?Understand the process and experience of dementia Essay
Understand the process and experience of dementia
Describe a range of causes of dementia syndrome
Dementia is not a single disease, but rather a non-specific illness syndrome (i.e., set of signs and symptoms). Is a broad term used to describe a range of signs and symptoms consistent with damage to the brain caused by specific conditions. These signs and symptoms are associated with progressive and degenerative changes in the intellectual functioning. The brain is a complex organ and is divided up into different areas that control different functions within the body. The brain contains around 100 billion cells. In dementia some of these cells stop working properly. The part of the brain that this occurs in will affect how that person thinks, remembers and communicates. Senile dementia is a term that refers to dementia in people aged over 65. It is not uncommon for people under the age of 65 to develop dementia.
This is known as early onset dementia. Some people with learning disabilities are at risk of developing dementia in adult life. People with Down’s syndrome are at risk of developing Alzheimer’s disease. The risk of Alzheimer’s increases as the person gets older. It is estimated that over half of the people with Down’s syndrome will develop Alzheimer’s disease when they are in their 60s.
There are different types of dementia with a variety of causes.
Alzheimer’s disease (AD) usually presents with loss of memory, especially for learning new information and later behaviour that challenges. Symptoms commonly include depression, apathy, agitation, disinhibition, psychosis (delusions and hallucinations), wandering, aggression, incontinence and altered eating habits.
Vascular dementia (VaD) can present after an acute vascular event (for example, a stroke) planning problems, gait disturbance and apraxia (loss of ability to perform previously learned tasks). Behaviours that challenge are also common in VaD, with depression and apathy seen most frequently.
Dementia with Lewy bodies (DLB) is characterised by recurrent visual hallucinations, fluctuating cognitive disturbance and motor features of parkinsonism. Associated features in DLB are falls, disturbances of consciousness, autonomic dysfunction and rapid eye movement (REM) sleep behaviour disorder
Frontotemporal dementia (FTD)usually presents with language disturbance and/or behavioural difficulties (either disinhibition or apathy),
Korsakoff’s syndrome is a brain disorder that is usually associated with heavy drinking over a long period. Although it is not strictly speaking a dementia, people with the condition experience loss of short term memory.
Prions are infectious agents that attack the central nervous system and then invade the brain, causing dementia. The best-known prion disease is Creutzfeldt-Jakob disease, or CJD.
HIV-related cognitive impairment
People with HIV and AIDS sometimes develop cognitive impairment, particularly in the later stages of their illness.
Rarer causes of dementia
There are many other rarer causes of dementia, including Infections of the brain such as meningitis, encephalitis, progressive supranuclear palsy and Binswanger’s disease. People with multiple sclerosis, motor neurone disease, Parkinson’s disease and Huntington’s disease can also be at an increased risk of developing dementia.
Describe the types of memory impairment commonly experienced by individuals with dementia.
People with dementia usually suffer from short term memory (STM) loss. As a
rule, the most recent events are the first forgotten. For example, a person with early stages of dementia might go to the shops and then cannot remember what they wanted. It is also common to misplace objects. However, events of the past are often remembered well until the dementia is severe. Many people with dementia can talk about their childhood and early life. As dementia progresses, sometimes memory loss for recent events is severe and the person may appear to be ‘living in the past’. They may think of themselves as young and not recognise their true age. Someone with dementia may not know common facts when questioned (such as the name of the Prime Minister). They may have difficulty remembering names or finding words. They may appear to be asking questions all of the time. Memory loss can be defined in different ways depending on the situation it is being used for and the type of memory which is lost. Memory loss can be the inability to retrieve information from the long-term memory. This type of memory loss usually happens when the person is distracted or is not fully concentrating when the memory is formed. Another form of memory loss is when new memories are stored within the brain replacing older memories. A person with dementia may have difficulties remembering things that happened only a short while ago. However, the same person may be able to remember things that happened many years ago. Other memory difficulties could include: •• a difficulty in recognising people or remembering their names •• the inability to find the right words for things or objects •• repeating conversations that they have already had
•• asking the same question in a short space of time
•• forgetting appointments or recent events
•• misplacing items, forgetting where they have put things or where they are usually kept. People with dementia may not only find difficult to concentrate they may struggle also with sequencing task such, the order in which things need to be done. People with dementia may struggle with understanding what people say to them, and in expressing themselves. They may be able to see people and objects perfectly well, they may not be able to make sense of them or not recognise familiar faces or sometimes they are anable to recognise what familiar objects are for.
