Portfolio of Hope

1. What is Dementia?

Dementia is a term used to describe the ongoing decline of one’s cognitive functioning. It impairs the ability of sufferers to remember, think, make decisions, and reason, therefore interfering with their day-to-day life and effecting their ability to partake in their usual activities.

2. What are the 4 most common forms of Dementia?

• Alzheimer’s Disease

Alzheimer’s disease is primarily caused by an abnormal build-up of proteins (amyloid and tau) in and around brain cells. This build-up causes neurotransmitters, which are involved in sending messages between brain cells, to falter. Over time the result of this is the shrinking of the brain, with the first area to be affected being that which is responsible for memories. This is all as a result of the proteins, Amyloid and Tau, depositing plaques and tangles in the brain which ultimately leads to the brain cells being ‘suffocated.’

Whilst the cause of Alzheimer’s disease is evidently the build-up of proteins in brain cells, there are certain factors that increase the risk of one developing the condition, with age being the biggest risk factor. Research indicates that the likelihood of someone developing Alzheimer’s disease doubles every 5 years after the age of 65.

Family history is also considered to be a risk factor due to the inheritance of certain genes making one more susceptible to developing the disease.

Additionally, there are certain illnesses that are known to increase the risk of Alzheimer’s, with one example being Down’s syndrome. This is because the genetic fault that causes Down’s syndrome can also cause amyloid plaques to build up in the brain, the main cause of Alzheimer’s disease. Head injuries also put people at risk of developing Alzheimer’s, as does cardiovascular disease, hearing loss, and untreated depression.

Symptoms of Alzheimer’s disease are divided into 3 main stages.

In the early stages, the main symptom is memory lapses. Memory lapses can result in people forgetting about recent conversations or events, misplacing items, forgetting the names of places/objects, having trouble thinking of the right word, asking questions repetitively, finding it harder to make decisions, and becoming less hesitant to try new things. This stage can also lead to one experiencing mood changes, such as increasing agitation, or periods of confusion.

In the middle stages of Alzheimer’s, memory problems will likely worsen, with those suffering from the illness finding it increasingly difficult to recognise their family and friends. Other symptoms that may develop in this stage include increased confusion and disorientation (e.g., getting lost or not knowing what time it is), obsessive/repetitive/impulsive behaviour, becoming delusional (believing things that are untrue) or feeling paranoid/suspicious about loved ones, speech/language difficulties, disturbed sleep, changes in mood, and hallucinating (seeing/hearing things that are not there.)

The third and final stage of Alzheimer’s disease sees symptoms increasing in severity. By this stage, someone with Alzheimer’s will need intensive support to do basic activities, such as eating, washing, getting dressed and using the toilet. Their hallucinations and delusions might intensify, which, in some cases, can cause them to become violent. Other symptoms include difficulty eating and swallowing, difficulty changing position or moving around without assistance, weight loss, incontinence, loss of speech, and a significant decline in their short and long-term memory.

• Lewy Body Dementia

Lewy Body Dementia, much like Alzheimer’s Disease, is largely a result of proteins that form inside brain cells. Abnormal clumps of protein, referred to as ‘Lewy bodies’, build up in the parts of the brain responsible for major functions such as thinking, visual perception, and muscle movement. It affects the brain and these areas within it as the proteins interfere with signals sent between brain cells.

Lewy Body Dementia causes a gradual decline in cognitive functioning, namely causing problems with thinking speed, understanding, judgement, visual perception, language, and memory. Someone with the condition is likely to find everyday activities becoming increasingly challenging. This is because one might experience frightening hallucinations, whereby they see/hear things that are not there. People with Lewy Body Dementia might also notice a decline in their physical ability to do certain tasks. Many people with this type of dementia report experiencing slow movement, stiff limbs, tremors, and shuffling when walking. This can in turn lead to fainting, unsteadiness and falls, all of which can severely have an impact on the quality of one’s life.

