Understanding Dementia: An In-Depth Guide

In the in-depth guide to understanding dementia, we take a look at all the different forms of dementia and the treatments available for each. Dementia is a condition that touches many people’s lives, whether as a person living with it, a relative or a friend, and, anecdotally, most people think they understand what it means to have dementia. That said, there are actually several different types of dementia with different symptoms and treatments and there is still a lack of proper understanding of the condition by the general public, according to the charity Alzheimer’s Research UK.

TABLE OF CONTENTS:

What is Dementia?
Types of Dementia
Alzheimer’s Disease
Vascular Dementia
Dementia with Lewy bodies
Frontotemporal Dementia
Other Rare Forms of Dementia
Dementia Risk Factors
Dementia Support
Practical Coping Strategies
Getting Professional Help

Greater awareness amongst the public can help support research, support those living with dementia and their family members who often provide unpaid care during the early stages of the condition. With an estimated 850,000 people in the UK currently living with dementia there are certainly plenty of people in need of care and support and this number is predicted to increase to over 1.1 million people by 2025 as our population ages.

Depending on where you live in the country the percentage of the population with dementia ranges from 0.4% to 2.8% across the UK. Whilst these percentages may not seem particularly high this means that about 1 in 3 people will know someone with dementia during their lifetime.

Of course, the ultimate hope and challenge is that dementia can be eradicated all together from our population through medical research just as many other diseases have been in the past.

What is Dementia?

Dementia describes a number of symptoms associated with several diseases that affect the brain.

The most common cause of dementia is Alzheimer’s disease but there are other specific diseases that also cause dementia, some more common than others. It is also possible for a person to have more than one disease at the same time that causes dementia.
In 95% of cases the condition occurs in older people but it is not a natural consequence of getting older. However, there are certain risk factors that increase the likelihood of a person developing one of the diseases that cause dementia.

The most typical symptoms of the condition are:

Memory Loss
Confusion
Difficulty Communicating
Mood Changes

These symptoms affect how people behave even in familiar situations and can mean that the person affected can no longer carry out everyday tasks such as preparing food, bathing and dressing; but with the right diagnosis and treatment or support it is possible to effectively manage these symptoms. Although it is important to understand that it is a progressive condition so symptoms will almost always become worse over time.

Types of Dementia

Alzheimer's Disease

Alzheimer’s is the most well-known and most common disease that causes dementia and affects around 60% of those aged over 65 living with dementia.

Although the brain changes as people become older and many people can experience memory loss or confusion there are quite specific changes to the brain associated with Alzheimer’s disease which are not due to the normal ageing process. It can develop slowly over years so can initially be difficult to diagnose and distinguish from normal changes as people become older.

What is known through research is that these changes involve a build-up of certain proteins in the brain which damage nerve cells. What is less well understood is why the proteins build up and how they damage the cells but it is likely to be a combination of lifestyle and genetic factors.

There is no diagnostic test for Alzheimer’s disease but a doctor can carry out some tests in order to make an assessment of whether a person has the disease. These tests include questions to check memory and communication skills. A doctor may also talk to family members about changes in behaviour and may recommend a brain scan and blood tests.

Symptoms of Alzheimer’s Disease:

• Forgetting names, faces, places
• Losing things
• Getting lost
• Not knowing the day or time of day
• Struggling to find the right words
• Becoming anxious, irritable of aggressive
• Unable to complete simple tasks such as answering the phone or making a cup of tea
• Experiencing hallucinations or delusions
• Difficulty walking and eating

Treatments for Alzheimer's Disease

Cholinesterase inhibitors	Used for those with mild to moderate Alzheimer’s cholinesterase inhibitors help some people to manage better on a day-to-day basis in terms of memory and communicating with others.
Memantine	Generally prescribed for those with more advanced Alzheimer’s Memantine again treats the symptoms rather than the disease itself.
Cognitive Stimulation	Activities such as games and practical tasks. Cognitive stimulation and social interaction have been shown to improve quality of life for those living with dementia
Cognitive Behavioural Therapy	Can be used to treat depression or anxiety caused by Alzheimer's
Complementary Therapy	If available, and suitable, various complementary therapies can help with agitation and aggression, for instance aromatherapy and music therapy.

