Nobody hands you a plan

When someone in the family is diagnosed with dementia, most people assume there is a system. A nurse, a leaflet, a list. Someone who says here is what happens next.

There usually isn’t. In a 2024 survey of 251 people with dementia in the family, two in three said they were never offered a plan. Not a bad plan. No plan. The ones who were offered something named a care home, a hospice or the local council, not a national service. It depended on where they lived and who they happened to meet.

This article is about what those families said they needed, and what you can do about it this week.

What families said they were missing

The survey asked people what they would expect a planning tool to do. The answers were not ambitious. People wanted a list of the actions needed, the applications and the forms. They wanted help with the conversations to have with the person doing the caring. A calendar. Reminders to the phone. Somewhere to keep the documents they had already gathered.

Nothing on that list is complicated. The problem is that nobody provides it in one place, so families build it themselves. More than a third use a spreadsheet. A third use a physical folder. One in six use nothing at all, and they are the ones most likely to be in the thick of it.

One carer put it plainly: “Caring for someone is a full time job in itself and you do not have the time or money to research or organise information.”

Who helps you plan when a parent has dementia

The honest answer from the survey is: it depends. When asked which organisation offered a roadmap for their situation, answers spread across ten different sources and the two biggest between them accounted for a third. One in eight did not know. Another respondent said the organisations all had similar names and they could not remember which had helped.

The information people needed most, on money, care homes, respite and government support, was the information they were least satisfied with. The general guidance is easy to find. The specific help for your situation and your postcode is not.

So the first thing to accept is that you are the coordinator. Not because you should be, but because the system assumes someone will be, and it is usually the daughter, son or grandchild who picks up the phone.

The part everyone agrees on: keep the family in the loop

The clearest result in the whole survey was about sharing. Asked whether it would be useful if immediate family and carers could see and contribute to the plan, eight in ten said yes or maybe. Only one in five said no.

The maybes matter. Almost all of them said the same thing: it depends who can see what. People are not against sharing. They are against losing control of it. The sibling who lives abroad should see the care calendar. The neighbour who helps on Tuesdays should not see the bank details.

If you take one thing from the research, take this. The families who cope best are the ones where more than one person can see what is going on, and where the person at the centre decides what each of them sees.

What to do first

You do not need a system to start. You need one place and three lists.

Pick the place. A folder, a shared note, a secure app. Whatever everyone involved will actually open. The survey found two thirds would use a website or phone app and a third still wanted paper. Both are fine. One place is the rule.

Write the people list. Who is involved, what they do, how to reach them. GP, consultant, social worker, the carer who comes on Thursdays, the friend who drives. The grandchild who was not listened to by the hospital because she was not the daughter will tell you why this list matters.

Write the actions list. Diagnosis follow up, attendance allowance, carer’s assessment, lasting power of attorney, council care needs assessment, benefits check. Date each one. Note who is doing it.

Write the documents list. Where the will is. Whether there is a power of attorney, and where the certified copies are. Policies, bank accounts, pension details, the phone passcode. Not the contents, just where to find them and who is allowed to.

Then share the right bits with the right people, and put a reminder in for the things with dates.

The conversation nobody wants to start

Half the families in the survey wanted help with the discussions to have with the carer. That is a polite way of saying nobody knows how to begin.

Three questions get most of the way there, and none of them is about dementia. Where do you keep the important paperwork? Is there a will, and where is it? Have you ever set up a power of attorney? You are not taking over. You are learning where to look, while the person can still tell you.

A lasting power of attorney only works if it is set up while the person still has capacity. One respondent described being “at the stage of thinking about power of attorney”. That stage is earlier than most people think. If you are reading this because of a diagnosis, it is now.

What this has to do with FamilySafe

We built FamilySafe for exactly the families in this survey. One secure place for the people, documents and actions. Shared on your terms, so the sibling abroad sees what they need and nobody else sees what they shouldn’t. Reminders for the things with dates. A record that is still there and still current when the next thing happens.

Start with the free account and the three lists above. If it helps, carry on.