Dementia is caused by damage in the brain, and is characterised by memory loss and difficulties with thinking, problem solving, movement co-ordination or language. It can also cause a person to become disorientated in space and time and to experience hallucinations, a decline in communication skills and personality changes. These symptoms also make it difficult for people with dementia to learn new things and retain newly acquired information. The most common cause of dementia is Alzheimer’s disease, which is progressive. Proteins build up in the brain, forming “plaques” or “tangles”. These cause the loss of connections between cells, and eventually nerve cells die and brain tissue is lost. People with Alzheimer’s disease also do not have enough neurotransmitters, which are chemicals used to transmit messages.
Vascular dementia is caused by a range of disease of the blood supply to the brain. Atherosclerosis is when fatty deposits build up in blood vessel walls. This causes them to harden and narrow, reducing blood flow to the brain. When brain cells do not get the oxygen and nutrients they need, they start to die. Pick’s disease or frontotemporal dementia is caused by nerve cells in the frontal and/or temporal lobes dying. The connections between these cells change, and there is a loss of neurotransmitters. Over time, the frontal and/or temporal lobes shrink. Lewy bodies are tiny round protein structures in the nerve cells of the brain. The cause of these or how they cause dementia is unknown. There is also a loss of neurotransmitters, and over time, the nerve cells progressively die and brain tissue is lost.
People with dementia experience different types of memory impairment. A decline in memory means that people will often struggle to recall recent events or forget messages, routes or names. They may repeat themselves or ask the same questions repeatedly. They may forget how to do things, such as how to use cutlery, tie shoelaces, get dressed or play chess. Difficulties finding the right word, or understanding the meaning of words, can affect communication. Losing the ability to read or to interpret signs, as well as the person being unable to understand what others are saying can have a big impact on communication. Losing reading and writing skills not only impacts on communicating with others, but can also lead to confusion. People with dementia may no longer understand the normal flow of conversation and might interrupt or ignore people.
Changes in behaviour are common in people with dementia. They may repeat an activity over and over, pace up and down, or follow people around. Sometimes people with dementia can shout, scream, or become physically aggressive. They can become restless and may wake up during the night. A lack of inhibition can mean that somebody with dementia might undress inappropriately, be rude or display inappropriate sexual behaviour. People with dementia may hide and lose their possessions. They might be also suspicious of others, thinking that somebody has stolen an object they have misplaced, for example.
People with dementia can struggle with mental processes such as reasoning. This can lead to confusion and difficulty with many everyday tasks. Being unable to weigh up all of the facts to make a sensible decision can have a huge impact on a person’s life. Many people with dementia will lose skills which they used to have, whether this be playing a musical instrument, driving or decorating. Abilities of people with dementia can fluctuate day to day. For example, they might be able to recognise a relative some days, but not others. Sometimes they might be able to write, whereas other days they might not.
Dementia can affect the areas of the brain responsible for balance and movement, causing movement difficulties. People with dementia may walk more slowly, be only able to walk for short distances, or struggle to get up from chairs. They might need support to walk, or use a cane or a wheelchair. People with dementia might find it difficult to walk outside or on uneven surfaces and may be fearful of stairs or hesitant while walking through doorways.
Stimuli including touch, light, heat and sound waves are input through the sensory organs. This information is encoded into our memory system by the brain. Information can be encoded in terms of what a printed word looks like, what a word sounds like, or what the word means. This information then has to be maintained. This is thought to happen in working memory (when information is stored for a maximum of 20 seconds) by electrical signals travelling through neurons in a loop.
The hippocampus and the frontal cortex filter the information and decide if it will be stored in long term memory. If so, it is thought to be stored in some proteins. The information is stored in different parts of the brain, but we do not know exactly how this works. To recall a memory, the information must be retrieved. This is triggered by a retrieval cue. The brain reconstructs the memory, putting together what may have happened by retrieving the information that the brain stored and could recall. Memories can be reconstructed incorrectly, and this can be influenced by the retrieval cue (such as a leading question).
In people with dementia, the hippocampus may be damaged. This can make it much more difficult for the person to learn new information or to form new memories. The person might not remember what they did earlier on that day, or they might forget what they have said moments before, causing them to repeat themselves. The hippocampus is used when memories are retrieved, particularly memories which were formed more recently. This is why many people with dementia still have their childhood memories but cannot remember what they have done that day.
