Dementia. Information for service users and carers. RDaSH leading the way with care

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1 Dementia Information for service users and carers RDaSH leading the way with care

2 What is Dementia is a term that is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions, causing deterioration of brain function. This results in loss of memory, reduced language skills, impaired reasoning and loss of daily living skills. Dementia is progressive, which means symptoms will get worse over a period of time. The speed of the deterioration is different for each person. Who gets? Dementia affects both men and women, usually older people, and becomes more common with increasing age. After the age of 65, about one in 20 people develop. About one in five people over the age of 80 develop. Dementia is not a normal part of ageing. It is also different from the mild forgetfulness that is common in many older people. Although is usually associated with the older age group, young people too can develop it. What causes? There are several diseases and conditions that cause, some of which are described in this booklet. Alzheimer s Disease This is the most common cause and accounts for about six in ten cases of. With Alzheimer s Disease the brain shrinks and the number of nerve fibres in the brain gradually reduces. The amount of some brain chemicals (neuro transmitters) is also reduced, and in particular, one called acetylcholine. These chemicals help send messages between brain cells. Tiny deposits or plaques also form throughout the brain. 2 Caring for someone with

3 It is not known why these changes in the brain occur or exactly how they cause. There is no way of predicting who will develop Alzheimer s Disease; it is not hereditary and anyone may develop it. Vascular This causes about two in every ten cases of and is due to problems with the small blood vessels in the brain. The most common type is called multi-infarct. In effect, this is like having lots of tiny strokes throughout the thinking part of the brain. A stroke is when a blood vessel blocks and stops the blood getting past, so the particular section of the brain supplied by that blood vessel is damaged or dies. As each infarct occurs, some more brain tissue is damaged and so the mental ability gradually declines. The risk of developing this type of is increased by the same things that increase the risk of stroke, for example high blood pressure, smoking, high cholesterol levels and lack of exercise. Dementia with Lewy Bodies This form of gets its name from tiny spherical structures that develop inside nerve cells. Their presence inside the brain leads to the degeneration of brain tissue. Memory, concentration and language skills are affected, and this form of shares some characteristics with Parkinson s Disease. Other causes of There are lots of different diseases that can cause, however many are rare and in many, the is just part of other problems and symptoms. 3

4 In most cases, the cannot be prevented or reversed. In some disorders, can be prevented or stopped from getting worse, for example caused by alcohol abuse or infections such as syphilis, both of which can be treated. Mild cognitive impairment Some people 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. In this case, some doctors will use the term mild cognitive impairment (MCI). Recent research has shown that a small number of people, approximately ten to 15 per cent diagnosed with MCI have an increased risk of progressing to Alzheimer s Disease. The symptoms of The symptoms of all types of are similar and may include the following: Memory loss As a rule for people with, the most recent events are the first forgotten, for example a person with early stage might go to the shops and then cannot remember what they went for. It is common for people with to misplace objects, forget important dates or events and ask for the same information over and over. For many people with, events of their past childhood and early life are often remembered well, although this may also be affected if the is severe. 4 Caring for someone with

5 Challenges in planning or solving problems Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe, managing a budget or keeping track of monthly bills. People with often have difficulty concentrating and take much longer to do things than they did before. Difficulty completing familiar tasks People with often find it hard to complete daily tasks. Some people may have trouble driving to a familiar location, using the oven or microwave, or remembering the rules of a favourite game. Confusion with time or place People with can easily lose track of dates, seasons and the passage of time. They may have difficulty understanding something if it is not happening immediately. Even when in a familiar place, they may sometimes forget where they are or how they got there. Trouble with visual images and spatial relationships Some people with may have difficulty reading, judging distances and determining colour or contrast. They may have changes of perception, for example they may pass a mirror and think somebody else is in the room, not recognising their own reflection. People with can find it hard to judge the number of steps when going upstairs or downstairs, to position themselves correctly, or to know when to sit down / stand up. Language difficulties People with may have trouble following or joining a conversation. They 5

6 may stop in the middle of a conversation and have no idea how to continue, or they may repeat themselves. They may struggle with vocabulary and have problems finding the right word, or call things by the wrong name for example calling a watch a hand clock. Misplacing items A person with may put useful and everyday objects in strange places, for example a toothbrush under the bed, food under the pillow or a purse in the oven. They may be unable to go back over their steps to find the items and can sometimes accuse others of stealing them. This may occur more frequently over time. Decreased or poor judgment People with may experience changes in judgment or decision making. They use poor judgment when dealing with money, for example giving large amounts to telemarketers, sending money to every charitable organisation that contacts them or giving out personal information to strangers. Withdrawal from social activities A person with may stop being involved with hobbies, social activities and sports. They may have trouble keeping up with a favourite sports team or remembering how to enjoy a favourite hobby. They may also avoid social situations because of changes they have experienced which have left them feeling frightened, confused or embarrassed. Changes in mood and personality People with may show subtle personality changes. They may become more emotional, or appear depressed or anxious. 6 Caring for someone with