Explain the way that individuals process information with reference to the abilities and limitations of individuals with dementia. Most cases of dementia are caused by damage to the structure of the brain which affects the individual’s ability to function as they once did. Because of this damage, there is an inability of the brain to send the right signals for the sequencing of required task, despite the individual being physically capable of doing each action. (Dyspraxia/Apraxia). Memory and learning are closely linked. Learning involves the acquisition of new information which changes the individual’s knowledge or behaviour. Memory includes the retention of that information. Hence, learning is dependent upon memory, and memory cannot exist if informational processing (learning) fails to occur. Memory impairment affects behaviour and daily performance capabilities, and in dementia, it interferes with the ability to learn. Because short term memory is severely impaired in individuals with dementia, it affects their ability to retain information long-enough to transfer it into long-term memory. This in turn reduces their capacity for new learning. Every task we do has multiple steps. Inability to do any step results in inability to complete a task. If the dementing disease has affected the patient’s ability to do part of a task, the patient will not be independently able to do that task. People with dementia who have damage to the neurons on the right side of the brain will have difficulty putting information together. They will be able to ‘see’ things, items or people, but will not be able to make the connection of what those things, items or people are. People who have damage to the neurons on the left side of the brain tend to be affected by depression. They will have more organisational problems and will have problems using language.
Explain how other factors can cause changes in an idividual’s condition that may not be attributable to dementia.
Experiencing a loss or reduction in memory does not always indicate a form of dementia. There are other health conditions which could affect somebody’s level of memory. An individual might vary from day and according to
different times of the day. Tiredness, Illnes, Anxiety, Loss of confidence, Being in an unfamiliar environment, Stress, Side effects of medications. There are other factors that can cause changes in an individual’s condition. These include: The effects of drug misuse including excess alcohol can cause damage to the neurons in the brain, resulting inneurological difficulties including memory disruptions. Injuries to the brain can be caused by external trauma such as a blow to the head, or internal factors such as aresult of a stroke or aneurism. Multiple sclerosis (MS) can occurs as the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body. Depression can be mistaken for dementia as it also present as deterioration in an individual’s well-being, but it is often the dementio that is the cause of the the depression. An infections, especially one with high temperature, can cause confusion and disorientation. Dehydration can cause that person become agitated and confused. A stroke, because of a disruption to the blood supply to a particular area of the brain, causing damage to that area of the brain. Medications. Some prescription medications can have side effects which can affect somebody’s memory. Agitation and aggression, either verbal or physical, shouting or screaming are not normally direct symptoms of dementia. These episodes are usually attempts to communicate important feelings. It may be, for example, that the person is feeling threatened or is in pain. They may be feeling frustrated or sad because they are unable to communicate their feelings into words. Incontinence can be an indirect result of other symptoms of dementia for example, forgetting where the toilet is, or not being able to remember how to unfasten clothing. The environment often contributes to these ‘accidents’ too. For example, if the door to the toilet looks like every other door, the person will receive no clues to compensate for their memory problems. The term ‘wandering’ implies aimlessness, but in fact people with dementia walk for many different reasons. Walking is not a symptom, but an action that communicates a need. It might be, for example, that the person is going somewhere or looking for something, is experiencing pain or discomfort, is in need of exercise, is seeking stimulation, or is trying to find the toilet.Fatigue can be experienced by individuals with dementia because of the extra demands the
illness places on their cognitive processes. 1.5
Explain why the abilities and needs of an individual with dementia may fluctuate.
