Advance Decision and Dementia UK: Making Your Wishes Clear While You Have Capacity
Updated 31 May 2026 · 9 min read · LPAs & Planning for Incapacity
A dementia diagnosis is frightening — but it is also one of the most important moments to take legal action. While you still have capacity, you can put in place an advance decision to refuse treatment and a lasting power of attorney that together ensure your medical wishes are followed and your chosen person has authority to act on your behalf. Waiting until capacity is lost makes both impossible.
Two Documents — Two Purposes
| Document | What it does | Who decides? | When binding? |
|---|---|---|---|
| Advance Decision to Refuse Treatment (ADRT) | Refuses specific named treatments in advance | You (in advance) | Immediately on application — healthcare professionals must follow it |
| Health & Welfare LPA | Appoints an attorney to make welfare and medical decisions | Your named attorney (guided by your wishes) | Only when you lack capacity — flexible, responds to circumstances |
The two documents are complementary. The ADRT handles specific situations you can anticipate and want to refuse. The LPA handles everything else — appointing a trusted person to respond to circumstances you could not predict. Where they overlap on the same specific treatment, a valid ADRT overrides the attorney’s decision.
Mental Capacity After a Dementia Diagnosis
A dementia diagnosis does not mean you have lost capacity. Many people with early-stage dementia retain full capacity for making legal documents for months or years. Under the Mental Capacity Act 2005, capacity is assessed for each specific decision at the time it is made — a person may have capacity to sign an LPA or ADRT even if they no longer have capacity to, say, manage complex financial affairs.
The time to act is immediately after diagnosis — not when you feel you are getting worse. Having your GP document that you had capacity at the time of making the documents protects the documents against future challenge.
Making a Valid Advance Decision
An ADRT refusing life-sustaining treatment must satisfy section 25(5)–(6) of the Mental Capacity Act 2005:
- In writing — typed or handwritten.
- Signed — by you, or by another person in your presence and at your direction if you cannot sign.
- Witnessed and signed — the witness must sign in your presence.
- Statement acknowledging risk to life — the document must explicitly state that the refusal applies even if life is at risk as a result.
- Specific — name the treatments being refused (CPR, mechanical ventilation, artificial hydration and nutrition) and the circumstances (end-stage dementia, persistent vegetative state, etc.).
A vague document saying “I do not want aggressive treatment” is not binding. Specificity is essential for an ADRT to be legally enforceable.
Making Your ADRT Effective in Practice
- Register it with your GP — ask your surgery to add it to your medical records and note that an ADRT exists.
- Give a copy to your LPA attorney — they need to know it exists and what it says.
- Keep it accessible — in a medical emergency, a document locked in a filing cabinet at home is useless. Consider wearing a medical alert bracelet or card.
- Review it regularly — circumstances and wishes change; an out-of-date ADRT may be challenged.
- Do not revoke it accidentally — any signed statement or conduct inconsistent with the ADRT can raise doubt about its validity. If you want to change it, revoke it formally and make a new one.
The Urgent Action Plan After a Dementia Diagnosis
- Make a health and welfare LPA — name your attorney; register with the Office of the Public Guardian immediately.
- Make a property and financial affairs LPA — financial management when you cannot manage yourself.
- Make or update your will — while you have capacity.
- Consider an advance decision for specific treatments you would refuse.
- Involve your GP — document capacity at the time of making each document.
- Tell your family and attorney where the documents are.
FAQs
What is an advance decision to refuse treatment?
An advance decision to refuse treatment (ADRT), sometimes called an advance directive or living will, is a decision made by a person with capacity to refuse specific medical treatments in the future — even if that refusal might result in their death. It is given legal force in England and Wales under sections 24–26 of the Mental Capacity Act 2005. An ADRT allows you to refuse specific treatments (such as cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition and hydration, or antibiotics) that you would not want if you were to lose capacity and be unable to express your wishes at the time. Key requirements for a valid ADRT: (1) You must have been aged 18 or over when making it. (2) You must have had mental capacity when making it. (3) It must specify the treatment you are refusing. (4) If it refuses life-sustaining treatment, it must be in writing, signed and witnessed, and include a statement confirming you understand the refusal may result in death. Healthcare professionals are legally obliged to follow a valid, applicable ADRT — they cannot override it even if they believe treatment would be in your best interests.
What is the difference between an advance decision and a lasting power of attorney for health and welfare?
