Publication
Facing Dementia
Introduction
This booklet is for you if your doctor has told you that you have dementia. Your doctor may have told you that you have a particular kind of dementia, such as Alzheimer's disease, vascular dementia or multi-infarct dementia. This information is for people with any type of dementia.
This booklet will help you understand more about your illness and about how to cope with the effects it may have on your life. It will show you where you can turn to for help and how to plan for your future. The earlier you start toplan, the more control you have over what happens in the future.
Dementia is a serious illness, and it will gradually affect your life more and more. But there are two things you should know. First of all-you are not alone. There are many people who can help you, including:
- your family and friends
- health and social workers
- counsellors
- Alzheimer Scotland Action on Dementia, the national organisation for people with dementia and their families. Their address is at the end of this booklet.
The second thing to remember is- you are not helpless. This booklet will help you find out about what you can do to help yourself and your family now and later on.
Summary
You are not alone.
Section One: Your diagnosis
It is very important to have a proper diagnosis. If you have been feeling forgetful or confused but have not been told by a doctor that you have dementia, you should see your doctor as soon as possible. There are many causes of memory problems and confusion, and some of them can be treated. For example, chest or urinary infections, depression and the side-effects of some drugs can all make some people confused. This confusion can usually be reversed.
If your doctor has not given you a clear diagnosis, visit him or her again. Ask to be referred to a specialist for a full assessment.
There is no one test which will tell the doctor whether or not you have dementia. He or she will need to find out from you and perhaps from your family what problems you are having. He or she will do tests to see more clearly what your difficulties are. The doctor will also check whether you have any other condition which causes symptoms that can look like dementia.
You are entitled to an explanation of what each test is for, and to be told what is wrong with you. This diagnosis is confidential. No-one else should be told it without your permission. But if you are willing, it is a good idea for someone close to you to talk to the doctor. Then they will know what is going on and can support you.
Like most people, being told that you have dementia was probably a shock. You may already have felt that something was not quite right. Perhaps you noticed your memory was not as good as it used to be. Perhaps you were not managing to do things as well as you used to. For some people, having a proper diagnosis can come as a kind of relief. One person with dementia said, 'I thought I was going mad?at least now I know I've got an illness'.
You will need time to start getting used to the idea of having dementia. You may want to find out more about what your illness means. Reading this booklet is a good start. You can ask your doctor to explain more about dementia. The doctor may have tried to explain when he or she first told you your diagnosis. Perhaps you were too shocked to take it in. Don't be embarrassed to go back and ask again. Perhaps you could take notes or tape-record what the doctor says to remind yourself later.
You may feel angry or frightened, or not believe it is happening to you. You will probably need to be able to talk about how you feel to someone. Perhaps you can talk to your partner or a close friend or relative. Or you may choose to talk to a professional worker you know. This could be your community psychiatric nurse or social worker or a counsellor, for example. Or you may find it easier to talk things over with someone you don't know, completely confidentially. There is free 24-hour Dementia Helpline (0808 808 3000) which you can call at any time, for information or to talk.
Summary
Get a proper diagnosis from your doctor.
Talk to someone about your feelings.
Ask to see a specialist.
Section Two: About dementia
Dementia is an illness which affects the brain. It can affect your memory, thinking and actions. It is a progressive illness, which will gradually affectyou more. People of any age can develop dementia, although it is more common in older people. There are over 50,000 people in Scotland with some degree of dementia, so you are not alone.
There are many kinds of dementia. The most common causes are Alzheimer's disease and vascular dementia, including multi-infarct dementia.
Alzheimer's disease damages individual brain cells one by one, so that the brain can't work as well as it used to.
In the vascular dementias, there are problems with the blood supply to brain cells. For example, the most common type of vascular dementia is multi-infarct dementia. Tiny strokes (infarcts) damage small areas of the brain. Each time you have one of these little strokes, there will probably be a change in how well you are coping. These tiny strokes may make you feel unwell and more confused for a short time, or you may not notice them at all.
Summary
The effects of dementia are gradual.
Dementia affects the brain.
Dementia is a progressive illness.
Section Three: How will dementia affect you?
Having dementia means that you will need to come to terms with changes in your life. These gradual changes may be hard for you to think about or accept. But if you know what to expect, you have the chance to plan and to think about how your will cope. One woman with dementia said, 'I'd always rather know what's likely to happen?that way at least I can make plans'.
At first, you may have trouble finding words, finishing thoughts, following directions or remembering names or other information. You may get irritable and frustrated sometimes. You may feel confused and your friends and family may notice changes in your personality and behaviour.
It is a good idea to tell your family and friends what is happening to you. Then if they notice changes they will understand. You also could ask your doctor to discuss the effects of your illness with your family.
