CareDirect (Wales) Ltd

Dementia

If you, or a friend or relative, have been diagnosed with dementia, you may be feeling anxious or confused. You may not know what dementia is. This fact sheet should help answer some of your questions.

The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. These include Alzheimer's disease and sometimes as a result of a stroke.

Dementia is progressive, which means the symptoms will gradually get worse. How fast dementia progresses will depend on the individual. Each person is unique and will experience dementia in their own way.

Symptoms of dementia include:

• Loss of memory - for example, forgetting the way home from the shops, or being unable to remember names and places, or what happened earlier the same day.
• Mood changes - particularly as parts of the brain that control emotion are affected by disease. People with dementia may also feel sad, frightened or angry about what is happening to them.
• Communication problems - a decline in the ability to talk, read and write.

In the later stages of dementia, the person affected will have problems carrying out everyday tasks, and will become increasingly dependent on other people.

What causes dementia?

There are several diseases and conditions that cause dementia. These include:

• Alzheimer's disease - The most common cause of dementia. During the course of the disease the chemistry and structure of the brain changes, leading to the death of brain cells
• Vascular disease - The brain relies on a network of vessels to bring it oxygen-bearing blood. If the oxygen supply to the brain fails, brain cells are likely to die and this can cause the symptoms of vascular dementia. These symptoms can occur either suddenly, following a stroke, or over time through a series of small strokes
• Dementia with Lewy bodies - This form of dementia gets its name from tiny spherical structures that develop inside nerve cells. Their presence in the brain leads to the degeneration of brain tissue. Memory, concentration and language skills are affected. This form of dementia shares some characteristics with Parkinson's disease.

Rarer causes of dementia

There are many other rarer diseases that cause dementia, including progressive supranuclear palsy, Korsakoff's syndrome, Binswanger's disease, HIV and AIDS, and Creutzfeldt-Jakob disease (CJD), People with multiple sclerosis, motor neurone disease, Parkinson's disease and Huntington's disease may also be more likely to develop dementia.

Mild cognitive impairment

Some individuals may have difficulty remembering to do things, but a doctor may feel that the symptoms are not severe enough to warrant the diagnosis of Alzheimer's disease or another type of dementia. When this condition occurs, some doctors will use the term 'mild cognitive impairment' (MCI). Recent research has shown that a small number of individuals with MCI have an increased risk of progressing to Alzheimer's disease. However, the conversion rate from MCI to Alzheimer's is small (10-15 per cent), so a diagnosis of MCI does not always mean that the person will go on to develop Alzheimer's.

Who gets dementia?

• There are about 700,000 people in the UK with dementia.
• Dementia mainly affects older people. However, it can affect younger people: there are 15,000 people in the UK under the age of 65 who have dementia.
• Dementia can affect men and women.
• Scientists are investigating the genetic background to dementia. It does appear that in a few rare cases the diseases that cause dementia can be inherited. Some people with a particular genetic make-up have a higher risk than others of developing dementia.

Can dementia be cured?

Most forms of dementia cannot be cured, although research is continuing into developing drugs, vaccines and treatments. Drugs have been developed that can temporarily alleviate some of the symptoms of some types of dementia. These drugs are known as acetylcholinesterase inhibitors.

How can I tell if I have dementia?

Many people fear they have dementia, particularly if they think that their memory is getting worse. Becoming forgetful does not necessarily mean that you have dementia: memory loss can be an effect of ageing, and it can also be a sign of stress or depression. In rare cases, dementia-like symptoms can be caused by vitamin deficiencies and/or a brain tumour. If you are worried about yourself, or someone close to you, it is worth discussing your concerns with your GP.

Diagnosing dementia

It is very important to get a proper diagnosis. A diagnosis will help the doctor rule out any illnesses that might have similar symptoms to dementia, including depression. Having a diagnosis may also mean it is possible to be prescribed drugs for Alzheimer's disease. Whether you are someone with dementia or a carer, a diagnosis can help you prepare and plan for the future.

Dementia can be diagnosed by a doctor, either a GP or a specialist. The specialist may be a geriatrician (a doctor specialising in the care of older people), a neurologist (someone who concentrates on diseases of the nervous system) or a psychiatrist (a mental health specialist). The doctor may carry out a number of tests. These are designed to test the person's memory and their ability to perform daily tasks.

Can dementia be prevented?

At present, we are not sure what causes most of the diseases that lead to dementia. This means it is difficult to be sure what we can do to prevent dementia itself. However, the evidence seems to indicate that a healthy diet and lifestyle may help protect against dementia. In particular, not smoking, exercising regularly, avoiding fatty foods and keeping mentally active into old age may help to reduce the risk of developing vascular dementia and Alzheimer's disease

For individuals, dementia can be devastating. Bit by bit it takes away people’s ability to do everyday things. They lose the ability to make decisions about their lives. They become reliant on others. Families have to provide more and more support and care. There is no cure for dementia, and treatment is limited.

Dementia is a major public health issue in Wales. Approximately 42,000 people in Wales have dementia. It is most common among older people; dementia affects one in twenty over the age of 65 and one in five over the age of 80. As life expectancy increases, there will be more older people and so more people with dementia

“Alzheimer’s Society”

Maintaining Dignity

The person with dementia is an individual and should be treated with respect and dignity. We recognise and train our Care Workers to understand that the Service User they are caring for is an individual with feelings. Dementia affects people in different ways. In the early stages of the disease, the person may be aware that they are struggling with everyday tasks they once found easy.

