When the Fear Is the Loudest Thing

For some people the hardest symptom in the first months is not memory. It is the fear. That is common, and it can be treated.

Is it normal to be this afraid?

Yes. Anxiety is one of the most common experiences in early dementia, and many people say the fear was worse than the symptoms in the first months.

A 2021 meta-analysis in the International Journal of Geriatric Psychiatry pooled studies across dementia stages and found anxiety symptoms in about 38% of people with mild dementia. Depression was just as common at that stage.

People describe it in different ways. Some feel a constant low dread. Some feel sudden waves of panic when they lose a word or forget why they walked into a room. One man in his fifties, posting in a caregiver group because there was nowhere else to post, said he had never felt fear like it in his life. Several people answered him. Nobody said he was overreacting.

You may also be afraid for other people: a partner who will have to carry more, children who will watch. That is fear too, and it counts.

Can the fear make my memory worse?

It can make a given day worse. Worry uses up attention, and attention is part of remembering.

When you are anxious, part of your mind is busy watching for danger. That leaves less for taking in a name, following a conversation or holding on to a plan. Many people notice their worst days for memory are also their worst days for worry.

This does not mean the diagnosis is in your head. It means the anxiety is adding something on top of it, and that part is worth treating in its own right. If you were very anxious during your memory testing, tell your doctor. It belongs in the interpretation of the results.

What actually helps with the fear?

The research is thinner than anyone would like. What it does support is talking therapy for low mood, reducing uncertainty where you can, and not carrying it alone.

The most thorough review is the 2022 Cochrane review of psychological treatments in dementia and mild cognitive impairment: 29 studies and 2,599 people. It found that therapies based on cognitive behavioral therapy (CBT) may slightly improve depressive symptoms, quality of life and day-to-day functioning. The effects were small. For anxiety specifically, too few studies measured it to say whether the therapies help.

That is a reason to be realistic, not a reason to skip it. A therapist who works with older adults or with people living with a diagnosis can still help you sort the fears you can act on from the ones you cannot. Ask your doctor for a referral, and ask the therapist directly whether they have worked with people with dementia or MCI.

Things people with a diagnosis say help, which fit what is known about anxiety more generally:

• Turning the fear into specific questions. "What happens to me" is too big to answer. "Who will make medical decisions if I cannot" has an answer, and you can choose it.
• Making the decisions that are still yours. Naming a healthcare proxy, writing down what you want, and telling people takes some of the unknown out of the future.
• Talking to someone else who has the diagnosis. Caregivers can sympathize. Another person living with it can say "me too" and mean it.
• Keeping your days full of ordinary things. Walks, work if you are still working, music, people. Fear grows in empty time.
• Moving your body. Regular physical activity is one of the few things recommended for both mood and brain health, with modest effects either way.

Should I take something for it?

Talk to your doctor about it, and ask careful questions about the answer. One common class of anxiety medicine is a poor fit for people with memory problems.

The American Geriatrics Society publishes the Beers Criteria, a list of medications that tend to cause more harm than good in older adults. The 2023 edition lists benzodiazepines, which include lorazepam (Ativan), alprazolam (Xanax), clonazepam (Klonopin) and diazepam (Valium), because they increase the risk of cognitive impairment, delirium, falls and fractures. For someone already living with memory changes, those risks land harder.

That does not mean no medication is ever right. Some doctors prescribe an antidepressant when anxiety and low mood come together. If a medicine is offered, ask:

• What is this for, and what change should I notice?
• How long until we know whether it is working?
• Could it affect my memory, balance or sleep?
• When will we decide whether to stop it?

Our article When the Sleep Aid Is Part of the Problem covers why the same caution applies to many over-the-counter sleep aids.

What can I do with the fear tonight?

Write the fear down in one sentence, tell one person, and use a helpline if you need a voice right now.

• Write it down. One sentence: what exactly are you afraid of? Fears that stay vague grow. Fears on paper can be looked at.
• Ask whether it is about now or later. Many of the worst fears are about a future that is years away and may not arrive the way you picture it. That does not make them silly. It makes them something to plan for, not something to live through tonight.
• Tell one person. Your partner, a friend, your doctor's nurse. Saying it out loud usually makes it smaller.
• Call the Alzheimer's Association helpline at 800-272-3900. It is answered around the clock, by people who talk to newly diagnosed people every day.

If the fear about the future has turned into thinking it would be better not to be here, that is a different and urgent thing. Call or text 988, the Suicide and Crisis Lifeline. You do not have to be in immediate danger to call, and many people with a new diagnosis have had that thought. It responds well to being said out loud and badly to being carried alone.

When is it more than fear?

When it does not ease over weeks, when it stops you sleeping or eating, or when it takes over your days. Then it needs treatment in its own right.

Tell your doctor if any of these are true:

• You have felt anxious or low most days for more than two weeks.
• You are sleeping much less or much more than usual.
• You have stopped doing things you used to enjoy, or stopped seeing people.
• You are having panic attacks, with a racing heart, shortness of breath or a sense of doom.
• You have had thoughts of harming yourself or not wanting to live.

Anxiety and depression are treatable conditions, with or without a dementia diagnosis. Having one diagnosis does not mean the other should be ignored.