The first signs of dementia: what can you do as a family?
Is it just age, or is it something else? Which signs to look for, how to have the hard conversation, what happens at the doctor's – and what to put in place while your family member can still decide for themselves.
In short
- Forgetfulness alone is not dementia. It is changes that affect everyday life, and that continue, that are worth taking seriously.
- The first step is the person's own doctor. Several conditions that look like dementia can be treated, which is why an assessment matters.
- Talk with your family member about your worry, not about a diagnosis. One calm conversation is better than many small remarks.
- Get a power of attorney and permissions in place early, while your family member can still decide for themselves.
Many families carry the same question for a long time before anyone says it aloud: is it just age, or is it something else? This guide is about what to look for, how to have the conversation, and what happens when you take it further. It cannot tell you whether your family member has dementia. Only an assessment can.
Signs worth taking seriously
Everyone forgets things, and it becomes more common with age. What can point to dementia is changes that are new for the person, that continue or grow, and that start to interfere with everyday life. Commonly described signs include:
- Forgetfulness, especially for recent appointments and conversations. The same question several times.
- Trouble with familiar tasks, such as cooking a dish they have always made, or paying bills.
- Difficulty finding words or following a conversation.
- Confusion about time and place, such as getting lost on a familiar route.
- Poor judgment, for example with money, or dressing for the weather.
- Things that go missing or are put in unusual places.
- Changes in mood and behavior: withdrawal, irritability, suspicion, or no longer wanting to do things that used to give pleasure.
Tip: Write down what you see
Note specific episodes with the date: what happened, and how it was different from before. It is much easier for a doctor to assess “three times in two weeks she forgot that she had eaten” than “she has become forgetful”. Talk together in the family. Often several people have each seen their own pieces.
How to have the conversation
It is a hard conversation, and it does not get easier by waiting. Many people who notice their memory failing are worried themselves, and can feel relieved when someone brings it up.
- Choose the time and place. A calm moment when nobody is in a hurry. Not in the middle of a situation where something has just gone wrong.
- Talk about what you have noticed, and about your worry. “I have noticed …, and it worries me a little” is easier to hear than “you have become forgetful”.
- Avoid the word dementia at first, if it frightens. Suggest a check-up with the doctor, to rule out other causes.
- Offer to come along to the doctor. It is a support, and the doctor gets your description too.
- Accept a no, for now. You cannot force anyone to see a doctor. Bring it up again later, or ask someone else they trust to do it.
What happens at the doctor's?
The doctor usually starts with a conversation, an examination, blood tests and a short memory test. Some conditions cause symptoms that look like dementia, such as a lack of vitamin B12, thyroid disease, depression, side effects of medication, or an infection. Many of them can be treated.
If dementia is suspected, the doctor can refer to a specialist or a memory clinic for further assessment. How long that takes varies. If your family member agrees, you can join the appointments and be kept informed along the way.
If it is dementia
A diagnosis can be a shock, and for some also an explanation of something they have felt for a long time. There is help:
- A helpline. In the US, the Alzheimer's Association runs a free helpline, open around the clock, at 1-800-272-3900. In Europe, Alzheimer Europe lists the national association in each country.
- A named contact. Ask the clinic whether there is a dementia nurse, care coordinator or social worker who can be your regular contact.
- Support groups and courses for family members, in person and online, run by the Alzheimer's associations and many local services.
- Help at home when the need arises. Read what to do when your aging parent needs help.
The practical things that cannot wait
Dementia develops over time. Some decisions have to be made while your family member can still understand them and decide:
- Power of attorney: who should be able to help with money and personal matters if they can no longer do so themselves? It can only be made while the person understands what it means. What it is called and how it is made differs by country and state, so ask a lawyer or the national Alzheimer's association.
- Health decisions: naming a person who can speak for them, and writing down what treatment they would and would not want (an advance directive).
- Permissions: for the doctor to talk to you, and for the bank and online accounts.
- Wishes for the future: how would they like to live when they need more help? What matters to them? Write it down together.
- Driving: dementia can affect the ability to drive. Ask the doctor to assess whether it is safe.
Stay together as a family
Dementia affects the whole family, and family members often carry a lot for many years. It helps to share the tasks from the start, to talk openly about what each person can do, and to remember that needing a break is fine. Read about sharing the care between siblings and about combining work with caregiving.
How LumaCare can help
LumaCare keeps the family's observations, appointments and routines in one place, from the first worries to everyday life after a diagnosis.
- Note episodes with date and time, and make a report you can bring to the doctor.
- Keep doctor's appointments and visits in one shared calendar.
- Write routines and habits down in a care guide, so everyone who helps does it the same way.
This guide is general information, not medical advice. It cannot be used to make a diagnosis. If you are worried, talk to a doctor. Read more about dementia at the Alzheimer's Association, the US National Institute on Aging and Alzheimer Europe.