An advance decision to refuse treatment (ADRT) and a health and welfare LPA both deal with your medical treatment when you lack capacity, but they work in fundamentally different ways: (1) An ADRT is your direct refusal of specific treatments — it is your voice speaking in the future. A healthcare professional must follow a valid, applicable ADRT regardless of what anyone else (family, attorney, or doctor) thinks is best. It operates automatically, without any decision by another person. (2) A health and welfare LPA appoints a named attorney to make decisions on your behalf. The attorney decides what is in your best interests across a range of medical and welfare decisions — unless you have expressly stated in the LPA that the attorney may refuse life-sustaining treatment. The LPA gives flexibility and a trusted person to respond to unanticipated circumstances; the ADRT gives legal certainty that specific refusals will be followed. The two documents can coexist and be used together: the ADRT covers specific refusals you know in advance; the LPA covers decisions requiring human judgment in response to circumstances you could not have foreseen. Where they conflict, a valid ADRT takes precedence over the attorney's decision in respect of the specific treatment refused.
Can a person with a dementia diagnosis still make an advance decision or LPA?
Yes, if they still have mental capacity. A diagnosis of dementia does not automatically mean a person lacks capacity — many people with early-stage dementia retain full capacity for years. The Mental Capacity Act 2005 requires that capacity be assessed in relation to a specific decision at a specific time. A person may retain the capacity to make an advance decision or LPA even if they lack capacity for other, more complex decisions. The test for capacity under s.2–3 MCA 2005 requires that the person can: understand the relevant information; retain it long enough to make the decision; use or weigh that information as part of the decision-making process; and communicate their decision. For an ADRT refusing life-sustaining treatment, the requirement for full capacity and understanding of the consequences is particularly strict. A GP or specialist involvement in confirming capacity at the time of making the document is strongly recommended where there is any risk of a future challenge. Acting early — as soon as a diagnosis is received — is essential, because capacity cannot be assumed to be preserved indefinitely.
What should an advance decision to refuse treatment include?
A valid ADRT to refuse life-sustaining treatment must meet the requirements of section 25(5)-(6) of the Mental Capacity Act 2005: (1) In writing. (2) Signed by the person making it (or by another person in their presence and at their direction, if the person cannot sign). (3) The signature must be witnessed and the witness must sign in the maker's presence. (4) A statement to the effect that the decision applies even if life is at risk — a specific phrase confirming understanding that the refusal may result in death. The ADRT should also specify: the treatments being refused (as specifically as possible — 'CPR', 'mechanical ventilation', 'artificial nutrition and hydration', 'blood transfusion' etc.); the circumstances in which the refusal applies (for example, 'if I have severe dementia and cannot recognise my family' or 'if I have no reasonable prospect of recovering meaningful consciousness'); and ideally, the circumstances in which it does NOT apply (for example, palliative care and pain relief should never be refused). Less specific language such as 'I do not want aggressive treatment' is difficult to apply and may not bind healthcare professionals.
Will doctors always follow an advance decision?
Healthcare professionals in England and Wales are legally obliged to follow a valid, applicable ADRT under the Mental Capacity Act 2005. However, several conditions must be met for the ADRT to be legally binding: (1) It must be valid — not revoked, made with capacity, and meeting the formal requirements (written, signed, witnessed, and including the life-sustaining treatment statement where required). (2) It must be applicable — the current circumstances must fall within the specific situations described in the ADRT. If circumstances differ materially from what was anticipated, the ADRT may not apply. (3) There must be no evidence the person changed their mind after making the ADRT (for example, by acting inconsistently with it while still having capacity). Practical problems that reduce effectiveness: (a) the ADRT is not immediately available in an emergency — keep it easily accessible and ensure healthcare providers, your GP, and your LPA attorney have copies; (b) uncertainty about whether the ADRT is valid or applicable may lead to a best-interests decision in an emergency; (c) a disagreement between medical staff and family can result in a Court of Protection application for guidance. Registering an ADRT with your GP and ensuring it is on your medical records is the most important step for effectiveness.
What urgent steps should someone with a new dementia diagnosis take?
Acting promptly after a diagnosis is critical — capacity may diminish over time. The priority steps: (1) Make a health and welfare LPA immediately — appoint a trusted attorney to make welfare and medical decisions. Once capacity is lost, an LPA cannot be made; the only alternative is a Court of Protection deputyship order, which is slow and expensive. (2) Make a property and financial affairs LPA — essential for managing bank accounts, bills, and property if you cannot. (3) Consider making an advance decision to refuse treatment — particularly to address specific treatments you know you would not want (for example, regarding life support or artificial nutrition in end-stage dementia). Seek GP or specialist involvement to confirm capacity at the time. (4) Make or update your will — review your will to ensure it reflects your current wishes; while capacity remains, you can make a valid will. (5) Register the LPAs with the Office of the Public Guardian — registration takes several weeks; start immediately. (6) Discuss with family — ensure your family knows about the LPAs, the ADRT, and where the documents are kept. (7) Review finances — ensure joint accounts, direct debits, and important financial arrangements are understood and managed before capacity diminishes.
Make Your Will While You Have Capacity
A dementia diagnosis is the most important reason to act now on your will. WillSafe’s DIY will kit for England and Wales lets you make a legally valid will today — and our LPA guidance covers the health and financial powers of attorney that complete your planning.
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