP). Your doctor should have explained which type of dementia you have.
Each type progresses differently and the rate at which the effects develop varies widely between types of dementia and from person to person. You may have many years of active life ahead. Acting now can bring you peace of mind and help those close to you understand your needs and wishes.
You are not alone. More than 850,000 people in the UK are living with dementia right now. Many find it helpful to talk to other people with dementia. You can do this online through forums like those on HealthUnlocked. You can read forum posts to see the sorts of things being discussed and can join if you want to ask a question or share your thoughts.
There's a wealth of information about dementia online too. If you want to know more about the condition, try:
If you'd prefer a book, try Reading Well. It lists 'books on prescription' about dementia and they should all be available through your local public library. You can also watch thousands of videos about dementia online – try this Alzheimer's Society channel.
Finally, if you aren’t a confident internet user, there are free, easy-to-follow 'get online' courses at Learn My Way.
Here we cover some of the treatments you may be offered or that you might hear about. What treatments are suitable for you will depend on many factors. These include what sort of dementia you have and how it is affecting you now, and whether you are already having treatment or medicines for other conditions alongside dementia. You should discuss your treatment options with your doctor; these will be reviewed as your dementia and any other conditions you have progress.
Dementia treatment will typically be a combination of:
There are also 'alternative' therapies, such as aromatherapy. Though many of these have little or no scientific evidence as to whether they work, some people find they do help with certain symptoms, such as sleep problems. The Alzheimer's Society has information on alternative therapies.
Finally, there's self-care, which covers all the things you do in your daily life to stay well and look after yourself. The better you care for yourself, even if you need help with some things, the longer you're likely be independent, active and enjoying life.
Some people diagnosed with dementia feel they want to 'do something' about it. One way is to get involved in research - this might make you feel better, and in the longer term you may be helping others.
There's no shortage of opportunities: along with numerous research projects, in March 2017 the UK Clinical Trials Gateway listed more than 180 trials around dementia that were looking for people to take part.
There are numerous projects trying to improve dementia treatments or find ways to prevent or even cure the condition. The NHS National Institute for Health Research offers lots of ways for people with dementia to join in. It also has a resource page that lists online information sources and booklets that could help you decide if you want to be involved in research and in what ways.
Having dementia doesn't mean you have to stay at home all time - getting out and being active is good for you. If you work, you don't have to stop but you must tell your employer in certain jobs, such as those that involve using machinery, driving or the armed forces. It's a good idea anyway to tell your employer about your dementia. The Equality Act means employers must treat you fairly. It gives you the right have 'reasonable adjustments' made so that you can keep working for as long as possible. That could mean things like changing your role to take some pressure off you, or reducing your hours so you don't have to concentrate for so long. Some employers even create a 'buddy' system where a colleague who knows you and your role can support you if needs be.
You don't necessarily have to stop driving straight away with dementia, but you must tell the DVLA and your insurer of your diagnosis. You won’t be able to drive lorries or passenger vehicles, but you may be able to keep on driving your car or motorcycle - if you can continue, your licence will usually need renewing annually.
Check the information leaflet with any medicines you take - some have side effects that mean you shouldn't drive. If you do stop driving, most areas have free or reduced-cost schemes for getting about, such as bus passes, railcards and services such as dial-a-ride. There are also voluntary services that can provide transport. Your local social services can tell you what's available. Depending on your circumstances, the NHS might cover travel costs if you need to go to hospital or a specialist clinic for tests or treatment. See help with health costs on the NHS website.
So long as you are happy to do it, there's no reason not to jet off on holiday. Dementia affects people in different ways; for some travel is an ordeal while others do it with ease. If you are going abroad, tell your travel insurance company about your diagnosis and if you need someone to sit with you, tell the airline when you book. Some airports offer travellers with dementia a discreet lanyard to wear to let staff know they might need help. Many UK airport staff have had training to help them understand the needs of travellers with dementia.
There's good information online about travelling with dementia, including holidays and travelling from the Alzheimer's Society. There are also specialist travel firms that offer supported holidays and short breaks for people with dementia and their families - search online for 'dementia holiday'.
Healthy eating and good health go hand in hand. A poor diet can make you more susceptible to other illnesses, and being ill often increases confusion or memory problems in people with dementia. To stay well you need a balanced diet with a wide variety of foods and you need the right amounts of food and drink to keep you at a healthy weight.
