The Dementia Life Dictionary
When someone you love is diagnosed with dementia, you’re suddenly expected to understand a language nobody taught you. Doctors use terms you’ve never heard. Letters arrive about benefits you didn’t know existed. People mention things like sundowning and LPA as if you should already know what they mean.
You shouldn’t have to Google your way through a diagnosis. So we built this.
The Dementia Life Dictionary is a plain-English guide to the terms, diagnoses, legal processes, and emotional experiences that come with dementia. Every definition is written by someone who has stood where you’re standing — not copied from a medical textbook.
Where possible, click on the term to learn more, including what it actually means for your family and where to go next.
Advance Directive
A legal document that records your loved one’s wishes about future medical treatment, in case they lose the ability to make or communicate those decisions themselves.
Agnosia
The loss of ability to recognise familiar objects, sounds, or people — even though the senses themselves still work. It’s not a vision or hearing problem. It’s the brain no longer making sense of what it’s receiving.
Alzheimer’s Disease
The most common type of dementia, caused by a build-up of proteins in the brain that damage nerve cells over time. It usually starts with memory loss and gradually affects thinking, language, and daily functioning
Ambiguous Loss
The experience of grieving someone who is still physically present but psychologically or emotionally not present. Common among families living with dementia or people who have a family member that's missing. Often goes unrecognised by the people around you.
Anosognosia
When someone with dementia genuinely doesn’t know or believe that anything is wrong. This isn’t denial — it’s a neurological symptom. The part of the brain responsible for self-awareness has been affected.
Anticipatory Grief
Grieving the losses that are coming — or the losses that are already happening in slow motion. It’s mourning the person your loved one was, while they’re still here.
Aphasia
Difficulty with language — finding words, forming sentences, or understanding what others are saying. It doesn’t mean the person has nothing to say. It means the pathway between thought and speech has been disrupted.
Apraxia
The loss of ability to carry out familiar physical movements, even though there’s no muscle weakness. Things like buttoning a shirt, using cutlery, or brushing teeth become difficult or impossible.
Attendance Allowance
A UK benefit for people over State Pension age who need help with daily living because of a physical or mental condition, including dementia. It’s not means-tested and you don’t need to have a carer to claim it.
Carer’s Allowance
A weekly benefit for people who spend at least 35 hours a week caring for someone. The amount is modest and the eligibility rules are restrictive, but it’s worth checking whether you qualify.
Cholinesterase Inhibitors
A group of medications (including donepezil, rivastigmine, and galantamine) prescribed to help manage symptoms of Alzheimer’s disease. They don’t cure or stop the disease, but they can help with memory, thinking, and daily functioning for a time.
Confabulation
When someone with dementia fills gaps in their memory with information that isn’t accurate, without realising they’re doing it. This isn’t lying. The brain is doing its best to make sense of incomplete information.
Court of Protection
A court that makes decisions on behalf of people who lack the mental capacity to make certain decisions for themselves. If no Lasting Power of Attorney was set up in time, this is often the route families have to take. It can be slow and expensive.
Dementia
An umbrella term for a group of symptoms caused by damage to the brain. It’s not a single disease. It affects memory, thinking, communication, and the ability to carry out everyday tasks. Alzheimer’s disease is the most common cause.
Deprivation of Liberty Safeguards (DoLS)
Legal protections for people in care homes or hospitals who lack the mental capacity to consent to their care arrangements. If someone is being kept somewhere for their own safety but can’t agree to it, DoLS ensures this is properly authorised and reviewed.
Donepezil
The most commonly prescribed cholinesterase inhibitor for Alzheimer’s disease. Brand name Aricept. It doesn’t stop the disease but can help manage symptoms in the early to mid stages.
Dysphagia
Difficulty swallowing, which can develop as dementia progresses. It increases the risk of choking and chest infections, and often means food and drink need to be adapted in texture.
Frontotemporal Dementia (FTD)
A type of dementia that affects the front and sides of the brain, which control behaviour, personality, and language. It often starts earlier than Alzheimer’s and can cause significant personality changes before any memory loss appears.
Lasting Power of Attorney (LPA)
A legal document that lets someone you trust make decisions on your behalf if you lose the ability to make them yourself. There are two types: one for finances and property, one for health and welfare. Set this up as early as possible after diagnosis — it cannot be done easily once capacity is lost.
Lewy Body Dementia
A type of dementia caused by abnormal protein deposits (Lewy bodies) in the brain. It can cause visual hallucinations, fluctuating alertness, movement difficulties similar to Parkinson’s, and disturbed sleep.
Memantine
A medication prescribed for moderate to severe Alzheimer’s disease. It works differently from cholinesterase inhibitors and is sometimes prescribed alongside them.
Memory Clinic
A specialist NHS service where people are assessed for memory problems and dementia. This is usually where a formal diagnosis is given, after referral from a GP.
Mental Capacity Act
The law in England and Wales that protects people who may lack the capacity to make certain decisions. It sets out how capacity should be assessed and who can make decisions on someone’s behalf.
Mild Cognitive Impairment (MCI)
A stage between normal age-related memory changes and dementia. Not everyone with MCI develops dementia, but it’s a risk factor and worth monitoring with your GP.
Mixed Dementia
When someone has more than one type of dementia at the same time — most commonly Alzheimer’s disease and vascular dementia together.
NHS Continuing Healthcare
A package of care fully funded by the NHS for people with complex, ongoing healthcare needs. Eligibility is assessed through a checklist and then a full assessment. Many families don’t know this exists.
Person-Centred Care
An approach to care that focuses on the individual — their history, preferences, personality, and needs — rather than treating everyone with dementia the same way.
Respite Care
Temporary care that gives the primary carer a break. This could be a few hours at home, a day centre visit, or a short stay in a care home. It’s not a luxury — it’s essential.
Sundowning
An increase in confusion, agitation, or anxiety that tends to happen in the late afternoon or evening. Nobody fully understands why it happens, but changes in light, tiredness, and disrupted body clocks all seem to play a role.
Vascular Dementia
The second most common type of dementia, caused by reduced blood flow to the brain — often as a result of strokes or small vessel disease. Symptoms can appear suddenly or develop gradually.
Young-Onset Dementia
Dementia diagnosed before the age of 65. It’s the same diseases, but the impact is often different — affecting careers, mortgages, young families, and identity in ways that later-life dementia doesn’t.
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