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Process and Experience of Dementia Free

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1.1 Dementia is an umbrella term for a range of diseases that affect memory, behaviour and motor skills. The causes vary depending on the disease but largely the presence of “plaques” and “tangles” on the neurons of the brain is found in people with Alzheimer’s. Plaques are protein that the body no longer breaks down and allows to build up; these get between the neurons and disrupt the message transmission. Tangles destroy a vital cell transport system made of proteins. The transport system is organised in orderly parallel strands like rail tracks. In healthy areas a protein call “tau” helps the tracks stay straight but in areas where tangles are forming the tau collapses into twisted strands and the tracks can no longer stay straight and fall apart and disintegrate.

In Alzheimer’s disease, two abnormal proteins build in the brain. They form clumps called either “plaques” or “tangles”. These plaques and tangles interfere with how brain cells work and communicate with each other. The plaques are usually first seen in the area of the brain that makes new memories.

Vascular dementia is caused by blood flow to the brain being reduced. Blood carries essential oxygen and nourishment to the brain and without it brain cells die. The network of blood vessels that carry blood around the body is called the vascular system. Stroke related dementia happens after a stroke. A stroke will occur when blood supply to a part of a brain is suddenly cut off. This may cause difficulties in moving, co-ordination, speech and sight. If a stroke causes memory loss and problems with attention, then a person may be diagnosed with post stroke dementia. Multi-infarct dementia is caused by a series of small strokes in the brain, which a person might not notice.

Dementia with Lewy Bodies is caused by small, round clumps of protein that build up inside nerve cells in the brain. The protein clumps damage the way brain cells work and communicate with each other. The nerve cells affected by Lewy bodies control thinking and movement and cause Parkinson like symptoms.

Frontotemporal dementia (FTD) is caused by a variety of abnormal proteins building up in the brain. The nerve cells affected are in areas call the frontal and temporal lobes. The frontal lobes are involved in regulating our personality, emotions and behaviour, as well as reasoning, planning and decision-making. The temporal lobes are involved in memory and the understanding and production of language. As the disease progresses, other parts of the brain become affected.

1.2 Almost all brain functions, including memory, movement, language, judgment, behaviour and abstract thinking, are eventually affected if diagnosed with Alzheimer’s disease.

Vascular dementia is caused by brain damage from cerebrovascular or cardiovascular problems (strokes) or other problems that inhibit vascular function; the symptoms are similar to Alzheimer’s but personality and emotions are effected only late in the disease.

Lewy body dementia is common and progressive where cells in the brain’s cortex die and other contain abnormal structures; symptoms overlap with Alzheimer’s disease but also include hallucinations, shuffling gait and flexed posture with symptoms that may vary daily.

Frontotemporal dementia is linked to degeneration of nerve cells in the frontal and temporal brain lobes and some evidence for a genetic factor; symptoms in patients (usually ages 40-65) have judgement and social behaviour problems such as stealing, neglecting responsibilities, increased appetite, compulsive behaviour and eventually motor skill problems and memory loss.

People with dementia lose their memory of day to day things but still remember things from their past. As the disease gradually gets worse individuals start to forget about their personal hygiene, personal wellbeing, how to cook or clean in their own home, they forget how to stay safe within their own environment. They gradually lose their memory of being able to function as a functioning human being, it’s as if they go back to childlike and can’t remember anything on how to function.

1.3 Individual’s process information in different ways therefore depending on their abilities will depend on their limitations of individuals with dementia. Some people are aware of their limitations, this may make them feel sad for the way they are now and making them worried about the future. Usually as the disease progresses, the level of self-awareness will most likely decline as well. In earlier stages of dementia the person you care fore may deny or not understand that they have the disease and this can then result in them not realising their own limitations in their abilities, such as driving, cooking etc.

The individual may believe that they are completing tasks which are now being done for them e.g. they may think they have made the bed when someone else has. As their self-awareness declines, so will their ability to express their thoughts and feelings accurately. The loss of self-awareness does not have to be a negative thing, if someone with Alzheimer’s disease does not recognise their decline; it is possible that they could believe they were suffering less.