There's a wealth of information on eating a balanced diet on the NHS Choices website, including The Eatwell Guide, which shows all the sorts of things that go into a balanced diet. You can use it to check whether you ought to think about changing the way you eat. Often only small changes are needed for you to benefit. You could also use their BMI calculator to check you're a healthy weight and get advice if you aren't.
As dementia progresses, eating and drinking can present a range of problems. Mouth pain is one of the things that puts people off eating. One thing you can do now to help you keep enjoying your food is make sure your teeth and gums are healthy. If you wear dentures, make sure they fit properly. Everyone should have a dental check-up at least every two years - if you haven't seen a dentist for a while, think about booking a check-up.
If you already take regular exercise or play a sport, keep doing it! Exercise keeps you energetic. It can also lift your mood, improve your appetite, keep your weight in check, prevent constipation, improve blood pressure, and prevent falls by keeping you stronger and better balanced. It's also a way of staying in touch with friends and acquaintances.
Almost any physical activity counts as exercise: walking, climbing stairs, cycling, swimming, gardening and dancing can all be beneficial. If you can't get around easily, there are exercises you can do sitting down on the NHS website. Many council leisure centres run exercise classes for older people and some specifically for people with dementia. You could look into what's available in your area - even if you exercise alone now, as your dementia progresses you may find it easier to keep it up as part of a group activity.
Read about exercise in the early to middle stages of dementia on the Alzheimer's Society website.
Having dementia doesn't mean you must stop drinking, and many people enjoy socialising over a drink or two. But alcohol can increase confusion and the risk of falls in people with dementia, so it’s a good idea to limit how much you have and keep well within the health guidelines that say no-one should have more than 14 units of alcohol in a week - that's about 6 pints of mid-strength beer or 10 small glasses of low-strength wine. You shouldn't drink with certain medicines or at all if your dementia is related to past alcohol consumption.
If you smoke, think about stopping. If you want to be healthier, it's probably the best single thing you can do. Smoking causes or contributes to a whole range of health conditions and your risk of getting most of them starts falling the minute you stop.
Apart from the health risks, the memory problems and lack of co-ordination that can come with dementia also increase fire risks when people smoke. You can get help to quit from your GP, pharmacist or a specialist stop-smoking clinic. Visit NHS Smokefree to find your local stop-smoking service.
Frustration, feeling 'down' and being anxious are all common in dementia. There are things you can do to cope with these and there's plenty of help available if you need it.
Depression is a particular risk early in dementia as you notice changes in your abilities that make it harder to remember things, find the right words or cope with everyday tasks.
Talking about the things that are troubling you and sharing your feelings with your partner, family members or friends can be a great help. Telling them about your diagnosis and helping them understand your dementia means they'll be in a better position to help you if you need them to.
Seeing friends and family, taking part in social activities and keeping physically fit can all help with your mental wellbeing.
If you find it's getting harder to follow conversations or concentrate on reading or watching TV, there's a couple of things to check that may be nothing to do with your dementia. Hearing and eyesight commonly decline as we get older and can be sources of frustration for anyone. Get your hearing and eyesight checked, use a hearing aid if you need it and make sure any glasses you use are the right strength. Everyone should have an eye test at least every two years and you can do an online hearing check at the Action on Hearing Loss website. You can also do the check by phone on 0844 800 3838 - it's automated, so you don't need to speak to anyone.
If you are worried that you might be depressed, the NHS website has a depression self-assessment tool to help you check whether you should see your GP. It also has a mood self-assessment tool. Both tools offer links to advice on things you can do to improve the way you feel and on whether you need to see your doctor.
If you do have depression, your GP might prescribe antidepressants, or get you an appointment with a psychiatrist. You may be offered talking therapies or cognitive behavioural therapy (CBT).
If you are worried that you have a mental health problem along with your dementia, you should arrange to see your GP as soon as you can.
If you become distressed and need immediate help but are unable to see a GP, you should visit your local A&E. You can also get help and support from:
It's likely that you will eventually need a good deal of help, support and care - but that time may be many years away. Right now, while you are still able to decide things for yourself and can clearly tell people what you’ve decided, there’s practical planning you can do around legal matters and your future care.
