All the dementia information you need for living well

This is likely to be a worrying time for you and your family, and you may be feeling a mixture of emotions. This is perfectly normal. There are millions of people all over the world with a dementia diagnosis and every person will experience it differently, but you are not alone and there is a lot of dementia support available to you.

We are here to try and help explain what dementia symptoms are, what causes dementia, what dementia treatments are available and about living with dementia in general.

We will refer you to several other sources that can offer help and support, but if you have any queries or concerns about your condition, or if you think you are experiencing any dementia symptoms detailed here, please see your GP.

What is dementia?

Dementia is an umbrella term that describes a large range of progressive neurological conditions and their symptoms. Dementia affects how your brain works, especially the functions of memory, thinking and reason. There are many different types of dementia and some people are diagnosed with more than one type. Alzheimer’s disease is the most common type of dementia but there are several others.

The risk of having dementia increases as we get older. Dementia usually affects people over the age of 65 but certain dementia types can occur earlier. This is referred to as ‘early onset’ dementia. We don’t yet know why some people experience dementia and other people age with no decline in their cognitive abilities. Scientists believe genetic, lifestyle and environmental factors all play a role.

For further explanations as to what dementia is, please visit the NHS website.

What causes dementia?

The main cause of dementia is damage to brain cells. The type of dementia you are diagnosed with will determine exactly how this damage is occurring. For example, Alzheimer’s disease develops due to a build-up of abnormal proteins in the brain cells which damage their internal structure.

The type of dementia symptoms you experience depends on the area or areas of the brain that are affected:

Cerebrum

Plays a role in memory, attention, thought, consciousness and language.

Cerebellum

Helps control movements and balance, and plays a role in attention and language

Frontal lobe

Plays a role in storing long-term memory. Also responsible for our personality traits and thought processes such as how we decide what is acceptable social behaviour.

Occipital lobe

Processes information from our eyes such as movement, shape and colour.

Temporal lobe and Hippocampus

Play a role in memory, facial recognition and language.

Parietal lobe

Helps with control of the body (e.g. picking things up) and processes such as reading, writing and calculating numbers

The Alzheimer’s Research website features an interactive tour of the brain to help you understand how the brain functions.

Did you know?

Dementia is an umbrella term for a range of conditions that have similar symptoms.

Is dementia hereditary?

Dementia is a complex condition, and whether it is hereditary or not is not straightforward. While genetics can influence your risk, it's just one factor. Some forms of dementia, like early onset Alzheimer's, have a stronger genetic link, but lifestyle choices and environmental factors also play a crucial role.

If you have concerns due to a family history of dementia, consult a healthcare professional or genetic counsellor for personalised advice. They can help assess your risk.

Remember that maintaining brain health through a healthy lifestyle is essential. Regular check-ups and staying mentally and socially engaged can make a difference. Seek emotional support if needed, as you're not alone in this journey.

What is the difference between Alzheimer's and dementia?

While they are closely related and can be easy to confuse without prior knowledge, dementia and Alzheimer’s are two distinct terms. Dementia is a broad, umbrella term used to describe a set of cognitive conditions that affect memory, thinking, and daily functioning.

Alzheimer's disease, on the other hand, is one specific type of dementia. It is the most common cause of dementia, accounting for a significant portion of dementia cases. Alzheimer's is characterised by the gradual degeneration of brain cells, leading to memory loss, confusion, and behavioural changes.

Other forms of dementia, like vascular dementia or frontotemporal dementia, have their unique causes and symptoms as well, but they all fall under the umbrella of dementia.

Main types of dementia

As we outlined above, dementia is not one condition but an umbrella term for several different diseases. Each condition presents itself with a different set of symptoms and may have a different cause. Five main diseases cause dementia, which we discuss in further detail below.

Alzheimer’s disease

This type of dementia causes abnormal proteins to build up in brain cells and damage their internal structure. This reduces the efficiency of the connections between brain cells and cells begin to die. The first symptoms noticed are usually memory, language and problem-solving difficulties. Visit the Alzheimer’s Society website for more dementia information about this type.

Vascular dementia

the second most common type of dementia, caused by reduced blood flow and oxygen supply to the brain. This often occurs due to a series of small strokes or one large stroke. Vascular dementia symptoms are similar to symptoms of Alzheimer’s disease and mainly involve issues with feeling confused, problem-solving, planning, thinking quickly and concentrating. For more dementia information on this type, read the Alzheimer Scotland factsheet.

