For many people, this can be a worrying time – you might be scared about having dementia, and about the impact it may have on those close to you. And while it is true that having dementia can be challenging, there are many ways you can get help, and lots of information to help you make more sense of the experience.
This online booklet explains:-
some of the basic facts about dementia;
gives ideas on where you can get practical and emotional help;
offers advice on planning for the future;
details some strategies which other people have used to cope with dementia.
Finally, it recommends places to go for information and help for people with dementia. Once you have read this booklet, you may want to get in touch with some of these organisations.
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Many older people worry that they may develop dementia.
However, there is a big diference betwen normal forgetfulness,
which happens to all of us at times, and dementia . This
section explains some of the basic facts about dementia, and how you can find out more if you are worried.
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The word dementia is used to describe a number of different conditions that affect the brain. Each of these leads to a decline in mental ability, such as:-
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Most people who develop dementia are over 65, although it does affect some younger people, usually in their forties and fifties (about one in a thousand). One in twenty people over 65 has dementia, and one in five over the age of 85. But while dementia is most common in older people, it is not an inevitable part of ageing – the vast majority of older people stay mentally healthy.
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The most common types of dementia are Alzheimer’s disease and vascular dementia. Although they have similar symptoms, they develop in different ways.
Alzheimer’s disease, which accounts for about 60 per cent of dementia, is linked to changes in the structure of the brain, which causes brain cells to die. It usually starts gradually and progresses at a slow, steady pace.
Vascular dementia happens when a series of small strokes cuts off the blood supply to parts of the brain. Unlike Alzheimer’s disease, it often develops in sudden steps as these strokes happen.
Other, less common, types of dementia include:
Lewy body disease (similar to Alzheimers, although people with Lewy body disease are more likely to experience hallucinations - seeing, hearing, smelling or feeling things that aren’t there – and physical difficulties, such as tremors and falls)
Pick’s disease (also known as frontal lobe dementia, referring to the part of the brain affected)
Huntingdon’s disease or chorea (a rare form of dementia that usually develops at a younger age)
Creutzfeld Jakob disease (the human form of ‘mad cow disease’, which is also very rare and thought to be linked to eating infected beef ).
Dementia can also happen as a result of:
Parkinson’s disease
AIDS
a brain tumour
head injuries
alcohol misuse.
Some of these can be treated, which is one reason why it is important to get medical help if you think you may have dementia.
However, this booklet looks at the most common forms of dementia, which are not currently curable.
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The most common early sign of dementia is a loss of short-term memory – you may sometimes forget things you have just said or done, even though you clearly remember things that happened a long time ago.
Other signs might include:
losing interest in things you used to enjoy
finding it difficult to do everyday things you previously took in your stride
confusion
sleeping badly or at unusual times
difficulty with making decisions or feelings of depression.
Some people with early dementia say they know something is wrong, but can’t identify exactly what it is. Others say that they feel like they are living under a cloud.
People around you may experience some things you say or do as ‘odd’ or ‘uncharacteristic’. However, just because you are having some symptoms – forgetfulness, say, or low mood – this does not necessarily mean you have dementia.
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Unfortunately, the most common forms of dementia can’t be cured. Drugs help reduce the effects in the short term, but they don’t work for everyone. But people often live with dementia for many years, and it is not usually direct cause of death. And while there is no cure for dementia, there are lots of ways of coping. Some of these are discussed in this page.
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The thought that you may have dementia can be frightening. But
it’s usually much better to confront th at fear, and try to be
practical about dementia, if you can.
Dementia-like symptoms are sometimes caused by other treatable conditions, such as depression, thyroid problems or urinary tract infections, so it is always worth seeking medical advice. If you do have dementia, it will give you and those you love a chance to plan for the future and get the help and support you will need.
The first thing to do if you think you have dementia is contact your GP. A good GP will be able to discuss your concerns, carry out a full health check, including an examination of your memory, and, if necessary, refer you to specialists for further help. It can be a good idea to take someone you trust with you when you go to the doctor – they can support you in explaining your worries, and perhaps write down notes of the plan agreed by you and your
doctor. Some people also find it helps to write down questions for the doctor beforehand, so that they do not forget them when they are in the surgery.