Choose someone to manage your affairs if you become unable to do so. The person you choose is called your 'attorney'. It could be your partner, another relative or friend, or anyone you trust - you can have more than one. You can create a legal lasting power of attorney (LPA) to let the person you choose make decisions about your money and property and/or your health and wellbeing. You can let the attorney look after your money and property any time after the LPA is set up or only if you become unable to do it yourself. The health and wellbeing power can be used only if you lose the ability to make your own decisions - this is called losing mental capacity. Go to GOV.UK for more information, and to set up an LPA.
You can make an 'advance statement' about how you wish to be cared for if you become unable to tell people. This can cover areas of your life from religious beliefs to where you'd like live if you couldn't be at home. It can cover all manner of things, such as what you like or don't like to eat, whether you prefer a shower to a bath, or even what sort of music you prefer. It's not legally binding but must be considered by those looking after you.
You can also make an 'advance decision' - formerly called a living will - if you know there are specific treatments you'd want to refuse in certain circumstances. There are strict rules about advance decisions but, if valid, they are legally binding on medical staff.
Age UK provides a good factsheet on making advance decisions and statements.
You could also use MyDirectives, a free service that lets you store your preferences securely online so they can be shared with your family and medical staff if they are needed.
If you haven't made a will already think about doing it now. If you don't make one, you won’t have any say over where your money and possessions go. It doesn't have to cost anything at all, though you can pay to use a lawyer or will-writing service if you want. GOV.UK has a straightforward guide to making or updating a will.
Sort out all your important papers, such a pension documents, savings records, insurance policies, banking details and so forth and keep them together in a safe place. This will make it easier for you to find and manage everything and will help others if they have to take over these things for you.
Over time you may have to make changes in the things you enjoy doing and the ways you do them. But it's best to keep doing the things you like for as long as you still enjoy them - and that might be for years. Hobbies, pastimes, clubs, classes and other leisure activities, and socialising with family and friends, all help to keep you fit, active and interested in life.
If you are a member of a club or go to classes, it's a good idea to tell the club organiser, tutor or friends you go with about your diagnosis - this will help them understand if you begin to have difficulties, such as struggling to remember people's names or follow conversations.
As dementia progresses, many people start to find unfamiliar places or activities stressful. With your early diagnosis, you may want to try some new things now - this can be stimulating and widen your social circle.
Doing voluntary work, for example, can give you a new sense of purpose. Studies have shown a clear link between volunteering and good mental and physical health. If this interests you, visit NCVO, the national volunteering website where you can find out about opportunities and get in touch with your local volunteer centre.
Some people find activities such as tai chi classes, group walking or yoga sessions bring them a great deal of pleasure and help keep them active.
If you have a partner, keeping up your own activities and doing things away from your partner can help ease tensions for both of you. The changes that happen in dementia can strain intimate relationships. There's no reason not to continue enjoying a fulfilling physical relationship. Sometimes, however, issues around sex and intimacy can eventually cause problems for you or your partner. You might want to find out about common difficulties now and discuss them with your partner. The Alzheimer's Society website has a section on sex and intimate relationships in dementia. You can also call their national helpline on 0300 222 11 22. Their advisers offer support to anyone with dementia, or who looks after someone with dementia, including lesbian, gay, bisexual or transgender people. Admiral Nursing Direct's helpline can also help with these sorts of issues - call 0845 257 9406 or email email@example.com
If you find it hard to talk about these issues, or any others, you may find it easier to join a discussion in an online forum or community.
It's also a good idea to find out now about the sorts of local support groups and social facilities especially for people with dementia and their families. If you live alone, think about telling trusted neighbours or a friend who lives nearby that you have dementia in case you need to call on them for help.
Many areas have memory cafes where you can informally meet others with dementia and the people who care for them. There are also often walking groups, singing sessions and a host of other activities specifically for people with dementia and their families. Even if you don't want to join these right now, it's worth finding out about them.
You can check what's available in your area by searching on Dementia Connect or by contacting your local social services department.
There's lots of support available to help you stay in your own home and keep your independence. And there are benefit payments you may be able to claim to help with finances.
If you've not done so already, ask your local social services for an assessment of your care needs. Many people think of social care as being moved into a care home or nursing home. In fact, most social care is geared to helping people stay in their own homes and have a good quality of life.
