What is Dementia?

It’s normal for your memory to be affected by stress, tiredness, illnesses and certain medicines. However, if you’re over the age of 65 and are becoming increasingly forgetful and confused, then it may be a good idea to talk to your GP about the early signs of dementia.

Contrary to popular belief, dementia is not simply a natural part of getting older, nor is it a disease in its own right. Dementia is an umbrella term that encompasses several progressive medical conditions that affect your brain to such an extent it interferes in your day-to-day life. Dementia can also have a significant impact on your loved ones, who may find your diagnosis difficult to deal with.

Essentially, the signs and symptoms of dementia are a direct result of when once-healthy neurons, also known as nerve cells or brain cells, stop working as they should. When cells in a particular region are damaged, the cells themselves are unable to communicate properly. As the cells lose connection with other brain cells, those cells will begin to die off. The human brain has distinct regions which are responsible for different functions, such as memory, judgement and movement. Without sufficient communication, certain regions will not be able to function normally. There are several different types of dementia that affect the brain in different ways.

Everyone loses the odd neuron here and there as they get older, however people living with dementia experience a far greater loss of cells which results in more severe symptoms. Living with dementia can be confusing and disorientating for people. It can also be especially difficult for loved ones, as often a person living with dementia will start to forget those closest to them. In saying that, a dementia diagnosis isn’t the end – for many, it’s simply the beginning of a new chapter.

What are the symptoms of dementia?

Signs you or a loved one have dementia can vary greatly between people. Common indicators include memory loss, confusion and issues with speech. Other symptoms can include hallucinations, problems with movement, a loss of mental sharpness and rapid changes in mood. Loved ones may also notice a sudden change in someone’s personality. People living with dementia can lose interest in their usual day-to-day activities and may have issues managing their emotions or behaviour.

The different types of dementia

Dementia is not a specific disease. It’s a general term that encompasses several different progressive medical conditions. These conditions impact brain function, and as a result impair a person’s ability to remember, think and make day-to-day decisions.

Alzheimer’s disease

Dementia is often confused with Alzheimer’s disease, with the terms used interchangeably. Alzheimer’s disease is the most common type of dementia, affecting between 60 – 80% of people living with dementia.

Alzheimer’s disease occurs when abnormal proteins surround and build up around a person’s brain cells and other proteins, which causes damage to their internal structure. Eventually the chemical connections between brain cells are lost and begin to die.

As a result, the first noticeable symptom of Alzheimer’s disease is often memory loss. Other symptoms include difficulties in problem solving, making decisions and finding the words to say in day-to-day conversation.

Vascular dementia

Vascular dementia is caused when oxygen supply to the brain is reduced. This is often because of blood vessels narrowing or even a blockage which can cause brain cells to become damaged and die. If someone has a disease that affects the small blood vessels deep in the brain, then they may develop subcortical vascular dementia, although vascular dementia occurs more often following a large stroke. A series of smaller strokes over time can also cause vascular dementia to develop over time.

The symptoms of vascular dementia are similar to Alzheimer’s disease. Many people with vascular dementia will have difficulties with planning or problem-solving and concentration. They will also become confused very easily.

Dementia with Lewy bodies

Lewy bodies are clumps of protein that can form in the brain. This type of dementia sees these abnormal structures forming within brain cells which can disrupt the brain and cause brain cells to die off. Early signs of dementia with Lewy bodies include varying alertness, difficulty judging distances and hallucinations. Unlike Alzheimer’s disease and vascular dementia however, memory is usually less affected in the early signs of dementia with Lewy bodies.

You may hear dementia with Lewy bodies called Lewy body dementia. Lewy body dementia is actually an umbrella term under which dementia with Lewy bodies and Parkinson’s disease dementia are both encompassed. Dementia with Lewy bodies and Parkinson’s disease dementia both have similar symptoms, including issues with movement.

Frontotemporal dementia

Frontotemporal dementia occurs when the front and side sections of the brain are damaged. Abnormal proteins will form within brain cells, which causes them to die off. Although it is dependent on what area of the brain has been damaged, the most common first signs of frontotemporal dementia are sudden changes in personality and behaviour. Some may also have difficulties with speech or begin forgetting the meaning of words.

Mixed dementia

Mixed dementia occurs when a person is living with more than one type of dementia. It is common for example, for someone to have both Alzheimer’s disease and vascular dementia, and as a result have a mixture of symptoms from both disorders.

Other causes of dementia

Of course, there are other diseases that may lead to dementia. Cases are rare and only account for about 5% of people living with dementia. Most common in younger people under the age of 65, these diseases include corticobasal degeneration, progressive supranuclear palsy, infection from HIV, Creutzfeldt-Jakob disease (CJD) and Niemann-Pick disease type C.

Some people living with Huntington’s or Parkinson’s disease may also develop dementia as their condition worsens.

Who is at risk of dementia?

Although dementia is not a natural part of the ageing process, people who develop dementia do tend to be older. It is estimated that 1 in 14 people over the age of 65 are living with dementia. The likelihood of developing dementia increases significantly as we get older. Dementia can also impact younger people – it is estimated there are currently more than 42,000 people under the age of 65 living in the UK with dementia.