It can take a long time to make a firm diagnosis, so you may need to be patient. Some doctors are reluctant to diagnose dementia until they can be totally sure the symptoms are not due to other causes. But any doctor should listen to your concerns
be prepared to investigate them fully (including making a referral to a specialist if necessary), and agree to review your situation regularly. They may also refer you to a memory clinic, where a team of experts can give you practical and emotional support.
Most people with dementia say it is important to them to know as much as possible about their condition, and you can insist that your doctor keeps you fully informed. If your GP is not helping as you would like, you do have the right to change doctor. And if you can’t find a new GP to take you on, your primary care trust must help you – contact NHS Direct on 0845 46 47 for more details.
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You may sometimes forget to do things, repeat tasks you have already completed, or do, say and see things in a way that other people might think is unusual or ‘odd’. You may find it harder to keep up with conversations, make decisions, and express how
you feel.
You might have trouble remembering people’s names, dates or everyday words, or become less physically co-ordinated. Over time, dementia can reduce your ability to carry out everyday tasks, such as:
washing
going to the toilet
getting dressed
cooking
cleaning.
However, not everyone with dementia will have all of these difficulties, and every person will experience them in their own way.
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It varies from person to person. In many cases, the progression is slow, giving you time to adjust to changes in your abilities, although symptoms will probably vary from day to day.
In the early stages of dementia, many people continue to live fairly independent lives. Problems are likely to become more severe as
the illness progresses, and later on, people can become severely affected, both physically and mentally.
People with later stage dementia often experience severe memory loss, are sometimes unable to:
recognise familiar people, places or objects
may have problems with basic things like walking, talking or eating.
By this stage, they may become completely dependent on others to care for them. But it is important to remember that many people with dementia live happy and fulfilling lives for years after their dementia has been diagnosed.
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Many people find it difficult to tell those around them that they have dementia. Some feel they would be judged or overprotected if other people knew about their dementia, while others say that that they don’t want people to worry about them.
Some don’t want to ‘rock the boat’, preferring to keep things as ‘normal’ as possible. However, it is usually best to tell people you love about having dementia. Being honest increases the chances of getting as much support as possible, while those people around you are more likely to be understanding and helpful if they know what is going on. You could also tell them about your fears, and explain carefully how they can best be helpful.
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Yes. People experience many different emotions when they find out they have dementia. These can range from shock and disbelief to fear, anger, sadness and despair. It can take time to adjust to the idea of having dementia, and while difficult feelings are not pleasant, they are normal.
If you are finding it hard to cope, speak to your GP. He or she may be able to refer you to a:
community nurse
counsellor
psychologist.
They can help you work through your feelings.
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Having dementia does not mean that you are any less an adult. You have a right to be treated with respect and dignity, and to be listened to and understood.
However, sometimes people close to someone with dementia may try to overprotect them or assume that they are less capable than they really are. If this happens, talk to them about how you are feeling, and how you would like them to help you live with dementia, Becoming A Carer, which explains more about how to offer care and relate to people with dementia.
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It is important that, as far as possible, you continue to carry out daily tasks and do things which you have always enjoyed. Don’t give up on life – even if you have decided to stop doing some things that used to occupy you (such as work), you may be able use your time to learn new skills, or take on volunteer work.
It’s important to stay positive and to look after yourself – by taking regular exercise for example, and eating healthily. Having dementia may change what you can manage over time, but you can still choose to make the most of and enjoy what you can do.
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There are many different kinds of help available for people with dementia. It can be difficult to depend on others, or to ask for support, especially if you are used to taking full responsibility for yourself. But asking for help when you need it can be a sign of strength, and it might be easier to live independently when you have the support of others.
Many people with dementia ask their friends and family to help them – and indeed, some report that doing this can bring them closer together.
You can ask your GP to monitor your health on a regular basis, and your local social services department may be able to provide help around the home – such as with laundry, meals and safety aids – and a place to go during the day, such as a day centre.
Several voluntary organisations offer practical help:
Some also run helplines you can call for advice, support and help. For example, you can call the:
You might also find it helpful to join a support group for people with dementia. Support groups are places where you can:
Having dementia can bring up distressing feelings, and most people find it an enormous relief to be able to talk about their experiences with other people who know what they are going through.
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While it can be a difficult subject to discuss, people with dementia often say how important it is to make plans for the future. Having definite plans for your care arrangements, medical treatments and finances can bring peace of mind.