• Vascular Dementia

Vascular Dementia, unlike Alzheimer’s Disease and Lewy Body Dementia, is not as a result of protein build up inside brain cells, but is due to reduced blood flow to the brain. This reduced flow is often due to the narrowing of blood vessels inside the brain, however it can also be a lasting impact of a stroke, where the blood supply to part of the brain is suddenly restricted/cut off.

In the early stages of Vascular Dementia, it can be difficult for someone to get a proper diagnosis since the symptoms experienced often overlap with those of depression, and therefore it can be wrongfully diagnosed as being such. Early signs of this condition, however, include changes to one’s mood/behaviour, difficulty understanding, concentrating, and planning, slowness of thought, and problems with memory and language (those this latter sign- memory and language problems- is less common in people with Vascular Dementia, being more concerned with Alzheimer’s’ Disease instead.) Over time, the symptoms, as described above, gradually worsen, with the later symptoms of the condition including the significant slowness of thought, feeling disoriented and confused, memory loss, and severe personality changes etc.

• Fronto Temporal Dementia

Similarly to both Alzheimer’s Disease and Lewy Body Dementia, Fronto Temporal Dementia is caused by the formation of abnormal clumps of protein inside the cells of the brain, mainly in the frontal and temporal lobes (front and sides.) As the clumps form, they suppress and damage the cells, resulting in them failing to work properly. This affects the area of the brain responsible for our ability to control language and behaviour, as well as the area that gives us the ability of being able to plan and organise. Though it has not yet been determined exactly why this happens, evidence suggests that it might be due to family history. Research indicates that 1 in 8 people who get Fronto Temporal Dementia will have or have had relatives who also suffer/have suffered from the condition at some point in their lives.

The initial symptoms of Fronto Temporal Dementia are centred around one’s behaviour and language (using words incorrectly, limited vocabulary, slow speech, forgetting the meaning of words etc.) In severe cases, some people lose the ability to speak and may become mute. Many people with the condition develop several other behaviours that are ‘out of character’ for them, such as being insensitive or rude, acting impulsively or rashly, losing interest in people and things, seeming subdued, losing drive and motivation, and seeming cold and harsh. In the later stages of the condition, people might also experience physical problems, as well as difficulties with their mental health. Such physical problems that someone with a Fronto Temporal Dementia diagnosis might experience include slow stiff movements, difficulty swallowing, and incontinence.

3. What functions of the brain are affected by Dementia?

• Executive function

The executive function of the brain is responsible for planning, organising, and completing tasks, as well as solving problems, setting goals, and making rational decisions. Someone with Dementia is unable to hold information in their memory long enough to enable them to successfully complete a task, such as making a decision.

• Vision

When the brain is damaged, as it is in people with Dementia, individuals with the condition may have problems with their vision. This is because to recognise things, such as places or faces, the temporal lobes must match up what we are seeing with memories of things we have seen before. As Dementia affects memory, this process is disrupted, which can lead to people finding it difficult to recognise things.

• Language

When Dementia results in damage to the temporal lobes of those with the diagnosis, their ability to understand the meaning of words is limited.

• Emotion and behaviour

Dementia can cause damage to the limbic system and the frontal lobes, areas of the brain that deal with emotions as well as rational thoughts and judgement. The issue is, when these parts of the brain are damaged, as they often are in people with Dementia, they may have difficulty processing their emotions. This can lead to inappropriate behaviour being displayed, because they are unable to react to things based on their emotions. As such, it would not be uncommon for someone with Dementia to, for example, laugh when they are told some sad news, or react aggressively to a threat which is not there.

4. What difficulties might an individual with Dementia face in their day-to-day living?

The many types of Dementia can have a profound impact on those who suffer with the conditions day to day lives. Seemingly easy tasks that we all take for granted, such as the basic acts of washing, getting dressed, eating, and bathing, can become extremely challenging for someone living with Dementia.

Whilst in the early stages of the illness people might simply need reminding to do things, such as eating, as their condition worsens, they may be unable to feed themselves at all. This means that people will need intensive help and support to carry out such tasks, therefore they may feel as though they lose their independence and sense of freedom.

