What is Dementia?

The word ‘dementia’ is an umbrella name for a range of conditions that affect the brain. There are over 400 different types of dementia. It is most likely to develop in older people over 65 but can also occur at a younger age. Most dementias are progressive and a person’s function generally declines over time. Symptoms may include memory loss and difficulties with thinking, problem-solving, language or the person may develop behaviours that seem unusual or out of character. A person with dementia, especially in the later stages, may have physical symptoms too such as muscle weakness or weight loss. Changes in sleep pattern and appetite are also common.

A person with dementia will also often have changes in their mood. For example, they may become frustrated or irritable, apathetic or withdrawn, anxious, easily upset or unusually sad. These changes are often small to start with, but for someone with dementia they have become severe enough to affect daily life.

Who gets dementia?

As mentioned, dementia mainly affects people over the age of 65 (1 in 14 people in this age group have dementia), and the likelihood of developing dementia increases significantly with age. However, dementia can affect younger people too. There are more than 42,000 people in the UK under 65 with dementia.

The most common types of dementia are:

What causes Dementia?

Dementia is caused when the brain is damaged by diseases (e.g. Alzheimer’s disease) or a series of strokes. The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the dementia.

  • Alzheimer’s disease – This is the most common cause of dementia. In Alzheimer’s disease, an abnormal protein surrounds brain cells and another protein damages their internal structure. In time, chemical connections between brain cells are lost and cells begin to die. Problems with day-to-day memory are often the first thing to be noticed, but other symptoms may include difficulties finding the right words, problem solving or decision making.
  • Vascular dementia – This is another common type of dementia but the name is not so well known. It can occur suddenly, for example, following a stroke. It can also progress slowly or over time through a series of small strokes or damage to blood vessels in the brain. The signs and symptoms can sometimes be difficult to tell from Alzheimer’s and other forms of dementia. Symptoms can include memory loss, disorientation, problems with communication and changes in how the person walks. More specific symptoms differ depending on which part of the brain is affected. These may include problems with planning, problems concentrating or short periods of intense confusion.
  • Mixed dementia – This is when someone has more than one type of dementia, and a mixture of the symptoms of those types. It is common for someone to have both Alzheimer’s disease and Vascular dementia together.
  • Dementia with Lewy bodies– This type of dementia involves tiny abnormal structures (Lewy bodies) forming inside brain cells. They disrupt the chemistry of the brain and lead to the death of brain cells. Early symptoms can include alertness that varies over the course of the day, hallucinations, and difficulties judging distances. A person’s day-to-day memory is usually affected less than in the early stages of Alzheimer’s disease. Dementia with Lewy bodies is closely related to Parkinson’s disease and often has some of the same symptoms. Those with Lewy body disease may experience periods of severe confusion. They can have hallucinations, seeing or hearing things that aren’t really there. Swallowing and sleep patterns can also be affected – people can fall asleep easily during the day but have disrupted sleep at night time.
  • Frontotemporal dementia (including Pick’s disease)– FTD affects the front section of the brain, and the temporal lobes (over the ears). If the frontal lobes are affected, the person will have increasing difficulty with motivation, planning and organising, controlling emotions and maintaining socially appropriate behaviour. If the temporal lobes are affected the person will have difficulty with speaking and/or understanding language.  This form of dementia can affect behaviour and personality and language function. Some cases of FTD are linked to motor neurone disease. With FTD the early symptoms vary, depending on which area of the brain is affected. They may include:
  1. Changes in personality changes in eating patterns
  2. Lack of personal awareness (e.g. personal hygiene)
  3. Lack of social awareness (e.g. being tactless)
  4. Difficulties speaking or understanding others can be a main symptom in the early stages.

It is more common in younger people (45-65) but can also develop in older individuals.

  • Early onset of dementia – Although most people who develop dementia are over 65, it can affect younger people too. Most people with early onset dementia are in their 40s or 50s. Doctors don’t usually suspect dementia in younger people. The process of getting a diagnosis can therefore be difficult. People who develop dementia at a younger age may have a strong family history of dementia. Genetics may have a role in the development of their condition. Early onset dementia can affect those with another health condition such as Parkinson’s disease, multiple sclerosis, Huntington’s disease, HIV or AIDS.

The symptoms of these types of dementia are often different in the early stages but become more similar in the later stages. This is because more of the brain is damaged as the different diseases progress. In the later stages of dementia, the person will need more and more support to carry out everyday tasks.

Other risk factors for dementia

Age-related hearing loss 

Hearing loss is now considered to be an important risk factor for the development of dementia. However, we do not know yet whether interventions, such as hearing aids, can reduce a person’s risk. Hearing aids may be of benefit but further studies are needed.

Intellectual disability and dementia

People with Down’s Syndrome are at an increased risk of dementia. It is estimated that 1/3 people with Down’s Syndrome in their 50s and close to 2/3 people with Down’s Syndrome aged over 60 will develop dementia. However, although most people with Down’s Syndrome will experience brain changes as they age, not everyone will develop dementia.