1.4 Other factors can cause changes in an individual’s condition, such things like change of diet or medication, change of habitat or area, change of surroundings within their own home, changes in their day to day health, changes of people – this may be that they are receiving care at home and changes of carers on a regular basis means no consistency for the individual. Depression and underactive thyroid can also cause memory problems.

Creutzfeldt-Jakob disease is a rare brain disorder that affects 1 in every million people worldwide each year. CJD belongs to a family of diseases known as transmissible spongiform encephalopathies, or TSE’s. Spongiform refers to the fact that the brain becomes filled with microscopic swellings that give the appearance of holes, like a sponge. CJD and other TSEs are believed to be caused by infectious proteins called prions that become misfolded. Scientists believe that the presence of misfolded prions can trigger normal proteins to misfold as well, causing a chain reaction. These abnormal prion proteins tend to clump together, which is believed to be related to the brain damage.

Huntington’s disease is a hereditary disorder is caused by a faulty gene for a protein called Huntington. Symptoms begin around age 30 or 40 years and include abnormal and uncontrollable movements called chorea, as well as gait changes and lack of coordination. Huntington’s disease may affect a person’s judgment, memory, and other cognitive functions. As the disease progresses, these cognitive problems worsen, and motor difficulties lead to complete loss of ability for self-care. Children of people with Huntington’s have a 50 percent chance of having the disorder.

Head Injuries and Chronic traumatic encephalopathy, initially known as dementia pugilistic, is caused by repeated traumatic brain injury (TBI), such as in boxers or in people who suffered multiple concussions while playing a contact sport. People with this condition often develop poor coordination, slurred speech, and other symptoms similar to those seen in Parkinson’s disease, along with dementia, 20 years or more after the TBI events. This form of dementia also is characterized by brain atrophy and widespread deposits of tau aggregates. In some individuals, even just 5 to 10 years beyond the TBI events, behavioural and mood changes may occur. Dementia may not yet be present and the brain may not have atrophied, but small focal deposits of tau are seen in the brain at autopsy.

1.5 The needs of an individual with dementia may fluctuate because of a number of factors. The main cause of dementia causing an increased fluctuation is as the condition progressives their capabilities and capacity of understanding will decline over time. Other causes are that the individual may be experiencing difficulties with understanding their nights and days, this leads to the person becoming fatigued during the day due to not sleeping properly. This fatigue levels can effect there cognitive abilities, social skills, coordination and become more uncoordinated with tasks.

The individual with dementia may receive care from a care provider who does not maintain a good standard of continuity with their staff. This is a very important aspect to a person with this condition as they must become familiar with the people who care for them to gain trust and familiarity with routines such as personal care and medication.

Poor staff training and risk managements strategies, care plans and guidelines which have not been put in place so all support workers are working differently causing the individual to become easily confused as no structured routines are in place.

As their condition deteriorates they will become less in control of their toilet habits, requiring personal care support and incontinence aids. This can cause fluctuations in the person’s behaviour as perhaps they are frustrated that they can no longer take care of their personal needs. When soiled the person is uncomfortable requiring assistance, this can cause understandable distress and negative behaviours displayed.

Communication could not be structured correctly for the person which then causes confusion and lack of understanding as they are unable to comprehend what is expected of them.

Infections, change of medication, change of environment, pain and stress, these are areas that cause an individual with dementia to show signs of their mobility, social skills, understanding and interaction levels to decrease and fluctuate. Also maybe they could be experiencing a type of abuse from someone around them either – physical, mental, institutional, sexual, financial, neglect, verbal and they are unable to communicate this to report it.

2.1 Early planning and assistance with early diagnosis enables a person with dementia and their family to receive help in understanding and adjusting to the diagnosis and to prepare for the future in an appropriate way. This might include making legal and financial arrangements, changes to living arrangements and finding out about aids and services that will enhance quality of life for people with dementia and their family and friends.

