Holding a family meeting about a parent's care

It is worth calling one after a fall, when a parent is coming home from hospital, after a diagnosis such as dementia, or when it has become clear that one person is carrying nearly all of it. Each of these brings a decision with it: whether your parent needs help at home, how much, and who will organise it. If one of them has just happened, what to do after a fall and a trip to A&E and how hospital discharge works cover the first few days, and the meeting can come once the immediate crisis has passed.

A meeting is also worth holding before anything goes wrong, while everyone is calm and your parent can say what they would want. It is one part of organising care as a family, and the wider guide to caring for a parent covers the rest.

Keep the group to the people who will do something or whose views your parent wants heard. In a large group it is hard for everyone to be heard, so it can be better to meet as a smaller group and send everyone else the note afterwards. Using friends, family and neighbours to help you care covers what is fair to ask of people outside the immediate family.

The law starts from the same place. Under the Mental Capacity Act 2005, a person must be assumed to have capacity unless it is established that they lack it, must be given all practicable help to make a decision before anyone concludes they cannot, and is not to be treated as unable to decide merely because they make an unwise decision. So a parent who can understand and weigh up the choice in front of them decides, even when the family would choose differently.

Capacity is assessed one decision at a time, and it can vary through the day. A diagnosis of dementia does not on its own mean your parent cannot decide where they live or who helps them wash. Mental capacity and how it is assessed explains the test, and what happens when a decision has to be made in your parent's best interests.

1. 1

   Ask them first, and alone

   Before anyone else is invited

   Tell them the family would like to sit down together, and ask what they want to talk about and what they would rather not. Their list goes at the top of the agenda.
2. 2

   Hold it where and when they are at their best

   Their home, their time of day

   If mornings are hard or they tire by late afternoon, pick the hour that suits them. A familiar room helps more than a neutral one.
3. 3

   Give them the agenda a few days ahead

   So nothing is sprung on them

   A short written list lets them think about their answers, and shows that the meeting is about what they want rather than what the family has decided.
4. 4

   Let them speak first, and check what they have understood

   At the meeting

   Slow down for hearing or memory problems, one person talking at a time. Before anything is agreed, ask them to say it back in their own words.
5. 5

   Ask them to agree the note before it goes round

   Afterwards

   Read it with them or give them a copy first. If they disagree with a line, the line changes.

If your parent has said they do not want help at all, a meeting may not be the right first step. How to talk to a parent about getting a carer covers that conversation, which usually goes better one to one.

A council care needs assessment is the most useful single fact to have. The NHS says anyone can ask for one, that it is free, and that someone from the council such as a social worker or occupational therapist carries it out, looking at how your parent manages everyday tasks like washing, dressing and cooking. You can ask for it on your parent's behalf. It can take a few weeks, so the meeting does not need to wait for it, but a written assessment gives the family an outside view to work from. The NHS page on getting a needs assessment explains how to ask.

If you have kept notes, bring them. A care diary kept for a week or two shows what happens at home in a way that is hard to describe from memory, and it is often what persuades a sibling who visits once a month. For the money, the cost of care guide sets out each kind of care, and in England the council's financial assessment treats capital above £23,250 as enough for your parent to pay for their own care. Attendance Allowance is worth checking whatever your parent's savings. To find out whether a power of attorney is registered, the Office of the Public Guardian offers a free search of its registers and says it will respond within five working days.

Your parent's wishes. Start with what your parent wants, in their words: where they want to live, what help they would accept, and what matters most to them day to day. Everything else on the agenda should serve this item.

What help is needed. Use the facts you gathered, and be specific: which tasks, which days, roughly what time. How many visits a week your parent needs turns a list of tasks into hours.

Who does what. Put a name against every job, including the phone calls, forms and prescriptions that nobody sees. Sharing the care between siblings covers dividing the work fairly, what a sibling who lives far away can take on, and a rota that holds up in a bad week. If the meeting agrees to bring in some paid help, you can search for carers near your parent and compare their rates before the next meeting, so the family is choosing between real people rather than an idea.

Money. Agree who pays for what, and write down any payment a sibling makes and whether it is a gift or a loan. If the family is thinking of paying one of you for the hours you already do, read can my mum pay me to care for her? first, as it affects tax and benefits.

The legal paperwork. A lasting power of attorney lets people your parent chooses act for them if they later cannot. Gov.uk says there are two types, one for health and welfare and one for property and financial affairs, that your parent must have mental capacity when they make one, and that it has to be registered with the Office of the Public Guardian before it can be used. It is your parent's decision whether to make one and whom to appoint. If a sibling already holds it, when a sibling has power of attorney covers what that does and does not allow.

If something goes wrong. Agree who steps in if your parent is taken ill, and who covers if the main family carer is ill. If you get ill: the emergency plan sets out what to write down and where to keep it.

Keeping everyone informed, and the next meeting. Decide where news goes and who talks to the GP, then fix the next date before anyone leaves. Six to eight weeks is long enough to see how the arrangement is working.

It helps to say at the start that the meeting is about the next few weeks, not about who did what in the past. If a sibling will not take part or does very little, when siblings are not helping covers what you can ask of them, and when siblings disagree about a parent's care covers whose decision it legally is.

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If you expect the meeting to be difficult, somebody from outside the family can help. There are three kinds of help to look at.

An advocate supports your parent to say what they want and to be heard. Where your parent is going through a council assessment or care planning and would have substantial difficulty taking part, section 67 of the Care Act 2014 requires the council to arrange an independent advocate if there is nobody appropriate to support them. Outside council processes, local charities, including some local Age UK branches, run advocacy services; Age UK's information and advice service can point you to what is near your parent.

A local carers' centre supports the family carer, and can be a good first call if you are the person doing the most. Carers Trust has a search for local carer services by postcode, and Carers UK has advice for unpaid carers.

A mediator is a trained neutral person who helps people in dispute reach their own agreement. Mediation is usually paid for. The Civil Mediation Council, which covers family and community mediation as well as civil disputes in England and Wales, has a search for mediators.

1. 1

   Agree who takes notes before you start

   At the start

   Ideally not the chair and not the person doing the most care. They write down decisions, not the whole conversation.
2. 2

   Write each decision with a name and a date

   During the meeting

   What was agreed, who is doing it and by when. An item nobody took on is written down as open, so it is not forgotten.
3. 3

   Read it back before people leave

   The last five minutes

   Two minutes of reading aloud catches misunderstandings while everyone is still in the room.
4. 4

   Send it the same day, to everyone

   That evening

   Including anybody who could not come, and a printed copy for your parent if they prefer paper.
5. 5

   Keep it in one place, and bring it to the next meeting

   Six to eight weeks later

   Start the next meeting by going through the note. It shows what has happened and what has slipped.

The note is not the same as a care plan. A care plan sets out what your parent needs and how they like things done, for anybody helping; the note records what the family decided. The care plan guide covers the fuller document, and keeping the family informed covers how news reaches everybody between meetings, so one person is not relaying everything.