Establishing Routines

A routine decreases the decisions our Care Workers need to make and can provide security for the person with dementia. Keeping a routine can also help prompt the person into remembering what they are meant to be doing, bringing order and structure to confused daily life.

Supporting Independence

The person with dementia should be encouraged to remain independent for as long as possible, this can help to maintain their self-respect. If the person likes going shopping on their own and can still go out and return home without getting lost, we encourage them to do so. If this not a viable option we will encourage the Service User to do their own shopping with minimal assistance from our Care Workers, ensuring the Service Users safety at all times.

Avoiding Confrontation

Any type of conflict causes unnecessary stress to the person with dementia. Due to the nature of the illness, people with dementia will invariably forget or deny they have done something wrong or will behave badly. Our Care Workers avoid drawing attention to failures and will maintain a calm composure. If the person with dementia does not know they have done something wrong, they will automatically be defensive if confronted. This will only upset them and can make the situation worse. It is important that we don't forget that this is a problem caused by the illness.

Simplifying Tasks

Avoid confusion and stress by keeping things simple. We try to make things as simple as possible for our Service Users with Dementia. It is important not to offer too many choices, as this may confuse and upset them. For example, in the early stages of the disease, they may be able to dress themselves. But, as the disease progresses, there will be a need to guide or assist them and, eventually, clothe them.

Similarly with eating or washing, the Service User may not recall how to do these things. We will then need to simplify these daily tasks. On-going assessments help to guide us on how and when to deal with these situations.

Having to simplify daily routines can be very frustrating for all concerned. Remember it is not the person’s fault, but an effect of the dementia.

Improving Safety

As dementia progresses, loss of physical coordination and memory increases the chance of injury Common hazards include loose or worn carpets, polished floors, broken or loose stair railings, trailing electrical cables and clutter. Trying to avoid accidents is our main goal, and if anything can be moved or made safer, then we ensure it is done.

We make sure, through initial and on-going risk assessments that the Service Users home is as safe as possible for both Service User and Care Workers. An initial assessment can take quite a while to work through, our Service Users safety is of paramount importance to us, so we ensure every situation and area of the Service Users home is carefully screened, and any potential hazards are removed or dealt with before Care commences.

Keeping active

Keeping active helps enhance dignity, self-worth and maintains physical and mental capabilities.

Some planned activities can enhance a person's sense of dignity and self-worth by giving purpose and meaning to life, as well as maintaining their existing physical and mental capabilities.

A person may gain satisfaction from using skills related to a previous occupation or hobby, for example, gardening or housekeeping.

Consider taking daily walks with the person with dementia. These will keep them fit and also provide plenty of stimulation for conversation. Physical activity may also help a person to sleep better at night.

As the disease progresses it will be harder to keep both the person's mind and body active, and his or her likes, dislikes and abilities may change over time. This will require us, the caregiver, to be observant and flexible in planning activities.

Communicating

People whose language becomes impaired rely more on other senses, such as touch and sight.

Communication becomes increasingly difficult as the disease progresses. It may be helpful if you:

• Make sure the person's senses - such as eyesight and hearing - are not impaired. For example, spectacles may no longer be of the right prescription, or a hearing aid may not function properly.
• Speak clearly, slowly, face to face and at eye level.
• Pay attention to the person's body language - people whose language is impaired communicate through nonverbal means.
• Be aware of your own body language.
• Find out what combination of word reminders / prompting words, guidance and demonstration is needed to communicate effectively with the person
• Make sure you have the person's attention before speaking

Memory aids

One of the main problems with dementia is the failure of short term memory. This means that people can forget what has just happened to them. For example, they may forget that they have just eaten lunch and may ask for lunch again.

A useful way of helping someone cope with memory loss is to create personalised 'memory joggers', such as message boards, handy lists and instruction sheets.

Research suggests that gently encouraging a person with dementia to use their brain may help them. Make sure that he or she is not overwhelmed by mental exercises such as reading, playing games, painting - which could precipitate a crisis as the person realises that he or she can no longer do simple things. With this limitation in mind, there is probably no harm, and possibly some benefit, in maintaining an environment that provides stimulation.

The loss of short-term memory can be very distressing. Rather than reminding people with dementia of what they have just done, it may be more useful to try and enjoy things together at the time of doing them.

Memory aids will not be so useful in the later stages of dementia

Know your limits

Dementia not only affects the person with dementia, it affects the entire family. The greatest burden is placed on the caregiver. The personal and emotional stresses of caring for a person with dementia are enormous and you need to plan ways of coping with the disease for the future.

Understanding your emotions will help you successfully cope with the person's problems as well as your own. You are an important person in the life of the person with dementia. Without you the person would be lost. This is why it is essential to take care of yourself.

Most people will come to realise how much they can take before caring becomes too demanding. If your situation is too much to bear, take action, seek additional support, and call for help to prevent or avoid a crisis.

For more information on ways we may be able to help you with coping with someone with dementia please see our services page and contact details above. One of our trained staff will be more than happy to talk you through options available, or If you prefer, arrangements can be made for one of our senior staff members to visit you in the comfort of your own home.