Early diagnosis can allow the individual to have an active role in decision making and planning for the future while families can educate themselves about the disease and learn effective ways of interacting with the person with dementia. Changes in memory and thinking abilities can be very worrying for all parties involved in the care of a loved one with dementia. Symptoms of dementia can be caused by several different diseases and conditions, some of which are treatable and reversible, including infections, depression, medication side-effects or nutritional deficiencies. The sooner the cause of dementia symptoms is identified, the sooner the treatment can begin. Asking a doctor to check any symptoms and to identify the cause of symptoms can bring relief to people and their families.

There is evidence that the currently available medications for Alzheimer’s disease may be more beneficial if given early in the disease process. These medications can help to maintain daily function and quality of life as well as stabilise cognitive decline in some people; however, they do not help everyone and they are not a cure. Early diagnosis allows for prompt access to medications and medical attention.

Receiving a diagnosis can also help in the management of other symptoms which may accompany the early stages of dementia, such as depression or irritability. Also reviewing management of other medical conditions is critical, as memory problems may interfere with a person remembering to take important medications such as for diabetes, heart disease or high blood pressure.

2.2Effective recording could provide the patient with medication to reduce the effects as early as possible

Monitoring their sleep patterns, due to not knowing day or night and being very fatigue during the day as a result of being up all night. Maybe behaviour changes are happening such as fear, anxiety and a loss of control. Depression, hallucinations and significant sensory changes (e.g. reduced visual efficiency, hearing loss, and decline in somatosensory system). These can all be signs of early signs of dementia.

Recording loss of appetite and weight loss as these are common in the later stages of dementia. It’s important that people with dementia get help at mealtimes to ensure they eat enough. Many people have trouble eating or swallowing and this can lead to choking, chest infections and other problems.

Recording signs within the environmental as they may be contributing to behaviours some may include: physical environment such as the home or clinic that is too cluttered, distracting and difficult to navigate; a physical environment that is unfamiliar or too complex such that the person has difficulty interpreting the meaning of environmental cues and thus responding appropriately; presence of others during therapeutic sessions which may be distracting, confusing, and a sensory overload; communication patterns that are too complex and confusing.

2.3The first sign of dementia is usually loss of short-term memory. Other symptoms and signs are as follows: Word-finding difficulty, Forgetting names, appointments, or whether or not the person has done something; Difficulty performing familiar tasks, Personality changes, Uncharacteristic behaviour, Mood swings, Poor judgment, Confusion, disorientation in unfamiliar surroundings.

Diagnosing dementia and which type of dementia someone has, is important. It will ensure that people can get the right support, treatments and plan for the future. The most commonly used memory test is the MMSE (mini mental state examination), although there are a range of other tests available. Because dementia usually gets worse over time, these tests may be repeated, perhaps every six to twelve months, to see if there are any changes in memory.

Other tests, including brain scans and blood tests could also be requested. On some occasions your doctor may arrange an EEG (brain wave test) if they suspect a rare form of dementia.

2.4The impact of receiving a diagnosis of dementia on the individual could cause numerous of emotions such as; confusion, shock and being frightened and quality of life, e.g. fear, feeling of lack of control, loss of dignity, loss of identity, lack of involvement, invasion of privacy, fear of losing own home, inability to communicate needs and preferences; social e.g. loss of friends, loss of community involvement, difficulty in dealing with own finances, attitudes of others; impact on health, e.g. increased risk of falls, nutrition, personal hygiene, reduced exercise; increased likelihood of abuse, e.g. emotional, neglect, physical, sexual, financial, increased likelihood of injury or harm.

The impact of receiving diagnosis of dementia on the individual’s family and friend can be very life changing. The partner could maybe feel they lose a sense of intimacy and closeness with the person with dementia.

The person with dementia may have been the main earner in the home and income may be significantly reduced.

Family, friends and others find that they become socially isolated. After diagnosis, they may avoid other family members or friends because they do not know how or what to tell others. They may feel trapped, with very little opportunity to have any time to themselves.

There may be conflict within a family or circle of friends. Family and friends may stop calling by phone or visiting because they do not acknowledge or understand changes in the person with dementia. This would lead to the loss of a vital support network.

Some family friends and others significate to the person with dementia lose confidence as they try to take on a role for which there has been little preparation. This can lead to other problems such as depression or anxiety. Even after relinquishing their role they complain about a lack of confidence.

3.1A good care home will follow the principles of person-centred care. This approach aims to see the person with dementia as an individual, rather than focusing on their illness or on abilities they may have lost. By the time the person with dementia needs care; they’ve been stripped of a lot of their dignity, are surrounded by strangers and are very confused by the world around them, which can lead to problem behaviour. Person centred caring is about maintaining the person’s dignity. It’s about learning what things the patient responds well to, and treating them like a human being Instead of treating the person as a collection of symptoms and behaviours to be controlled, person-centred care considers the whole person, taking into account each individual’s unique qualities, abilities, interests, preferences and needs. Person-centred care also means treating residents with dementia with dignity and respect.

You can give a resident person-centred care when delivering care that is personalised and constructed specifically to a patient that is treated as an individual rather than a person with just a common type of illness. The approach of the management is rather centralised on preserving the person’s dignity and preservation of a quality life instead of simply administration of medications and following a set of routine management for the condition.

3.2To find appropriate activities to meet individual needs of a person with dementia requires creative thinking. As in other areas of dementia care, family are called upon to be resourceful in seeking meaningful recreation. Ideally, activities should; compensate for lost abilities, promote self-esteem; maintain residual skills and not involve new learning; provide an opportunity for enjoyment, pleasure and social contact, be culturally sensitive.

The physical environment can play an important role in improving the lives of people with dementia. Sometimes a few simple changes in a care setting can make a significant, positive impact on the individual.

Colour plays an important part in helping with recognition. Use the same colour for toilet doors through the setting. Choose bright colours that contrast well. Use pictures for signs as well as words (menus, communication cards, signs around the setting). Lighting can also play an important part in helping people with dementia. Ageing eyes need twice as much light as young eyes and people with dementia need even more. Make sure the individuals rooms are not an obstacle course. Always have clear pathways allowing easy movement. Noisy environments can create problems for people with dementia. Try to reduce/remove unnecessary background noise from TVs, radios and high levels of chattering.

Keeping occupied and stimulated can improve quality of life for the person with dementia, as well as for those around them. Activities can act as an opportunity for fun and playfulness. They can also encourage independence, social inclusion, communication or expression of feelings.

It is important to involve the person with dementia in the conversation, not cutting them off or talking to others as if the person is not there. Do not assume that someone cannot contribute to a conversation just because they have dementia. Time and support can help the person with dementia make themselves understood and remain involved in the conversation. Some ideas for aiding conversation can include using different prompts for conversation such as a past job or a favourite sports team, reading a newspaper or magazine together, or using technology such as online videos of old TV shows or events.

Exercise could include gardening, walking or swimming. Exercising together will be beneficial to the person with dementia and anyone accompanying them. Some exercises are appropriate for people with limited mobility, for example chair aerobics or a seated game of bowls. Exercise can still be beneficial in the later stages of dementia. Exercises at this stage could include changing position from sitting to standing, walking a short distance or moving to a different chair.

Even when other abilities are severely affected, many people still enjoy activities relating to music. Musical memory is often retained when other memories are lost. There are many ways to enjoy music, including listening, singing, following the rhythm and moving to the music. Evidence suggests that music can improve someone’s mood, behaviour and wellbeing. Physically responding to the music (through dance or movement to rhythm) can offer a chance for exercise and non-verbal communication. Favourite songs or pieces of music can also be powerful prompts for reminiscence. People with dementia can often remember the distant past more easily than recent events. Activities focusing on reminiscence can help improve mood and wellbeing, and promotes social inclusion and seeing the person as an individual with a unique life experience. It is a good way of helping relatives and friends stay connected as well.

There are many ways to initiate conversation and participation in reminiscence, including using photos, creating a life story book or using technology, for example watching memorable events (such as the Olympics, a royal wedding or the moon landings) on a computer or handheld device. Reminiscence should focus on the individual and their experiences; a person’s memories will have helped shape their present identity. However, it should be noted that not everyone will enjoy reminiscing about the past.

The fewer drugs someone with dementia has to take the better – both for their dementia and their general health. As soon as possible after diagnosis check with the GP to make sure that the person is not taking any drugs that they don’t need any more and that they are taking the lowest possible effective dose. 1 If any drugs are used to relieve behavioural symptoms make sure these are reviewed very regularly. 1 If you suspect that the person’s medication may be increasing their confusion or causing other 2 unwanted side-effects, tell the GP. Make sure the person takes their medication at the right time, 2 with box compartments or individual tablets marked with days or times. For more severe memory 3 problems, you may need to make sure that the person doesn’t overlook a dose or take an extra dose by mistake. You might even need to place medicines out of reach and out of sight as an extra 4 precaution. If the individual starts to forget how to take medication you may have to be prescribed a 5 liquid form.

Eating too little or missing out on essential nutrients will reduce a person’s resistance to illness and can make someone with dementia feel more confused. If someone refuses to eat a balanced diet, the GP may suggest alternatives, or may prescribe vitamins or supplements. If someone with dementia forgets to eat, they may need to be accompanied at mealtimes and encouraged to eat. They may even struggle with using cutlery to eat, in that case offer foods that can be eaten without a knife and fork, i.e. finger food. It is also very important to drink enough fluids. Dehydration is a health risk and can increase confusion in someone with dementia.

3.3Myths and Stereotypes related to dementia affects the individual because the dementia makes the person dis-attached from reality and often mistake such myths and stereotypes to be true. For many people, the fear of developing Alzheimer’s disease is high on the list of concerns about growing older. But when it comes to memory loss, what you don’t know can hurt you.

There are many myths that exist about dementia and they can be detrimental when it comes to the care that is given to people suffering from the disorder. Therefore, it is important to dispel these myths so that dementia patients get good quality care, which will help improve their quality of life.

Myth 1: People with dementia behave like children:
Fact: People with dementia are not childlike and should not be treated as children. The abovementioned myth results in caregivers talking down to them, which causes the person to respond with anger and disapproval, which in turn confuses the caregiver because they cannot understand the response. It is important to remember that a person with dementia has lived a long life full of experiences and wisdom. And one must treat them with respect and high regard. It is very important for them to feel valued and accepted.

Myth 2: People with dementia don’t know what they need or want and can’t learn new things. Fact: People with dementia are very clear about what their likes and dislikes are, even though they are sometimes unable to communicate them well. Like anyone else, they feel frustrated when people make decisions for them. Further, they are also able to learn new things. Some parts of their brain may not work well, but they have not lost their intelligence and capacity for thought and analysis.

Myth 3: Dementia is an inevitable part of aging.
Fact: Dementia is a medical condition and not an inevitable part of aging. The brain of a 115-year-old woman, when examined on her death, showed no signs of deterioration. Certain risk factors like high blood pressure, high cholesterol, diabetes, and obesity can contribute to dementia. Therefore, signs of dementia should be investigated and treated at the earliest.

Myth 4: There is nothing you can do about dementia once you have it. Fact: Although dementia is a progressive disease, there are steps that can be taken to slow down its advancement, and ways can be found to compensate for loss of cognitive abilities in the early stages. Medications are available to address dementia symptoms.

3.4The main priorities to overcome the fear of dementia would be to make sure that early diagnosis and access to quality information on the disease and the support services are at first hand.
Practical skills training for health care professionals working in this area, this will educate the workers and they will have more knowledge to pass on to the individual and their family and friends.

Individual care plans must reflect the unique needs of each person with dementia and the continuity of care for the duration of the disease. The autonomy and dignity of people with dementia must be respected at all times.

Involve outside professionals e.g. psychiatric services, memory services, physiotherapists, occupational therapists, dieticians, dementia advisors, advocates and any other health and social care workers.

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