Just Diagnosed: where to start

This page is for you if...

You have just been told that you or someone close to you may have dementia, Mild Cognitive Impairment, or no diagnosis of dementia, and you are not sure what to do next. We have written this page from the questions families most often ask in the first appointment.

You will find an overview of what a diagnosis means in 2026, what the immediate next steps look like, the legal and practical things you should not delay, and where to find further help. Each section links to a longer page if you want to read more.

What the outcome usually says

UK memory clinics, including The Dementia Service and most NHS services, increasingly use ICD-11 codes alongside familiar terms. The most common outcomes are:

• Dementia due to Alzheimer's Disease (ICD-11 6D80), which may be sub-classified as late-onset (6D80.1), early-onset (6D80.0) or mixed type with Cerebrovascular Disease (6D80.2).
• Vascular Dementia (ICD-11 6D81), where Small Vessel Disease, infarcts, or chronic ischaemic changes account for the cognitive picture.
• Dementia with Lewy Bodies (ICD-11 6D82) or Frontotemporal Dementia (ICD-11 6D83), which are less common but important.
• Mild Neurocognitive Disorder (ICD-11 6D71), often called Mild Cognitive Impairment or MCI, where there is a measurable cognitive change but everyday independence is preserved.
• No diagnosis of dementia, when the assessment finds no neurodegenerative condition; mood, sleep, sensory or vascular factors are then considered.

Whatever the outcome, the most important step is to read the letter slowly with someone you trust, and to write down the questions that come up. Your assessing clinician should be willing to clarify any wording you are not sure of.

The first 30 days: a calm checklist

You do not need to do everything at once. The actions below are sequenced for most families, though the order can be adjusted to suit you.

Week one

• Read the letter together. Highlight anything you do not understand and prepare a short list of questions.
• Share the letter with your GP practice so it is on the clinical record, and so that the GP can manage onward prescribing and shared care if appropriate.
• Take note of any medications recommended (for example a cholinesterase inhibitor such as Donepezil) and any that need a baseline ECG or blood test before starting.

Weeks two and three

• Begin the legal paperwork: Lasting Power of Attorney for health and welfare, and for property and finances. This is far easier to arrange while capacity is intact, and we recommend it for every adult, not only those with a dementia diagnosis.
• Review vascular risk: blood pressure, cholesterol, blood glucose, smoking, alcohol. These are the most actionable levers for slowing further cognitive decline, particularly in mixed and vascular subtypes.
• Consider driving. A diagnosis of dementia must be reported to the DVLA. Driving may be permitted after a clinical and practical assessment.

Week four

• Establish a simple weekly routine that supports memory and mood: regular meals, hydration, daylight exposure, walking, social contact, and time for the things you enjoy.
• Tell trusted family members and consider whether close friends, your employer or your faith community would benefit from knowing.
• Look at the Alzheimer's Society and Dementia UK websites for emotional and practical support, and find your local memory cafe.

Treatments that may be discussed

If the diagnosis is Alzheimer's, mixed, or related dementias, your clinician may discuss medication. The four cholinesterase inhibitor and NMDA-antagonist medicines licensed in the UK are Donepezil, Galantamine, Rivastigmine and Memantine. None of these is a cure, but they can help with attention, memory and the ability to carry on day-to-day life in approximately 60% of people who tolerate them.

For Mild Cognitive Impairment, medication is not currently indicated. NICE has so far recommended against routine NHS use of the newer disease-modifying antibody treatments Lecanemab and Donanemab. We update this page when the position changes.

Non-pharmacological treatments matter at every stage. Cognitive Stimulation Therapy, music and Reminiscence Therapy, structured routines, regular exercise, and a Mediterranean-style diet all have an evidence base.

Living well from day one

The advice to "live well" is often given in the assessment letter but is rarely spelled out. The four most evidence-backed actions are:

• Move every day. See our exercise page. A brisk 30 minute walk most days, plus two short sessions of resistance work each week, is a realistic and effective target.
• Eat the way the heart likes. See diet and nutrition. Mediterranean and MIND-style eating patterns are associated with slower cognitive decline.
• Look after blood pressure, glucose, lipids and sleep. Each of these has independent links to cognitive trajectory.
• Stay socially connected. Loneliness measurably accelerates decline. See social engagement.

Where The Dementia Service fits in

dementia.co.uk is the consumer-facing information hub powered by The Dementia Service, a UK private memory clinic. The clinic offers virtual assessments, structured clinical interview letters, and access to onward investigations including MRI, ECG, and neuropsychological testing. You can pursue assessment privately for speed and continuity, or through the NHS via your GP, and the two pathways can complement each other. We have a separate page comparing the two.

If you have not had any diagnosis yet

If you are reading this before an assessment, the most useful preparation is to start a brief diary. Note the symptoms you or your family have observed (memory, language, mood, sleep, behaviour), with examples and rough dates. Bring this to your GP or memory clinic appointment. A clear timeline materially helps the clinician reach a confident formulation, and reduces the risk of a missed or delayed diagnosis.