Diabetes and dementia 

Research has shown that diabetes can increase the risk of developing both Alzheimer’s disease and Vascular dementia. This is thought to be due to mechanisms behind diabetes development that can damage small blood vessels in the brain, which is likely to contribute towards Vascular dementia. It is also thought that diabetes-related blood vessel damage could lead to a reduced blood flow to the brain, which may be a factor in Alzheimer’s disease development. Living a healthy lifestyle that promotes cardiovascular health will help to both managing diabetes and benefit your brain.

How to get tested ?

Making a diagnosis of dementia is often difficult, particularly in the early stages. This is because there is no one simple test and early symptoms can be similar to those of lots of other common conditions.  A thorough assessment will often accurately diagnose the type of dementia.

Step 1: Assessment by a GP

In the case of suspected dementia, the first person to consult is the GP. The GP will assess the person through the following procedures:

  • Taking a ‘history’ – The GP will spend some time talking to the person and someone who knows them well. (The doctor may contact a family member by phone if they cannot attend in person.) They will ask about how and when the symptoms started and how they are affecting the person’s life. The GP will look at the person’s medical history and those of other family members. They will also review the medicines the person is taking.
  • Physical examinations and tests – The GP may carry out a physical examination, particularly if a stroke or Parkinson’s disease is suspected. They will also take samples (blood and possibly urine) to send off for tests. These may identify other conditions that are causing the symptoms.
  • Tests of mental abilities – The GP will ask the person a series of questions or give them a short paper test. These are designed to test thinking, memory and orientation.

Most of the time the GP will decide that further assessment is needed to make sure. In such cases they will generally refer the person to a memory assessment service, memory clinic or other specialist service within a community mental health team. These services all have teams of different professionals, and are set up to assess people with memory problems, especially those with suspected dementia.

Step 2: Referral to a specialist

Once the referral is sent an appointment will be made with a specialist consultant, hopefully within 4 – 6 weeks of the initial referral.  The specialist will have more knowledge and experience of dementia than a GP. They will have more time allocated for the appointment and access to more specialised investigations, such as brain scans and in-depth mental testing. A consultant usually works in a specialist team, alongside a number of doctors at various stages of training in that particular specialty. Although the person may not always see a consultant, they are ultimately responsible for the case and will discuss it with the doctor the person has seen. The consultant also usually works with other professionals, including mental health nurses, psychologists, occupational therapists, social workers and dementia advisers who are professionals that provide information, advice and guidance to people with dementia and their careers.

The main types of consultant are

  • Old age psychiatrists – psychiatrists who specialise in the mental health of older people, including dementia. They may sometimes also offer support to younger people with dementia.
  • General adult psychiatrists – specialise in diagnosing and treating a wide range of mental health problems. A younger person (under 65) may be referred to such a psychiatrist to help with the diagnosis.
  • Geriatricians – specialise in physical illnesses and disabilities associated with old age, and in the care of older people. If the person being assessed is frail or in poor general health, they may be referred to one of these specialists to see whether their symptoms are due to a physical illness. They may have a physical illness as well as dementia.
  • Neurologists – specialise in diseases of the brain and nervous system. Some neurologists have particular experience in diagnosing dementia. They tend to see younger people and those with less common types of dementia.

Step 3: Assessment

An assessment for possible dementia can be confusing and daunting, and a diagnosis of dementia is life-changing. Many memory services offer people who are about to go through assessment and diagnosis the chance to talk things over with a professional beforehand.

This pre-diagnostic counselling will help the person (and those close to them) understand why they have been referred, learn about the assessment process, give consent (or not) to go ahead, and prepare them for the possible outcomes. It is also an opportunity for the person and those supporting them to share what they already know about dementia, express their feelings and raise any concerns.

Assessment may take place in the home, in an outpatient’s department at a hospital, in a day hospital over several weeks or, very occasionally, while the person stays in hospital as an inpatient. The specialist will carry out their assessment via the following steps:

  • Taking a history – As with the GP, the specialist will talk to the person being assessed and those close to them for up to 90 minutes.
  • Physical examinations and tests – A physical examination and/or tests will be undertaken, if they have not already been carried out by the GP. In many cases the blood tests will already have been done before referral.
  • Tests of mental abilities – The person will have a more detailed assessment of memory and other thinking processes. This assessment consists of a range of pen-and-paper tests and questions. These tests can be very good at helping to determine the type of problem a person may have, particularly in the early stages. The assessment can also be used as a baseline to measure any changes over time, which can help with making a diagnosis. In more complicated cases the person will be assessed by a clinical psychologist or neuropsychologist (professionals whose specialty includes the diagnosis of mental health problems).
  • Scans – The person might be sent for a brain scan. Depending on where they live, this may involve a wait of several weeks. There are several types of brain scan:
    • CT (computerised tomography), CAT (computerised axial tomography) and MRI (magnetic resonance imaging) scans are widely used. They all show structural changes to brain tissue.
    • SPECT (single photon emission computerised tomography) and PET (positron emission tomography) scans are less widely used. They show changes in brain activity.

CT and MRI scans can identify conditions with similar symptoms to dementia such as a brain bleed, tumour or build up of fluid inside the brain. If the person has dementia, these scans may show that the brain has shrunk in certain areas.