Vascular Dementia

Vascular dementia is the second most common cause of dementia after Alzheimer’s disease causing around 20% of all cases. It occurs when blood vessels in the brain are damaged, which reduces blood flow to brain cells and affects how they function, causing memory problems and other symptoms similar to those for Alzheimer’s disease.

The damage to the blood vessels can occur as a result of a stroke or a series of mini-strokes (also know as TIAs – Transient Ischaemic Attacks). For that reason a brain scan may help diagnose vascular dementia as it can identify changes in blood vessels.

Specific Symptoms of Vascular Dementia

• Thinking more slowly
• Personality changes
• Difficulty walking
• Bladder issues

Treatment for Vascular Dementia

There are no drug treatments for vascular dementia but existing medical conditions that can result in damage to blood vessels in the brain can be treated with drugs – for example high blood pressure and heart conditions.
As with Alzheimer’s disease Cognitive Stimulation, Cognitive Behavioural Therapy and Complementary Therapies may all help to manage the symptoms of vascular dementia.

Dementia with Lewy bodies

Dementia with Lewy bodies (DLB) is the third most common type of dementia affecting 10-15% of all those with dementia. DLB is caused by small round clumps of protein that build up inside nerve cells in the brain, which are called Lewy bodies, hence the name of the disease.

The brain cells that are affected by Lewy bodies are in the parts of the brain that control thinking, memory and movement. Lewy bodies are also present in people with Parkinson’s disease to which DLB is closely related.

DLB can be diagnosed using a specific type of brain scan called a SPECT scan which identifies changes in the brain common to this type of dementia.

Dementia with Lewy bodies can cause the commonly known dementia symptoms such as problems with memory but also results in some very specific symptoms.

Specific Symptoms of Dementia With Lewy Bodies

• Movement problems including shaking
• Visual hallucinations
• Sleep disturbances and vivid dreams
• Episodes of fainting
• Changes in sense of smell

Treatments for Dementia with Lewy Bodies

Cholinesterase inhibitors	Cholinesterase inhibitors help some people to manage better on a day-to-day basis in terms of thinking skills
Memantine	Memantine can also help improve thinking skills and treat visual hallucinations
Levodopa	Levodopa is used to treat Parkinson's disease and can help with the movement symptoms of DLB
Physiotherapy	Used to treat the movement symptoms of DLB
Cognitive Stimulation and Therapy	Cognitive therapies and activities help with some symptoms of DLB

Frontotemporal Dementia

Frontotemporal dementia or FTD (also known as Pick’s disease) is a relatively rare form of dementia affecting less than 1% of people with dementia. Unlike other forms of dementia it tends to affect people under 65, usually between the ages of 45 and 64.

FTD is caused by protein build-up, which damages cells in the frontal and temporal lobes of the brain which affect personality, emotions, behaviour, speech and understanding. An MRI (magnetic resonance imaging) brain scan is used to diagnose frontotemporal dementia as it reveals changes in the parts of the brain usually affected.

The symptoms of FTD are different depending on exactly which part of the brain is affected and the progression of the disease varies widely among different people.

There are no drug treatments available for FTD but symptoms can often be managed successfully with the help of speech therapy and physiotherapy. Speech therapists are able to help with advice about alternative communication strategies for people with language problems, such as simple picture books and even apps.

Frontotemporal Dementia Symptoms

Emotional changes
Becoming withdrawn
Developing obsessions
Changes in eating habits
Difficulty making decisions
Decline in language abilities
Movement problems – muscle weakness, difficulty swallowing

Other Rare Forms of Dementia

Primary Progressive Aphasia

Primary Progressive Aphasia (PPA) is a neurological condition which progressively impairs language capabilities. It is a result of damage to the brain cells responsible for speech and language.

