Dementia support hub

Dementia is an umbrella term used to describe a collection of symptoms that can include significant memory loss, short term memory loss, behavioural changes and problems with coordination – although symptoms can vary widely.

There are over 150 types of dementia, but the five most common in the Western world are:

Alzheimer’s Disease –

Alzheimer’s Disease is one of the most well-known types of dementia. It was first discovered by Dr Alois Alzheimer in 1906, when he noticed changes to the brain tissue in a deceased woman who had an unknown mental illness. Alzheimer’s Disease creates changes in the brain’s chemistry. The first symptom is usually short term memory loss or ‘forgetfulness’. As the disease progresses, “plaques” appear on the brain, destroying brain cells resulting in long-term memory loss.

A helpful analogy is to think of the brain as a network that helps us process thoughts, feelings, movement and communication. Plaques on the brain can cause breaks in the connections of our brain’s network, resulting in loss of memory. This process can also affect how a person understands the world and can cause behavioural changes.

Lewy Body Dementia –

Lewy Body Dementia is often linked to Parkinson’s Disease, as both affect similar functions in the body. The disease lays down plaque on the pathways to the brain in the same way Alzheimer’s does, breaking connections in our brain’s network and affecting memory, speech and coordination.

One of the most common symptoms of Lewy Body Dementia is hallucinations, which are caused by damage to the optic nerve in the eyes. Hallucinations are not always bad for the person experiencing them (some can be pleasant or positive), but they can be confusing or scary. Hallucinations are often triggered by shapes and patterns. It’s important not to deny a person’s hallucinations, as this can cause more confusion and be unsettling for the person experiencing them. Instead, it’s best to validate a person’s experience and offer comfort.

Vascular Dementia –

Vascular Dementia is commonly linked to heart and circulatory disease. It can affect a person’s speech and memory, and can be present in any part of the brain. This form of dementia often occurs following a series of strokes that damages brain cells through oxygen deprivation. Vascular Dementia doesn’t happen to everyone who has a stroke, it occurs only in cases where the stroke has destroyed the brain cells and broken neurological pathways.

Korsakoff’s Syndrome –

Korsakoff’s Syndrome is usually brought on by excessive alcohol consumption. There is some disagreement amongst medical professionals as to whether it is technically a type of dementia or not, but there are definite similarities. Common symptoms include memory loss and behavioural changes. Korsakoff’s Syndrome is linked to the brain not getting enough Vitamin B, an essential vitamin which supports brain function, as excessive alcohol consumption can prevent absorption. It was initially believed that Kordakoff’s Syndrome only affected people who had drunk excessively for prolonged periods of time, but more recent research has suggested it can also develop as a result from binge drinking.

Frontal lobe dementia –

Frontal Lobe Dementia is most commonly associated with changes in a person’s behaviour. This is because the front of our brain (the frontal lobe) is responsible for our analytical and logical thinking, so when damaged it can impact our ability to process emotions.

A helpful analogy is to imagine a set of traffic lights. The red light represents our primary emotions (happiness, anger, frustration) which are triggered by adrenaline. These emotions put us into survival mode and create a fight, flight or freeze response. The amber light represents our ability to think about the potential consequences of acting on our primary emotions. The green light is when we’re in a mindful state and able to observe our thoughts, rather than being reactive. Damage to the frontal lobe can stop the amber light working. This means when faced with a red light (our primary emotions), the ability to regulate a response is reduced or removed and may result in behaviour that seems strange or inappropriate to others. Those with Frontal Lobe Dementia may experience this lack of an amber light all of the time, or only some of the time, making behaviour unpredictable.

Early-Onset Dementia –

Dementia is not a disease that is limited to older people. Early onset dementia can develop in people as young as 30 – though this remains rare. The causes of early onset dementia are not entirely known. Symptoms include loss of short term memory, difficulty with sequencing and behavioural changes.

