What is Dementia? Part 3

Are there any legal issues that will need attention?
It may be necessary for the person with dementia to make an Enduring Power of Attorney – this is a legal way of choosing someone to take charge of their financial affairs when they are no longer able to do it themselves. (NB In 2007, Enduring Powers of Attorney will be replaced by Lasting Powers Of Attorney, which will also cover some personal welfare as well as financial matters). And of course, it is vital that the person with dementia makes a will, so that their wishes are respected when they die.

A solicitor can help with making an Enduring/Lasting Power of Attorney and a will. If they drive, people with dementia have a responsibility to inform the DVLA (Drivers and Vehicles Licensing Authority) of their condition (contact them on 0870 6000 301). Having dementia does not necessarily mean a person will have to stop driving right away, although there will come a time when they will no longer be able to drive. Until then, a license can be issued on the understanding that it will be reviewed every year.

What practical help can I get with caring?
Some people feel it’s their duty to provide care alone, but there is professional help available – for example, social service departments can provide home care services, help with laundry and meals, and advice about safety aids (see Accessing Services).
In some areas there are day care centres you and/or the person with dementia can attend. Caring for someone with dementia can be exhausting, so it is vital that you take breaks and get as much help and support as possible (see part four, Looking After Yourself ).

It can also be stimulating for people with dementia to socialise with others and enjoy a change of environment and activities. There are some organisations, such as Crossroads, The British Red Cross and For Dementia (see part 5 – Useful Contacts), which 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.

Will I be able to get financial help while I am caring?
Caring for someone with dementia can have a big effect on your income, especially if you or they have had to give up work. If this happens, you may both be entitled to welfare or disability benefits, such as attendance allowance or the carer’s allowance.
To find out about benefits, call the Benefit Enquiry Line for people with disabilities on 0800 88 22 00, or contact your local Citizens Advice Bureau (see part five, Useful Contacts). Your social services office will also be able to assess you for ability to pay for the professional support they provide (see Accessing Services, below).

What medical treatments will be prescribed to help the person I care for?
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 Aricept, Exelon, and Reminyl. However, the body responsible for treatment recommendations, NICE, has been reviewing its guidance about whether these drugs should be prescribed free on the NHS, and a decision is expected in Autumn 2005.

In the meantime, these drugs can be prescribed for people with mild to moderate dementia, and you should speak to your GP initially who may refer you to a specialist who can advise about whether they may be suitable for the personyou care for. 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.

What is Dementia? Part 2

PLANNING FOR THE FUTURE
Once someone has been diagnosed with dementia , they and their carers usually need to prepare for significant changes in their lives . This section explains what kind of plans you might need to make , and tells you about the places you can go for help .

How far do we need to plan ahead?
Dementia often progresses slowly, and many people with a diagnosis live happy and fulfilling lives for a long time. But, whilst it can be a difficult subject to discuss, carers often say how important it is to make plans for the future with the person who has dementia. In the early stages, it is usually possible for the person to be fully involved, whereas later on this may not be possible.
One useful option is for the person with dementia to make an advance directive (also known as a ‘living will’), which is a statement that sets out what they would like to happen if they are unable to make decisions in the future. This could include their preferences about nursing home care, what treatments they do and don’t want, whether they want to be resuscitated in an emergency, and who they would like to make decisions on their behalf. Giving a copy of this plan to everyone involved (including the person’s doctor) may help reassure the person that their wishes will be respected. If the person with dementia needs help with writing an advance directive, a solicitor will be able to advise them.

Should I tell my employer about the diagnosis?
If you are working, and wish to continue, it is a good idea to inform your employer of the situation – they may be able to help you to carry on, perhaps with flexible hours. If you are unsure how your employer will react, it might be worth seeking advice from a carers’ organisation. Some of these are listed at the end of this booklet (see section 6 – Useful Contacts).

What is Dementia? Part 1

What is dementia?
The word dementia is used to describe a number of different conditions that affect the brain. Each of these conditions leads to a progressive decline in mental ability, such as memory loss, confusion, and problems with speech, concentration, thinking and perception.

Who is likely to develop dementia?
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 it affects one in five people over the age of 85. While dementia is most common in older people, it is not an inevitable part of ageing – the vast majority of older people remain mentally healthy.

What forms of dementia are there?
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 characterised by 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 occurs when a series of small strokes cut 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 Alzheimer’s, 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); and Creutzfeldt-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 occur as a result of Parkinson’s disease, AIDS, a brain tumour, head injuries or alcohol misuse. Some of these rarer kinds of dementia can be treated – however, this booklet mainly looks at the most common forms, which are not currently curable (see Can dementia be treated?)

What are the early symptoms of dementia?
The most common early sign is a loss of short-term memory – the person forgets things they have just said or done, even though they may clearly remember things that happened a long time ago. Sometimes people with early dementia say they feel they know something is wrong, but can’t identify exactly what it is.
Other symptoms vary, but tend to be noticed by others as ‘odd’ or ‘uncharacteristic’ behaviour, such as loss of interest in things the person enjoys, confusion, loss of skills and ability to do things they previously took in their stride, irregular sleeping patterns, reduced decision-making ability or mood swings.

Does dementia run in families?
Many people worry that if a relative of theirs has dementia, they will one day develop it too. Research suggests that there may be a genetic component to dementia, but that in most cases there is no clear family link. Instead, experts think that there may be a range of factors (including lifestyle, age, genetics, education and environment) which influence susceptibility to dementia. One exception is in families where several people have developed Alzheimer’s disease before the age of 60, where a clear genetic connection, linked to faulty chromosomes, has been shown.

Can dementia be treated?
Unfortunately, the most common types of dementia cannot be cured. Certain drugs may help reduce symptoms in the short term, although they do not work for everyone. However, dementia is not usually a direct cause of death, and people may live with the condition for many years. There are lots of ways of coping with dementia, and some of these are discussed in this blog.