Mixed dementia

This is a combination of dementia types. For example, it is common to experience dementia symptoms consistent with Alzheimer’s disease and vascular dementia, or Alzheimer’s disease and dementia with Lewy bodies or Parkinson’s disease.

Dementia with Lewy bodies

This type of dementia causes tiny structures (Lewy bodies) to form abnormally inside brain cells, which disrupts the chemistry of the brain and causes cells to die. Symptoms include problems with understanding and thinking, slow movement (stiff limbs and tremors), balance problems and hallucinations. For more dementia information on Lewy bodies, visit The Lewy Body Society website.

Frontotemporal dementia (including Pick’s disease)

This is a relatively uncommon form of dementia that affects the frontal and temporal lobes. This type of dementia causes clumps of abnormal proteins to form inside brain cells. Depending on which areas of the brain are damaged, the person may experience personality changes, language problems, become easily distracted and find it difficult to plan or organise.

For more information on the types of dementia, see the Dementia UK website.

Did you know?

Around 800,000 people in the UK are living with dementia.

Symptoms of dementia

Dementia symptoms usually come on gradually and get worse over time, often over several years.

Some symptoms start so mildly that it takes the person and their family a while to realise there may be a problem. A person’s daily life will be affected by dementia, although there are dementia treatments available to help manage some of them. Some symptoms listed below may occur as a result of the normal ageing process or as a result of other conditions or taking certain medications. If you are concerned that you may have any of the symptoms discussed below, please see your GP.

Early symptoms of dementia may include any or all of the following:

• Memory problems: short term memory is usually affected first, and people often retain memories of their pasts for a much longer time
• Finding it hard to follow conversations, TV stories or understand what you are reading
• Having trouble remembering the day or date, names of people or things, where you put something
• Repeating yourself or forgetting what you're saying mid-sentence
• Difficulty completing daily tasks such as dressing, preparing food or doing chores
• Feeling confused
• Finding it hard to control your emotions

Everyone experiences dementia symptoms differently and many people living with dementia are fairly independent for several years whilst in the earlier stages of their dementia. As their condition progresses though, symptoms may become much less manageable and eventually quite severe. Often, the person is likely to need full-time care and support.

Dementia symptoms in the later stages may additionally include:

• Significant memory loss such as being unable to remember even close relatives
• Communication problems, such as potentially losing the ability to speak
• Mobility decline like becoming unable to walk
• Unusual behaviour such as wandering, rocking or agitation
• Difficulties eating due to muscle loss
• Incontinence
• Increased risk of infections

Receiving a dementia diagnosis

If you're worried that someone you know is showing symptoms of dementia, it can be quite difficult to raise this with the person. They may not be fully aware that they are showing any of these signs, or they may have noticed too and be fearful of seeking help or advice. Try to broach the subject gently and ask if they have noticed that they are behaving differently. Encourage them to make an appointment and offer to go along with them.

If you are worried about your memory or any of the dementia symptoms you have read about above, it's a good idea to see your GP. Some of these may be symptoms of other healthcare conditions or even side effects from taking certain medications, and your GP will be able to take some blood tests and give you some mental exercises to find out how likely it is that you have dementia. If they are concerned, you will be referred to a neurologist, an elderly care consultant, or a psychiatrist with experience in making a dementia diagnosis.

At Complete Care Shop, we have many daily living aids that can help you or a loved one. These can help to make remembering things throughout day to day life much easier and help to simplify daily tasks. Our phones for dementia make calling simple and intuitive. In addition, our monitors, including our memo minder, and reminder clocks can also be very helpful.

Did you know?

Many people living with dementia can continue to live independently in its early stages.

Living with dementia

Living with dementia is a different experience for everyone. Many people continue to live relatively independently for many years but may require support from family and friends. Daily living tasks may become increasingly difficult as time goes on and you may need additional help and support.

Impact on daily living

If you are finding day-to-day activities, such as getting dressed, using the bathroom or preparing food, more difficult due to your dementia, speak to your GP or your local social care provider. They may be able to arrange for you to have an assessment from an Occupational Therapist (OT) who can visit you to find out what you need help with, look at ways you can do things differently and recommend equipment that may help you in the home.

​​Dementia treatments

Most types of dementia cannot be cured, although research is continuing into developing drugs, vaccines and other medical treatments for dementia.

There are drug treatments for dementia that aim to reduce the severity of symptoms and may help to slow down the progression of the disease.

If you have a diagnosis of Alzheimer’s disease or mixed dementia, there are several treatments that your specialist may recommend to you, including prescribed drugs such as donepezil, rivastigmine or galantamine. In the later stages of Alzheimer’s disease, memantine is often prescribed.

There are some other non-drug based treatments that may be recommended to you to make living with dementia easier. These can help you manage the symptoms of dementia and improve your quality of life. Taking part in meaningful activities is enjoyable and leads to increased confidence and self-esteem.

You may be encouraged to undertake:

• Talking therapies: such as counselling, which can help someone come to terms with their diagnosis or discuss their feelings
• Cognitive behavioural therapy (CBT): helps manage depression and anxiety which some people will experience
• Life story work: encourages you to share life experiences on living with dementia to help with communication and memory. Read more about life story work on the Dementia UK site
• Reminiscence work: discussions about the past can improve mood, well-being and mental abilities
• Cognitive stimulation therapy: themed activity sessions to keep the mind active

Dementia diet

Evidence suggests that eating a Mediterranean-style diet can reduce the risk of developing dementia. There is currently little evidence to suggest that a special diet can delay the development of dementia in people already diagnosed, but it is advisable to eat a healthy diet which will improve your general health and boost immunity.

As dementia progresses, eating and drinking may become more of a challenge. A person with dementia may change their attitude towards food. For example, they may begin disliking foods they used to enjoy.

Some people find eating and drinking becomes difficult due to physical problems with their mobility or coordination. There are dementia drinking and eating aids that can assist with this, for example, easy-to-grip caring cutlery, specially designed non slip cups and mugs, and high sided plates with contrasting colours to make them easier to see.

Similarly, depression, oral pain or discomfort, medication, tiredness and using less energy can all decrease the person’s appetite.

Exercise for dementia

Alzheimer’s Society provides a factsheet about eating and drinking with dementia including tips for carers

Some people take dementia supplements such as vitamins and minerals because they believe these help to reduce some of their symptoms and may have positive effects such as slowing down the progression of the condition. Omega-3 (found in oily fish), B vitamins and folic acid are often taken. There is little clinical evidence to support the use of dementia supplements. Living a healthy lifestyle is the most important factor to help reduce the risk of dementia developing.

Exercise is considered one of the best ways to reduce the risk of developing dementia.

Exercise for dementia patients may bring the following benefits:

• Improve heart health and decrease the risk of heart disease
• Reduce the risk of some types of cancer
• Reduce the risk of stroke and type 2 diabetes
• Retain mobility, strength, balance and flexibility for longer
• Keep bones strong
• Improve memory
• Increase self-esteem and mood

People in the early or middle stages of dementia are usually able to find an exercise that suits their abilities or continue doing those that they have always enjoyed. Local community or sports centres often provide a range of organised exercise and physical activity sessions, such as ball games, seated exercises, tai chi, music and dance, indoor bowls or swimming.

Increasing the amount of physical activity carried out during the day all counts as exercise too, for example, walking, gardening and housework. To make physical activity simple, we provide mobility aids such as grab rails, walking frames and rollators.

For more dementia information and advice, read the Alzheimer’s Society factsheet

Dementia and employment

If you receive a dementia diagnosis, it does not necessarily mean you are unable to work anymore. Many people continue to work for a long time after they are diagnosed. If you can carry on working, it may help your wellbeing, mood and cognitive abilities.

You should inform your employer that you have been diagnosed with dementia and of your intention to continue with or leave employment. They have a legal duty not to discriminate and to make reasonable adjustments to ensure you are not disadvantaged in the workplace.

A disability employment adviser (DEA) at a Jobcentre Plus office can advise on speaking to your employer.

Don’t rush into a decision – take time to consider the options and find the right solution for you.

The Alzheimer’s Society offer a helpful advice booklet on dementia and employment

Did you know?

There are several medicines and non-drug treatments to manage the symptoms of dementia.