Furthermore, as their Dementia progresses, one’s mobility/physical movement may become increasingly limited, with them requiring assistance to move even very short distances, such as from a bed to a chair, or to the toilet. This further enhances their sense of depleting independence and freedom.

With limited mobility, people in the later stages of Dementia are likely to spend a lot of time at home. However, their lack of concentration and ability to focus means that what were once enjoyable past times for them, such as watching the television or reading a book, are now impossible to do. This means that their brain is rarely stimulated, which can cause symptoms of Dementia to deteriorate at a quicker rate.

Dementia impacts on many other aspects of those suffering with the conditions day-to-day living, too. Aside from the things I have mentioned, Dementia can also impact upon one’s ability to drive, communicate, navigate, and manage their finances. They may also struggle to remember to take their medication. Because of all the struggles people with Dementia are likely to face, as I have identified here, many people with the condition are unable to live independently, as they pose too great a risk to themselves.

5. How might an individual’s Dementia affect others?

Dementia does not just have an effect on the person diagnosed, but on their family and friends too, meaning that relationships are likely to change. As people who suffer with Dementia are likely to need additional support, this responsibility may fall on the family and friends of the individual. This would put the people who are elected to help manage the individual’s condition under a lot of pressure, potentially requiring them to make changes to their lives to fit everything in.

Supporting someone with Dementia is an incredibly difficult thing to do, especially because their behaviour is likely to change. They might go from being a positive, upbeat person, to being irritable and upset. Even if you know that their behaviour is not really them, but their Dementia, it is still a difficult concept to adjust to. Carers may take it personally, in the same way that they might be offended if their loved one, for example, forgets their name, or forgets an important date. It is important that in these situations, people remember that there is nothing to get defensive about, for Dementia is an illness. People do not ‘choose’ it, it just happens. Regardless of knowing this, carers of people with Dementia are likely to experience grief for the loss of who their loved one once was. They are likely to also experience feelings of fear, and anger.

6. What are the possible interventions for Dementia?

Psychological interventions are commonly used in mild to moderate cases of Dementia. They consist of psychological therapies, often taking the form of structured group therapy. One of the most widely used therapies for Dementia patients is CST (Cognitive Stimulation Therapy.) This involves the delivery of supervised activities which aim to engage and stimulate service users. Other popular types of therapeutic intervention used for managing symptoms of dementia include CBT, reminiscence therapy, multisensory stimulation, aromatherapy, reality orientation, and validation therapy.

Pharmacological interventions are often used in the treatment of more severe cases of Dementia. Whilst being unable to cure the condition, administering patients with drugs helps to slow down the symptoms of Dementia, such as cognitive loss. The most commonly prescribed drugs to manage the symptoms of Dementia are Aricept, Exelon, Reminyl, and Ebixa, all of which make it easier for brain cells to communicate with each other, therefore working to reduce the symptoms of Dementia.

7. In what ways can others help an individual with Dementia to manage their illness?

One of the most effective ways to offer help to an individual with Dementia is to first do some research into the condition, so that you can gain some level of understanding regarding what it is they are going through. Knowing more about the condition will provide comfort to the individual who should feel less alone in their suffering.

It is important that people with Dementia feel listened to and understood. Whilst it can be frustrating when you know what someone is trying to say, but they just cannot quite get the words out, showing patience is essential. The last thing that people with Dementia need to feel is as though they are a burden on others, therefore you should actively provide reassurance that they are ‘doing great.’

Communication should be clear so as not to confuse people with Dementia even further. Ways in which people can effectively communicate non-verbally to Dementia patients is by maintaining eye contact, appropriately displaying facial expressions and body language relevant to the topic of conversation, and always having their face, and mouth, visible. To communicate effectively verbally, people must ensure they speak clearly and calmly, use short and simple sentences, speak at a slower pace than usual, and avoid raising their voice. It is also important to always treat people with Dementia with respect, therefore one should refrain from talking to them as if they are a child, or as though they are not there. By following the recommendations, this can prevent people from feeling intimidated or anxious about conversations, instead encouraging an open dialogue formed from a place of trust.