All of us have some fluctuation in our abilities over days, depending on our mood and health and energy. Individuals with dementia will all vary from each other because they may have damage in different parts of the brain. As the disease progresses, it may affect different parts in different people. Different individuals will face different types of problems. For example, some may have more problems walking, while others may have more problems while speaking. In dementia patients, the fluctuation in the abilities to do a specific task or remember something is very prominent. This may be because of the way neuron connections are damaged, or because the brain compensates for such damages differently on different days. To persons interacting with dementia patients, it seems strange to see the person able to remember something on one day, and not be able to remember it later. Or to see the patient do something on one day and not be able to do it the very next day. You may find that some individuals are better at different times of the day. Some types of dementia cause abilities and mental capacity to fluctuate quite dramatically. Individuals with Lewy bodies may find their abilities fluctuate daily or even hourly. It is important to be tempted to take over what they are having difficulty with. Help them to calm down and think about what they are doing. The more the person becomes agitated, the greater their difficulties will become. As the condition progresses, the more support the person will require. This will include support with day-to-day activities. The carers should give support through reminding the person what they need to do. The carer should not overload them as this will increase their stress and therefore their symptoms. If the person asks a question and repeats it several times within a short space of time, it is important to answer it as though it is the first time we have heard the question, and also do not show frustrations as this will only cause them to become upset. In the later stages, the person will become emotionally and physically frail. Their reliance on care will increase to the point where they are no longer able to care for themselves. They may lose their ability to eat, walk or speak, with
only the occasional word being shouted or crying out.
Describe the impact of early diagnosis and follow up to diagnosis.
It is now becoming increasingly important to diagnose dementia early in order to identify which type of dementia the person has. As drugs for treating different conditions become available, it is important to follow up the early diagnosis with a follow up diagnosis to determine which type of dementia the individual has and receive the correct and most appropriate treatment. For example, drugs are already available to treat some people with Alzheimer’s disease and some people with dementia with Lewy bodies, but these drugs are ineffective in the treatment of Pick’s disease (another form of dementia), and may actually worsen symptoms. . Early diagnosis will ensure that the individual and their carers have an understanding of the changes in memory, personality and behaviour they are experiencing or can expect to occur. It will also allow the individual and carers to:
access advice, information and support (emotional, practical and financial) from social services, voluntary agencies and support groups Be better equipped to deal with the disease
Plan for the future
Facilitate access to appropriate help and support
Exclude other treatable conditions or illnesses that cause memory loss Open gateways to receiving relevant benefits and welfare rights Be a hugh relief to finally know whats happening
Ensure closer monitoring of individuals medical regime
Access to anti-dementia drugs as soon as individual becomes eligible for them allow the person with dementia to plan and make arrangements for the future and give them the opportunity to put their affairs in order
The initial diagnosis will be carried out by the individuals GP. If dementia is diagnosed he will then make a referral to social services and also to a specialist. When an individual is diagnosed with dementia, everyone involved may have different reactions. Some of these may be positive, and others are
negative. Becoming ill, losing independence or accessing a care service can be a frightening experience for many people. There are many associated fears that may or may not seen rational. The experience of loss, for example moving away from their home or family, and fear of illness, disability and its effects, may contribute to their distress in similar way to bereavement. Diagnosis can be difficult to make in the early stages as the symptoms of dementia can develop slowly. They can also be similar to symptoms of other health conditions. The GP or health professional will be able to monitor any pattern of symptoms and undertake tests over a period of time to measure any changes in the person’s mental ability. Following diagnosis, the person may want to live as independently as they can for as long as they can. They may not appreciate someone taking over their life in these early stages where they are still able to care for themselves. To enable the person to remain as independent as possible, it may be an idea to encourage them to contact social services, if they have not already done so, to find out what support they could be entitled to. In order to aid their memory the person could place a list of important telephone numbers by their phone. This way they will always know where a telephone number is if they need it. Labels could be placed on cupboard doors to remind them of the contents. Notes could be placed on doors as a reminder to lock them. Lists could be put on a noticeboard of things to do and days to do them on, such as putting the rubbish out for the refuse collectors. Early diagnosis can enable the early introduction of specialist services. The services may include: •• family GPs – referring the person for further tests, reviewing medication •• district nurses
•• health visitors
•• community psychiatric nurses
•• memory clinics
•• clinical psychologists
•• speech and language therapists.
