Dementia and Alzheimer’s Disease

None of the changes below mean a person has dementia. They are simply things worth writing down and discussing with a GP, especially if they are new, getting worse, or affecting everyday life.

• Recent memory — forgetting recent conversations or events while older memories stay clear.
• Repeating — asking the same question again within a short time, or retelling the same story.
• Finding words — pausing, substituting words, or losing the thread mid-sentence.
• Planning and organising — struggling with steps in a familiar task, such as cooking a meal.
• Money and appointments — unpaid bills, muddled banking, missed appointments.
• Getting lost — becoming disorientated on familiar routes or in familiar buildings.
• Judgement and decisions — uncharacteristic choices, or being more open to persuasion.
• Mood and personality — anxiety, low mood, irritability, withdrawal, loss of interest.
• Visual perception — misjudging steps, distances, patterns or reflections.
• Movement, balance or falls — slowing, stiffness, shuffling, or new unsteadiness.
• Everyday activities — difficulty dressing, washing, using the phone or the TV remote.

Similar difficulties can be caused by stress, grief, depression, poor sleep, hearing loss, sight problems, side effects of medicines, alcohol, vitamin deficiencies, thyroid problems, infection, pain and many other health conditions. Several of these can be treated, which is one good reason to get things checked rather than assume the worst.^{[4]NHS — diagnosis}

Different diseases affect the brain in different ways, and the pattern of symptoms gives clues about the likely cause. Symptoms overlap a great deal, so the descriptions below are for understanding only — only a proper assessment can work out what is going on. Please do not use them to self-diagnose or to diagnose a relative.

Other, rarer causes exist, and some conditions can mimic dementia entirely. That is why assessment looks at the whole picture rather than one symptom.

There is no single test for dementia. Assessment builds a picture from history, daily functioning, examination and investigations.^{[4]NHS — diagnosis[9]NICE NG97}

• Book a GP appointment and say clearly that the concern is about memory or thinking.
• Take someone trusted if the person wants to, both for support and to describe what they have noticed.
• Describe specific examples and when they began, using the record suggested above.
• Physical and mental health review — including mood, because depression and anxiety can strongly affect memory and concentration.
• Medicine review — prescribed, over-the-counter, herbal and complementary. Some medicines affect thinking.
• Hearing and eyesight — untreated hearing loss and poor vision can look like confusion and make everything harder.
• Blood tests, and urine tests where infection is suspected, to look for treatable causes.
• A brief cognitive assessment — a short set of questions and tasks. It is a screening tool, not a diagnosis.
• Referral to a memory clinic or specialist where appropriate, for a fuller assessment.
• A CT or MRI scan where appropriate, mainly to look at the pattern of changes and rule other things out.

A memory test or brain scan on its own does not diagnose dementia, and no online quiz can diagnose anyone. Diagnosis comes from the whole history, how daily life is affected, examination and investigations taken together.

• the diagnosis and the likely type explained clearly, in words the person and family understand;
• a named contact or service to go back to, where one is available locally;
• written information in an accessible format, including large print or translation if needed;
• a discussion about medication where it is relevant to the type of dementia;
• personalised care planning built around what matters to the person;
• review of physical and mental health, including hearing, sight, teeth, mood and other conditions;
• arrangements for future reviews rather than a single appointment and nothing else;
• information and support for family and carers in their own right;
• an honest discussion of driving, work, money, legal planning and safety.

A diagnosis does not mean someone immediately loses independence or the ability to make their own decisions. Many people continue working, driving for a period, managing their own money, travelling and enjoying their usual life. What changes is that support and planning can now be put in place deliberately rather than in a crisis.^{[6]NHS — living with dementia}

There is currently no cure for most causes of dementia. Treatment and support can still help with symptoms, safety, independence, mood and quality of life, and can make a real difference to how well someone lives day to day. Nobody can promise that lifestyle changes will prevent or reverse dementia.^{[5]NHS — treatment}

Agitation, shouting, walking about, resisting care, withdrawal, disturbed sleep, repeated calling out or hallucinations are usually communication. When words are harder to find, behaviour carries the message. Common causes worth checking include:

• pain — including toothache, arthritis, pressure sores or a full bladder;
• infection, constipation, hunger, thirst or needing the toilet;
• fear, embarrassment, or being rushed during personal care;
• too much noise, too many people, unfamiliar surroundings or poor lighting;
• loneliness, boredom or lack of purpose;
• side effects of medicines, or a recent change in medicine;
• tiredness, or the time of day (distress often increases in the late afternoon).

Look for the cause first and ask for a professional assessment rather than blaming the person. Describe what happened, when, and what was going on immediately beforehand — that pattern is often the answer. Approaches that reduce distress usually work better than medicines, and NICE recommends trying them first in most situations.^{[9]NICE NG97}

• Approach from the front, at eye level, so the person is not startled.
• Introduce yourself by name when needed, without testing them on who you are.
• Reduce background noise — turn the television off before starting a conversation.
• Ask one question at a time and wait; silence is thinking time, not failure.
• Offer limited, clear choices: "tea or coffee?" rather than "what would you like?"
• Avoid arguing over mistaken beliefs. Correcting someone repeatedly usually causes distress without changing anything.
• Acknowledge the feeling behind what is said — "you sound worried about your mum" — and respond to that.
• Never talk about the person as though they are not in the room.
• Protect privacy during personal care, and explain each step before doing it.
• Respect culture, faith, language, relationships, personal appearance and lifelong preferences.
• Keep asking the person what they want, for as long as they can tell you in any way.