You will find increasing problems with remembering and thinking as time goes on. Reading and writing will gradually become more difficult, and it will be harder to take in new information and make decisions.
Later you will find your everyday activities difficult. You will begin to have trouble with tasks such as remembering appointments and shopping lists,coping with money and cooking. Eventually, you may need help with basic activities such as washing, dressing and eating.
These changes are very gradual. You may stay the same for months or years. Every person with dementia is different. It is impossible to predict when changes will occur. Although it may become difficult to continue some of our usual activities, you may re-discover other things to enjoy; for example, sorting out your family photographs, gardening or listening to music.
Summary
You may stay the same for months or even years.
There will be gradual changes to your abilities.
Tell your family and friends what is happening to you.
Section Four: What can you do?
There are many positive steps you can take to help yourself cope. The first thing to remember is that these changes are not going to happen suddenly. You will have time to adjust your lifestyle and to find help when you need it.
Here are some of the things that people with dementia have found most useful:
- Write things down. Make lists of what you need to do, keep a diary and get into the habit of checking it regularly, make notes of where things are. A weekly diary up on the wall can be useful.
- Decide where to keep important things like money, keys and glasses. Put them in the same place every time. Keep a note of where they are so that you can track them down.
- Make a routine for yourself. You may find it easier to keep track if you have a regular way of doing things and a particular time to do them.
- If you are taking medicine, ask your chemist about help with remembering to take it.
- Take care of yourself. Eat well, exercise regularly and make sure you take any medicines you are prescribed. You can still enjoy a drink, as long as you are sensible about it.
- Keep up your social life. See your friends, keep' going out. If a friend seems to find it hard to know what to say to you, don't let them drift away. Explain that you still need to see them, even if it is awkward at first for them.
- Take care of your mental health. Make sure that you have someone to talk to about your feelings about the illness. If you are depressed or have other worrying feelings or thoughts your doctor may be able to help.
- Be positive. Concentrate on the things you can do instead of things that have become too difficult.
- Tell people that you have a memory problem and don't be embarrassed to ask them to repeat or explain things.
- If you get frustrated when things aren't going well, blame the illness, not yourself.
- Don't be afraid of asking for help and taking it.
- Keeping to a routine can be helpful. You may find it easier to keep track if you have a regular way of doing things and a particular time to do them.
Summary
Write things down.
Keep important things in one place.
Make a routine for yourself.
Look after your body.
Keep up your social life.
Make sure you have someone to talk to.
Concentrate on what you can do.
Tell people you have a memory problem.
Blame the illness, not yourself.
Ask for help.
Section Five: Emotional support
Remember, you are not alone. You don't have to face dementia by yourself. You can find emotional support from all kinds of people?family, friends, professionals and volunteers working with people with dementia, and other people with dementia.
Different people have different reactions to being told that they have dementia. For some people, the first reaction is to tell someone else, perhaps their partner or a daughter or son. Other people keep it to themselves, perhaps because they feel there is no-one they can tell,or because they don't want to upset people they are close to.
It is very important to be able to talk about it. It can be hard at first to know how to start. You may be afraid of other people's reactions. Will they be afraid or feel awkward? Will they support you or reject you?
If you are not sure who you can talk to, speak to someone you aren't close to first of all. They can help you decide who to tell. Perhaps you could talk it over with your doctor, community psychiatric nurse, social worker or someone from your local Alzheimer Scotland Action on Dementia project. And you can call the Dementia Helpline on 0808 808 3000. Calls are free. The Helpline is open 24hours a day. There is always someone to talk to who knows about dementia and can help you think things through and provide you with information.
As well as the support of people close to them, many people find that professional counselling can help them cope better with their diagnosis. Your doctor can help you find a counsellor in your area.
Some people have found great support from other people with dementia. In her book 'Living in the Labyrinth: a Personal Journey Through the Maze of Alzheimer's', Diana Friel McGowin, who has dementia, says, 'I found I was not the only early-diagnosed, early-onset victim? much in need of mutual support. No matter how caring our friends and family members are, WE STILL NEED EACH OTHER?people walking through the same maze as ourselves!'
At present, there are not many groups for people with dementia, so you may not find one ready-made. But you could ask for help to set one up, from Alzheimer Scotland Action on Dementia or your doctor, community psychiatric nurse or social worker.
Summary
Talk to your doctor, nurse or social worker.
Contact your local Alzheimer Scotland Action on Dementia project.
Talk to a counsellor. Ask if there is a support group for people with dementia.
You are not alone. Call the 24-hour Dementia Helpline free on 0808 808 3000
Section Six: Practical help
Your illness means that you will gradually find it more difficult to cope with everyday activities such as shopping, cooking and remembering appointments. But you should keep active. Do as much as you can, with help where necessary.
Don't be embarrassed to ask for help from family, friends and neighbours. Ask them to try to help you to do things rather than just do them for you. Perhaps someone could help you remember appointments by making sure you have them in your diary and phoning you to remind you. If you find you are getting muddled when you go shopping, perhaps you and a neighbour could go at the same time, to help you keep track.
You will be able to get more help as you start to need it. Contact your local social work department to find out what help they can offer you. You will find their number in the phone book under your regional council. A social worker will talk to you to assess your needs. If you have a carer, someone who is helping you or caring for you, the social work department should talk to him or her, too. The social work department must provide you with a written copy ofyour assessment. If you don't think it's right, you can ask them to change it. They should offer you services to meet your needs. For example, some of the things that may help are:
- a home help
- a place at a day centre
- equipment to help you cope and keep safe in the house
- short stays in a residential home to give you or the people you live with a relaxing break.
Ask your doctor to refer you to a community psychiatric nurse (or CPN). They are specialists in helping you with the practical and emotional difficulties that you may face. A CPN can come and visit you regularly to see how you are getting on and to help you get more help when you need it.
Some people with dementia find it hard to accept help at first, but you have a right to help. With help, you can be as independent as you can for as long as possible. Taking help does not mean you are giving up, it means you are facing your difficulties realistically.
It may be particularly hard to take help from outside your family, but
Section Seven: Planning for the future | Work | Driving |Medical care | Living arrangements
It is important that you think about the future and how you wish to arrange your affairs. If you set things in order now, you and your family will know that what happens in the future is what you wanted.
You should start to make your plans as soon as you feel able to do so. If you wait too long, your right to make your own arrangements may be questioned.
If you are still working, your employer cannot legally sack you just for having dementia. However, in time your illness will make you less able to do your job. Eventually, you will need to give up work.
You should discuss with your employer what arrangements they might have for shorter hours, a simpler job or early retirement. If you have an occupational pension, find out how much you will get if you retire early. You may be able to get a lump sum payment. You will probably find it helpful to have someone with you at these discussions?perhaps a friend or someone from your union.
You can find out what benefits you and your family would be entitled to if you stop work. Your local Citizen's Advice Bureau will give you information and advice on benefits.
Your illness will affect your ability to drive. If you have had a diagnosis of dementia, you will probably find that your insurance no longer covers you, so you will have to give up driving. You should write to DVLC, Swansea, SA99 1BNto tell them about your diagnosis.
Many people find giving up driving one of the hardest things to do. You may feel your car is an important part of your independence, and without it, your life may have to change. This can be painful and frustrating.
There may be practical steps you can take to make the loss of your car less distressing.
- Work out how much your car costs, counting the cost of the car, tax, insurance, maintenance and petrol. It can come to a surprisingly high figure, which you can spend on buses, trains and taxis.
- Your local council may have a scheme for cheap or free public transport for people with disabilities. If you are of retirement age, the council may have travel passes for pensioners. You can find out about this from your regional council social work department or transport department.
- Family and friends may be able to offer lifts. Don't be embarrassed to ask; most people will be happy to help. Point out that you have an illness that stops you driving, just as if you were losing your sight.
You may have ideas about what health care you would like to have or not to have in the future. For example, some people have strong views about whether they would want to take part in research, or how much they would want doctors to do if they were terminally ill.
You can write down your wishes in a document sometimes called a 'Living Will'. Living Wills are not legally binding on doctors but they do help the people caring for you to know your wishes.
If you want to make a Living Will, you should talk to your doctor, and to your family and friends. Make sure they know your wishes.
Discuss carefully with your family, if you have one, what you would like to happen if you become unable to live in your own home. Perhaps there is someone who you would like to help take care of you while they are able to. But moving in with someone is not always the best answer for you or for them.
Or perhaps you would prefer your family and friends not to be involved. You might prefer to be cared for in a residential or nursing home if it should become necessary. You may get help with the cost of a residential or nursing home if the social work department has assessed you as needing to live there. Speak to your local Citizen's Advice Bureau, Law Centre or Money Advice Centre about this.
You may like to talk about the different possibilities with someone who is not involved. Speak to your doctor, social worker, nurse or counsellor, or phone the 24-hour Dementia Helpline on 0808 808 3000.
Make sure the people close to you know your wishes. Write them down if you can. Of course, no-one can know the future, and circumstances may change so that what you decide is no longer suitable. But it will help if your wishes are clear.
Summary
Plan for the future as soon as you can.
Think about what you want to do if you can no longer stay in your own home.
If you are working, talk to your employer.
You will probably have to give up driving.
Discuss your plans with family and friends.
Think about what kind of medical care you would prefer in the future.