PPA almost always results in a total inability to speak, write and to understand the spoken or written word, even though all other behaviour can be normal. Unlike those with Alzheimer’s disease, most people living with PPA are able to take care of themselves and pursue their hobbies.

However, the distressing symptoms of this disease mean that people living with PPA need to develop new, non-verbal communication strategies – help in doing so can be obtained from speech-therapists.

Posterior Cortical Atrophy

Posterior cortical atrophy (PCA) refers to the gradual but progressive degeneration of the outer layer of the brain (the cortex) at the back of the head. In many people with PCA, the affected part of the brain displays changes similar to those in Alzheimer’s disease but in a different part of the brain. However, other people exhibit damage more similar to those affected by Dementia with Lewy bodies.

Unlike most cases of dementia it occurs more commonly in people under 65 – typically between the ages of 50 and 64.

Because of similar brain damage patterns to those with Alzheimer’s disease it is thought some people with PCA are mis-diagnosed with Alzheimer’s so it may not be as rare as current statistics suggest.

Typical symptoms include difficulty with visual tasks such as reading, judging distances, seeing more than one object at a time, identifying common objects and being able to determine whether an object is moving or stationary.

Other symptoms include difficulties with spelling and simple calculations; some people also experience hallucinations.

The causes of PCA are unknown and it has not been proven that the risk factors for PCA are the same as for other forms of dementia.

Dementia Risk Factors

Developing any form of debilitating illness in later life is worrying for all of us but developing dementia is now the most common concern among older people. In fact, as research from our No Place Like Home report reveals, dementia has overtaken cancer as the UK’s most feared illness in the over 55’s.

However, the chances of developing the condition are not easy to predict and changes in the brain can begin many years before symptoms start to become apparent. It is known that the greatest risk factor to developing dementia is age but it is also related to lifestyle and genetics.

The fact that we know changes begin before old age and that lifestyle and genetics play a part suggests that there is hope of preventative treatments being developed in the future.

Lifestyle

We all know that a healthy lifestyle is good for us for so many different reasons. Not only is an unhealthy lifestyle a risk factor for dementia but it is also a risk factor for cardiovascular diseases such as a heart attack or a stroke.

So eating and drinking healthily and doing regular exercise will keep your heart healthy and can reduce your risk of developing dementia as you grow older.

But it is not just about eating well and keeping physically fit – staying mentally and socially active can also bring all sorts of benefits whatever our age and reduce the risk of dementia too. And it is well-known that social interaction is vital for people already living with dementia and can improve their quality of life.

Although, interestingly, some studies suggest that feelings of loneliness, but not social isolation, are predictors of dementia. How feelings of loneliness and social isolation affect the risk of developing dementia in later life is not yet well understood but a better understanding could help identify people who could benefit from preventative treatment.

Here are some of the best ways to stay healthy in both mind and body:

• Eat a healthy diet
• Keep to a healthy weight
• Minimise alcohol intake
• Give up smoking
• Exercise regularly
• Keep physically active
• Have an active social life
• Take part in hobbies and other activities

Age

Age is the single highest risk factor for developing dementia in the majority of cases. Whilst some forms of dementia do typically develop in people under 65 these are much rarer forms of dementia.

While none of us can hold back the ageing process we can make sure that we lead a healthy lifestyle before we reach our 60’s because it has been shown that the period in our 40’s and 50’s is the time when we can help lower our risk of dementia.

Genetics

Although genes play a part in the likelihood of developing dementia it is not typically an hereditary condition. Having certain genes just indicates a higher risk of developing dementia but this potential risk also has to be viewed in combination with lifestyle factors.

There are some rare cases of early-onset dementia, certain types of vascular dementia and some forms of frontotemporal dementia where there is an hereditary trait.

Approximately 10% of all cases of frontotemporal dementia, for instance, are caused by a faulty gene passed down through families. Researchers have already identified a number of these faulty genes that cause inherited forms of dementia and where there is a family history of a condition then a genetic test can be carried out on close family members, if wished.