In many cases, the earlier the diagnosis and follow-up, the sooner the person can start regaining their life again. This is not to say that they will receive a cure – at this moment in time the only option open to people is acceptance and treatment in slowing down the progress of the condition.
Explain the importance of recording possible signs or symptoms of dementia in an individual in line with agreed ways of working.
In the very early stages of dementia the person may have days or episodes of forgetfulness which could be put down to the person being off-colour or having an off day. These episodes may be masked by their ability to recall past events easily. They may be able to give a reason as to why they cannot remember what the carer have just said to them. The person may have difficulty understanding or following new ideas or regimes. To cover these difficulties they may say that they preferred the old way, as it is not as confusing. They could hide occurrences of misplacing items, making out that someone has moved the item or someone has taken it. All of these events, happenings and reasons could be very genuine and indeed the person themselves may believe in what they are saying to be true. If they were all true, the person would be a very unlucky person to be experiencing all of these negative events. The likelihood of them all occurring to the same person in a short space of time would be rather remote. Any changes to an individual’s care needs, behaviour or abilities should always be recorded in their care plan, so others involved in the individuals care, are aware of and can monitor the situation and also to ensure the individual’s needs and wishes are being met. The written record will provide important information which can be referred to later on during the diagnosis procedure, by the GP. You should follow your workplace policies and procedures re reporting changes to an individual’s care needs and also follow Section 6 of the GSCC code of practice. Documenting the service received by individuals is vital. The way in which care services are documented will evidence what is
occurring for the individual as well as demonstrating whether person-centred care is integral to the service provided.
Explain the process of reporting possible signs of dementia within agreed ways of working
If the carer notice possible signs of dementia it is in his/her responsibility as the individuals carer, to report the observations and concerns, in order to ensure the individual receives the correct treatment as soon as possible. As well as making a written record of your concerns you should also report your observations to your immediate senior/manager. This will lead to the GP being contacted to make a formal diagnosis and referral if necessary .The diagnosis of dementia does not generally occur following the first visit to the GP. Generally there is a process in which the person goes through in order to receive a definitive diagnosis. National Institute for Health and Clinical Excellence (NICE) NICE has devised detailed guidelines in supporting people with dementia. This also includes the early diagnosis of dementia. Within this guide it states that primary health care staff should consider referring people who display any signs of mild cognitive impairment (MCI) for assessment. It states that diagnosis should only be made following assessment to include: •• the person’s history
•• a cognitive and mental state examination
•• a physical examination
•• a review of all medication including over-the-counter remedies. As a care worker, the input in reporting possible signs of dementia would go towards the person’s history.