If you look after someone, you are a carer even if you would never use that word, and even if the person is your husband, wife, parent or friend. You are entitled to support in your own right.^{[12]NHS — support for carers}

Legal planning is easiest and cheapest when it is done early, while the person clearly has the relevant capacity. The systems and the terminology are not the same across the UK.

Being a relative does not by itself give anyone the right to access someone's bank account or make decisions for them. Banks have their own processes, and formal authority is usually needed.

It is worth checking eligibility properly rather than assuming nothing applies. Rules change, and amounts are not quoted here because they are updated regularly — use the official pages and a benefits calculator.

• Attendance Allowance — for people over State Pension age who need help or supervision because of a condition. It is not means-tested and does not depend on savings.
• Personal Independence Payment (PIP) — for eligible working-age people, including many with young-onset dementia. Adult Disability Payment applies in Scotland.
• Pension Credit — tops up income for eligible older people and can unlock other help.
• Carer's Allowance — for eligible carers providing substantial care. Carer Support Payment applies in Scotland.
• Universal Credit — where relevant for working-age households.
• Council Tax reductions, disregards or support schemes, depending on circumstances.
• NHS Continuing Healthcare in England, where care needs are primarily health needs. Equivalent arrangements exist in the other UK nations.
• Help with social-care costs from the council, following a financial assessment.

We cannot guarantee that any benefit, reduction or funded care will be awarded — that depends entirely on individual circumstances and current rules.

A person diagnosed with dementia must tell the DVLA in England, Scotland and Wales, or the DVA in Northern Ireland. The insurer must be told too. Not doing so can invalidate insurance and can be an offence.^{[16]GOV.UK — dementia and driving}

• A diagnosis does not always mean an immediate end to driving. Some people are issued a licence for a shorter period and reviewed; others are asked to stop.
• Medical reports, and sometimes a driving assessment, may be requested.
• Continuing to drive without following the rules is dangerous and may be unlawful. If driving has become unsafe, that is a safety matter, not a punishment.
• Stopping driving is a real loss. Plan alternatives before the licence goes, not after.
• Blue Badge applications can be made through GOV.UK or your council; eligibility is assessed and not guaranteed.
• Look into concessionary bus and rail travel, community transport, dial-a-ride, volunteer driver schemes and hospital transport where eligible.

• Telling an employer is a personal decision, but it is usually what makes adjustments and protection possible. Dementia will generally be treated as a disability for equality law purposes.
• Reasonable adjustments might include written instructions, fewer simultaneous tasks, a quieter space, longer deadlines, a mentor, changed hours or a changed role.
• Occupational health can advise the employer on what would help and what is realistic.
• Reducing responsibilities or hours is often better than stopping altogether.
• Before leaving work, get independent benefits and pension guidance — ill-health retirement, pension access, income protection and insurance policies can be affected by how and when you leave.
• Do not resign in a hurry. Take advice first, in writing where possible, and keep copies of everything.

• Take an up-to-date medicine list and a short communication record to every admission.
• Use a hospital passport or a "This is me" style document: name preferred, how the person communicates, what helps, what upsets, how they show pain, eating and drinking needs, glasses and hearing aids.
• Tell staff what the person's usual behaviour and abilities are, so any change is noticed.
• Watch for delirium in hospital — new confusion, drowsiness or agitation should be reported to staff straight away rather than accepted as normal.
• Ask about help with eating and drinking, pain relief, continence support and getting out of bed safely.
• Ask about discharge planning early — what support will be in place at home, who arranges it, and what happens if it is not safe.
• Raise concerns early: PALS in England, or the equivalent patient advice and complaints route in Scotland, Wales and Northern Ireland.^{[29]NHS — PALS}
• When considering home care or a care home, look at staff turnover, dementia training, activities, mealtimes, how residents are spoken to, visiting arrangements, and the most recent inspection report from the relevant regulator.

Dementia is a long-term condition and, for most people, it changes gradually over years. Planning ahead is not the same as giving up, and a diagnosis does not mean the end is near.

• Record future wishes while the person can express them, and revisit the conversation over time.
• Discuss preferred place of care and preferred place of death, if and when the person wants to.
• Ask about an emergency or anticipatory care plan so that out-of-hours services know the person's wishes and are not starting from nothing.
• Palliative care is about comfort, dignity and symptom control. It can run alongside other treatment and is not only for the last few days.
• Some people want to talk about funeral wishes; others do not. Follow their lead rather than pressing the subject.
• Keep the person included. Being talked around, rather than talked with, causes more distress than the subject itself.
• Families need support afterwards too, and grief often begins long before a death.

Across the UK: systems and terminology differ. Start here: