Flying with dementia

The Civil Aviation Authority names dementia as one of the hidden disabilities that UK airports and airlines must help with, so the support exists. Whether it is enough depends on your relative. Somebody in the earlier stages, who still enjoys a change of scene and can follow a simple explanation of what is happening, may manage a short flight well with a familiar person beside them. Somebody who becomes distressed in a busy supermarket, or who no longer recognises where they are when they wake, is likely to find an airport much harder.

You may be wondering whether flying makes dementia worse. We have not found guidance from the NHS or the Alzheimer's Society saying that a flight itself causes dementia to progress. What the Alzheimer's Society does say is that busy places can be more confusing for people with dementia, and a long day of travel, broken sleep and a new bed at the end of it can leave anyone more tired and unsettled for a few days. Plan for that rather than hope it will not happen.

If you are still deciding whether to travel at all, should someone with dementia go on holiday? covers that wider question, and the seven stages of dementia can help you place where your relative is now. A night away somewhere you can reach by car is a gentler way to find out how they manage away from home, and where to take an older person on holiday in the UK has places that do not need a flight. If your relative is unsettled in the evenings, what is sundowning? explains why, and it is a good reason to choose a morning flight.

The rules give your relative a right to free help through the whole journey, as long as you ask in time. The request goes to the airline, travel agent or tour operator you booked with, and they must give you a free way to make it when you book. The law sets the deadline at 48 hours before the published departure time. If you ask later than that, or forget, the airport must still make all reasonable efforts to help, but it is not bound to in the same way, so ask at the point of booking and then check it has been recorded, for the return flight as well as the outward one.

Responsibility is split. The departure airport is responsible from the moment you arrive until your relative is on the plane. The airline is responsible during the flight. The arrival airport takes over from the aircraft door until you leave the airport, including passport control and collecting the bags.

Your relative does not need to use a wheelchair to ask for assistance. The help is there for anybody whose disability makes the airport harder, and dementia is named in the CAA's guidance. Describe what your relative finds hard rather than the diagnosis alone: that they may not follow instructions in a queue, that they become frightened if separated from you, or that they need a quieter place to wait. The CAA's page on how to get help sets out what to expect from the airport.

The CAA also publishes yearly reports on how well each UK airport delivers assistance, which can help if you have a choice of departure airport.

Two rules from the law are worth knowing before you go. If the airline has not given you a time, assistance is due if you reach the airport's assistance point at least two hours before the published departure time, or check-in at least one hour before. Arriving earlier than that avoids a rushed walk to the gate. And where your relative is travelling with a companion, the law says the companion must be allowed to give the help themselves in the airport and when getting on and off the plane, if you ask.

The Alzheimer's Society's travel tips suggest noting what your relative is wearing each day and carrying a recent photograph, so you can describe them quickly if you become separated. They also suggest looking for staff in uniform if you need help. A card in your relative's pocket with your name and phone number is a simple safeguard; what are dementia assistance cards? explains the options, and wandering and leaving the house covers what to do if someone goes missing.

On medical clearance, the CAA's guidance is that someone with a stable condition generally does not need to be cleared to fly. The airline makes that decision, and if it has concerns about how flying might affect your relative it can ask for more information, such as a doctor's note. Even if the airline does not ask, it is sensible to tell your relative's GP about the trip, to ask whether any medicine should be taken at a different time across time zones, and to get a printed list of their prescriptions.

Government guidance on taking medicine in or out of the UK says you need the prescription or a letter from the doctor to show the medicine is theirs, that no more than three months' supply can be brought back into the UK, and that for a controlled drug you should check the rules with the embassy of the country you are visiting. Pack a few days more than the trip needs, split between your own hand luggage and your relative's in case one bag goes astray. The CAA's page on travelling with medicines covers liquids and medical equipment at security.

Before you book, declare the diagnosis to your travel insurer. The Alzheimer's Society's packing advice warns that standard policies can exclude pre-existing conditions, and suggests specialist insurers that cover people with additional needs. The government's MoneyHelper service keeps a directory of insurers that cover more serious medical conditions.

The law allows an airline to insist that a passenger travels with a companion who can give them the help they need, where that is necessary for safety. The CAA explains that this applies particularly when a passenger could not follow instructions or leave the aircraft on their own in an emergency. The companion usually needs their own ticket. If an airline refuses to carry your relative or insists on a companion, it must tell you why straight away, and give the reasons in writing within five working days if you ask.

So we would not suggest that someone with dementia flies alone. Even where an airline would accept a booking, a flight alone means hours with nobody to explain a delay, a change of gate or a request from the crew. The choice is usually between a family member and a paid carer.

A carer travelling with your relative is priced for the whole trip, as one fixed amount quoted before you book, rather than by the hour. The carer's flight, room and meals are agreed between you and the carer as part of that, so put it all in writing before anybody buys a ticket. PrimeCarers is an introductory service, so the arrangement is between you and the carer, who is self-employed. Under the standard contract, a visit you cancel is still payable in full unless the reason is an unplanned hospital stay, illness, or a reason the carer agrees to, so talk through what happens if the flight is cancelled before you book. Can you take a carer on holiday with you? covers how families plan this and what to agree, and can I take a live-in carer on holiday? covers a live-in arrangement.

If your usual carer cannot come, tell us about the trip below: the dates, where you are going and what the carer would do. For now this is for trips within the UK, such as a flight to Scotland, Northern Ireland or one of the islands. Every carer on PrimeCarers has had an ID check, a right to work check and an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 2 years, and an online interview, and is insured while they work. We do not check qualifications, training or references. Reviews and references appear on profiles unverified, so ask the carer directly about their experience with dementia and with travelling; what dementia training a carer should have suggests what to ask. Whoever goes, dementia-friendly holidays covers the accommodation and routine at the other end.

1. 1

   Assistance is not there when you arrive

   At the airport

   Go to the assistance desk or use the help point and give the booking reference. If you asked at least 48 hours ahead, the airport is responsible for getting your relative to the flight.
2. 2

   Your relative becomes very distressed

   Before boarding

   Tell the assistance staff and ask for a quieter place to sit. If they cannot settle, it is reasonable to go home and rebook rather than board; a later flight or a different holiday is better than a frightening one.
3. 3

   You are separated from them

   Anywhere in the airport

   Find a member of staff in uniform at once and describe your relative from the photo and the note of their clothes.
4. 4

   The help was poor or missing

   Afterwards

   Raise it with the airline or the airport first, using their complaint process. If it is not resolved, the CAA explains how to take it further.

The CAA's page on reporting a problem with assisted travel sets out who to complain to for each part of the journey. Keep a note of times and names on the day.

If, after all this, flying looks like too much this year, that is a sensible decision rather than a failure. A break closer to home, respite care while you take a holiday yourself, or a UK holiday with a carer coming too may give everyone a rest with less strain on your relative.