One in three people in the UK will develop dementia in their lifetime. Dementia isn’t a single disease, but an umbrella term for a group of conditions that cause a decline in brain function, affecting memory, reasoning, communication, and the ability to perform everyday tasks.

Though most common in older adults, it is not a normal part of ageing. It is currently the leading cause of death in the UK, and despite decades of research, there is no cure.

See below the video from Alzheimers Research UK – What Is Dementia?

Contents

1. How does dementia present?
2. What else could it be?
3. Types of dementia.
4. Diagnosing dementia.
5. Treating dementia.
6. Driving with dementia.
7. Capacity and dementia.
8. Planning ahead.
9. On a personal note.
10. More resources.

How Does Dementia Present?

Dementia symptoms can vary by type, but some core features are common throughout. The onset is typically gradual, and people with dementia often do not recognise the changes in themselves. Early signs may be subtle, but tend to worsen over time.

Cognitive Impairment

This is the ability to think, learn, remember, use judgment, and make decisions.

• Memory problems: Repeatedly forgetting things or recent events, repeating questions, struggling to retain new information, or misplacing items frequently.
• Disorientation: Getting lost in familiar places or losing track of time.
• Impaired judgement: Making risky financial decisions, trusting strangers too easily, or dressing inappropriately for the weather.
• Language difficulties: Struggling to find words or follow conversations,
• Loss of reasoning: Difficulty problem-solving or following complex instructions.

Behavioural and Psychological Symptoms of Dementia (BPSD)

BPSD is a group of non-cognitive symptoms, and can include:

• Wandering.
• Disinhibited behaviour: Sexual disinhibition, or risky behaviours.
• Agitation and aggression: Often triggered by confusion or fear, for example physical aggression or swearing.
• Apathy: A lack of enthusiasm or interest in once-enjoyed activities.
• Depression and anxiety.

What Else Could It Be?

Before a formal diagnosis of dementia is made, clinicians must rule out other reversible conditions that can mimic its symptoms. This includes:

• Delirium: A sudden, temporary state of confusion, often triggered by infection or other illnesses.
  • Dementia patients can also experience episodes of delirium, and are actually at higher risk of this than the general population.
• Thyroid disorders: Both an under-active and over-active thyroid can cause cognitive issues,
• Electrolyte imbalances in the blood: High levels of calcium, or low levels of sodium (salt), for example, can cause similar symptoms.
• Vitamin deficiencies: Vitamin B12 or folate deficiency in particular can lead to memory problems.
• Normal pressure hydrocephalus: An excess of cerebrospinal fluid builds up in the brain, causing dementia-like symptoms.
• Pseudodementia: Cognitive decline that results from an underlying mental health condition in older people, commonly depression.
• Chronic sleep deprivation: Long-term lack of sleep is linked to cognitive impairment,
• Brain tumours
• Korsakoff syndrome (due to severe thiamine deficiency, most commonly caused by alcohol misuse. It presents with memory problems, confabulation (“making things up”, though unintentional!) and confusion)

The Main Types of Dementia?

There are over 200 different subtypes of dementia, but in this article today we will cover the most common types.

Alzheimer’s Disease

The most common type of dementia, Alzheimer’s disease, accounts for up to 80% of all dementia cases. The earliest sign tends to be memory loss – in particular remembering newly learned information, a.k.a. short-term memory – and progresses to affect language, decision-making, and mood.

Risk factors include increasing age (it is more common in people over 65 years old), family history, smoking, Down’s syndrome (Trisomy 21), certain health conditions (such as diabetes and high blood pressure).

In Alzheimer’s, certain proteins in the brain start behaving abnormally, disrupting the way nerve cells (neurones) communicate and work together. Over time, this damage spreads, leading to the symptoms of dementia. Two key proteins are involved:

1. Beta-amyloid: This protein forms sticky clumps, called plaques, outside of brain cells. Think of plaques being a residue that builds up and blocks the normal flow of signals between neurones.
2. Tau: Inside the brain cells, a protein called tau, which usually helps stabilise the structure of the cells, starts to malfunction. It becomes tangled up into twisted threads, known as neurofibrillary tangles. These tangles disrupt the internal transport system of the neurones, making it harder for them to communicate properly.

Together, these plaques and tangles cause brain cells to stop working, lose their connections, and eventually die. Over time, this leads to the shrinking of certain areas of the brain, especially the ones responsible for memory, thinking, and decision-making.

Vascular Dementia

This is the second most common type of dementia, and occurs when blood supply to the brain is reduced, commonly due to strokes or small vessel disease. It can occur alongside Alzheimer’s disease.

It tends to progress in a “step-wise” manner, meaning symptoms will suddenly get worse, before plateauing for a while. There is an overall deterioration, though, in cognition over several months to years.

Risk factors include high blood pressure, high cholesterol, diabetes, smoking, atrial fibrillation (an irregular heartbeat), and CADASIL*.

*CADASIL (“cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy”) – a rare, inherited condition, that results in the thickening of blood vessel walls, reducing the flow of blood to the brain, increasing the risks of strokes.