Also, in the early stages of dementia, it is usually possible to be fully involved in the planning process, whereas later on this may not be possible. One option to consider is making an advance directive (also known as a ‘living will’). This is a statement that sets out what you would like to happen if you are unable to make decisions in the future.
This could include your preferences about:
nursing home care
what treatments you do and don’t want
whether you want to be resuscitated in an emergency
who you would like to make decisions on your behalf.
Giving a copy of this plan to everyone involved (including your GP and solicitor) can help reassure you that your wishes will be respected. If you need help with writing an advance directive, a solicitor will be able to advise you.
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If you are working, and wish to continue, it is vital to inform your employers of the situation – they may be able to help you to carry on, perhaps with flexible hours, or with different responsibilities.
Sometimes employers can get financial support to help keep you in your job. The Disability Employment Advisor at your job centre
can advise you about this. If you are unsure about how your employer will react, it may be worth seeking advice from one of the specialist organisations that help people with dementia.
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It may be sensible to seek legal advice on choosing someone to take charge of your financial affairs when you are no longer able to do it yourself.
As is the case with everyone – whether or not they have dementia - it is vital that you make a will, so that your wishes are respected when you die.
A solicitor can help with granting power of attorney and making a will. If you drive, you have a responsibility to inform the Drivers and Vehicles Licensing Authority of your condition, contact them on 0870 6000 301.
Having dementia does not necessarily mean you will have to stop driving right away, although there will probably come a time when you will no longer be able to drive. Until then, a license can be issued on the understanding that it will be reviewed every year.
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Social service departments can provide:
In some areas there are day care centres you can attend. There are some organisations, such as:
These organisations may be able to help with nursing care or providing safety equipment to fit around the house. Social services may also be able to advise on home adaptations.
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Having dementia can have a big effect on your income, especially if you have had to give up work. If this happens, you may be entitled to welfare or disability benefits, such as Attendance Allowance.
To find out about benefits call:-
on 0800 88 22 00
Your social services office will also be able to assess you for ability to pay for the professional support they provide.
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There are several drug treatments that are thought to relieve some of the symptoms of Alzheimer’s disease, although they do not work for everyone, and they are not a cure.
The most common of these are known as cholinesterase inhibitors, and include the drugs:
The agency responsible for recommending which treatments doctors should prescribe, NICE, publishes guidance on the drugs that can be prescribed to relieve the symptoms of dementia. The guidance varies depending on whether someone has mild, moderate or severe dementia.
Your GP or a specialist will advise you on which drugs may be suitable for you. People with Vascular dementia may be given drugs to thin the blood or correct irregular heartbeat, which may help reduce the risk of further strokes.
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Your GP will also remain responsible for your general health, and should review your condition regularly.
Your GP may also refer you for specialist help when you need it. Such help might come from a:
psychiatrist
community nurse
social worker
physiotherapist
clinical psychologist
occupational therapist
continence advisor
and might involve:
practical nursing support
advice on coping with dementia and maintaining an active lifestyle
helping protect against other illnesses
dietary planning or counselling.
Some people with dementia are helped by reminiscence therapy, in which they are encouraged to recall events from the past. Others find complementary therapies such as acupuncture and aromatherapy useful.
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There may come a time when living at home becomes too difficult, and you may need to move to a residential home, either as a temporary measure or permanently.
This is likely to be a difficult decision for you and those around you, and issues such as payment can be complex, so it is important to consider it well in advance – especially so you can have a say in how and where you might be cared for.
Your local social services office will be able to advise on care homes in your area, and on whether you can get financial support.
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Your local social services have a duty to assess you for suitability and ability to pay for services such as day-care and home help, and to provide or pay for any help agreed on in the assessment.
To arrange an assessment, call your local council and ask to be put through to the social services department, who will be able to advise you on arranging an assessment (if you live in Scotland, call your local council and ask for the social work department; if you live in Northern Ireland, contact your local Health And Social Services Trust).
The assessment is likely to be carried out by a social worker who will be able to discuss your needs at length, and who will help work out what kind of support will be most helpful to you. This should be written up in the form of a care plan, and you should get a copy for your own records.
Care plans should be reviewed regularly, so you should ask when you will be due for further assessment. If you have a carer, they also have a right to a separate assessment for services that might help them.
People with dementia have highlighted such positive factors as:
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