The word dementia can be used to describe a variety of progressive neurological disorders. If someone is living with dementia it means that their memory, thinking and behaviour deteriorates, often causing them to need help with daily activities. Dementia is complex condition that is wide ranging in how it can impact someone's life. Let us guide you through understanding the common symptoms, types and diagnosis of dementia and Alzheimer’s.
Dementia is a common cause of disability and dependency among older people. However, it isn’t a normal part of ageing and someone living with dementia should receive the help and support they need to maintain as much independence as possible. Younger people can also experience dementia. If someone under the age of 65 has the condition, it is called young-onset dementia.
Statistics on dementia
· At least 850,000 people in the UK are living with dementia
· By 2025, there will be more than 1 million people are living with dementia in the UK
· 1 in 6 people over the age of 80 are living with dementia
· 1 in 14 people over the age of 65 are living with dementia
· Around 42,000 people in the UK are living with young onset dementia
What are the symptoms of dementia?
Each person living with dementia will experience symptoms in a different way, even if they are diagnosed with the same type of dementia as someone else. Given that dementia is a progressive condition, symptoms tend to worsen over time.
The early signs of dementia may include mild dementia symptoms, such as small changes in thinking and memory. Meanwhile, in the later stages of dementia, people experience more severe dementia symptoms and may lose communication skills or forget to take care of themselves. Dementia symptoms can include the following:
· Memory loss
· A slower thinking-speed
· Problems with speaking, such as using words incorrectly
· Difficulties when understanding, judging, planning or organising
· Not feeling mentally sharp or quick
· Changes in mood
· Difficulties with managing behaviour or emotions
· Lost interest in hobbies and usual activities
· Difficulties with movement
· Lost interest in relationships
· Feeling less empathy - due to changes in mood
What is sundowning?
Sundowning describes the changes in behaviour that a person living with dementia may experience in the evening. Around dusk, they may feel anxious, unsettled and confused about where they are. Symptoms of sundowning include:
· Feeling like you are in the wrong place
· Asking to go home, even if someone is already at home
· Shouting and arguing
· Pacing and restlessness
· Not recognising who people are
· Confusion about what is happening
Behaviour that challenges is usually a sign of an underlying issue that the person cannot communicate to you, for example:
· Physical pain
· A disorienting change in darkness or light in a room
There are ways in which sundowning can be prevented or managed with the help of a friend, relative or carer.
What causes dementia?
Dementia can be caused by several different diseases that damage nerve cells. Typically, a disease that causes dementia will cause an increase of proteins in the brain, causing nerve cells to function poorly and die. This causes different areas of the brain to shrink and stops messages from being sent properly to and from the brain. The body therefore doesn’t work as it usually does.
People with Parkinson’s or Huntington’s disease can develop dementia and people with Down’s syndrome have a higher chance of developing Alzheimer’s when they get older.
Less frequent causes of dementia
There are a few rarer causes of dementia, accounting for around 5% of people with the condition. Usually, the people that experience these rarer causes have young onset dementia:
· Corticobasal degeneration
· Progressive supranuclear palsy
· HIV infection
· Niemann-Pick disease type C
· Creutzfeldt-Jakob disease (CJD)
What is the difference between dementia and Alzheimer’s?
Alzheimer’s disease is the most common type of dementia. Alzheimer's damages a part of the brain that stores recent memories, called the hippocampus. Therefore, memory loss is the main trait of Alzheimer’s.
How many types of dementia are there?
There are more than 200 subtypes of dementia. However, the 5 main diseases that cause dementia are:
· Alzheimer’s disease
· Vascular dementia
· Dementia with Lewy bodies
· Frontotemporal dementia
· Mixed dementia
What is Alzheimer’s disease?
As mentioned above, Alzheimer's is the most common types of dementia. Symptoms progress slowly, so often it can just seem like someone getting older. The symptoms of Alzheimer's can include:
· Forgetting recent events, names and faces
· Confusion in unfamiliar places
· Difficulties with communication and finding the correct words
· Difficulties with numbers or money
· Feeling anxious and withdrawn
· Repeating questions
What is vascular dementia?
Vascular dementia is the second most common type of dementia. Approximately 20% of people who have had a stroke develop vascular dementia, and ‘mini strokes’ can also be a cause. Keeping the heart and blood system (vascular system) healthy can protect against vascular dementia. Many people living with vascular dementia are more aware of their condition and its impact which means there appears to be higher rates of depression in those living with vascular dementia than with other forms of dementia.
What is Lewy body dementia?
Approximately 10% of people living with dementia have DLB (dementia with Lewy bodies). Lewy bodies are protein deposits that affect the brain’s functioning. Lewy Body Dementia shares symptoms with Alzheimer’s and Parkinson’s disease. Therefore, it sometimes hard to tell it apart and diagnose someone with DLB. People with Lewy body dementia can experience:
· Difficulty sleeping
· Problems with movement and balance
What is frontotemporal dementia?
Frontotemporal dementia, also called Pick’s disease or frontal lobe dementia, is less common than other types of dementia. It is a more common cause of dementia in people between the ages of 45-65. Memory is less affected by this type of dementia, but other frontotemporal dementia symptoms can include:
· Changes in personality
· Changes in behaviour
· Changes in language
· Developing obsessions, such as with certain food or drinks.
What is mixed dementia?