People with vascular dementia tend to experience neurological symptoms in addition to typical dementia symptoms. These can depend on the area of the brain affected, and can lead to symptoms such as weakness or an unsteady gait. Changes in mood, behaviour and personality, typically occur earlier than memory problems too.

Dementia With Lewy Bodies (DLB)

In dementia with Lewy bodies, abnormal clumps of the protein alpha-synuclein build up within neurones. These clumps, called Lewy bodies, disrupt how the neurones send signals, affecting thinking, movement, and perception.

Parkinson’s disease and DLB share the same underlying physiology, a.k.a Lewy body deposition, which is why people with DLB often have symptoms of Parkinson’s disease (tremor, stiff muscles, balance issues, and slow movements). This also explains why people with Parkinson’s can go on to experience the symptoms of dementia – this is known as Parkinson’s disease dementia (PDD).

In Parkinson’s, these clumps mainly affect a part of the brain called the substantia nigra, which controls movement, whereas in DLB deposition tends to be more widespread.

Lewy body dementia can be differentiated from Parkinson’s disease dementia based on the timing of symptoms:

• If cognitive symptoms develop after at least a year of motor symptoms like tremors, it’s called Parkinson’s disease dementia (PDD).
• If cognitive symptoms start at the same time as, or before, the motor symptoms, it’s called DLB.

DLB can also be associated with a type of sleep disorder called REM sleep disorder, where people physically act out their dreams when they’re asleep. Symptoms in DLB can also fluctuate a lot more from day to day, mimicking “delirium” more closely.

Risk factors include increasing age, male gender, and family history.

Frontotemporal Dementia

This type of dementia is a rarer type, but a more common cause of dementia in people under 65 years old. Symptoms can include:

• Personality change and inappropriate social behaviour, as the frontal and temporal lobes of the brain are primarily affected.
• Short-term memory doesn’t tend to be affected until later on.
• Language problems such as word finding difficulties, using words incorrectly, or getting words in the wrong order.

Early-onset Dementia

This is where a person develops dementia before the age of 65. It is anticipated that nearly 80,000 people across the UK are living with this type. The main risk factor for this type is a positive family history.

Diagnosing Dementia

Diagnosing dementia involves careful evaluation by healthcare professionals. Your GP can carry out the initial assessment, and they may then refer you on to a specialist memory clinic for further assessment. Assessment and testing often includes:

1. Medical history and physical examination:
   • A detailed history of the symptoms you’ve been experiencing, when they started and their progression, as well as screening for other health conditions that can cause similar symptoms.
2. Cognitive testing:
   • Tests like the Mini-Mental State Examination (MMSE) or the Montreal Cognitive Assessment (MoCA) assess memory, language, problem-solving, and other cognitive functions.
3. Imaging:
   • CT or MRI head scans may be used, as these can detect strokes, brain tumours, damage to blood vessels or brain shrinkage that can occur in dementia.
   • SPECT-CT scans may be used to look at the blood flow in the brain.
     • DaTSCAN is useful in the diagnosis of Parkinson’s disease dementia or dementia with Lewy bodies. A radioactive dye is injected into your arm, and then images are taken on a SPECT which show how well the dye is taken up in different parts of your brain.
4. Blood tests:
   • To rule out reversible causes of dementia-like symptoms, such as infection or electrolyte imbalances.

See the video below by Alzheimer’s Research UK, describing the process of being investigated for and diagnosed with dementia:

Treating Dementia

While there is no cure, various approaches can help manage symptoms and improve overall quality of life for those affected. Treatment strategies often combine medication, lifestyle modifications, and supportive therapies.

Medications

• Acetylcholinesterase inhibitors (e.g., Donepezil) or NMDA receptor antagonists (e.g., Memantine):
  • These may improve memory and thinking in Alzheimer’s, dementia with Lewy bodies, Parkinson’s disease dementia, and mixed dementia.
• Immunotherapy drugs e.g., Lecanemab and Donanemab:
  • Thesepromise in slowing the rate of cognitive decline in patients with early Alzheimer’s disease. Both of these medications have been licensed for use in the UK by the Medicines products Regulatory Agency (MHRA), however, current NICE clinical guidance doesn’t recommend their use in the NHS on the grounds that the benefits were “too small to justify the costs“.
• Antidepressants or antipsychotics e.g., Haloperidol:
  • May be prescribed for mood or behaviour changes, particularly in frontotemporal dementia, but these are used cautiously due to potential side effects.

There are no specific medications to treat vascular dementia, though there are medications that can help treat underlying conditions that may be contributing to or increasing the risk. For example, a statin may be used to help lower cholesterol levels.

Non-Medicative Strategies

• Environmental adjustments:
  • For example memory aids such as labelled cupboards or alarm clocks, can help people maintain a good quality of life.
• Coping strategies:
  • Specific techniques to help settle someone with dementia who may be distressed or agitated. Click here to find out more.
• Healthy Diet:
  • A balanced diet rich in fruits, vegetables, whole grains, and healthy fats can support brain health.
• Exercise:
  • Regular physical activity can improve mood and slow cognitive decline.
• Mental Stimulation:
  • Cognitive stimulation therapy (CST) – taking part in group activities that are designed to help improve memory, language, and problem-solving skills. This is more useful in mild-moderate dementia.
  • Reminiscence and life story work – talking and reminiscing about your life, and things that have happened, helping to strengthen your sense of identity.
  • Activities like puzzles, reading, or social engagement help maintain cognitive function.
• Support networks:
  • Charities like Alzheimer’s UK and Dementia UK offer support and guidance to those with dementia and their carers/loved ones.

