Dementia in the family: the first signs and the first steps

“Mum, you already asked me that.”

Sunday lunch, the soup still warm. For the third time in half an hour your mother asks how her granddaughter is getting on at work. You answer for the third time, a little more briefly. Your brother looks at you across the table and shrugs: “She’s just tired. She’s old.” On the drive home a thought keeps circling that you do not say out loud — that this is not just tiredness. And straight after it another one: that you are exaggerating.

This in-between space, when you notice something but are not sure, is for many families the hardest part of dementia. There is no diagnosis yet, no clear words, only an anxiety that everyone in the family carries differently. In this post I would like to describe which changes are worth taking seriously, how responses to them often divide a family, and which first steps you can take as soon as this week.

Not all forgetfulness is dementia

First, something reassuring: memory really does change somewhat as we age. Sometimes a name does not come straight away, we look for the glasses that are on our head, we need more time to learn something new. That is ordinary.

Dementia is not “stronger forgetfulness”. It is an umbrella term for conditions in which the brain’s functions — memory, thinking, orientation, judgement, language — decline to the point where a person finds everyday life increasingly hard to manage. According to the World Health Organization, more than 55 million people worldwide live with dementia, and nearly ten million new cases arise every year. The most common form is Alzheimer’s disease, which accounts for most cases, but there are others, such as vascular dementia.

The numbers are large, but for your family they are not what matters. What matters is what you see in your own parent. And here the key question is almost always the same: does the change affect how they are able to live? Forgetting where the keys are is annoying. Forgetting what keys are for is something else.

Signs worth noticing

Dementia shows itself a little differently in everyone, but some changes appear often. I list them so that you can describe what you see more easily, not so that you can make a diagnosis yourself:

• Memory for recent things. Your parent repeats the same questions and does not remember yesterday’s conversation, yet tells stories from childhood in precise detail.
• Orientation. They get confused about time or place, or lose their way on a route they have walked for decades.
• Familiar tasks. A recipe they cooked all their life no longer works out; the washing machine becomes a puzzle.
• Money and paperwork. Unpaid bills, unusual purchases, falling for phone scammers.
• Language. They search for words more often than before, lose the thread of a conversation, withdraw from company because conversations become tiring.
• Mood and personality. Someone who was always open becomes suspicious, irritable, apathetic or anxious. This is often the first sign a family notices — and the hardest to connect with memory.

Among the important signs is one that is not on the list: the parent often does not see the changes themselves. Professionally we call this reduced insight. It is not stubbornness and it is not lying. It is part of the illness. It is also why conversations along the lines of “can’t you see you’re forgetting things” so rarely help.

What else might be behind it

One of the most important things to know: similar changes can have other causes, including some that can be treated. A lack of vitamin B12, thyroid problems, side effects or interactions of medication, infections (in older people even a urinary tract infection can cause sudden confusion), poorer hearing or eyesight, and depression. Hearing deserves a special mention: in 2020 the Lancet Commission listed hearing loss among the risk factors for dementia that can be influenced. A parent who hears poorly can seem confused simply because they are not catching the conversation.

Depression in older people is often overlooked and can show itself precisely as forgetfulness, slowness and withdrawal. I wrote about this in Depression in older people: when we mistake it for age itself. This is one more reason why the first step is always a check-up with a doctor, not guesswork at home.

There is also an in-between state called mild cognitive impairment: the changes are noticeable, but the person still manages daily life. In some people it develops into dementia over time; in others it stays the same or even improves. The doctor may therefore suggest a repeat assessment after a while. That is not putting things off, but a way of seeing which direction things are going.

Who in the family notices first

In families something often happens that surprises people at first: the changes are noticed first by whoever sees the parent least often. A daughter who lives abroad and comes twice a year sees the difference between summer and Christmas as a leap. A son who brings his mother lunch every day sees only small shifts he has already got used to — and may already, without realising it, have started covering for them.

The one who covers most is often the partner. A wife who has lived with her husband for fifty years takes over his tasks before she even thinks about why. She drives instead of him, answers for him, tells the children he is “just a bit distracted”. Not to mislead anyone. But because attentiveness to him is part of their love — and because admitting the change also means admitting that their shared life is turning into something else.

So two camps can form in a family: those who are worried and those who deny. Both are right about something. The worried ones see something real. Those who deny are often protecting the parent’s dignity and their own fear. But when the discussion turns into an argument about who “sees the truth”, it often happens that one sibling starts gathering allies against another, and the parent ends up in the middle. In family therapy we call this triangulation; for the wider picture, see Siblings, alliances and coalitions: the invisible geometry of a family.

A conversation between siblings

Here is an example of how a conversation can begin in which nobody has to be right (composite, not a real person):

“I don’t know, Tom. I don’t think Mum’s quite all right.”
“Here we go again. She seems perfectly normal to me.”
“Maybe you’re right. You see her more often than I do. But I found Sunday hard. Can I tell you what I noticed?”
“Go on, then. I just don’t want you to start testing her.”
“I don’t want to test her. I’d like a doctor to see her, and I’d like us to go together. So it doesn’t look as if I’m telling on her.”

The sister does not begin with a diagnosis but with her own feeling. She acknowledges her brother’s experience as valid. And when he voices his fear, she does not dismiss it but accepts the condition that matters to him. Her brother may not yet agree that this is dementia. But he agrees that a check-up makes sense — and that is enough for a first step.

