Worried about dementia?
If you’ve had some problems remembering things that happened recently, or have found yourself getting confused in familiar places, you may be worried these are signs of dementia.
Common difficulties include:
- Struggling to remember things that happened recently, even though you can easily remember things from longer ago.
- Struggling to follow conversations, particularly in groups.
- Forgetting the names of people or things.
- Struggling to follow a story on television or in a book, or understand magazine and newspaper articles.
- Having trouble remembering the day or date.
- Having trouble remembering where you put something, or where things are kept.
- Repeating yourself or losing the thread of what you are saying.
- Finding your thinking is fuzzy.
- Struggling to do things you used to find easy.
- Feeling confused even in a familiar place.
- Having problems controlling your mood, or controlling your emotions.
As we get older, most of us experience these things from time to time. And being forgetful or getting confused doesn’t necessarily mean you have dementia. Dementia-like symptoms can be caused by depression, vitamin deficiencies, stress, thyroid problems or urinary tract infections.
But if you’re worried, it’s always best to talk to your doctor to discover what’s causing it.
Your doctor should:
- discuss your concerns and symptoms
- ask questions to test your thinking and memory
- carry out a full health check to see whether your symptoms could be due to other causes
- if necessary, refer you to a specialist or a memory clinic for a fuller assessment.
Getting a diagnosis of early-stage dementia won’t make things worse, but it can help you make changes to live as well as possible and make plans for the future.
People react in different ways to getting a diagnosis of dementia.
It may seem overwhelming at first. You may feel shock, disbelief and a sense of loss that you may not be able to do some of the things you planned. You may be scared about the impact it will have on those close to you. Or you may feel guilt because you think you’ve done something wrong or could have avoided it. It’s important to remember that dementia is a physical condition and is not your fault. On the other hand, you may feel relieved that you can put a name to what’s wrong and better understand what’s happening.
There’s no right or wrong way to feel. Take your time and process what it means for you.
The memory clinic or other health specialist in charge of your care should tell you the type of dementia they think you have. They may suggest drugs to slow down the progression of your symptoms and they should arrange to see you regularly to see how you’re getting on.
You should ask to be given a named contact who can support you through your journey with dementia, help you understand what is going on and get you the help that you need.
How might dementia affect me?
Dementia affects everyone differently. Not everyone has the same difficulties, and everyone experiences them in their own way.
Over time, it can reduce your ability to remember people and places, look after yourself and make decisions for yourself.
Although your symptoms will get worse over time, for many people the progression is slow, giving you time to adjust to changes in what you can and can’t do.
Many people with a diagnosis of dementia stay independent for many years, and live well with dementia.
The Alzheimer’s Society's Dementia guide: About dementia
Mental Health Foundation’s guide Still going strong
Talking to family and friends
You may be wondering what to tell people about your diagnosis and might be worried their behaviour towards you will change.
People can have the wrong idea about dementia and they may not know how to respond or behave.
It’s a good idea to talk about how dementia is affecting you, what you can manage, and what they can do to help. The more specific you are about the challenges you face, the more likely people are to be able to help. The Alzheimer’s Society’s factsheet Supporting a person with dementia during visits, holidays and celebrations may help.
Dementia can be particularly hard to explain to young children, but the Mental Health Foundation have a useful guide called The milk’s in the oven . The Alzheimer’s Society’s booklet Talking to children about your illness might also help.
Your family and friends may find it useful to read our free guide Caring for someone with dementia or read our information on your changing relationship.
Counselling and other types of therapy
Sometimes talking to an outsider is easier than talking to those close to you. And counselling gives you a chance to speak openly with someone who will support you and listen without judging you or your situation.
If you’re interested in counselling, speak to your GP or contact the British Association for Counselling and Psychotherapy.
Everyone has their own ways of dealing with the challenges of dementia but here are some ideas that have helped other people.
- Follow a routine. Doing things at the same time each day or week can reassure you and stimulate your memory.
- Pin notes up in prominent places if there are things you need to do regularly, like locking the doors at night or putting out the recycling.
- Carry a notebook to write down daily tasks.
- Put important things, like glasses or keys, in the same place every time so that you know where to find them.
- Don’t be afraid to ask questions or say you don’t understand or have forgotten what was said.
- Put important telephone numbers by the phone.
- Stay in touch with family and friends so you don’t become isolated.
- Carry a helpcard that tells people you have dementia and includes the contact details of someone you can trust. These are available from the Alzheimer’s Society .