When damage spreads through the brain, such as in people with Alzheimer’s disease, more areas in the brain become affected. The brain slowly shrinks and earlier memories are lost. The left hemisphere is responsible for semantic memory (the meaning of words) and language, so when it is damaged, the person might struggle to find the right words. The temporal lobes match visual input with memories of previous experiences, so when this is damaged, the person might struggle to recognise familiar faces and objects. Sometimes, a person with Alzheimer’s disease might know who the familiar person is once they hear their voice, because hearing pathways are separate.
When a person’s right parietal lobe is damaged, they may struggle to judge distances, causing problems with navigating stairs, for example. The damage can spread to the frontal lobes, causing somebody with Alzheimer’s disease to struggle with planning, organization and decision making. This might include problems with tasks such as following a new recipe. In people with Alzheimer’s disease, many abilities are not lost, especially skills learned a long time ago. Skills such as playing a musical instrument depend on procedural memories, which are stored deep within the brain. These skills are often maintained for a long time in people with Alzheimer’s disease.
People with vascular dementia display a wider range of symptoms than other types of dementia. Sometimes a stroke can cause vascular dementia, if the blood supply to the brain is suddenly cut off and a large area of tissue on one side of the brain dies. The person may struggle with planning, concentrating, thinking, or with their memory. They may also have problems with speech or vision, or have weakness on one side of the body. Several mini-strokes can also lead to vascular dementia, each one causing a small patch of brain tissue in the cortex to die.
The symptoms depend on where the tissue is lost. If this is in the hippocampus, the person might have problems with their episodic memory (personal memories of specific events). Damage in the frontal lobe can cause difficulties with executive function (problem solving, setting goals, making decisions, and following sequences to complete tasks). This might mean the person struggles to make cheese on toast, for example, because they cannot organise what they need to do.
Vascular dementia can also follow several mini-strokes over time. Each mini-stroke creates a small patch of dead brain tissue, called an infarct, in the cortex. Early symptoms can be very specific to where the tissue is lost. For example, problems with episodic memory can be caused by an infarct in the hippocampus, and problems with executive function can be caused by an infarct in the frontal lobe.
When a person has frontotemporal dementia, their temporal and/or frontal lobes shrink. Damage to specific areas causes different problems. The person might become withdrawn and lose motivation, or they might lose their inhibitions. This could cause them to take their clothes off inappropriately, or make inappropriate comments. When the frontal lobes are damaged, the person might repeat themselves constantly.
People with dementia with Lewy bodies have less shrinkage of the brain than people with Alzheimer’s disease or frontotemporal dementia. The Lewy bodies form in the cerebral cortex, brain stem and limbic system. Common early symptoms are problems with attention and vision. Lewy bodies in the brain stem can also cause difficulties with movement.
Sometimes people can have other conditions which might cause symptoms similar to those of dementia. Depression can mean the person’s mood is irritable, sad or hopeless. They might be agitated, restless, or tired with no energy. They might lose interest or pleasure in activities that they used to enjoy. Sometimes depression can cause disturbances in sleep, like early waking, along with memory or concentration problems. It can cause a person to eat too much or too little, to have aches and pains with no physical cause, or to experience suicidal thoughts. However, depression usually develops over weeks or months, which is faster than the onset of dementia.
People with dementia often experience problems with reasoning, speech and orientation in time and space, which depression would not usually cause. If a person with depression struggles to remember something, they will often remember when prompted, but people with dementia often try to cover up their forgetfulness. People with severe depression may struggle with their memory and reasoning due to poor concentration. These symptoms disappear with treatment, whereas this will not happen in people with dementia. People with depression and dementia can lack motivation, but people with depression are likely to show other symptoms of this, rather than other symptoms of dementia.
People with infections, such as urinary tract infections, can also have symptoms which may appear similar to those of dementia. The pain caused by UTIs can cause people to become depressed or agitated, especially if they cannot communicate that they are in pain. Infections can also cause dizziness, confusion, hallucinations or memory problems, which could be mistaken for dementia. However, the confusion caused by infections is acute and comes on suddenly with the onset of the infection, rather than over a much longer period of time, as experienced by people with dementia. Once the infection has been treated then any agitation and confusion will disappear, which is not the case with dementia.
Drugs including prescribed medications can have side effects which may mimic those of dementia. These can include confusion, dizziness, problems with movement or speech, difficulties with memory or thinking, agitation or hallucinations. People with these symptoms may appear to have dementia. This is more likely to be the case in older people, because they metabolize medication less efficiently, causing a build up of the drug. However, once the person is on the correct type and dosage of medication, the symptoms should resolve themselves.