First steps

Go to the family doctor — together. Your parent’s family doctor is the first point of entry. They carry out a basic examination, check whether other causes lie behind the changes and, if needed, refer to a specialist such as a neurologist or psychiatrist. If your parent agrees, go along. You can say what you have noticed, while they remain the person the doctor is talking to. It helps to bring your observations written down — appointments are short and under stress a lot gets forgotten.

Do not wait for “the right moment”. Many families put it off because they are afraid of what they will learn. But an early check-up means treatable causes can be ruled out, your parent can take part in decisions about their own future, and the family gains time to prepare.

Talk about wishes while it is still possible. Where your parent would like to live, who should handle their affairs, what matters to them about care. Legal and financial options depend on circumstances, so ask the relevant people — the social work centre, a notary or a lawyer. What matters is that the conversation happens while your parent can still say what they want.

Find support for yourself. In Slovenia there is the association Spominčica – Alzheimer Slovenija, where relatives can get information and support from people going through the same thing. For practical help at home, turn to the social work centre (center za socialno delo), and for nursing care to community nursing via the family doctor.

If there are children in your family who notice that something is happening with grandad or grandma, How to explain a grandparent’s dementia to a child will help.

How your parent experiences it

In all this searching for signs and organising, it is easy to forget that your parent has an experience of their own too. Many people in the early stage of dementia sense something. They feel things slipping away and are ashamed of it. So they hide it, make excuses, get angry when someone corrects them, or withdraw from company where they might embarrass themselves.

When a parent says “I’m not mad, you know”, they are not talking about memory. They are talking about the fear of losing their place in the family, their independence and respect. A conversation that hears this is different from one that deals only with facts. Instead of “you’ve forgotten again” you might say “things confuse me sometimes too — let’s go and have a look together”. Instead of “you can’t manage any more” you might ask “what would make your day easier?”

It also helps to stay with what your parent can still do, not only with what they are losing. A person in the early stage of dementia has many abilities that are intact: feelings, humour, memories of the past, hands that know things they have done all their life. Whoever treats them only as a problem loses them sooner than they need to.

A grief that begins early

When changes start to appear in a parent, many relatives feel something they cannot name. The parent is here, sitting at the table, and yet at the same time no longer fully here. Pauline Boss described this as ambiguous loss — a loss with no clear beginning or end. I wrote about it at greater length in Grieving someone who is still alive: dementia, addiction, estrangement, and about grief that begins before death in Anticipatory grief: grieving before the death.

I would add only this: in the first months, contradictory feelings often mix. Relief, because someone has finally named the changes, and sadness, because now they are real. Tenderness towards your parent and anger at them for “not trying”. The wish to be there and the wish to run away. This kind of ambivalence is not a sign that you do not love your parent. It is a sign that something big has happened.

Exercise: a two-week record of observations

This exercise has two purposes: it gives the doctor useful information, and gives you a little more clarity instead of a whirl of worry. You can start today.

1. Open a notebook or a note on your phone. For two weeks, every day you see or speak to your parent, write down one to three things that surprised you. The date, what happened, in what situation.
2. Write down what goes well, too. What your parent managed that day, where they were just as they always are. Without this the record will look worse than it is and will take away your hope.
3. Next to each entry, add your own feeling in one word. Fear, anger, sadness, relief. That way you will notice what is draining you most at the moment.
4. After two weeks, read the record in one go. Can you see a pattern? Do the changes appear in the evening, when they are tired, after a new medication? Underline the three most important.
5. Share the record. With a sibling, with your parent’s partner and then with the doctor. Not as evidence, but as a shared picture you can start from.

Where this view has its limits

I would like to be careful here, because the subject of dementia quickly turns into fear.

Do not become a detective. Writing down observations is useful; constantly checking and “testing” your parent is not. If you ask them every day what day it is, or correct every mistake, you will humiliate them and burden your relationship more than the illness itself.

Not every suspicion is dementia. As I wrote, similar changes can have other causes. This is another reason why the diagnosis should come from a doctor, not from the internet, a neighbour or you.

Sometimes your own fear is behind it. When a parent’s memory falters, many people start to fear for their own. Has a fear woken in you that is bigger than what you are seeing? That is worth talking about too — but separately from your parent’s story.

A sudden change is not a time to wait. If within hours or days your parent becomes confused, drowsy, restless or does not recognise people, this is not the slow development of dementia but may be an acute condition that needs an immediate examination. Call a doctor or, in an emergency, 112.

And for you: caring for a parent with dementia is long-term and can wear you out. If you notice that you have been sleeping badly for weeks, that everything irritates you or that you are closing in on yourself, this may be a sign of chronic stress. I wrote about what shifts in a family when a parent becomes dependent on you in When a parent depends on you: the role reversal that isn’t. If things are very hard, in Slovenia you can call the mental health crisis line Klic v duševni stiski on 01 520 99 00 (every day from 7 pm to 7 am) or the Samaritans line Zaupni telefon Samarijan on 116 123 (24 hours a day).

What to remember

• What matters is not whether your parent forgets, but whether the changes affect their daily life.
• Similar changes can also have treatable causes — so the first step is always a check-up with the family doctor.
• In a family, the changes are often noticed first by whoever sees the parent least; the partner often covers for them without realising.
• A conversation about wishes is worth most while your parent can still say for themselves what they want.
• Sadness, anger and relief can mix from the very beginning — look for support for yourself too.