- Make sure other people don’t take over your life by doing as much for you as possible.
Whatever strategy works for you, remember that dementia is an illness. Go easy on yourself.
Driving with dementia
If you drive, the law requires you to tell the DVLA and your insurance company about your diagnosis.
Having dementia doesn’t necessarily mean you’ll have to stop driving straight away. The DVLA takes each case individually. If they decide you can continue to drive, they’ll usually give you a driving licence that is valid for a limited period – usually one year – after which they’ll review your condition again.
See our guide In the driving seat and the Alzheimer’s Society’s factsheet Driving and dementia for more information.
Working with dementia
If you’re still working, it’s a good idea to tell your employer about your dementia diagnosis so they can help you continue working.
And if you’re in the armed forces, work on a plane or ship, or your job involves driving, you must tell your employer.
Once you’ve told your employer, they have a legal duty to take reasonable steps to help you continue working. This could include changing your work schedule, simplifying your routine, or using technology such as a computerised diary to remind you of deadlines and meetings. If you decide to stop working, get advice on your pension and any benefits you may be eligible for first.
The Alzheimer’s Society’s guide Employment and the Acas booklet Promoting positive mental health at work have more useful information.
Taking holidays with dementia
Holidays can be a great way to relax and get away from it all.
But if you’re going abroad, make sure you disclose your dementia when you’re getting travel insurance. If not, it might not cover you if you have an accident or illness linked to your dementia. These policies sometimes have higher premiums, so it’s a good idea to shop around.
Think about the type of break you’d like. Many people still enjoy new and exotic places and can manage well with a little planning and support. But if you find new environments confusing and overwhelming, you may prefer to go somewhere familiar.
If you’d prefer a specialist holiday for people who need extra help and support, contact Revitalise who provide short breaks for people with disabilities and their carers. Tourism for All can also advice on accessible holidays for people with dementia and Dementia Adventure specialise in arranging holidays and short breaks for people with dementia.
For further information contact Silver Travel Advisor for advice on planning a holiday, and read the Alzheimer’s Society’s factsheet Travelling and going on holiday.
Making small changes to your home now can make it easier for you in the future.
- Simple gadgets can be a big help. For example, a clock that shows the date and day of the week, or a pill box with compartments for different days and times.
- Home adaptations , repairs and improvements such as handrails, grab rails, ramps or bathing aids can make life easier. There may be grants available to help with the cost of these. Contact your local social services department to ask for an assessment.
- Telecare is equipment that can help keep you safe and let others know what is going on. For instance, sensors in the bathroom could detect flooding, switch off the water and raise the alarm, or pressure mats by the bed can detect when someone has got up and then alert their carer. Contact AT Dementia to find out more.
Making your home safe and comfortable doesn’t have to be expensive. For example, good lighting can make a big difference. Visit the ‘Home environment and dementia’ section of NHS Choices for affordable ideas. The website Ask Sara can help you decide which bits of equipment might help you to stay independent and make your life at home easier.
Download our free guide At home with dementia for many more tips and advice.
It’s worth thinking about what you want to happen if your dementia progresses to the stage where you need a lot more help. It can be hard to think about this, but planning ahead should mean that your wishes are respected if you can’t make that decision in the future. There are a range of options.
- Sheltered housing is specifically designed for older people. You live in your own accommodation but there is extra help if you need it. If you have a partner, you can move in together.
- Extra-care housing is similar to sheltered accommodation but has more help available. Services vary, but meals and personal care are often included. The cost depends on how much help you need. If you have a partner, you can move in together.
- Care homes offer personal care and some offer nursing care too. They are staffed 24 hours a day.
For more information on your housing options, see our guides Housing options and Care at home.
Keeping active, both physically and mentally, can help you feel more positive and remind you, and others, of what you still have to offer. There’s lots you can do to make the most every day.
- Voluntary work. Think about what you’re doing and the kinds of things you like doing. You could ask at your local church or faith group, your favourite charity, or a charity shop. Contact Volunteering England to find out about volunteering opportunities.
- Exercise. Exercise is good for your health and can also improve your mood and lift your spirits. See our free guide Healthy living for suggestions.
- Reading and word puzzles. If it’s hard to focus on or follow books, try reading short stories or newspaper or magazine articles. Keep doing crosswords and Sudokus if you enjoy them, and don’t worry if it takes you longer to complete them or you need to switch to an easier version.
