24-hour dementia care at home: when it is needed

If two or three of the night items are ticked, the question is how the nights get covered. If the change has come on over a day or two, ring the GP first. The NHS advises that behaviour which changes suddenly can have a health cause, such as an infection, pain or a reaction to medicine, and NICE tells clinicians to look for causes like pain or delirium before treating distress. Treating it can settle the nights again.

For the wider picture, our guide to dementia care at home covers every stage, what is sundowning? explains the evenings, and signs that dementia is getting worse helps you judge how quickly things are changing. If the worry is mainly the front door, wandering and leaving the house works through what to try, starting with the gentlest measure. The 24-hour care guide explains the round-the-clock arrangements for any condition, not only dementia.

The step that matters most on this table is the one between the second and third stage. A live-in carer is booked and paid on the understanding that they sleep at night. They can get up once or twice and settle your relative again, and that is part of the arrangement. They cannot be awake for three or four hours a night, most nights, and still give good care the next day, and a carer who tries will be gone within weeks. Live-in care or 24-hour care sets out where that line sits in more detail.

It is easy to be on the third stage for some time before recognising it, because the nights get worse slowly. A simple diary helps: for two weeks, write down what time your relative got up each night, how long they were awake and what they did. That diary is also the evidence an assessor will want to see.

There are two variations worth knowing about. Where the family lives with your relative and can cover the days, waking nights on their own cost £1,050 to £1,120 a week for seven nights, and night care for dementia covers that arrangement in full. And where one live-in carer is enough at night but cannot work every week of the year, two live-in carers can take turns, a week or a fortnight each, so the same two faces come back. Live-in care for dementia explains how a carer living in handles the evenings and the routine, and the carer's daily break covers the hours someone else needs to be there.

Be careful with a rota in dementia. It covers the hours, but each new carer is a stranger at the bedroom door, and somebody who cannot hold on to new faces may refuse to be helped by them. If you use shifts, keep the team small and the same each week. Live-in care rotas shows how families set one up.

A single live-in carer costs about the same as an average care home place, with one person's full attention. Once the nights need somebody awake, care at home costs more than a nursing home. Agencies that supply live-in carers charge about £1,400 a week for the live-in carer alone, against £1,120 typically on PrimeCarers.

Dementia does not by itself put a live-in week into the higher band. What moves it is how heavy the care is: two-person transfers, continence care through the day and night, and how much of the day needs somebody actively helping. The cost of care for dementia breaks down the costs across every stage, what 24-hour care costs puts the arrangements side by side by the month and the year, and the care cost calculator gives a figure for where your relative lives.

NHS Continuing Healthcare is the route to look at as dementia moves into its later stages. The national framework says plainly that the diagnosis of a condition is not in itself a reason for eligibility, and that the setting does not decide it either: care at home qualifies as much as a care home. When somebody is eligible and lives at home, the NHS pays for all of their assessed care, though not rent, food or bills. Behaviour that puts your relative at risk at night, and needs that change from hour to hour, are what the assessment weighs, so the night diary belongs in the evidence. The NHS may compare the cost of care at home with a care home, but it has to use what each would cost in full and weigh that against your relative's wish to stay in a family setting. NHS Continuing Healthcare explains how to ask and how to appeal, and am I eligible for free live-in care if I have dementia? looks at it for a carer living in.

The council must assess anyone who appears to need care, under the Care Act 2014, and the assessment is free. If your relative is eligible and has less than £23,250 in savings, the council will contribute, and for care at home their house is not counted. The Care Act guidance lets a council consider cost when deciding how to meet needs, and it may point to a care home when care at home costs a good deal more. It must not set arbitrary upper limits, and the guidance says the choice is the option that delivers the outcomes for the best value rather than simply the cheapest. If the council pays, direct payments let you choose your own carer with the money.

Attendance Allowance is paid at about £77 a week for help in the day or supervision at night, and about £115 a week where help or supervision is needed through both. Somebody who has reached the third stage on the table above may well meet the higher-rate test, so if your relative is already on the lower rate, tell the Department for Work and Pensions that their needs have changed. Attendance Allowance explains how to describe the nights on the form.

The national guideline is direct about this. NICE tells staff delivering care and support to maximise continuity and consistency of care, and to write what they learn into the care plan so it does not live in one person's head. When the arrangement grows from one carer to two, the aim is to add people around the carer your relative already knows, not to start again.

Carers on PrimeCarers are self-employed, set their own rates and agree terms directly with you. Before a carer appears on the platform we check their identity, their right to work and an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 2 years, and we interview them online. Carers are insured while they work. We do not check qualifications, training or references, so what a carer writes about their dementia experience on their profile is their own account, and it is for you to ask about it. What dementia training a carer should have gives you the questions. Our managed service adds help with scheduling and holiday cover, for a percentage on top.

A care home tends to be the better answer in a few situations. One is when your relative needs a nurse on hand at all hours rather than visits from district nurses. Another is when two people are needed for every move day and night and the house cannot take the equipment. A third is when your relative is distressed at home in a way that company and routine no longer ease, or when they are no longer safe at home whatever is put in place. Alzheimer's Society names this last situation, and needs that have become more than can be managed at home, as times when a move into care is needed. Cost can decide it too, where a family pays privately and the money would not last.

None of this is a failure of care at home or of the family. When home care stops being enough sets out six situations in full and what is worth trying first, and at what point should someone with dementia go into care? covers who makes the decision if your relative cannot. If you are not sure, a short trial stay is possible: trial stays and coming home again explains how they work.

1. 1

   Keep a night diary for two weeks

   Start tonight

   Write down when your relative woke, how long they were awake, what they did and whether they tried to go out. It tells a carer what the job is, and it is the evidence assessors need.
2. 2

   Ring the GP, then the council

   This week, and free

   Ask the GP to rule out an infection or a medicine problem and to start the NHS Continuing Healthcare checklist if the needs are heavy. Ask the council's adult social care team for a care needs assessment for your relative and a carer's assessment for you.
3. 3

   Check the lasting power of attorney is in place

   Do not leave this one

   A lasting power of attorney has to be signed while your relative can still understand it. Without one, decisions about care and money become much harder.
4. 4

   Look at live-in carers near your relative

   Free to search

   Search by postcode and compare rates, reviews and what each carer says about their experience of dementia. Send two or three of them the night diary.
5. 5

   Ask about the evenings and the nights

   Before you choose

   Ask what they would do at five in the afternoon when your relative wants to go home, and what they have done when somebody tried to leave the house at night. Ask how they will take their break.
6. 6

   Agree the week in writing, then add nights if needed

   Before day one

   Put the weekly rate, the break and the notice in writing. If the nights are already broken, book the waking night carer from the start rather than waiting for the live-in carer to be worn out.

When you are ready to look, you can search for live-in carers near you and compare their rates, see who is available for your relative's postcode, and message them before you commit to anything.

If you have been doing the nights yourself, you are allowed to stop. NICE tells professionals to tell carers about their right to a carer's assessment and to an assessment for respite. Respite for dementia covers a break without ending the arrangement, and Admiral Nurses and free dementia support explains who to call for advice from people who know this illness, including the Alzheimer's Society support line and Dementia UK.