There are no ‘standard’ stages of dementia, as each type of dementia has a unique progression and symptoms can develop at different times. However, common symptoms include memory loss which becomes more frequent or prevalent over time, behavioural changes, and trouble with sequencing or communication. It is helpful to work with each person on a case by case basis and address their individual needs to ensure they receive the best support and care possible.

‘Normal aging’ is a natural process which occurs as a person’s brain wears out. As we age, cells don’t reproduce as quickly which causes things to slow down. Dementia is an umbrella term for brain disease which can result in short term memory loss and behavioural changes.

The experience of aging can be different for everyone and getting older doesn’t mean you will develop organic diseases. By taking care of yourself with a balanced diet and exercise you can protect yourself from natural aging and the onset of dementia.

The early signs of Dementia often include short term memory loss, however, these symptoms are often associated with natural ageing and it can be difficult for GPs to unpick the difference between natural brain wear and dementia. Changes in personality or behaviour, communication and sequencing can be a subtle way to diagnose dementia in a loved one.

Dementia can affect how people communicate verbally, but brain changes aren’t always consistent, some days a person may struggle and some days they may not. People with dementia can still read but may not understand what they are reading. A person could be less tolerant, less able to make sense of the environment and noises, and may show signs of emotional inability, or be very happy, over sensitive, or seek attention. Early dementia could also affect a person’s sequencing, for example the order in which we do things such as getting dressed. People may not remember how to eat or the order in which to do simple activities.

Yes, you can hallucinate with dementia. It is far more common in people with Lewy Body dementia than any other type. Depending on the part of the brain, people can experience visual, audio and sensory hallucinations that can be linked to other mental health issues, such as delirium or infections such as UTIs. Another altered reality could be the person seeing themselves as a young again, however, this is not a hallucination, this is simply how someone sees themselves in that moment, so in this instance it’s best to go along with their reality or you may upset or confuse them further.

For many people, the first step to diagnosing Dementia is visiting their GP or being referred to a specialist clinic following hospital admission. If a person shows signs of having Dementia, such as forgetfulness or confusion, they will be referred to a memory clinic for blood tests and cognitive tests and to exclude what else it could be.

You can also book an appointment at a memory clinic yourself if you feel you or a loved one is showing signs of Dementia.

Although there is currently no cure for dementia, there are various approaches to treating the disease. Treatment options depend on the type of dementia, a person’s symptoms and their individual needs.

There is medication available which can treat Alzheimer’s Disease and help slow its progression down.

Vitamin B can be used to help manage symptoms of dementia in those with a vitamin B deficiency. This is often prescribed to people living with Korsakoff’s Syndrome as excessive alcohol consumption can limit the absorption of vitamin B.

Adapting living space to include minimal patterns and mirrors can help to reduce the likelihood of hallucinations in those who suffer from them (such as those with Lewy Body Dementia).

Wider treatment of dementia is often based around the individual needs of the person, as every case is unique. Other ways to manage the disease and improve quality of life include sensory experiences such as aromatherapy and music therapy. These can boost a person’s wellbeing and improve symptoms of anxiety and depression.

Dementia can affect day to day living in many ways, each person’s experience with Dementia is unique and not everyone with Dementia will experience every symptom. Dementia can cause people to have short term memory loss, a loss of control, behavioural changes and often frustration as they can no longer perform basic tasks or routines as well as they used to.

As the logical part of the brain declines, people living with dementia may experience the world on a more emotional level. This can mean that a person seems more reactive, readily expressing both positive and negative emotions. A helpful way to understand this is that the logical part of the brain (the X) anchors us and gives us a rational sense of what’s going on in the world. As dementia progresses the X is compromised and those anchors loosen, which means people living with Dementia can experience the world differently.

Some common emotions include frustration or paranoia as a person struggles to understand what’s happening around them, but can also include positive emotions such as joy and excitement. In some cases people can feel grief but struggle to resolve it or understand why.

Certain types of Dementia such as Lewy Body Dementia (and associated illnesses such as Parkinsons) can affect the motor cortex and sensory input, as pathways to the brain become damaged people may struggle with coordination, balance and control. This can mean that people are more prone to shuffling, their balance control can be compromised and their motor senses are not as responsive.

