If We Ask Families to Speak, Healthcare Must Be Ready to Listen

This week, I helped a loved one move into an EHPAD, a French residential care home for older people who can no longer live independently.

This was not the first EHPAD I had visited, but it was certainly the best. The staff seemed to genuinely enjoy their work. They smiled, knew the residents personally and appeared to have time for small conversations. Friends and family came and went, and the atmosphere felt warm, calm and dignified.

In its rooms and corridors were people carrying entire lives that were no longer always accessible to those around them. Childhoods, careers, relationships, journeys, arguments, ordinary breakfasts and people once loved. Some could still tell their stories. Others seemed to inhabit parts of them that the rest of us could no longer reach.

It is tempting to think that dementia begins there, in the care home, when independence has already been lost.

But it usually begins much earlier.

It begins with uncertainty around a kitchen table. A question is repeated. An appointment is forgotten. Someone becomes confused by something they have managed for years. A relative notices, hesitates and wonders whether saying something would be an act of care or an unnecessary cruelty.

How do you tell someone you love that you are worried about their memory?

Until recently, the medical possibilities for altering the course of Alzheimer’s disease were limited. Now, as disease-modifying therapies begin to emerge, early diagnosis is becoming increasingly important. That makes the conversation more necessary—but perhaps also more difficult to begin.

At the same time, both people may share a powerful wish that there is nothing to worry about—that the changes are caused by stress, normal ageing or the kind of occasional lapse that happens to everyone.

The conversation does not need to begin with the word dementia. It can begin with an observation:

“I have noticed that this has become more difficult. Have you noticed it too?”

Choose a calm moment. Speak privately. Avoid presenting a catalogue of examples to prove your point. The aim is not to prove that the person is forgetting. It is to make it possible to seek an explanation together.

It may also help to frame the appointment as a general medical assessment. The purpose is not to confirm what the family already believes, but to understand whether something has changed and, if so, why.

Memory problems do not necessarily mean dementia. Sleep disorders, depression, medication, alcohol, thyroid disease, vitamin deficiencies and several other medical conditions can affect memory and thinking. Some of these causes are treatable.

And when the cause is a neurodegenerative disease, early diagnosis is now more important than ever.

It can give the person time to understand what is happening, participate in decisions and plan for the future. Existing treatments may reduce symptoms for some people. New disease-modifying treatments can now slow progression in a carefully selected group with early Alzheimer’s disease. They are not cures, they carry risks and they are not suitable for everyone. But their arrival makes timely assessment more relevant than it once was.

This creates a responsibility that cannot be placed only on families.

We cannot encourage people to speak about memory problems earlier and then leave them waiting months or years for an assessment. We cannot ask relatives to initiate one of the most difficult conversations of their lives if there is no doctor available to receive their concern.

Early assessment may allow treatable causes to be addressed, support to be introduced and risks at home to be reduced. It may help some people remain safely independent for longer.

That has an economic value. Residential care is expensive, and relatives often reduce their own working hours to compensate for what formal care does not provide.

But the value is not only economic.

It is also measured in ordinary mornings lived at home. In familiar rooms, recognised neighbours and decisions that remain one’s own for a little longer.

Sweden votes tomorrow. During an election, healthcare and care for older people are discussed in terms of budgets, staffing and waiting lists. But delayed assessment also has a cost. When healthcare is unavailable, families quietly become coordinators, advocates and carers, often without training or sufficient support.

A society cannot claim to value early diagnosis unless it provides the doctors, memory clinics and follow-up care that make early diagnosis meaningful.

The people I met in France were not simply people who had lost memories. They were people carrying lives that had become more difficult for others to reach.

If we ask families to begin this conversation, healthcare must be ready to continue it. If we diagnose earlier, meaningful support and treatment must follow.

Memory belongs to the individual.

But how we respond when it begins to change is a collective choice.