Advance Care Planning for Dementia in England: ADRTs, ReSPECT Forms and LPAs

Why Advance Care Planning Matters More in Dementia

Dementia is the one condition where you can predict, with reasonable certainty, that the person will eventually lose the ability to make their own decisions. That makes advance care planning not just useful but urgent — the window of mental capacity is closing, and once it shuts, the legal options narrow dramatically.

Advance care planning is the process of recording a person's values, preferences, and decisions about their future care while they still have the mental capacity to do so. In England, it has specific legal instruments that carry real weight — a GP or paramedic attending in an emergency will act on a properly completed document.

The key question for every family is: has this been done yet? If not, the most important step you can take today is to start the conversation.

The Three Legal Instruments

Lasting Power of Attorney for Health and Welfare. An LPA for Health and Welfare appoints one or more attorneys to make care and medical decisions on the person's behalf once they lose mental capacity. If the LPA includes the specific clause authorising the attorney to make decisions about life-sustaining treatment, the attorney holds significant authority over end-of-life care decisions. Without this clause, life-sustaining treatment decisions fall to the clinical team.

The LPA must be registered with the Office of the Public Guardian before it can be used. Registration costs £92 per LPA (£46 with a low-income remission via Form LPA120 if gross income is under £12,000). Registration takes 12 to 16 weeks, so the earlier it is completed, the better.

Advance Decision to Refuse Treatment (ADRT). A legally binding document under the Mental Capacity Act 2005 that allows a person to specify treatments they do not want in future — for example, refusing antibiotics for a secondary infection, refusing a feeding tube, or refusing CPR. An ADRT can only be made while the person has capacity, and it must be in writing, signed, and witnessed if it covers life-sustaining treatment.

An ADRT is different from an LPA. The ADRT is the person's own voice, frozen in time — it says "I refuse this treatment." The LPA gives someone else the power to make decisions on their behalf. If both exist, they should be checked together for consistency: a later Health and Welfare LPA that gives the attorney authority over the same treatment can override an earlier ADRT. Get advice if the documents conflict.

ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). The ReSPECT process creates a summary form that sits with the patient's medical records and travels with them — in the GP notes, in the care home file, and ideally with the patient if they are transferred to hospital. Unlike an ADRT, the ReSPECT form is not legally binding. It is a clinical tool that helps emergency responders make decisions that align with the patient's known wishes.

The ReSPECT form covers whether the person would want CPR attempted, whether they would want to be admitted to hospital, and what level of treatment intervention they would want. It is completed collaboratively — ideally with the patient, but if capacity is lost, with the family and clinical team together.

When to Have the Conversation

The clinical consensus is clear: as early as possible after diagnosis. In practice, this is hard. No one wants to discuss end-of-life preferences while their parent is still managing daily life independently. But the Mental Capacity Act requires that the person understands the decision at the time they make it — and dementia erodes that understanding progressively.

A parent with early-stage dementia can usually still make and communicate complex decisions. By the moderate stage, they may understand the concept of refusing treatment but struggle to weigh up the consequences. By the late stage, capacity for these decisions is almost always lost.

If your parent has recently been diagnosed, the post-diagnostic review with the memory clinic team is a good time to raise advance care planning. Many memory services have dementia advisers or nurse specialists who can facilitate the conversation — or refer you to a local advance care planning service.

What Happens If No Advance Plan Exists

If your parent loses capacity without an LPA, ADRT, or ReSPECT form in place, medical decisions fall to the clinical team. Doctors must act in the patient's "best interests" as defined by the Mental Capacity Act — which includes consulting family members, but does not give family members decision-making authority.

For ongoing financial decisions, the family may need to apply to the Court of Protection for a property and affairs deputyship order. For welfare decisions such as where to live, professionals must use the Mental Capacity Act best-interests process; a specific Court of Protection application may be needed if there is a dispute. A deputyship application costs £432 in application fees, plus a £100 assessment fee, potentially a £266 hearing fee, and annual supervision fees of £320. The process takes four to six months.

The practical takeaway: every month of delay in setting up an LPA or ADRT is a month closer to losing the capacity needed to make and sign it.

Making It Practical

Start simple. Ask your parent: "If you became very ill, would you want to go to hospital, or would you rather be kept comfortable at home?" Most people have a clear preference. From there, you can work through the specifics — CPR, feeding tubes, antibiotics, hospitalisation — with support from the GP or a dementia adviser.

Write it down. Even an informal written statement of wishes, signed and dated, has evidential value in best-interests decision-making — though it does not carry the legal force of a formal ADRT.

Register the LPA now. If it has not been done, this is the single highest-priority action. The LPA application can be completed online through the Office of the Public Guardian's digital service.

Our Dementia Care in England guide includes the complete LPA walkthrough (including the fee remission process), an ADRT template checklist, and the step-by-step process for requesting a ReSPECT form through the GP.

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