Is dementia hereditary?

There is much debate over whether or not dementia is genetic. According to The Alzheimer’s Society, most dementia cases are not hereditary. While many people affected by dementia worry that they may inherit or pass on dementia, in most cases the disease is not inherited by children and grandchildren.

The most important risk factor for Alzheimer’s disease is age. Alzheimer’s disease is hugely common in people over the age of 65. If you have a grandparent in their 70s or 80s with Alzheimer’s disease there is very little chance you will develop the disease through genetics. Not all kinds of Alzheimer’s disease are the same though. Young-onset Alzheimer’s disease, which is usually caused by genetics, can occasionally affect people in their 50s and 60s, and sometimes even in their 30s or 40s. It’s incredibly rare – only 3% of people will develop Alzheimer’s disease before the age of 60.

Vascular dementia is also not considered hereditary. However, the underlying health issues that often result in vascular dementia, such as a stroke, high blood pressure or diabetes, may be passed down the family tree. So while vascular dementia is not genetic, it’s important to take note of any conditions that increase your risk of developing the disease.

Compared to the other types of dementia, frontotemporal dementia is relatively rare. It can be passed from one generation to the next, although it is not directly inherited. Roughly 40% of people diagnosed with the disease have a close relative who is also living with dementia. The greater number of relatives with dementia, the greater the risk of developing frontotemporal dementia. Of the different types of frontotemporal dementia, the behavioural form is the most often inherited genetically.

I’ve just been diagnosed with dementia – what should I do?

If you’ve just been diagnosed with dementia then you may be feeling deeply distressed, not to mention scared for what’s to come. Remember there is no wrong or right way to react to a diagnosis. The important thing is to give yourself time to process and grieve.

Make sure you’re kind to yourself. Dementia is nobody’s fault, and there’s definitely no reason to blame yourself. With time, you’ll be able to work through the shock, grief and anger but it’s also important to give yourself a couple of days, if not weeks or months, to process your emotions. It’s also important to reaffirm your identity. Dementia does not define you as a person nor should it define your life. Pursue the roles that help you to define your sense of self, such as mother or father, cyclist, baker or photographer. It may help to start keeping a journal if you don’t already have one.

Receiving a dementia diagnosis may have left you feeling isolated, helpless and alone. Although it will be tempting to withdraw, finding a local support group or organisation and reaching out can have a huge impact on your mood and overall outlook. Most towns or cities have a dementia support group or a local charity or organisation that may be able to help.

Lastly, it’s important to plan ahead. While it may seem overwhelming, it’s important to get your papers in order including your will. A person with dementia can still make changes to their will but they must be able to show they understand what they’re doing and what the effects of the changes will be. It may be worth looking into power of attorney, which means you would delegate the management of your affairs to a trusted family member. You should also consider setting up direct debits or standing orders for your regular bills. Planning ahead will ease stress on yourself and your family, and ensure that everything is in order.

Supporting a loved one with dementia

Dementia can leave a person feeling isolated and alone. They may lash out from stress or anger or attempt to withdraw from you because they don’t want to seem like a burden. If this happens, try not to take it personally. Living with dementia can have a colossal emotional, social and psychological impact on a person, and the adjustment after a diagnosis can be challenging.

Depending on how advanced your loved one’s dementia is, improving your communication skills can have a huge effect on your interactions with them. Good communication skills will enhance your ability to handle the difficult behaviour that you may encounter. It’s also important to keep calm, as loud noises like shouting may confuse and disorientate them. It’s crucial that you continue to treat your loved one with affection and reassurance. People with dementia are often confused, anxious and unsure of themselves. They may get confused and recall something that never happened. Avoid telling them they are wrong. It’s important to always respond to their behaviours with verbal and physical expressions of comfort and support. This may be through holding hands or hugging. Patience is also vital when supporting someone living with dementia. For example, if you ask your loved one a question and they don’t answer right away, try not to get frustrated. Wait a few minutes before asking again. Ensure the question is simple and easy to answer, without too many choices.

It’s also important to make sure you are regularly reminiscing with your loved one about your best memories together. Whilst someone with dementia may not remember what they had for breakfast, they may remember the birth of a grandchild or a holiday spent abroad. Reminiscing with your loved one will keep the conversation light and positive. Maintaining a sense of humour is also hugely important.

Living well with dementia at Memory Matters

A dementia diagnosis isn’t the end; it’s simply another chapter of a novel that hasn’t been finished yet. If you’ve recently been told you have dementia, then you can rest assured there is support in the community that can empower you to continue living well.

Founded in 2010 after two nurses, Laura Walker and Kate Smith, became frustrated with the lack of dementia support in the community for those living with dementia and their carers, Memory Matters have been supporting and empowering people in the community living with dementia for more than a decade. Set up to change the face of dementia support, the goal behind Memory Matters has always been to provide meaningful services and support that respond to the needs of people living with dementia in our communities.
If you’ve recently been diagnosed with dementia, or have a loved one in need of thoughtful, compassionate support, then contact the team at Memory Matters today.