MRI in particular may show changes caused by diseased blood vessels in the brain indicating a stroke or possible vascular dementia. A scan showing no unexpected changes in the brain does not rule out conditions such as Alzheimer’s disease. This is because in the early stages of the disease the changes can be difficult to distinguish than those seen in normal ageing.

SPECT and other more specialised scans can show areas where brain activity (blood flow or metabolism) is reduced. These scans are mostly used if the diagnosis of dementia type is still unclear after a CT or MRI scan.

To make the diagnosis, the consultant will bring together all the information from the history, symptoms, physical exam, tests and any scans. The combined picture will often allow a diagnosis to be made. If the diagnosis is dementia, the consultant should also be able to determine the type.

In some cases the consultant may diagnose mild cognitive impairment rather than dementia, especially if the symptoms are mild or could indicate depression. Mild cognitive impairment is when the person has problems with memory or thinking but these are not severe enough to be diagnosed as dementia. The specialist may then discharge the person back to their GP and ask the GP to re-refer them if they are significantly worse after a further 6–12 months.

 Getting the most from a consultation

If possible, someone who knows the person being assessed well should go with them to the consultation. Whether you are attending the appointment for yourself or for someone you are supporting, it may be useful to do the following:

  • Write down any questions or worrying symptoms beforehand to bring up with the GP or specialist. Try to include details of when symptoms first started. It can be difficult to remember everything you want to say during a consultation.
  • During the consultation, write down any important points the doctor makes.
  • Ask the doctor (or any other professional) to explain any words or phrases you do not understand.
  • Ask the doctor to write down any medical terms.
  • A specialist should offer to send you a copy of the letter they will write to the GP. This letter will include details of the diagnosis. You can ask them to provide a more personalised letter, containing clear information about the diagnosis and care needs.

After diagnosis

It can be very tempting to try to ignore the challenges involved in this process. Deciding who to tell and when is the individual’s choice. Sharing the diagnosis may bring relief and make socialising easier.

Practical steps

After receiving a diagnosis it’s a good idea to take some practical steps to make life run more smoothly. Here are a few suggestions for you and your close family to consider:

  • Organise your financial affairs. Consider paying bills by direct debit to make payments easier.
  • Talk to your solicitor about setting up an Enduring Power of Attorney.
  • Establish if there are any assistive technologies available which might make daily living a little easier. You can find out more about them from an occupational therapist.
  • Access Home Help, Meals-on-Wheels or Carer’s Association through a social worker or public health nurse. Even if you don’t need this assistance now, the knowledge will be helpful if you do need it at a later stage.
  • Stay active. Continue with your favourite hobbies – gardening, golf, tennis, swimming, walking the dog, or whatever you enjoy most. New experiences can help your brain, so consider taking up a new pastime like painting, gardening or singing. Eating well and taking regular exercise is also very important.

Find out what community services exist in your area. By clicking our links below.

There are dementia friendly neighbourhoods across Belfast. The campaigns bring together business, voluntary and community groups, churches, schools and libraries to improve life for people affected by dementia. Talk to your local branch of the Alzheimer’s Society by clicking here.

East Belfast 028 90735696 email dementiafriendlyeastbelfast@gmail.com

West Belfast (no telephone no.) dementiafriendlywestbelfast@gmail.com

South Belfast 028 90 244070 dementiafriendlysouthbelfast@gmail.com

North Belfast olaf@northbelfastseniors.org

How can I reduce my risk of developing dementia?  

The brain is a powerful and complex object, looking after it promotes brain health and may lessen our chances of developing dementia. Although we can’t prevent all types of dementia, we may be able to decrease the risk of dementia. There is growing evidence that leading a healthy active lifestyle may help maintain your brain health. These simple everyday steps can also help those with dementia to live well with the condition.

Challenge your brain and keep it active – do a crossword or puzzle, remember your shopping list instead of writing it down, learn something new or take up a new hobby.

Get active – Keep yourself moving – but don’t push it too hard, you don’t need to run a marathon. Aim for half an hour of exercise five days a week and your brain will thank you for it.

Healthy diet – How healthy is your diet? A balanced diet rich in vegetables, fruit, whole grains, dairy, lean meats, poultry and fish is a good starting point. Be mindful of how much alcohol you drink, and stay within the low risk guidelines. Drinking more than just a couple of units a day is a serious risk factor.

Know your numbers – Get your blood pressure and cholesterol levels checked every six months or so. A healthy blood pressure level is good for your heart and your brain.

Quit smoking – It’s not easy but it can be done and it really will lower your risk. Speak to your pharmacist or check out information on the public health agencies website

Have some fun – Connecting with people helps to grow new connections in your brain and socialising is good for your well-being too. Visit a Memories cafe run by the Alzheimers Society.  These cafes provide a safe, comfortable and supportive environment for people with dementia and their carers to get together, socialise, receive information and share experiences.  For more information contact 0300 222 1122 (mon-fri 9a.m – 5 p.m & sat / sun 10a.m -4 p.m )