People may become confused for reasons other than dementia, such as changes in their environment. Moving home, having different support workers or changing activities could cause a person to be confused. These changes could also cause depression, which in turn can mimic dementia. Once a person becomes more settled in their routine then the symptoms should disappear.
Alcohol abuse can destroy brain cells responsible for memory, balance, thinking and decision making. People that drink heavily may also have an unhealthy diet low in thiamine. A severe deficiency in thiamine can lead to Wernicke-Korsakoff Syndrome, which causes symptoms such as memory loss, confusion and agitation. This could mean the person appears to have dementia. However, a history of alcohol abuse might suggest that this is not the case. Treatment for Wernicke-Korsakoff Syndrome can reverse the symptoms, which would not happen if the person had dementia.
Vision problems caused by conditions such as cataracts or age-related macular degeneration can cause people to become confused and struggle to read or to recognise faces. This can be scary and can mean the person becomes depressed or agitated. Macular degeneration can come on rapidly, furthering the possibility that the person’s symptoms could be viewed as those of dementia. Once a diagnosis is confirmed and symptoms are treated or the person is supported to manage their condition, it would become apparent that the person does not have dementia.
There are many reasons why the abilities and needs of an individual with dementia might fluctuate. In people with Alzheimer’s disease, as the condition progresses, the person’s abilities decline over time. People with dementia often have lucid moments, where they may suddenly be more able to communicate or do certain things for a short period of time. People with Dementia with Lewy bodies are more likely to experience fluctuating abilities.
Medication changes can cause withdrawal symptoms such as confusion, dizziness or flu-like symptoms. Side effects of the new medication, such as those mentioned above, may be more apparent until the body gets used to this medication. These can mean the person is more agitated or confused than normal and they might need extra support until the symptoms have eased. Sometimes a person may have been on a strong medication for a long period of time, and once this is changed, their abilities and needs can change. Several people that I have worked with have been more able to make and communicate their decisions, more mobile, alert and independent after certain medications were reduced or withdrawn.
Abilities can often be mood dependent – when anyone is in a good mood, they are more likely to want to do things and to communicate more effectively. Being less able to communicate or having to rely on others for support can cause frustration or agitation, particularly where support with personal care is required. Once agitated, the person might be less able to do things independently due to the way they are feeling. People with dementia are often awake at night and they may struggle with their day/night orientation. This can lead to them being tired during the day, affecting their cognitive abilities, communication skills and co-ordination.
The support a person receives can impact on their abilities and needs. If there is a lack of continuity in the support provided, the person can become unhappy and more confused, causing their abilities to change. It is important for the person to build trust and familiarity with their support workers. Likewise, better support and improved continuity might mean that the person becomes more independent as they are more settled and have better routines. Developing effective communication methods can mean the person becomes more able to communicate with those around them. Different ways in which the person is supported could also result in fluctuations in abilities while they are supported by different support workers. If a person is experiencing abuse committed by anyone around them, they are likely to become depressed, confused or agitated, meaning their abilities and needs could change.
Early diagnosis can help reduce the anxiety experienced by the person which is caused by not knowing what is causing their symptoms. The diagnosis can help the person to feel empowered and they can learn about their condition and what their future may hold. The person or their family might be in denial about the diagnosis, refusing to accept that they have dementia. The diagnosis can make a person feel as if their life has been turned upside down. They are likely to be scared and might feel like they have lost their identity, dignity and control over their life.
They may be scared of losing their home and their privacy and dignity. Sometimes people may be viewed or treated differently by others once they have a diagnosis, including their family and friends, or they might be worried about this happening. However, early diagnosis is important because it enables access to support groups. The person can gain advice on how to manage their condition while living as full a life as possible. The support groups introduce people who are in the same situation, so the person and their family and friends can build a support network. The support group can also provide specialist information related to the person’s condition and their symptoms, with a real understanding of how dementia impacts the life of the person and their friends and family.
If the person is diagnosed with dementia early, the underlying cause can be discovered and they can access treatments for their condition. Alzheimer’s disease and dementia with Lewy bodies gradually damage the brain. Medications are available which improve symptoms by increasing the function of the remaining healthy brain cells. These medications do not slow the progression of the disease but they do improve symptoms, which improves quality of life. Other medications can also be reviewed, as they could be affecting cognitive functioning.
Risk factors such as smoking, being overweight, high blood pressure, high cholesterol and poorly controlled diabetes contribute to vascular dementia. The presence of these risk factors can also make Alzheimer’s disease worse. Early diagnosis might mean that more attention is given to keeping these risk factors under control, which could slow the progression of vascular dementia or Alzheimer’s.
A diagnosis is essential for organising support, including day services, respite care, occupational therapists, dieticians, mental health teams and speech and language therapists. This can not only improve quality of life for the person, but give family and friends a break from supporting the person. Early diagnosis means the person will get the support sooner, possibly improving their long term outcome. A diagnosis will also make financial support accessible to the person, such as Personal Independence Payment. It may make it easier for the person and their family to receive advice regarding their finances, as well as financial support such as Carer’s Allowance.
An early diagnosis will give more time to plan for the future to ensure that everything is in order. A Lasting Power of Attorney may need to be arranged if the dementia is progressive. Safer ways of taking medication can be set up, such as blister packs, for example. This will help the person to take their medication correctly, and can make it simpler for family and friends. This can empower the person, increase independence and reduce the risk of medication errors which could cause health issues. If a person is already diagnosed with dementia, then nurses and doctors will be aware of any difficulties they may encounter and will work harder to communicate with the person effectively.
It is essential to record accurately to aid early diagnosis. Recording anything that is unusual for the person or any possible symptoms of dementia, in detail, will give a good picture over time of any changes in a person’s ability or memory. It is important to have agreed methods of recording and reporting within the organisation and for all employees to follow these. These might include verbal, written and electronic communication. Information must be kept confidential and all records and reports must be timely and accurate. Reporting might include communicating with colleagues, key workers and line managers, GPs, nurses, occupational therapists, physiotherapists, speech and language therapists and specialist consultants. Records must be legible, factual, dated and signed.
Recording all of these symptoms will help to see if there is a pattern and reporting them to the person’s GP can obtain a referral for diagnosis as soon as possible. When a diagnosis is made, they may use the support records, as well as looking at times where concerns have been reported to the relevant bodies. It is important that all records are detailed to ensure that an early, correct diagnosis can be made. Before and after diagnosis, detailed records will show if a person’s symptoms are improving or worsening over time. It is also essential to record accurately to highlight any risks that arise and to report these.
This ensures that the risks can be addressed, reducing the likelihood of harm coming to the person and their support workers. When a support worker records and reports a risk they encounter to the relevant person or authority, they are also protecting themselves in the event of legal action arising. The organisation would be required to prove that they have agreed methods of recording and reporting in place and that they ensure that these are followed. Having robust support plans and risk assessments in place should mean that they hold up to scrutiny in court. This would mean that employees would be liable for their own actions if they did not work in accordance with them.
Person centred care is support planned and delivered around the needs of the person. This means involving the person as much as possible, as well as any other people that they wish to be involved, such as family, friends and other professionals. Support workers will be matched to the person being supported, who might be involved in recruitment. The person should be as involved as possible in choosing where they wish to live, who they want to live with, who they want to be supported by, what they want to do each day, what and when they eat and drink, how they are supported with day to day activities, etc. The person will be supported to be as independent as possible and staff will be trained to meet the needs of the person. Support workers will always respect the dignity, privacy and rights of the person.
They will work to ensure a holistic approach, meeting all of the person’s needs, including religious and cultural. They will support the person to develop and maintain meaningful relationships and will build a trusting, professional relationship with the person. Support workers will have a positive approach, focusing on what the person can do, what their strengths are, and seeing the person as an individual rather than by their condition. They will work within guidance and legislation, act in the best interests of the person and work to safeguard them from abuse. A multidisciplinary team will often be involved, to support the person in all areas of their life in the best possible way.
Non person centred care is the opposite of all of this and is based on a more institutional approach – which is easiest for the staff or the organisation, what fits in best with the other people who live there, or which is cheapest. Non person centred care is more likely to occur in large group homes, though can happen anywhere. Carers might be very limited by time or resources. Staff may subscribe to the biomedical model of health. The biomedical model focuses on the person being physically healthy, as in having an absence of physical illness. It does not consider wellbeing as a whole, ignoring social and psychological factors. This way of thinking means all of the factors outlined above could be ignored, because staff might think the person is well supported just because they are physically healthy.
There are many techniques which can be used to meet the fluctuating needs of the person with dementia. The reality-orientation approach is a type of therapy which reduces confusion and helps the person to understand their surroundings. Information relating to time, place, a person, etc. is presented and repeated regularly. This might be clocks, schedules for the day or a board showing the date, which is reinforced using prompts in conversation. This is helpful because people with dementia may forget what day/time it is, where they are, or who they are with.
The validation approach means seeing the world through the person with dementia’s eyes and trying to enter their reality, rather than bringing them back to our reality. This sometimes means not challenging their reality – doing this would often just lead to more stress and confusion. This approach improves the person’s self esteem and can mean they feel more settled. The validation approach subscribes to the idea that there is a reason why people with dementia do and say the things they do, and that we should validate these things and try to understand them. The behaviours are attempts to communicate. It says that we must empathise with the person and try to understand what they are trying to express.
The validation approach theorises that the person is expressing things which they have suppressed for many years. Expressing these feelings reduces the intensity of them and enables the person to communicate more. It is based on the idea that when a person has severe short term memory loss, they revert to the more familiar past. This is thought to be to due to having less control over the present, to relive past experiences or to resolve unfinished conflicts. This approach reduces stress experienced by the person with dementia and encompasses the holistic approach, focusing on the person’s dignity and happiness. This often results in the person displaying less behaviours which challenge.
Using the right aids and assistive technology can help carers to meet the changing needs of a person with dementia while maintaining their dignity and independence. Assistive technology such as pressure sensors, door alarms, calendar clocks, talking photo albums, reminder messages and personal alarms can help family or support workers to meet the variety of changing needs of the person with dementia. Changing the environment to meet the needs of the person might include fitting hand rails, ramps or different flooring such as non slip flooring. Practical aids to help the person be more independent are useful, such as touch sensitive lamps, kettle tippers, adapted cutlery and non spill cups. Equipment for personal care, continence and maintaining dignity might include dressing aids, raised toilet seats, bath seats, commodes and continence pads. Some mobility and transfer aids are walking frames, wheelchairs, hoists, transfer turntables and chair raisers.
Working with the person to find the best combination of aids and techniques is important as part of a person centred approach. Support workers should use reminiscence techniques such as discussing old pastimes, looking through photo albums, watching old films or listening to music can help stimulate a person’s memory and enhance their quality of life. Alternative therapies such as aromatherapy and massage can mean the person feels more relaxed in what can be a stressful, confusing world. It is important to address sensory needs, whether this is through touch, smell, activities such as swimming or use of sensory rooms, etc. Using effective communication is essential for person centred support. Support workers should be aware of their verbal and non verbal communication, using techniques such as physical prompts where appropriate. As previously discussed, needs and abilities can fluctuate on a daily basis so different techniques might be useful on different days or with different people.
Myths and stereotypes related to dementia can have a big impact on the individual and their carers. Some of these stereotypes are that people with dementia are aggressive, that they do not have rights or that they do not understand anything. Some people assume that people with dementia automatically lose their independence so cannot drive or be involved in decisions. This could mean that people are automatically excluded from being involved in decisions regarding their support, which is not person centred. The person’s independence might be compromised as they might not realise that their diagnosis does not prevent them from doing things, including driving.
These stereotypes can lead to social isolation for both the person and their carers in attempt to avoid coming into contact with people who hold these beliefs. Negative interactions with professionals such as GPs can negatively impact the person’s self esteem and dignity, as well as that of the carer. This in turn may mean that the person struggles to access the services which they need, or avoids seeking access to these services in fear of discrimination. A lack of access to services can also affect the carer because they can be left to care for the person without any respite or support network around them. The involvement of professionals such as occupational therapists, for example, can greatly improve the lives of both the person and the carer. All of this can negatively impact on the person’s behaviour, further affecting their quality of life (and that of the carer).
Individuals and carers can be supported to overcome their fears through person centred planning. Support to do this can empower the individual to be in control of their life rather than fearful about what will happen to them. This support could come from advocates, charities, support groups, friends, line managers, etc. Carers are likely to be less scared and more informed about how they can effectively meet the person’s needs to improve their quality of life. Information about accessible services can demonstrate to the person with dementia that they can still be supported to live a full and active life. They can choose which services they would like to use and can see what is on offer, which might be in contrast to views they already hold about care providers.
This information can ease the fears of carers, particularly where family carers are involved, because they may feel more at ease when they know that a wide range of person centred support is available. Where an organisation is providing support, training can help the support worker to feel more informed and confident in their ability to provide person centred care. This can ease any fear which the person has, along with supervision meetings where they can discuss their development. Team meetings are also helpful, because the team can discuss their ways of working and address any issues that they have come across. Support groups and organisations can greatly help to ease the fears of both the individual and their carers, not only by providing practical advice and support, but through moral support too.
Courtney from Study Moose
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