Organising a parent's care as a family

This page sits within the wider guide to caring for a parent, and it starts where every care arrangement should: with the person being cared for. Some parents want a daughter to help them wash, and some would much prefer a stranger. Some want to stay at home whatever it takes, and some have been thinking about a move for a while. Asking early, and writing the answers down in their words, gives the family something to come back to when you disagree later.

Where your parent's memory or understanding is affected, the Mental Capacity Act 2005 sets out how decisions are made. Its five principles apply to the whole family, not only to professionals.

1. 1

   Assume they can decide

   The starting point

   The Act says a person must be assumed to have capacity unless it is shown that they lack it. A diagnosis such as dementia does not settle that on its own.
2. 2

   Help them decide first

   Before anyone decides for them

   Everything practicable has to be tried to help them make the decision themselves: a quieter time of day, fewer choices at once, the information written down.
3. 3

   Allow a choice you would not make

   An unwise decision

   Nobody is to be treated as unable to decide merely because the decision seems unwise to the rest of the family.
4. 4

   If they cannot decide, act in their best interests

   Best interests

   That means what they would have wanted and what is good for them, with the family consulted, rather than what suits the family.
5. 5

   Choose the least restrictive way

   Their freedom

   Of the options that meet the need, pick the one that leaves them the most freedom and control.

Capacity is judged one decision at a time, and it can change through a day. Your parent may be able to choose who comes to help with a bath while struggling with a decision about selling the house. How mental capacity is assessed explains who does the assessment and what they look at.

The NHS guide to needs assessments says the assessment is free and that anyone can ask for one, and that if the council decides your parent does not qualify for its help, it should still give free advice about where to get help locally. Our guide to the care needs assessment walks through what happens on the day and how to prepare.

The carer's assessment is easy to overlook. The Care Act 2014 puts a duty on the council to assess a carer who appears to need support, whatever the level of that need and whatever their finances. The NHS says you can ask for both assessments to be done at the same time. If two of you are caring, each can ask.

Holding a family meeting about care covers who to invite, what to put on the agenda and how to keep it calm. What the meeting has to produce is a plan like the one below. It divides the job into six areas rather than a list of tasks, because an area is something one person can hold from start to finish.

Three things help. The first is counting the jobs nobody sees: the calls on hold to the surgery, the prescriptions, the forms, and being the person your parent rings when they are frightened. The second is not letting distance decide more than it has to. A brother two hundred miles away cannot do the mornings, but he can hold the money and paperwork in full, and a sister abroad can write the weekly update. The third is naming a second person for each area, agreed while everybody is calm, so a bad week does not land on the one who lives nearest.

The day-to-day rota, and what a sibling at a distance can take on, are set out in sharing care between siblings. Siblings are not the only people who can hold an area: a parent's partner, a grandchild or an old friend may be glad to be asked, and using friends, family and neighbours to help covers what is fair to ask of each.

Gov.uk says registration takes 8 to 10 weeks if there are no mistakes in the application, so it is worth starting well before anybody needs to use it. Your parent can appoint more than one attorney. If none has been made and your parent can no longer make decisions, the family has to apply to the Court of Protection to be made a deputy, which means applying to the court. The fuller guide is lasting power of attorney, and LPA and dementia covers timing where a diagnosis is involved.

When one sibling is the attorney, the others still have a place. Gov.uk sets out the duties, which include keeping records of what the attorney does. A good attorney shares those records with the family without being asked. When a sibling has power of attorney covers what the others can reasonably expect, and what to do if they are worried. Anybody concerned that an attorney is not acting in a parent's best interests can report it to the Office of the Public Guardian, which investigates.

1. 1

   Work out what your parent can fund

   First

   Their pension, benefits and savings. In England the council may help once savings are below £23,250, after a financial assessment.
2. 2

   Check the benefits they are missing

   Worth an evening

   Attendance Allowance is not means tested, and a carer may be able to claim Carer's Allowance.
3. 3

   Agree any family contributions in writing

   Before the first payment

   Who pays how much, how often, for how long, and whether it is a gift or a loan to be repaid from the estate.
4. 4

   Decide whether a family carer is paid

   A separate question

   A parent can pay an adult child to care. It affects tax, benefits and, where there is an attorney, needs care over conflicts of interest.
5. 5

   Review it with the rest of the plan

   Every few months

   Write down what each person puts in, in money and in hours, and look at both together.

On benefits, Attendance Allowance is paid to people over State Pension age who need help because of an illness or disability, and our guide covers how to claim. Carer's Allowance is £86.45 a week for somebody caring at least 35 hours a week and earning under the limit. Gov.uk states that you cannot get it if you share the care and the other carer is already claiming for that person, so only one of you can.

If your parent pays one of you to care, can my mum pay me to care for her? covers the tax and benefits. If the attorney is the one paying the care bills, paying for care as an attorney covers what the rules allow. For the size of the bill itself, what care costs sets out the figures by type of care, and what care costs where your parent lives gives a local figure.

When you are ready, search for carers near your parent and compare their rates, reviews and availability. PrimeCarers is an introductory service: the family chooses the carer and agrees the visits directly with them. Before a carer appears, we check their ID, their right to work and an enhanced DBS check issued within the last 18 months, and interview them online. Carers are insured while they work on visits booked through PrimeCarers. We do not check qualifications, training or references. Reviews from PrimeCarers bookings and references the carer has collected appear on their profile, unverified, so check skills and training with the carer before you book.

The person who sets up the account is its owner, and can invite the rest of the family from the My Family page, by email, a copied link or WhatsApp. Each person joins with their own login, so nobody shares a password. An invite lasts seven days and can be resent. The owner chooses a level of access for each person.

When a carer accepts a job, the conversation with them includes the family members on the account, so a brother and sister can both read and reply to the carer rather than relaying messages. Sending messages needs the Owner or Family Member level. The carer's visit reports sit on the Reports tab of your parent's profile, and can be downloaded as a PDF for a date range to give to a GP or a social worker. One account can cover both parents. Sharing care with family on PrimeCarers walks through each step.

The carer's side is set out in the client and carer contract: the carer agrees to use reasonable efforts to work with anybody the client or your parent has chosen to speak for your parent, which may be a family member. If nobody in the family has time to deal with bookings, the managed service adds 5% and handles bookings for you, with a monthly review with you and the carer.

A family group chat is useful for quick messages, but it scrolls away, so nothing you will need later should live only there. Your parent's medical information belongs to them, and a surgery will not usually discuss it without their agreement. Where your parent is content, ask the surgery about family and carer access in the NHS App. The NHS says the two of you need to be registered at the same GP surgery, that the surgery sets it up, and that you may then be able to book appointments, order repeat prescriptions and see test results.

Keeping the family informed covers the weekly update, what to share and what to keep private, and how to include relatives abroad. Whatever the family decides to share, ask your parent first. They may be happy for everybody to know about their hospital appointments and not about their bathroom.

For arguments about the care itself, when siblings disagree about a parent's care sets out whose decision it is and how to get an outside view. When siblings are not helping covers the conversation with a brother or sister who has stepped back, and what to do if they still say no.

The plan should allow for the person doing the most needing to stop, and it should do so before it happens. If you get ill: the emergency plan sets out what to write down and who needs a copy. Respite care covers a planned break, whether that is a carer at home for a fortnight or a short stay elsewhere. If the review keeps finding the same person at the end of their tether, read the signs of carer burnout and treat it as a reason to change the plan. Carers UK is a charity for unpaid carers with advice for families.