Most people with dementia live at home, and most of them are looked after by family until something forces a change. This is about what home care can do at each stage, what it cannot, and how to tell a service that genuinely does dementia from one that is simply allowed to.
Registered for dementia does not mean specialist in it
11,657 home care services on the public register are registered to support people with dementia. That sounds like a wide choice. It is not a filter.
97% of them, 11,304 services, are also registered for elderly care. The typical one holds 6 registrations in total, and exactly one service in the whole group is registered for dementia and nothing else. Registration describes what a service is permitted to do, not what it does all day.
So the register narrows the list barely at all, and the real question has to be asked on the phone: how many of the people you visit this week have dementia, and what training have the carers who would come to us actually had?
“All our staff are dementia trained” is not an answer. Ask what the training was, who delivered it, and how long it took.
What changes, and what care each stage needs
Early on, the problem is usually prompting rather than doing. Tablets taken twice or not at all, meals skipped, appointments missed. Short visits work well here, and the same face each time matters more than the number of hours.
In the middle, personal care becomes the issue: washing, dressing, continence. This is also when the day loses its shape, and evenings get harder. Longer visits, more of them, and a care plan that says how this person likes things done rather than what tasks are on the list.
Later, the risk is what happens between visits. Wandering, the cooker, falls, not recognising the house. This is where visiting care stops being enough and the choice becomes live-in care or a care home.
Visiting care or live-in care →
Continuity is the whole thing
For most conditions a different carer is an inconvenience. With dementia it can undo the visit entirely, because a stranger in the house at 7am is frightening and a frightened person will not be washed by anybody.
This is the question to lead with. How many different carers will come in a normal week, and can you name them? An agency that cannot answer that will not work here, whatever the rating says.
What to ask that is specific to dementia
- What do your carers do when someone refuses personal care? Listen for whether they describe leaving and coming back rather than persuading.
- How do you handle repeated questions and distress about someone who has died?
- Who writes the life history section of the care plan, and do carers read it before the first visit?
- What happens if we need to move a visit later because mornings have become impossible?
- Have your carers worked with someone at this stage before, and can you tell me about it without naming them?
Help that is not home care
Attendance Allowance is not means tested, does not depend on savings, and is claimed far less than it should be. Dementia is one of the clearest qualifying situations there is.
Attendance Allowance, and how to claim it →
A council needs assessment brings in equipment, telecare and sometimes a few funded hours, and it is free whatever your savings. Ask for a carer’s assessment at the same time for whoever is doing the day-to-day.
Admiral Nurses, where the local NHS or Dementia UK funds them, are dementia specialist nurses who support the family rather than only the person. Ask the GP whether there is one covering your area.
When home stops working
It is rarely one event. It is usually a run of nights, or a fall, or the moment the family member doing the caring becomes ill themselves.
Two signs are worth naming in advance, because they are the ones people argue about at the time: when the person is no longer safe alone between visits, and when the main carer is no longer safe to keep going. Either one on its own is enough.