Sometimes, without meaning to, we can add to the impairment by outpacing people which can put pressure on them to move faster. This can increase the risk of them losing balance and falling and can damage their confidence for not keeping up.

A person with Dementia may experience difficulty communicating, the way in which this happens and to what extent depends on the type of dementia they have and their unique experience.

As a result of damage, they may not recognise things as they are and may struggle naming things, items or even loved ones. People with dementia often have an internal dialogue because they can’t get words out, this leads to the person expressing how they feel which can be different to how we are used to seeing them react to certain situations. Some people may talk in a monotone, may not use many words and some may miss social cues – such as please and thank you.

If the dementia affects their frontal lobe, more swear words might be used. When people have ‘lost’ their language all communication is expressed physically or via their behaviour, they want to be heard, validated, loved or simply hugged. It’s best to gauge the situation of your loved one and what you think they may be in need of emotionally when communicating with them.

Yes. For many reasons, it can be the alternation of brain chemistry and clinical depression. Living with dementia can be a challenging and very sad time indeed. Many people with dementia are on antidepressants and exhibit symptoms like, unresolved grief, loss of freedom, independence, loss of self and most are often confused and some scared. If mental health issues have been experienced in the past these can resurface as the coping mechanisms used to practice are now lost.

Adapting our communication and approach to someone living with Dementia can help them feel more comfortable and help us get the best out of seeing them. A positive approach to interacting with someone with Dementia is meeting their feelings and not their behaviour. As a person experiences dementia it is helpful to open ourselves up to a broader way of communicating, this could mean using gestures, changing our tone, pace and pitch. By responding to a person with dementia based on their reality. Sometimes, our own expectations of how a person should behave and what they should know can hold us back from connecting with them in the moment. By slowing things down, understanding different abilities and focusing on the present moment it can be really helpful.

Eating is the one thing we have most control over. First thing is to check their swallowing reflexes and their oral care is in good working order. Checking for elements such as dentures fitting properly and healthy gums is important. Texture of food could be another reason why someone isn’t eating properly. Pureed food may be best while trying to avoid the grainy, hard to swallow foods.

Foods must be made into a texture that’s recognisable for the person to swallow, going into the stomach, in some cases food can go into a person’s lungs and cause Pneumonia and other serious health problems.

It’s also good to gauge what the person is wanting to eat, is it comfort food or a certain craving? A person’s taste can change easily so try lots of different meals, even though it may be time consuming. Another option is to make food fun, eating with the person so it’s inclusive or to fortify the food by adding butter and cream to dishes to make them tastier. Traditional meals such as trifle, prawn cocktail and a roast dinner are also familiar meals that older people living with dementia may remember and they may eat!

‘Sundowning’ is a change in behaviour that can start early to late afternoon. Usual signs are when a person is distressed or unable to settle. This can have many triggers – for some people, this process can be triggered after lunch because they don’t know what to do next. Other triggers could include an atmosphere change, a change in employees starting their shift and small changes in the day could cause a person living with dementia to become stressed.

It’s important to look out for signs we could respond to. Is it hunger? Thirst? Are there previous routines or needs that we’re not fulfilling? Understanding the person’s usual routine is important. Keeping people busy with helpful or fun activities can also help, but ensure a period of rest afterwards. Fresh air and exercise can help people feel calm, and release positive endorphins, medication can also help people cope.

Games and activities are very much considered on a person-by-person basis. Care homes provide appropriate entertainment, meaningful activities and games. We must think, what is this person going to achieve through this activity? Maybe a sense of achievement, so a jigsaw puzzle or colouring may be suitable.

It is important to adjust expectations on a per person basis, and ensure not to take away simple, familiar tasks. It’s important to try activities and see what works, we’re only limited by our own imagination. Other great activities are listening to Music, particularly BBC archives, letter writing or visiting familiar sites where the person will feel safe and at ease.