Practical support should be offered to people with Dementia. This can be as simple as showing them how to do something that they cannot remember how to do or helping them find something they have lost. It could also involve helping with everyday tasks, such as shopping and gardening. The key word, however, is help. It is important to do things with them, rather than for them, as taking away all responsibility from them can lead to a decline in their cognitive functioning. Carers should therefore aim to maintain their loved one’s independence as much as they can, allowing and encouraging them to do what they are able to do, for themselves.

Another way for others to practically help people with Dementia, is to put signs on things to aid them in remembering where they are. For example, a sign on the toilet that states that it is just that, a toilet, can be of enormous help to someone with Dementia who gets easily confused.

As well as providing practical help and support, psychological support should also be provided. Psychological support might involve providing reassurance and comfort to someone with Dementia, showing them love and affection, and providing companionship.

8. What are some local resources and treatments available to individuals experiencing Dementia?

• Doncaster Dementia Roadmap

Doncaster Dementia Roadmap provides trustworthy information from reliable sources about Dementia. It also provides details regarding local services, support groups and care pathways that are accessible to all.

• Alzheimer’s Society Doncaster

The Alzheimer’s Society is a national charity with a branch in Doncaster. It provides a range of support groups and activities to help both people with dementia and their carers. They have cafés dedicated to hosting these groups and activities, with their ‘Dementia Café’s’ located in Cantley, Conisbrough, and the town centre. They also have singing group. All their services aim to bring people together whilst encouraging them to engage their brains in productive ways, such as by singing.

• ‘Helping Hands’- Home Support.

Helping Hands is one of the UK’s leading dementia care providers, and their Doncaster branch certainly lives up to their renowned high standards. With over 30 years of experience supporting people with dementia in a home environment, their service involves a carer visiting the patient at home to assist with their daily tasks and help them to manage their routine. This could involve helping with the housework, preparing meals, assisting with personal care, administering medication, or driving to and from appointments. Receiving treatment at home rather than moving into a residential care home setting is a much less stressful process, for both the patient and their family, yet it is equally as effective at delivering quality care.

• ‘Doncaster Dementia Garden’- Sensory Stimulation Therapy

The ‘Dementia Garden’ in Balby, Doncaster, is a stimulating, relaxing and safe environment for people living with dementia, as well as their carers, to enjoy. It is a multi-sensory space, created in such a way to prompt memory recall by appealing to all the senses. This is an example of sensory stimulation therapy, whereby the aim is to help people with Dementia reconnect with the world around them in a sensory-rich setting. This can provide service users with a sense of heightened self-esteem, allowing them to experience an overall improvement in their wellbeing.

9. Why might a person with Dementia be adversely affected by the unconsidered actions or words of others?

Describing Dementia in a way that is inaccurate can lead to stereotypes forming which can, in turn, result in unwanted stigma being attached to people living with it. This can make it harder for them to feel understood by society, as they may feel as though people do not know what dementia really is.

Likewise, treating someone with dementia in a patronising way, whether that be by speaking to them like a child, or ignoring their right to have an opinion, can cause people with dementia to feel as though they are misunderstood to an even greater extent. They might even feel segregated from wider society, feeling as though they ‘don’t fit in.’

Aside from being harmful to people already diagnosed with dementia who may experience a heightened sense of loneliness as a result of such misinformation being spread, it can also negatively impact upon everyone. If, for example, symptoms are misreported, people will not know what early warning signs they should be looking out for, and therefore even more cases of dementia would be at risk of going undiagnosed. This is extremely problematic since early intervention is key when treating dementia.

Another way in which people with dementia can be adversely effected by others is if they are not shown respect. As people with dementia often require intensive support to complete basic but very personal tasks such as getting dressed, washing, going to the toilet etc, a certain level of dignity must be displayed. Being unable to do things for themselves can lead to patients feeling a sense of shame and embarrassment, therefore it is important for carers to ensure that they make them feel as comfortable as possible in what can be quite a distressing environment for them to be a part of.