Describe the possible impact of receiving a diagnosis of dementia on
Prior to diagnosis an individual may feel worried about the changes they are experiencing in themselves. Diagnosis can bring a sense of relief by knowing
the cause of these changes. At the time of diagnosis the individual may also feel a sense of loss and bewilderment about the future, confused, anxious, sad, angry, upset, frightened, embarrassed and depressed. They may feel that little will – or can be done – for them in these early stages. They may feel their life is ending. They may feel vulnerable and in need of reassurance and support, and some may see it as a relief that the cause of their difficulties has been diagnosed. It may take some time for the individual to accept the diagnosis. When younger people are diagnosed with dementia they can feel extra stigma and discrimination. This is because dementia is so strongly associated with older people and a younger person may not be believed when they say they have dementia, which can add to their problems. The person may be shocked on first hearing the diagnosis; this can often turn to denial. One theory on loss or grief shows that the process usually goes through five stages including: 1. Denial. The best coping strategie is sccept denial, but stay realistic and aware that denial often breaks down in the early hours when they feel alone. 2. Anger. It is important to allow expression through positive means if possible. Anger may be directed towards family members, care workers or others involved.Help individuals and their supporters to recognise that it is usual to experience anger at what they are losing. 3. Bargaining. A period of time for those to regain strength. The time to complete unfinished business. 4. Depression. It is important at this stage to understand and accept as a usual pattern of behaviour that the individual doesn’t want to talk and excludes help. 5. Acceptance. At this point it is important to help family and others to provide continuing. Loving human contact. It is felt that the person may not necessarily go through each stage in this particular order, and indeed can go backwards and forwards, repeating various stages a number of times before reaching and remaining at acceptance.
their family and friends:
Having a family member diagnosed with dementia can impact on individuals in a variety of ways. The economic costs of dementia are considerable, and a significant portion must often be borne by the individual families. If care is provided at home, the carer may have to give up employment. There is also
the psychological frustration of seeing a loved one, particularly a parent, unable to accomplish the simplest actions of toileting, eating and dressing can cause serious depression. They may feel they are losing their loved one. Research confirms that carers are at high risk for mental ill health. They may also be unsure of what the future holds, in terms of the dementia and not know where or how to get help and advice, leaving them apprehensive, worried and confused. Dementia is a disease that can bring grief to a family if it isn’t handled correctly. There are so many myths circulating about the illness, and many people do not understand that dementia is a manageable condition. In fact, many families living with a dementia patient can find some peace and a little stability. It just takes a clear understanding of what dementia is and how it can be managed. NICE (National Institute for Health and Clinical Excellence)guidelines state that following a diagnosis of dementia, health and social care professionals should provide the person and their family with written information regarding: •• the signs and symptoms of dementia
•• the course and prognosis of the condition
•• local care and support services
•• support groups
•• sources of financial and legal advice, and advocacy
•• medico-legal issues, including driving
•• local information sources, including libraries and voluntary organisations. Any advice and information given to the person and their family should be recorded in the person’s care notes. The confidentiality of the person should be respected if they decide they do not wish any information to be given to their family.
Compare a person centred and a non-person centred approach to dementia care.
A person-centred approach to providing care and support is as important for people who receive services (and their family or significant others) as it is to staff. The emphasis should always be on the person as an individual.
In a person centred approach the unique qualities of the individual as determined by their life history and experiences, likes and dislikes, are their defining characteristics. A good way of doing this is to make a “Book of my Life”, for the cared for person. The purpose of the book is to give information of life experiences, relationships, preferences and unique personality of the cared for person that will be available to inform staff in the care settings. It could contain information about their date of birth, schools (where and when), employment, likes and dislikes, their dietary needs, daily and weekly routines, habits, interests and hobbies. In a person centred care plan the focus should be on the individuals skills and capacities which the person retains rather than loses. People with dementia have the same rights as citizens. This includes the right to be treated with dignity and respect. Person-centred care is a way of providing care with the person at the centre of everything you do. Another way of describing it is individualised care – care that is given to the person according to their needs, wishes, beliefs and preferences. One would hope that gone are the days when everyone in a care home got up at the same time, ate their breakfast at the same time, got washed and dressed at the same time, even going to the toilet at the same time. These regimented routines of care homes were devised for the benefits of the staff, not the people being supported. The day revolved around tasks, duties that had to be met, more often than not putting the people’s specific needs at the end of the priority list. Care and support services should build on individual strengths and abilities to maximise and promote independence. Services should enable people to feel valued and safe. Dementia, which has formerly been defined as a disease, is now being viewed as a disability. Viewing dementia as a disability allows us to view the person with dementia as an individual actively coping with her or his own impairment and entitled to an adequate quality of life and comfort. In order to provide true quality of life for people with dementia, it is necessary for us to shift our way of thinking from focusing on dementia as a disease that is degenerative without a cure – to focusing on the whole person, and seeing dementia as a disability of certain parts of the person’s brain. In this way we can view the person as an individual and still have the whole person to work with where improvements in the person’s abilities are possible, and continued use
of their strengths essential. In a non person centred approach the individual would not be treated as an individual and each person would be treated to the same form of care, no matter what their abilities or wishes. A non person centred approach would only concentrate on the dementia as an illness.Once the person’s care needs have been identified, plans should be made to draw up a support plan which will describe how those needs will be met. As with the assessing of needs, the person must be at the centre of the support planning process. Nothing should be planned for them without them.