Section Eight: Financial arrangements | Extra money | Paying bills | Power of attorney | Make a will | Trusts
Dementia will affect your ability to look after your financial affairs. It is important to think about this now so that you can arrange everything the way you want it. Make sure that all your important papers are in order, such as your mortgage, insurance, tax details and bank and building society statements. If you can, go through them with someone you trust.
The booklet 'Dementia: Money and Legal Matters' ?a guide for carers covers these arrangements in more detail. See the end of this booklet for how to get a copy.
There are benefits that you may be entitled to, to help you cope with the extra costs of having dementia. If you are of working age, benefits may help to compensate you if you can no longer work. Your social worker or community psychiatric nurse will advise you on how to apply for them. The DementiaHelpline (0808 808 3000) or your local Citizen's Advice Bureau, Community Law Centre or Money Advice Centre can also advise you on benefits.
Some of the main benefits you might be entitled to include Attendance Allowance, Disability Living Allowance, Income Support, Invalidity Benefit, Council Tax Discount and Benefit and Housing Benefit.
You can save yourself the trouble of remembering to pay bills.
- Ask your bank to set up direct debits and standing orders for all your regular bills such as gas, electricity, rent, and so on.
or
- Ask your bank manager to organise paying any bills for you from your account. This is called a general mandate, and the bank may charge a fee.
You can choose who will look after your financial affairs if you become unable to do it. Ask a solicitor to draw up a power of attorney for you which authorises someone you trust to deal with your money affairs. If you are on a low income, this may be available free or much cheaper than usual. Otherwise, a power of attorney will cost about £50 and will give you and your family peace of mind. Whoever you appoint as your attorney need not take over your affairs as long as you are still capable of doing it yourself, but they must be appointed in advance. It is important that you do this as soon as you can, to make sure that no-one claims later on that you weren't well enough to grant a power of attorney.
You can choose what you would like your attorney to be able to do for you. For example, you might want them to be able to run your bank account, complete your tax returns, sign documents or buy and sell property for you.
It helps if you can discuss who you choose as your attorney with the rest of your family so that they are aware of your wishes. You can choose more than one person to be joint attorneys for you if you like. Or you can choose a solicitor (but he or she will charge fees).
You can change your mind at any time and take away the power of attorney. This is best done by writing to the person or people you chose as your attorney and telling them that they no longer have the authority to act for you. You should also write to your bank or building society to tell them.
Like everyone, you should make a will to make sure that your property and possessions go to the right people when you die. It is very important to draw up your will now, while you are clear about what you want. See a solicitor to help you do this. A simple will costs about £40, or less if you are on a low income.
If you are fairly well off, it might be to your advantage to set up a trust. This might be worthwhile if you own your home or have savings of more than £10,000. A trust can take over your money and property and administer it for your benefit. Trusts can be worded so that the money in them does not count as part of your capital for assessing some benefits. Ask a solicitor about this.
Summary
Put your papers in order.
Find out what benefits you can get.
Get your bills paid for you.
Summary
Give someone you trust a power of attorney so that they can look after your financial affairs if you can no longer do it.
Make a will.
If you are fairly well off, see a solicitor about setting up a trust.
Section Nine: Medical research | Further information for you and your family
There is a great deal of medical research going on at the moment into the causes and possible treatments of the different kinds of dementia. In fact, it is one of the most well-funded areas of research world-wide. At present, however, we do not know the causes, and there is no cure.
Be cautious of newspaper reports of research 'breakthroughs'. These are often exaggerated, so try not to let them raise your hopes until you know the truth. Call the Dementia Helpline on 0808 808 3000 for a realistic assessment of research stories.
Some treatments for Alzheimer's disease are being tested, which look as if they may delay the development of the illness for a few months in some people. But these are unfortunately not a cure. Some of the drugs under trial have side-effects.
For multi-infarct dementia, medication to lower your blood pressure may help reduce the risk of having small strokes.
Information sheets on current research and on what to consider before taking part in research are available from the address at the end of this booklet.
Summary
Some treatments for Alzheimer's disease are being tested but they are not a cure.
Don't believe everything you read about research 'breakthroughs'.
Dementia is an important area of medical research.
Drugs to lower your blood pressure may help delay the progression of multi-infarct dementia.
Further information for you and your family
For further information, or to talk things over with someone who understands, you can call the Dementia Helpline on Freephone 0808 808 3000. The Helpline is open 24 hours a day, every day of the year. Your family and friends can call the Helpline too.
There are several helpful publications, including:
- Coping with Dementia?a Handbook for Carers
- Dementia?Money and Legal Matters
You can get these and other booklets free from the Dementia Helpline on 0808 808 3000. You can also write to Alzheimer Scotland Action on Dementia, 22 Drumsheugh Gardens, Edinburgh EH3 7RN for a free list of publications.