Support

A dementia diagnosis can come as a shock to the person with the condition and those around them. However, there are sources of help and support for everyone involved. It's natural to worry about the future, but it's important to remember that you're not alone. If you are caring for someone with dementia, it is important to recognise that you have needs as well. Caring for someone with a long-term condition can take its toll on your personal life, health and well-being, so try to eat right, exercise, take breaks as often as you can, and use the dementia help and support systems available to you.

If you would like to speak to one of our Occupational Therapists to see if there are any daily living aids in our collection that may help you or someone you care for, please contact them on 03330 160 000 or fill in this contact form. They will be able to talk to you about your needs and will find the ideal dementia aids to help you.

PLEASE NOTE: Our Expert Advice Service can only advise about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.

Communities

Communities and online forums are a great way to share your experiences of caring for someone with dementia and meeting people in similar situations.

Age UK is a good source of dementia information and their local offices provide many different dementia support services for people with dementia and their carers.

Talking Point is the Alzheimer's Society's forum. It has people with the condition sharing their dementia information and advice, and supporting each other.

Carers can also turn to online communities on the Carers UK forum and the Carers Trust forum

Dementia Aware Facebook group is a space where people can share their experiences and provide useful advice and dementia information with each other.

Dementia Connect is Alzheimer's Society's comprehensive services directory where you can search for local activities, care, advice and support.

If you are experiencing early onset dementia, Young Dementia UK has a variety of dementia information and support.

Resources

UK Care Guide - provides valuable information on the costs of live-in care and respite care for carers who need to take some time for themselves

AGE UK – helps to inspire and support older people so they can enjoy later life

Alzheimer’s Society – aims to create a society where those affected by dementia are supported and accepted

Alzheimer’s Disease International – the global voice on dementia

Alzheimer Scotland - an organisation that offers support and raises awareness of the issues that those living with dementia face in Scotlan

Carers Trust – a major charity which is for, with and about carers

Dementia Friends – an Alzheimer’s Society initiative to help change people’s perception of dementia

Alzheimer’s Research UK – the world’s leading dementia research charity dedicated to causes, diagnosis, prevention, treatment and cure

Dementia Carer – developed with and by family members who look after someone who has dementia

Dementia UK – provides specialist dementia support for families through their Admiral Nurse service

NHS Choices – helps to explain health conditions in more detail

Rare Dementia Support – runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses

Young Dementia UK – a charity that helps people whose lives are affected by young onset dementia

Did you know?

Online communities are great for carers, and those living with dementia, to share their experiences.

Glossary

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of dementia as straightforward as possible.

Abnormal proteins

These are normally found throughout the body but for reasons we do not yet know, some proteins such as amyloid can build up between nerve cells, which form abnormal clusters or ‘plaques’ that cause death of the cells

Cerebrum

The largest part of the human brain, positioned at the top of the skull, divided into the right and left hemispheres. The right half of the cerebrum controls the left side of the body, and vice versa. It’s divided into four regions called ‘lobes’

Cerebellum

Part of the brain located at the back of the skull which coordinates muscular activity

Donepezil

A drug used to treat confusion, improve memory, awareness, and the ability to function by restoring the balance of natural substances (neurotransmitters) in the brain

Early onset dementia

Also known as ‘young onset dementia’, referring to dementia that develops in people aged between 40 and 60

Frontal lobe

Part of the brain lying immediately behind the forehead that helps solve complex tasks

Temporal lobe

The brain has two of these, one in each hemisphere. Processes information from the ears

Galamantine

A drug used for the treatment of mild to moderate Alzheimer's disease and various other memory impairments, in particular those of vascular origin

Hippocampus

A small region of the brain located immediately beneath the cerebrum and is associated with memory and spatial navigation

Lewy Bodies

Abnormal aggregates of protein that develop inside nerve cells in Parkinson's disease (PD), Lewy body dementia, and some other disorders

Memantine

A drug used to treat moderate to severe Alzheimer-type dementia. It works by blocking the excess activity of a substance in the brain called glutamate, which may reduce the symptoms associated with Alzheimer's disease

Occipital lobe

Part of the brain found in the back of the cerebrum that processes visual information

Parietal lobe

A part of the brain found between the frontal and occipital lobes. Communicates sensations to the brain and helps avoid potentially harmful situations

Pick’s disease

Another term to describe Frontotemporal dementia, where the frontal and temporal lobes of the brain shrink

Rivastigmine

A drug used to help improve the function of nerve cells in the brain