7 They can become confused and suspicious, changing from being happy and pleasant to angry and accusatory in a matter of seconds. Some people may appear more flat and lacking in emotion and show little interest in topics about which they were previously enthusiastic. Lack of concentration A person with can often be easily distracted and may have an inability to focus on any task for a period of time. An example of this is often found by family members when they come to visit and find mail and newspapers piled up unattended or unopened on a chair. Often the mail will include several late payment notices or threats to disconnect services. Self care problems People with often pay less attention to their personal grooming or cleanliness. They may forget to wash or change their clothes. Apathy A noticeable symptom of in many people is apathy, where a person shows little or no interest in enjoying or participating in life. They seem to lose interest in life; a normally jovial and active person can often be found sitting in front of the television or staring out of the window for hours, or a once meticulous housekeeper suddenly allows pets on to the furniture, or leaves the sink full of dirty pots. How does progress? Alzheimer s Disease Dementia symptoms tend to develop slowly, often over several years. In the early stages of the disease, many people with mild cope with just a small amount of support and care. As the disease progresses to the moderate stages, more care is usually needed. 7

8 Generally, someone with Alzheimer s Disease, takes approximately seven to ten years to go from the first signs of memory problems to being severely affected, and ultimately to die due to frailty of body and mind. Health care professionals sometimes discuss stages, which describes how a person s abilities change from normal function to the advanced stages of Alzheimer s Disease. The following table can only provide a rough guide to the disease progression because: Symptoms can appear earlier or later than indicated or not at all Stages may overlap; the person needing help with some tasks but not others Symptoms can appear then vanish, while others worsen over time. 8 Caring for someone with Vascular Some people with vascular find that symptoms remain stable for quite some time and then suddenly decline as the result of another stroke. Other people may experience a more gradual decline. It is sometimes quite difficult to determine whether people have Alzheimer s Disease or vascular and it is quite possible for people to be affected by both. Dementia with Lewy Bodies Fifty per cent or more of people affected by this kind of also develop signs and symptoms of Parkinson s Disease, such as slowness of movement, stiffness and tremor. They tend to be more prone to falls and may also have difficulty judging distances. People with this type of also commonly experience visual hallucinations. They show a marked fluctuation in their abilities from day to day

9 and sometimes even during the course of a single day. However, in the later stages, the symptoms are often very similar to those experienced by people with Alzheimer s Disease. Remember: Everyone is an individual and the symptoms displayed and the progression of those symptoms can vary greatly. Diagnosis Stage Signs and Symptoms No No No 1 (no cognitive decline) 2 (age associated memory impairment) 3 (mild cognitive impairment) In this stage the person functions normally, has no memory loss and is mentally healthy. People with no would be considered to be in Stage 1. This stage is used to describe normal forgetfulness associated with ageing, for example, forgetting names and familiar words or the location of everyday objects. Symptoms are not evident to doctors, family or friends. Doctors may be able to detect problems in memory or concentration. This stage includes noticeable problems in expressing the right word or name of an object, trouble remembering names when introduced to new people, forgetting information that has just been given and having increasing trouble with planning or organising work. Early stage 4 (mild ) This stage includes difficulty concentrating, decreased memory of recent events and difficulty managing finances or travelling alone to new locations. People have trouble completing complex tasks efficiently and can be forgetful about their own personal history. They may be in denial about their symptoms and can become moody and start withdrawing from family or friends because socialisation becomes difficult. At this stage, doctors can detect clear cognitive problems in several areas. 9

10 Diagnosis Stage Signs and Symptoms Mild stage Mild stage Late stage 5 (moderate ) 6 (moderately severe ) 7 (severe ) People in this stage have major memory problems and need some help to complete their daily activities such as dressing, bathing and preparing meals. Memory loss is more noticeable and may include major relevant aspects of current lives, for example people may not remember their address or telephone number and be confused about where they are or what day it is. Most people in this stage require extensive assistance to carry out daily activities. Without help to dress, they may put pyjamas over daytime clothes, or shoes on the wrong feet. They need help with toileting and incontinence can be a problem at this stage. They start to forget the names of close family members and have very little memory of recent events. Many people at this stage can remember only sketchy details of earlier life. There can be major changes in sleep patterns, sleeping during the day and becoming restless at night, sometimes wandering and getting lost. There are often major personality and behaviour changes such as delusions (for example, believing their carer is an impostor) or compulsive, repetitive behaviour like hand-wringing or tissue folding and shredding. Anxiety and agitation may occur regularly. People in this final stage of the disease lose the ability to respond to their environment, to carry on a conversation and eventually, to control movement. They may only be able to say odd words or phrases. They will need much more help with their daily personal care, including eating, dressing and using the toilet. They often lose the ability to walk and cannot sit without support. Reflexes become abnormal, muscles grow rigid and swallowing can be impaired. 10 Caring for someone with

11 Treatment for Alzheimer s Disease There is currently no cure for Alzheimer s Disease, however some drug treatments are available that can help reduce the symptoms or slow down the disease progression in some people. People with Alzheimer s Disease have been shown to have a shortage of the chemical acetylcholine in their brains. The drugs Aricept, Exelon and Reminyl work by maintaining the existing supplies of acetylcholine. All these drugs have side effects, the most common of which are diarrhoea, nausea, fatigue and loss of appetite. Most people with are cared for in the community and support and care is the most important part of their treatment. They often feel vulnerable and in need of reassurance and support. Carers, family and friends need to do everything possible to help them to retain their sense of identity, self respect and feelings of self worth. The level of care and support needed changes over time, for example, some people with mild can cope well in their own familiar home settings. Some may have to live with a family member who does most of the caring and in the latter stages, placement in a residential or nursing home may be the best solution. 11

12 This information is correct at the time of publishing Last Reviewed: June 2012 get We are a smokefree organisation. Please provide a smoke free environment approved for your healthcare provider DP6595/01.17