End-stage dementia: the signs, care at home, and the decisions families face

This page is one of the guides to end of life care, and end-of-life care at home covers the arrangement for any illness. The earlier stages are in the dementia care guide, and how long someone lives with dementia covers what the evidence says about time.

Because someone can live with the late-stage signs for many months, it helps to plan around how your relative is today rather than a date. When the changes of the final days come, the last days and hours explains each one and who to ring.

1. 1

   Ask the GP for a review of the care plan

   Now

   The NHS says the care plan made after diagnosis should be reviewed at least once a year, and can include wishes about the end of life. Ask for a review that looks ahead, and for a copy.
2. 2

   Ask who else should be involved

   At the same appointment

   The NHS names district nurses, community palliative care nurses and the local hospice team among the people who may help at home. Ask the GP to refer.
3. 3

   Ask for a plan for an emergency

   Before it is needed

   NICE says care near the end of life should be planned ahead, with the family involved. Ask whether a ReSPECT form is used in your area.
4. 4

   Ask about the fast track and the special rules

   If they are declining quickly

   NHS continuing healthcare has a fast track for someone whose health is deteriorating quickly near the end of life. Benefits such as Attendance Allowance can be claimed under the special rules, with an SR1 form from a doctor or nurse.

NICE guideline NG97 says people living with dementia should be offered flexible, needs-based palliative care from diagnosis, so you do not have to wait for a crisis to ask for it. Palliative care, end of life care and hospice at home explains what each of those words means, and who is in the team goes through the people who may start visiting.

On money, the NHS says a fast track continuing healthcare package can usually be in place within 48 hours for someone who is eligible, and the NHS then pays for their care at home: the fast track pathway explains how to ask. GOV.UK's special rules for end of life apply when a medical professional has said someone might have 12 months or less to live.

The Alzheimer's Society says it is not true that people with dementia feel less pain; they may simply be unable to say where it is. If your relative seems uncomfortable, check simple causes first, such as being too hot or cold, needing the toilet, or thirst, then tell the GP or nurse. Pain and symptoms at home covers who prescribes what, and how medicines are given when someone can no longer swallow.

Food and drink change a great deal in the late stage. Eating and swallowing in later dementia goes through what helps at the table and the role of the speech and language therapist, and eating and drinking near the end of life covers the time when the body no longer needs food. Pressure sores explains how to spot one early and what to ask the nurse.

For someone who recognises few faces, one or two familiar carers are easier than a rota of strangers. On PrimeCarers the family chooses the carer, speaks to them first, and agrees the hours directly, and can keep working with the same person for as long as it suits you both. You can search for carers near you and compare their rates. Live-in care for dementia covers having one carer in the house day and night, and night care for dementia covers the nights on their own.

There is no way to search for carers by dementia or palliative care experience. Experience is the carer's own account on their profile, so ask them how they turn someone who cannot help and how they do mouth care. Injections, syringe pumps and other nursing stay with the district nurses, as what carers are not allowed to do explains, and what a carer does at this stage covers the rest.

The first question in each of these is what your relative would have wanted. If they made an advance decision or an advance statement, give the GP a copy. If one of you holds a lasting power of attorney for health and welfare, bring it to the conversation, because an attorney can decide about life-sustaining treatment only if the document gives them that power. The Alzheimer's Society says that where there is doubt or disagreement about what is in someone's best interests, it may be necessary to ask the Court of Protection to decide.

On tubes, the Alzheimer's Society says most professionals agree tube feeding is not appropriate in very advanced dementia, because it does not make the person more comfortable or help them live longer. Food and drink are still offered by mouth, for comfort, for as long as your relative wants them. If a hospital stay does happen, hospital stays with dementia covers what to take and what to tell the ward.

A carer's assessment is the way into council help for you, separate from your relative's care, and respite for dementia covers the options for a break. Admiral Nurses and free dementia support explains what the charities offer and how to reach them. If brothers and sisters are sharing the caring, sharing care with family on PrimeCarers shows how the account works for several people.

Tell the nurses what you want as well, such as whether you want to be there at the end, and anything your faith needs. Looking after yourself at the end is written for you, and the first days after a death at home covers what happens afterwards, when you are ready to read it.