Describe a range of different techniques that can be used to meet the fluctuating abilities and needs of the individual with dementia.
One of the main triggers resulting in somebody with dementia becoming agitated and confused is a change in their routine. Any changes to the person’s life or daily routine can cause them to become unsettled, which could lead to inappropriate behaviours. To ensure stability it is important to:
Unfamiliar faces can cause the person great upset. Ensure that they know the staff and ensure the same staff member provides care to the person in their own home. Keeping a sense of structure and familiarity and consistent daily times for activities such as waking up, mealtimes, bathing, dressing, receiving visitors, and bedtime. Maintain a familiar environment. It is an eventuality in everyone’s life that their surroundings will change at some point. This could simply be through redecoration or changes in furniture. Where possible, if decoration needs to be undertaken within the person’s environment, try to make the new decor similar if not the same as it was previously. If relocation is required for the person, ensure this is minimised by confirming the suitability of the new location. Keeping these things at the same time and place can help orientate the person. This will save on the person needing to be relocated again due to the environment not being suitable for their needs Ensure the person is in a non-stressful, constant and familiar environment establish a regular routine, regular physical activity and adequate exposure to light to improve any sleep
disturbances. Let the person know what to expect even if you are not sure that he or she completely understands. You can use cues to establish the different times of day. For example, in the morning you can open the curtains to let sunlight in. In the evening, you can put on quiet music to indicate it’s bedtime. Involve the person in daily activities as much as they are able. For example, a person may not be able to tie their shoes, but may be able to put their clothes in the hamper. Clipping plants outside may not be safe, but the person may be able to weed, plant, or water. It is important to use the best judgment as to what is safe and what the person can handle. Communication techniques:
Keep it simple. Call the person by name. Ask one question at a time, and give the person ample time to answer. Try again if the person doesn’t respond. Body language is important, especially as Alzheimer’s progresses. What feelings do you sense behind the words? Encourage the person to point or gesture if they can’t remember what an object is called. Pay attention to your own body language as well. Make good eye contact. If you are getting irritated, tense, or feel rushed, it can make the individual even more flustered. Take a short break if you feel your fuse getting short, and try again when you are calmer. Move and speak slowly and calmly
Provide 1 to 2 step simple verbal instructions at a time
Do not rush
Allow patient sufficient time to respond to a command
Reassure patient that they are doing a good job
Avoid use of negative words and negative approaches (Don’t scold, argue) Eliminate noise and distraction while communicating
Be aware of facial expressions, make eye contact but do not stare Express affection – smile, hold hands, give a hug
Planning activities or visitors
Start with the person’s interests. Asking family and friends for memories of interests the person used to have. Carer need to tailor the interests to the current level of ability so the person doesn’t get frustrated. People with dementia should have vary activities to stimulate different senses of sight, smell, hearing, and touch. For example, carer can try singing songs, telling
stories, movement such as dance, walking, or swimming, tactile activities such as painting, working with clay, gardening, or interacting with pets. Planning time outdoors can be very therapeutic. Carer can go for a drive, visit a park, or take a short walk.. Consider outside group activities designed for those with dementia. Community centres may host these types of activities. Carer can also look into adult day care programs, which are partial or full days at a facility catering to older adults. Memory box…..A suitable metal, wooden or cardboard box can be used. Items from the past of the cared for person can act as a memory aid. The items can show who the person is and what they have achieved in their life. Anything