Living with Dementia
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Factsheet Living with dementia Being diagnosed with dementia can come as a shock, even if it was half expected. This factsheet explains more about the different types of dementia and the help available to support and maintain independent living both for you, and your family and carers. Last reviewed: November 2014 Next review date: November 2015 Independent Age provides advice to help people claim benefits, access social care and stay independent at home. Our local volunteers provide friendship visits and calls for lonely older people. To find out how Independent Age can help you, call us FREE on 0800 319 6789 or visit . Our free wise guides and factsheets can be download from the website and ordered by phone or via our online order form. Contents Memory loss and confusion Page 3 What is dementia? Page 4 Types of dementia Page 5 Symptoms of dementia Page 8 Diagnosis of dementia Page 10 What help is available for people with dementia? Page 11 Financial support for people with dementia Page 15 Accommodation Page 17 Caring for someone with dementia Page 20 Practical tips for caring for someone with dementia Page 23 Making decisions for someone who has dementia Page 27 Dementia and the Mental Health Act Page 30 Useful contacts Page 37 Living with dementia - November 2014 2 1 Memory loss and “confusion” Older people with memory loss and dementia are often described as “confused”. Whether or not you have dementia, symptoms of confusion can include: - dizziness - not being able to think as clearly or as quickly as usual - not recognising where you are - feeling tearful and agitated. Confusion can be temporary or permanent. It does not necessarily mean that someone has dementia. What causes confusion? If these symptoms develop in a short space of time they could be caused by a physical illness, such as a chest or urinary infection, or not eating or drinking enough. You should see your GP as soon as possible so that your condition can be diagnosed, treated and brought under control. The symptoms of confusion could also be a result of a reaction to any tablets or medicine you are taking. If you are prescribed any new medication, your GP should check that it will not react with something you are already taking. If you do experience side-effects, speak to your GP immediately. Living with dementia - November 2014 3 2 What is dementia? The term dementia is used to describe conditions that cause the progressive decline of your mental ability. Dementia will often: - affect your ability to remember, learn, think and reason - cause a gradual loss of your social and daily living skills. Sometimes the symptoms of dementia develop slowly and the start of the condition is difficult to pinpoint, while sometimes it can develop suddenly and progress quickly. In either case, the effect on the person with dementia, their family and carers can be very distressing. Good to know Dementia can affect people at any age, but it is more likely to happen the older you get. One in six people over the age of 80 will have some form of dementia. At the moment there is no cure for dementia, although treatments and medication are available that can help slow the development and symptoms of the disease. It is important to remember that dementia is not an inevitable result of old age; most older people will never suffer from any type of dementia. If you or someone you know has been given a diagnosis of dementia which you do not agree with, you should talk to the GP and understand the reasons for this diagnosis, or you can ask for a second opinion. Living with dementia - November 2014 4 3 Types of dementia There are over 800,000 people in the UK who suffer from dementia. It is estimated that by the year 2025 [1], the number will rise to one million dementia sufferers. There are many different causes of dementia, but the most common types and their symptoms are listed below. [1] Alzheimer’s Society estimate Alzheimer’s disease The most common form of dementia is Alzheimer's disease. This is a physical disease that causes brain cells to die, leading to a progressive decline in mental ability. The causes of Alzheimer's disease are not fully understood and are still being researched. It is likely that a combination of factors, including age, genetics, diet and general health affect whether someone gets dementia. The symptoms of Alzheimer's disease vary from one person to another. It often starts with the person becoming more forgetful or having problems finding the right words. They might become worried about change and be unable to make decisions. They may also become more irritable and easily upset. As the disease progresses, their short-term memory may deteriorate and they may become confused about time and place. They might also start to lose their ability to understand other people and make other people understand them. Their personality may appear to change; they may resist help or behave in an unusual way. They also may not be able to carry out basic tasks, such as washing and dressing, and may become dependent on someone else for their care needs. Living with dementia - November 2014 5 There are treatments available for Alzheimer’s disease which may slow down its progress but, as yet, there is no cure. The Alzheimer’s Society (0300 222 11 22, alzheimers.org.uk) can provide further information about treatments and what sort of questions you may wish to ask the consultant. Vascular dementia Vascular dementia is the second most common form of dementia and is caused by damage to the blood vessels that carry oxygen to the brain. It is usually triggered by a major stroke or a series of smaller strokes (referred to as multi-infarct dementia). It is more common in people with a history of circulatory problems or high blood pressure. Multi-infarct dementia usually leaves some of the brain's abilities intact and, while there is no way to repair the damage already done to the brain, medical treatments may slow down or prevent the development of further symptoms. A distinctive characteristic of vascular dementia is that the symptoms are not gradual, but increase in a series of sudden changes. Dementia with Lewy bodies (DLB) This accounts for 10-15% of dementia cases. Like Alzheimer’s, Dementia with Lewy Bodies (DLB) is a physical disease of the brain, which is not fully understood. People who have it will show symptoms usually associated with Alzheimer’s disease, but may have major fluctuations in their abilities, sometimes on a daily basis. They will also typically suffer from symptoms usually associated with Parkinson’s disease (stiffness, tremors and slow Living with dementia - November 2014 6 movements) and experience hallucinations. Diagnosis of DLB is difficult and people are often initially diagnosed as having Alzheimer’s or vascular dementia. The hallucinations or the stiffness and trembling associated with Parkinson’s may help it to be correctly diagnosed. A brain imaging test may also be recommended. It is important that DLB is diagnosed correctly as sufferers can have an adverse reaction to certain types of medication. Other forms of dementia There are rarer cases of dementia that can be caused by other factors, such as damage to specific parts of the brain, other degenerative brain diseases, alcoholism, HIV/AIDS or a head injury. Living with dementia - November 2014 7 4 Symptoms of dementia Although dementia usually develops over a long period of time, not everyone will be affected in the same way - some people may experience a rapid decline in their mental ability. However, dementia caused by Alzheimer's disease can take 10 to 15 years to develop and may only become apparent if the person experiences a trauma, such as moving home, or a bereavement. Dementia symptoms may affect your: - ability to learn new skills, for example, it can make it difficult to learn how to use a new piece of equipment - memory – many people become more forgetful, particularly about the recent past, for example, whether they have taken their medication or not. They may forget faces and names, even of familiar people. - ability to communicate – speech is often affected. People may find it difficult to remember certain words, names of people or objects, express themselves or to understand other people - personality and behaviour – some people experience significant mood swings, for example, they may become suddenly tearful or angry, while others may become withdrawn and delusional and believe things are happening that are not. Others may walk around, but forget what they were going to do - understanding of time and place - some people find that they get lost or end up doing things at the wrong time - mental health - some people with dementia become depressed and this can affect their ability to concentrate and cope with life - personal care – people with severe dementia may find it difficult to complete tasks in the correct order. They may Living with dementia - November 2014 8 need help preparing meals, washing, dressing and going to the toilet - judgement – as the dementia progresses, the person may become less able to make judgements about the risks that they face from hazards. For instance, they might not be able to use the cooker safely but are unaware of this - mobility – as the illness progresses the person’s ability to keep their balance and walk steadily may deteriorate - continence – a person with dementia may not recognise the need to use the toilet. If they have difficulty remembering learnt skills, they may not be able to locate or use the toilet.