- Socialising. Keep in touch with friends and family so you don’t become isolated. Visit ‘Get involved’ to find Friendship Centres near you where you can meet like-minded people.
- Gardening. Getting outside can make you feel a lot better. If you’re finding gardening harder than you used to, contact Thrive who offer advice on practical solutions such as specially adapted tools.
- Cooking. Try adapting the recipes you used to use, or look for recipes that have fewer steps. Find out about adapted kitchen tools that can make life easier and use a basic kitchen timer to remind you to check on what’s in the oven.
- Television and radio. Some people find it hard to concentrate on the television. Some find listening to the radio easier as the brain only has to concentrate on sound. Music can help bring back memories, which can be very reassuring and enjoyable.
Getting involved in dementia research
You may want to use your experience to help researchers develop new drugs and treatments and discover new ways to manage the symptoms of dementia.
The Alzheimer’s Society has a research network of volunteers made up of people with dementia and carers. You don’t need any special knowledge, all activities are optional and you can do the work from home. Contact the Alzheimer’s Society for more information and an application form, or email firstname.lastname@example.org
Legal and financial plans
Getting organised now means you can feel confident that the care and support you receive in the future will be right for you, and your affairs will be dealt with in the way that you wish.
- Think about setting up a Lasting Power of Attorney (LPA) so that you can appoint a trusted person to make decisions for you when you’re no longer able to do so.
- Make sure you have a valid, up to date will that reflects your wishes.
- Think about making an advance decision to refuse medical treatment which lets you say which types of medical treatment you would not want to have in certain situations. This will only be used if you lose the ability to make or communicate the decision yourself.
- Set up an advance statement which explains how you would like to be treated. For example, you can state what kind of food you want to eat, what sort of music you want to hear, and whether you prefer baths or showers. For more information, see our free factsheet Advance decisions, advance statements and living wills.
- If, in the future, you can’t make certain important decisions yourself and have no-one to speak up for you, an Independent Mental Capacity Advocate (IMCA) will be appointed to help you. They would be involved in decisions about things like serious medical treatment or where you live.
Organising your finances
It’s a good idea to make sure your finances are in order.
Start by making sure you know where important documents are, such as your mortgage or tenancy agreement, insurance policies, and bank statements.
Paying your bills by direct debit means the money will automatically be paid from your accounts, so you’ll never forget to pay a bill. Look on each bill for details of how to do this.
A joint account means you can add the name of a friend or relative to your bank account which means they can get access to your money if you need help. Or you could set up a third party mandate, giving someone permission to manage your bank account on your behalf. Think carefully and make sure you choose someone you trust. Remember that most joint accounts and third party mandates will only operate when both people have the mental capacity to run the account. See our guide Protecting yourself for more information.
It’s important to remember that you don’t have to go through the journey with dementia on your own. Make sure you ask for all the support you’re entitled to.
Make sure you’re claiming all the benefits you’re entitled to. You may be entitled to a disability benefit: either Personal Independence Payment or Attendance Allowance depending on your age. These aren’t means-tested so your income and savings won’t be taken into account.
If you live alone, you can apply for a 25% reduction on your Council Tax Bill . Or, if you live with someone else, they may be entitled to a 25% discount on their Council Tax bill because of your dementia.
If you have a carer, they may be entitled to Carer’s Allowance , however, if they claim it, any income-related benefits you receive like Pension Credit may be reduced. See our guide Caring for someone with dementia or our pages on Caring for someone with dementia to find out more.
If you’re having difficulty managing daily tasks or aspects of personal care, contact your local social services department to ask for a free community care assessment.
They will look at what kind of help you need and decide what services could help.
If you qualify for help, you may be offered a personal budget . This is money from the council which you can use to arrange and pay for your care.
You may be charged for these services but the amount will depend on the services you receive and where you live, as rules differ throughout the UK.
Memory cafes offer information and support in an informal setting where you and your carer can attend together. They let you drop in to meet up with other people in similar situations. To find out about local memory cafes, ask your dementia adviser, local Age UK or local Alzheimer’s Society group.
Day centres can provide you with company and things to do. Some are for older people, with or without dementia. Others are just for people with more advanced dementia.
You may find the idea of day centres daunting. If you find one that you want to try, ask if someone from the centre will come and talk to you about what it’s like. They can then be a familiar face for when you first go along.
Remember that day centres are all different. If you’re not happy at one, you might find another one that suits you better.