Other Risk Factors

High blood pressure, high cholesterol, type 2 diabetes and heart problems are all risk factors in developing dementia, especially vascular dementia.

These factors are not entirely within the control of an individual as there is often a genetic predisposition to high blood pressure and high cholesterol, but if you experience any of these issues you can make sure you manage your condition to lower the risk of developing dementia.

Support For Those Living With Dementia and Their Carers

Dementia will have a life-changing impact on the person with the condition and their family and friends. It can place an unbearable strain on family relationships, particularly when the person living with dementia is being cared for by a family member; but there is help available that can make a real difference. Some care and support is available through local authorities, your GP surgery, or it can be privately arranged; it can include home care, live-in care and respite care for family caregivers.

Whilst more people are now concerned about developing dementia there is also much more open-ness in society in discussing it – thanks in part to celebrities such as the author Terry Pratchett and the actor Barbara Windsor being willing to talk about their illness. This means that families do not need to feel isolated from their networks of friends and neighbours, and are more able to share the burden, if not physically, at least emotionally. It also means people can feel more comfortable asking for help if they need it.

There are many different ways family members can help a person in the early stages of dementia – here are just a few simple coping strategies.

Practical Coping Strategies for Family Carers

A person living with dementia has a serious illness so, although it might be difficult initially to deal with the changes in behaviour and personality it isn’t possible to change those behaviours. But it is possible to change the environment in which you live. So if certain objects or activities cause anguish or distress then change or avoid them – remember that certain behaviour is most likely triggered by something so finding the cause might alleviate troubling behaviour.

But always bear in mind that unusual behaviour is often a coping tactic for a person with deteriorating brain function.

Clothing

Most people with dementia find it hard to cope with getting dressed, especially if clothes have lots of buttons and zips so try and stick with comfortable pull on clothes with elasticated waists.
Avoid any confusion about what clothes to wear by laying out a single set of clothes in the same place each morning.

Food

People with dementia don’t always understand that they need to eat and drink and may not have much appetite anyway but it is, of course, important that they receive adequate, healthy nutrition. One way to resolve the issue of a poor appetite is to have more small meals during the day instead of the regular three: breakfast, lunch and dinner. But remember to stick to healthy foods with plenty of fruit and vegetables rather than snack-type foods.

Helping a person with dementia maintain some independence can be achieved by cutting food into bite-sized portions and incorporating some finger food into mealtimes. Also stick to a regular schedule for meals so they are part of a familiar daily routine.

Communication

Body language communicates thoughts and feelings in all situations but is even more important when talking to a person with dementia. Keep language simple, speak slowly and use facial expressions and physical touch to communicate more clearly.

With some forms of dementia short-term memory has been lost but a person can still remember things from a long time ago so talk about fond memories from earlier in their lives.

Agitation/Restlessness

Feelings of agitation or restlessness can be triggered by objects, surroundings or just feelings (particularly the person with dementia feeling a lack of independence) so it is not always easy to remove the cause but some ways to minimise triggers are to keep rooms clutter-free, keep loud noise to a minimum, avoid busy places when possible and encourage independence.

Restlessness can also be the result of too little physical exercise so try and incorporate a physical activity into each day – this can be something as simple as a stroll.

Getting Professional Help

As dementia progresses the symptoms become worse and it is unlikely that family caregivers can continue to manage on their own. Many people think that once that stage is reached there is no alternative but a residential care home for a loved one.

However, there is a better alternative that offers a better quality of life for your loved one in their own home: it’s called Live-in Care.

Expert Author – Trudi Scrivener

Trudi has more than 30 years’ experience in the care sector and is the founder of Ashridge Home Care, the award-winning specialist live-in care provider. She is also a board member of a The Princes Centre charity and an ambassador at the Heart of Bucks charity. As a Dementia Champion she seeks to raise awareness of how life can be improved for those living with dementia.