with a personal memory that will stimulate them and that they can relate to is ideal. Objects from the past, family heirlooms, household or personal items with a sentimental value, photographs, medals. Do not include anything sharp or pointed. Add items to the box as time progresses To reduce incidents of wandering, promoting physical activities is very helpfull to reduce the person’s boredom and to help use some pent-up energy. Incontinence pads, sheaths or catheters can be obtained to help keep the person free from unnecessary embarrassment and frustration. Agitation can include behaviours such as sleeplessness, verbal or physical aggression and irritability. These types of behaviour often increase with the stages of dementia and can become quite severe. The carer can help reduce episodes of agitation by reducing the intake of caffeine, sugar and processed foods. The reduction of noise or crowds can also help, as does the maintenance of the person’s routines. It is a common occurrence with those who have dementia to repeat a word, statement, question or activity more than once in a short amount of time. Repetition is often as a result of the person becoming anxious, bored, fearful or agitated. One way of reducing this is to provide them with reassurance. Alternative strategies could include displaying reminders of activities around their home.
Describe how myths and stereotypes related to dementia may affect the individual and their carers
Over the years, many myths have evolved about what dementia is, who gets it
and how it affects people who have it. These myths can add to the stigma attached to dementia and stand in the way of our ability to understand and help people with it. Being ignorant of the facts about dementia leads people to stereotype individuals. Prior to diagnosis, these myths and stereotypical assumptions, may be the individuals and their carers only knowledge of dementia. This may cause the individual to feel their life is over, Their carers may be worried they will ‘lose’ their loved one to dementia. They may become over protective or embarrassed to take individuals out to social activities, fearing ridicule from others. Below are some of the myths and stereotypical assumptions people make regarding and surrounding dementia and in particular Alzheimer’s disease.
Myth 1: Because someone in my family has Alzheimer’s disease, I’m going to get it. Reality: Although genetics play a role in the disease, only about seven per cent of cases are associated with genes that cause the early onset inherited familial form of the disease (FAD). The majority of cases are of the late onset “sporadic Alzheimer’s disease” form, in which genes may also play a role. A person who has a parent or a sibling who has or had sporadic Alzheimer’s disease has a very slightly increased risk of getting the disease. Myth 2: Alzheimer’s disease is only an old person’s disease. Reality: While age is the most significant known risk factor for Alzheimer’s disease, most people in fact do not develop the disease as they age. Moreover, even with the late onset form of the disease people have been diagnosed with it in their 40s and 50s.What’s most important to understand is that Alzheimer’s disease is not a normal part of aging. Myth 3: There is a cure for Alzheimer’s disease.
Reality: At present there is no cure for Alzheimer’s disease, but there are medications and other approaches that can successfully help with some of the symptoms and improve quality of life, in some people. The good news is that researchers have made great strides and there are a number of drugs in clinical trials that act directly against the disease process. Myth 4: Memory loss means Alzheimer’s disease.
Reality: Many people have trouble with their memory, but that in itself does
not mean they have Alzheimer’s disease. When memory loss affects day-to-day function and is coupled with lack of judgment and reasoning, or changes in communication abilities, it’s best to visit a doctor to determine the cause of the symptoms. Myth 5: Aluminium causes Alzheimer’s disease.
Reality: Although there’s been much research into the connection between aluminium and Alzheimer’s disease, there’s no conclusive evidence to show a link. The disease appears to develop when the combined effects of many risk factors, including age, genetics, lifestyle and environmental factors, overwhelm the natural capacity of the brain to deal with them. Myth 6: Alzheimer’s disease is preventable.
