Someone you know is caring for a person with dementia
Somebody sent you this because they are carrying something heavy and they would rather you understood than had to explain it. You do not need to become an expert. Five minutes here will make you one of the useful ones.
Do not offer to help. Offer a specific thing, at a specific time, and let them say no. "Let me know if you need anything" gives the tired person one more decision to make, so it almost never gets used. "I'm bringing dinner Tuesday, I'll leave it on the porch if it's a bad night" gets used nearly every time.
What is actually happening to their person
Dementia is not forgetfulness. It is a physical disease that is slowly damaging the brain, and memory is only the part that shows first. Judgment, language, mood, sense of time, and the ability to recognise faces all live in that same organ.
- They are not "being difficult" on purpose. Behaviour that looks stubborn or cruel is nearly always fear, pain, confusion, or an unmet need that the person can no longer put into words.
- The old memories last longest. Someone may not know what happened an hour ago and still tell you about 1962 in perfect detail. That is the disease's normal shape, not selective attention.
- Good days and bad days are real. If you visit on a sharp day, please do not conclude the caregiver is exaggerating. You saw one hour. They have the other twenty-three.
- It gets harder, not easier. Most illnesses have a recovery you can wait for. This one does not, which is why help that shows up once is worth much less than help that shows up every second Tuesday.
The one rule that changes every visit
Do not argue with the reality they are living in. If she says her mother is coming to lunch, and her mother died in 1994, correcting her makes her grieve a fresh death, and she will not retain the correction anyway. You will have caused real pain to no purpose.
Go to the feeling instead of the fact. It is not lying; it is answering the part that is actually asking.
You miss her, don't you. Tell me about her.Same for the job he thinks he still has, the house he thinks he still lives in, the keys he is sure someone moved. Join the world they are in, then gently steer toward something ordinary and pleasant. The caregiver does this fifty times a day. Watching a visitor do it correctly is an enormous relief.
What to say to the caregiver, and what not to
- Say their person's name, and a memory. "I keep thinking about how Dad used to run that grill." People stop mentioning someone with dementia as if they were already gone. It is lonely, and it hurts.
- Ask how they are, then wait. Not "how is he doing?" but "how are you doing?" And let the silence sit long enough for a real answer.
- Believe the hard parts. If they tell you something ugly happened, the right response is "that sounds exhausting", not a reason it might not be that bad.
What actually helps, in order of how much
- A standing slot beats a grand gesture. Two hours, the same afternoon every week or two, that they never have to arrange. That is the single most valuable thing on this page, because it is the only kind of help they can plan a life around.
- Take a job, not a shift, if sitting scares you. Groceries, prescriptions, the lawn, the insurance phone tree, driving to appointments, one load of laundry. Every willing person has a right-sized job, and visiting is not the only one.
- Distance is not the bench. Far away? Take over the bill paying, the paperwork, the calls to the insurer, the ordering of supplies. All of it happens from your own couch and it gives back hours.
- Feed them without asking. Food that needs no decision, no dish returned, and no conversation if it is a bad night.
- Accept the mess. If you help and put the dishes in the wrong cupboard, that is fine. If you help and expect to be thanked properly, you have added work.
If you are going to visit
- Come at a good hour, and ask which one. Late afternoon and evening are often the hardest part of the day. Mornings are usually kinder.
- One or two people, not six. A room full of voices is overwhelming when a brain is struggling to track them.
- Say who you are, warmly, without testing. "Hi Margaret, it's Dan from next door" beats "do you remember me?" every single time. Never quiz someone on names or dates; it only proves to them that they are failing.
- Sit at eye level, speak slowly, use short sentences, and give them time to find their words without finishing them.
- Bring something to do, not just to say. Music from when they were young, old photographs, folding towels, a short walk, a drive. Doing beats talking when talking has got hard.
- If they get upset, it is not your fault and not theirs. Stay calm, stop pressing, change the subject or the room. Calm is contagious in both directions.
Caregivers lose their friends. Not to a falling-out, but to people who did not know what to say and so said nothing, month after month, until it was awkward to start again. Being the person who keeps texting, keeps showing up, and keeps saying the name out loud is worth more than any advice you could offer. You do not have to fix anything. You have to not disappear.
If you are worried about the caregiver
Exhaustion at this level is not a character flaw and it is dangerous. If they seem to be drowning, or frightened of their own anger, or hopeless, say so plainly and kindly, and know that free help answers around the clock.
- The Alzheimer's Association helpline, 1-800-272-3900, is free, staffed by trained clinicians, and answered every hour of every day. Anyone can call it, including you, about how to help someone else.
- If they are in crisis, or talking about not wanting to be here, the 988 Suicide & Crisis Lifeline is a call or text to 988.
- Practical, local help (respite money, day programs, a break) lives on the resources page.
Written for the person on the other end of the phone. The rest of this site is written for the caregiver, and everything on it is free: no accounts, no ads, nothing tracked.