Around 10% of people with dementia are diagnosed with mixed dementia, meaning they have more than one condition that affects the brain. People will typically experience a combination of Alzheimer’s and vascular dementia. Less frequently, people with mixed dementia have Alzheimer's and dementia with Lewy bodies.
What is Mild Cognitive Impairment?
Mild cognitive impairment (MCI) is a condition that causes people to have memory loss and problems with thinking, but is not a type of dementia. However, if someone has MCI it can mean that they have more of a chance of developing dementia.
What are the stages of dementia?
Dementia is a condition that progresses as a person gets older. Therefore, there are different stages of the condition. People can develop dementia at different speeds and will have different experiences of the stages of dementia. For example, someone may not experience the early stages of dementia for as long as someone else, but may stay in the middle stages of dementia for a long time. The stages of dementia include:
· Early-stage dementia
· Middle-stage dementia
· Late-stage dementia
· Final stages of dementia
Early stages of dementia
During the early stages of dementia, symptoms can include forgetfulness, losing track of time and becoming lost in places that are usually familiar. There are many treatments available to people with early-stage dementia that help with cognitive skills and retaining memory.
Middle stages of dementia
During the middle stages of dementia, symptoms become more evident and daily life can become more challenging. Middle-stage dementia symptoms can include:
· Forgetting recent events and names
· Getting lost at home
· Finding it hard to communicate
· Needing assistance with personal care
· Behavioural changes such as wandering around
· Repeating questions
Some people living with middle-stage dementia can still benefit from certain treatments and therapies. However, they may need increasing help and may require full-time care.
Late-stage dementia means that a person’s mobility and cognition have been seriously affected by dementia, making them dependent on others. During the later stages of dementia people experience serious memory problems and physical symptoms become clearer. People living with late-stage dementia can still have a good quality of life if they receive the right support and care. Late-stage dementia symptoms can include:
· Becoming unaware of time or place
· Not recognising relatives or friends
· Difficulties with personal care
· Troubles with walking and balance
· Behavioural changes - often including aggression
· Bladder incontinence and bowel incontinence
· Difficulties with eating and drinking
· Vulnerability to infections, such as pneumonia
Final stages of dementia
Final-stage dementia symptoms are similar to late-stage dementia symptoms. However, someone living with final-stage dementia may experience more pain, other physical conditions and may be approaching the end of life. Final-stage dementia symptoms can include:
· Loss of consciousness
· Restlessness and feeling agitated
· Difficulties when swallowing
· Cold hands and feet
· Breathing difficulties
An end of life carer or palliative carer can support people living with late-stage dementia and their families before, during and after the final stages of the condition.
How is dementia diagnosed?
Whilst a diagnosis of dementia can feel daunting, getting a diagnosis allows people to explain their behaviour to those around them, such as their family. Moreover, a diagnosis allows someone to get the care, treatment and support they need to sort finances, legal issues and decisions about the future.
You or your loved one should see a GP if you are worried about memory problems or think you/they could have dementia. With the right care and support, people living with dementia can lead fulfilling, happy lives.
GP Dementia Assessment
When seeing a GP for a dementia assessment, take someone you trust to the appointment with you. This way, that person can make notes and remind you of what was said if you forget later. In an appointment about dementia, a GP will usually:
· Ask about symptoms
· Ask about a person’s health
· Ask if someone finds daily activities difficult, such as washing, cooking, shopping or paying bills
· Do a physical examination
· Carry out some tests, maybe a blood or urine test to see if dementia is the cause of a person’s symptoms
· Ask someone to do a memory/cognitive test
A GP will be able to rule out other causes of memory problems during the appointment. Memory problems are not just a sign of dementia, they could also point to:
· Delirium - confusion
· An under-active thyroid
· Side effects of medicines
A GP might refer someone to a memory clinic to see dementia specialists if they cannot determine whether someone has dementia. The specialist will carry out more cognitive tests and will usually request an MRI or CT scan to look at a person’s brain. A dementia specialist could be a:
· Psychiatrist specialised in dementia
· Doctor specialising in elderly care
· Neurologist – specialising in the brain and nervous system
What if someone doesn’t want to get a dementia diagnosis?
Understandably, someone might feel anxious about seeing a GP or a specialist about their symptoms and may refuse at first. However, it is important to get a dementia diagnosis so you can plan for the future. If the person in question does not want to get a diagnosis, you should:
· Be patient and kind
· Reassure the person that their symptoms may be caused by something other than dementia
· Contact the GP, they might be able to make a home visit or give you advice about someone’s health
Support for people living with dementia, their families and carers
You may know a relative or friend who is living with dementia. We want to support you as best as we can by allowing you to choose the right carer and care type for you or your loved one.
There are many dementia charities in the UK that offer additional support and help you to get in touch with people who are going through a similar situation:
· Call the Dementia UK helpline – 0800 888 6678
· Call the National Dementia helpline – 0300 222 11 22
· Go to the Alzheimer’s Society UK website for more information and advice.
· Visit the Carers Trust for support for carers.
· Discover the Reading Well Books on Prescription service in your local libraries.
Whilst getting a dementia diagnosis can be daunting, we hope that the organisations listed can help you get the information and advice you are looking for.
If you are looking for a specialist dementia carer, our platform and app give you choice and control over who you or your loved-one's carer will be so you can choose the person that best suits your needs, lifestyle and values.