Driving with Dementia

It is a legal requirement to inform the DVLA. You may still be able to drive with dementia depending on the severity of your symptoms, but your license will likely only be valid for a year at which point it’ll be reviewed (or occasionally up to 3 if early dementia). Read more here.

Capacity and Dementia

As dementia progresses, individuals may become unable to make decisions for themselves; they are said to “lack (mental) capacity“.

Mental capacity is time and decision specific, meaning a person may be able to make some choices at a certain point in time, while lacking the ability to make others at another. It will be assessed (and re-assessed) whenever a major decision needs to be made.

The Mental Capacity Act (2005) is a law that helps protect people in England and Wales who lack capacity. It lays out key principles that help assess and support decision-making in individuals that lack capacity.

If someone is found to lack capacity, decisions must be made in their best interests, considering their past and present wishes, feelings, and values. Families and healthcare professionals play a crucial role in supporting decision-making, ensuring the least restrictive options are taken to maintain patient autonomy* wherever possible.

*Autonomy = the right of adults with capacity to make informed decisions about one’s own care.

Planning Ahead

Planning ahead is crucial for individuals diagnosed with dementia, as it allows them to make their wishes known while they still are able to take part in the decision-making process. It is worth considering the following:

• Advanced Decisions to Refuse Treatment (ADRT, or living will):
  • This is a legally binding document that allows a person to outline specific treatments they do not want to receive in the future in specific situations, if they lose the capacity to make or communicate decisions. This could include refusing life-sustaining treatments, like cardio-pulmonary resuscitation (CPR).
  • It ensures that healthcare professionals respect the person’s preferences, as long as the Advance Decision is valid and applicable to the situation.
• Lasting Power of Attorney:
  • This is a legal arrangement, allowing a person to appoint on or more trusted individuals (known as “attorney’s”) to make decisions on their behalf should they lose the capacity to make this decision themself. LPAs must be registered with the Office of the Public guardian to be valid. There are two types:
    • LPA for Health and Welfare – covers decisions about medical treatment, care, living arrangements, and daily needs.
    • LPA for Property and Financial Affairs – covers managing finances, paying bills, and selling property.
• A Preferred Place of Care Plan:
  • This documents where a person wishes to be cared for if their health deteriorates, particularly towards the end of life. Options may include staying at home, moving to a care home, or being cared for in a hospital or hospice. This helps healthcare professionals and family members align care with the person’s preferences, providing comfort and dignity. This isn’t legally binding.
• Making a Will:
  • This is a legal document specifying how a person’s money, property, and possessions should be distributed after their death. This ensures that the person’s wishes are followed, and helps to prevent disputes among loved ones.

These conversations can be challenging, as discussing declining independence or mortality often feels upsetting. However, addressing these topics early can alleviate uncertainty for loves ones and provide peace of mind that their preferences will be respected, even if they’re unable to communicate their wishes at that point. Support and guidance on advanced care planning is available from your GP, as well as organisations such as Dementia UK and the Alzheimer’s Society.

On a Personal Note

My grandad was diagnosed with Alzheimer’s when I was around 12 years old, and he passed away when I was 17. His initial symptoms were subtle – forgetting familiar words that we all knew he once knew. This progressed to repeating the same stories over and over, to no longer being able to drive, to frequent wandering, and eventually, not being able to communicate at all.

I remember the challenges of being out in public with him, as he would try to strike up conversations with strangers, retelling the same stories. Often, people would misunderstand or even laugh, which broke my heart.  One Christmas he was even sectioned and taken to an Old Age Psychiatry ward – a deeply distressing experience for our family.

Despite these hardships, my grandad lives a happy life, surrounded by the love and support of my grandma, my mum, my aunty, and the rest of our family and friends. He was a joy to be around, and I will always remember his smile.

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Understanding dementia — its complexities, symptoms, and management — is vital for everyone, so that we can help those affected live with dignity and purpose. If you or someone you know is impacted by dementia, you are not alone – there is support out there.

I’d love to hear from you, whether it’s sharing your thoughts on this article, or your own experience with dementia if you feel comfortable – please leave a comment down below!

More Resources

Admiral Nurse Dementia Helpline – if you need information, advice, or support, with anything regarding dementia, call 0800 888 6678 to speak to a specialist dementia nurse for free.

Alzheimer’s Society Dementia Support Forum – a community forum where you can seek support from others, however you have been affected by dementia.

Advice on Advanced Care Planning:

Advance Care Planning

Alzheimer’s Society – advice on Advanced Care Planning.

GOV.UK – advice on making, registering or ending a lasting power of attorney.

Citizens Advice – advice on making a will.