Reality: There is no treatment that can prevent Alzheimer’s disease. There is, however, a growing amount of evidence that lifestyle choices that keep mind and body fit may help reduce the risk. These choices include being physically active; eating healthy foods including fresh fruits, vegetables and fish; keeping your brain challenged; reducing stress, keeping an eye on your blood pressure, blood sugar and cholesterol levels; avoiding traumatic brain injury; and keeping socially active. Myth 7: Vitamins, supplements and memory boosters can prevent Alzheimer’s disease. Reality: Many studies have been done to test the effectiveness of products such as vitamins E, B, and C, gingko biloba, folate, and selenium in preventing Alzheimer’s disease. The findings are mixed and inconclusive. However, research in this area is ongoing. Myth 8: If I’m diagnosed with Alzheimer’s disease, my life is over. Reality: Many people with the disease live meaningful, active lives. They have a sense of purpose and do not feel their lives are over. Earlier diagnosis and medications are helping. It is also important to provide appropriate surroundings, services, support and activities to people with the disease to help enrich their quality of life throughout the progression of the disease. Myth 9: All people who have Alzheimer’s disease become violent and aggressive. Reality: Alzheimer’s disease affects each person differently, and certainly not all become aggressive. For the person with Alzheimer’s disease, the loss of memory and the resulting confusion is often frustrating or even frightening. By learning about the disease, adapting the person’s surroundings and changing the way we communicate with the person,
aggressive responses may be preventable. Myth 10: People with Alzheimer’s disease cannot understand what is going on around them. Reality: Some people with Alzheimer’s disease understand what is going on around them; others have difficulty. The disease does affect a person’s ability to communicate and make sense of the world around them, although it affects each person differently. When we assume someone does not understand, feelings can be hurt unintentionally. The fact is a person with Alzheimer’s disease is still the same person as before and needs to be treated with dignity and respect. MYTH 11: Memory loss is a natural part of aging.
REALITY: We’ll start off with the toughest myth to dispel. The fact of the matter is we don’t actually know how much memory loss is “normal” as we age. Many people will claim they have a harder time remembering things as they age; however, there is no confirmation through research that this is true. Perhaps our minds do become a little less sharp, and we may tend to forget why we walk in a room more often. What is absolutely certain is that memory deterioration as a result of Alzheimer’s disease is not a natural part of normal aging. MYTH 12: Most people with dementia do not recognize they are behaving differently. REALITY: In fact, most people with dementia do recognize they are behaving differently, but probably can’t help it. Especially during the early stages of the disease, people with dementia will be aware that their memories are periodically failing. A family member might tell a senior \ he forgot something, or he might forget his address when he is filling out a form. This is usually embarrassing, and people with memory loss often try to cover it up by making excuses or fibbing, making it seem like they aren’t .
Describe ways in which individuals and carers can be supported to overcome their fears.
Being diagnosed with a dementia related illness can be devastating. It is important that once a diagnosis is reached the person and their family have the opportunity to discuss this diagnosis, what it means, what the future might hold and the types of support they might need to help them with the
challenges & changing needs and fears they feel regarding the diagnosis. To help all those involved to overcome worries for the future, the person and their family should be supported to learn the truth, what they can expect from the future. People should be allowed time to process the information and be encouraged and allowed to ask questions about what it means. The best way to overcome their fears is to speak to others who have been through the same situation and be able to discuss their fears and the disease and what they may expect in the future. A good way of doing this is to join a support group. Here they will meet others and will be able to get both practical and emotional support, share experiences, get advice on benefits, advocacy, counselling and provide social events and outings. Some people and their families may benefit from receiving counselling. This can often be provided by the GP’s surgery. It is a confidential service which is there to help the person and their family to develop ways of dealing with their thoughts, fears and feelings.