Read about the different roles of social services and the NHS at NHS Choices.
In the early stages of dementia, you may need very little support. You might be given information about local services and support groups and may not need much more. Later, however, you might need special equipment, help with daily tasks or adaptations to your home.
You can get advice on needs assessments from the Admiral Nursing Direct helpline - call 0845 257 9406 or email firstname.lastname@example.org.
Some people with dementia can have their care needs partly or entirely paid for by the local authority. If you want care and support paid for by the local authority you must have a care needs assessment and meet various conditions, mainly about your income and savings.
There's also a system of free NHS 'continuing healthcare' which pays for all health and care needs together. Some people with dementia qualify for this, but only if their main need is for healthcare rather than social care. The Alzheimer's Society has information on NHS continuing care.
Everyone with a long-term condition such as dementia should have a written care plan to help manage their day-to-day health and care. You should be as involved as you want to be in creating the care plan - it is individual to you. It starts with the needs identified in your care assessment and sets out how those needs will be met. The care plan should be reviewed regularly to make sure it is working and to keep pace with changes in the support you need. Read about care plans on the NHS website.
You should check that you are claiming any benefits or tax credits you might be eligible for. You can find out about financial help you might be able to claim on GOV.UK.
If you are under 65, you might be able to claim the Personal Independence Payment. If you need help with daily tasks, such as dressing or at mealtimes, you could be eligible for Attendance Allowance (even if you don't currently get the help you need). If you get Attendance Allowance you could also get a council tax reduction and extra pension credit or housing benefit. You can ask about this at the office handling the benefits or call the helpline on 0345 605 6055. Find out about Attendance Allowance at Citizens Advice.
If your partner, another relative or friend is spending time helping you, they might be classed as a 'carer' even though neither of you think of it like that. But if you get any one of a range of benefits, they might be entitled to Carer's Allowance if they are spending more than 35 hours a week helping you. Find out about Carer's Allowance at Carers UK
Here we talk about some of the many practical things you can do around your home and in your daily life to keep things running smoothly. Some helpful things are extremely simple, like putting up notes to remind you to do things and labels to show where things are. Other aids, such as monitoring systems that let people know you’ve got up or gone out, are a bit more high-tech. What you need and works for you will depend on how your dementia affects you now.
Age UK publishes 'At home with dementia' which gives tips on making the whole home 'dementia friendly' and looks at all the main rooms - bathroom, kitchen and so on - where changes might be needed now or in the future. It offers a great many ideas and suggestions but you only need to do the things that will help you now. Many of the suggestions cost nothing.
There's also a lot of 'assistive technology' that can help keep you independent. Broadly, assistive technologies fall into three categories:
You can see the sorts of things available by visiting AT Dementia, a charity that specialises in assistive technology for dementia. Some of the kit is expensive but, depending on your circumstances, similar things may be provided by social services or other organisations. Some offer a loan or trial service for certain aids.
It's a good idea to use a diary to write down times for all your appointments and things you need to do, such as taking medicine, doing shopping, putting out the rubbish. You could also use the calendar on a computer or smartphone for this - you can get a sound alert when things are due. A simple weekly timetable on a wall or noticeboard can also be a great help.
Store numbers for people you call often in your phone and keep a list of important numbers on a noticeboard. Many phones let you add pictures of people with their names and numbers to help recognition.
Switch any bills you pay onto direct debit so they can't be forgotten.
Check your smoke alarm is working, and think about fitting detectors for gas and CO2.
Carry a card with the name and phone number of someone who can be contacted if you are out and need help. You can also have this on the 'lock screen' of most smartphones where it’s known as ICE (In Case of Emergency) information.
You can use the internet for keeping in touch with people, joining supportive communities, shopping, banking, booking things - including many health appointments and repeat prescriptions. You can also play games and get entertainment, like videos, TV and radio shows, whenever you want. And if you'd like to share your experiences, you could even start a blog. Search online for 'start blogging free' and you'll find lots of easy-to-use free sites where you can set up and write what you like.
If you're not sure how to do some of these things, try the courses at Learn My Way - they are free, signing up is simple and the courses are very easy to follow.
Thanks for reading this online guide for Dementia. We hope you've learnt a little about what you can do to live well for longer.