What other caregivers say: tricks from the forums, labelled honestly

We read caregiver forums for three days: the Alzheimer's Society support forum in the UK, and AgingCare question threads in the US. Here are the tricks that came up again and again, plus the things families paid for that did not work.

Wandering and the front door

• A video doorbell, not a tracker. Four families landed on this on their own. One agency owner reports trackers showing the man safely at home while he was in town. The doorbell camera worked from day one: he could see him and talk him back inside.
• One carer's trick: a slide bolt at the very top of the door. A 93-year-old could work every normal lock but could not reach it. Two free versions from the same thread: a stepladder in front of the door hides the latch, and an unoiled squeaky door announces itself.
• Locking up at bedtime, windows included. Five posters said this was what finally let them sleep. One husband still comes downstairs at night, but his wife stopped chasing him once she knew he could not get out.
• Caregivers raise the fire risk themselves. They tell each other to ask the local fire service whether a key-only lock is legal and safe where you live. We have no fire-service source to cite, so this is their experience, not our advice.
• A pressure mat by the bed with a pager you carry. Five posters use one. Several UK carers did not know these are often fitted free, or for a few pounds a month, by the council's telecare service.
• What did not work: talking door alarms. Four posters tried devices that play a recorded message when the door opens. The person ignores it, gets used to it in days, or hears a stranger in the house and becomes more determined to leave.
• Make the missing-person poster before you need it. One carer's template: a recent photo, name, date of birth, conditions with the life-threatening one first, then VERY CONFUSED, and two phone numbers. Keep a small copy in the person's own bag.
• The risky moments are not only the house. One husband lost his wife from the car outside a library in under two minutes. Others report the seatbelt being unclipped while moving, and use the driver's child locks.

Our own page on doors, chimes and locks is making home safe. For the moment itself: they wandered off.

Washing, hair and clothes

• Four posters say the same thing: never let water fall on the head. The fear is the jet and the water in the eyes, not being clean. They hold the shower head themselves, aim below face level, and rinse with a slow trickle.
• Five carers separate the hair from the body. Many people who refuse a shower will happily have their hair washed on its own, at the basin or in their own armchair, and several say it is enjoyed as a head massage.
• No-rinse products are the most recommended purchase in this whole area, named in six posts: shampoo worked into dry hair and towelled off, warmed shampoo caps, bed-bath wipes. Claims about how well they clean are the makers', not ours.
• Three carers took the bathroom out of it, with a bowl of warm water in the bedroom or front room. One wrote that going into the bathroom often ended in distress, and the front room worked instead.
• One wife's trick: wash and dress the top half completely before you touch the bottom half. It keeps him covered, and it worked when nothing else had.
• Three carers simply drop it for a few days, then offer again as if it were the first time. The refusal is forgotten, and it costs nothing to try.
• The strongest pattern on the page: they refuse family and comply for a uniform. Six or more posters, in both countries. My mother, who leads me a merry dance, is putty in the hands of a uniform. Their conclusion: one paid care call a week, just for washing, is not a defeat.
• Two families hung the wash on an outing. One father would only shower to get ready for church, so the caregiver said church was tomorrow, twice a week. Another offered lunch out, on condition he bathed first.
• Three carers change the clothes rather than the person. One father believed he washed daily. All his shirts were identical, so his daughter swapped them each morning and he never noticed.

Our own version is the bathing card.

Meals and drinks

• Four carers swapped the meal for a bowl of finger food by the TV. From one list: cheese cubes, cucumber chunks, small tomatoes, cold chicken, halved grapes, satsuma segments. Hot versions: roast potatoes cubed before roasting, cubed meat with no gravy.
• Before finger food, one carer suggests spoon-only food. A knife and fork is complex to co-ordinate, but a spoon may be OK. Two other posters found a full plate stops them eating at all, so they serve small and often.
• Carers report the bland ready meal is the problem, not the appetite. They go the other way, to curry and sweet things. Everything else tastes like cardboard. That is what they observed. We make no claim about why.
• Several families stopped the water battle and counted the fluid in food instead. Soup, jelly, watermelon, cucumber, ice cream, yoghurt, tea. The line that drew ten helpful votes: Stop driving both of you crazy micromanaging this.
• One daughter's father refused shakes, pudding and soup, and would sometimes take Jelly Drops, the sweet-like hydration drops his hospice nurse had recommended. They came up in a second thread too.

Medicines

• The question to ask, not the trick. Carers crush tablets into sweet food and post about it constantly. Some tablets must not be crushed, and we have no clinical source telling you which. So ask the doctor or pharmacist which can be crushed, and whether any come as a liquid or a patch.
• Two carers asked the doctor to take tablets away. The number of tablets was itself the battle, and pill time became survivable once the doctor stopped what he could. Ours is the medicine review.
• One carer stopped forcing, and the refusing stopped too. The most important thing was that I stopped forcing the issue. If he wouldn't take them, I didn't press him. She offers again later, and he takes them.

The car

• Three carers moved the car out of sight first. The visual reminder sets off the desire. It is the cheapest move, and it is rarely the advice given.
• Three families disabled the car instead of fighting about keys. Disconnect the battery lead, or let a tyre down, then sympathise: the garage is waiting for parts. Now the keys can be handed over freely, because the fight is about nothing.
• Blame an absent authority, four carers say, never yourself. The licensing agency, the doctor, anyone not in the room. Those who took the decision personally got months of daily anger aimed at them.
• One daughter reframed it as a gift. She told her mother she would love the car when her mum was finished with it. She hated that car. The keys were handed over.
• Two people who had refused everything else accepted an independent driving assessment, offered as a way to keep driving and silence the doubting relatives. Neither drove again. One booked it, never went, and decided to stop.
• Four carers offer the same reassurance: the wanting fades faster than you expect. After dreading this situation for years I was amazed how quickly he stopped hankering after driving.

Our own page, with the paperwork and the scripts, is driving and the car.

Nights, sundowning and time

• One daughter's toddler sleep clock beat the purpose-built dementia clock. Blue light and a star means night, so go back to bed. Yellow and a sun means get up. Her honest faults: it needs resetting every evening, and has no battery backup.
• One wife stopped saying the time and started saying It's still night time. The clock face and the hour had stopped meaning anything. Night time still did.
• One carer wrote Today is on the left of the mantelpiece and Tomorrow is on the right, in large handwriting, changed over each morning, left to right because that is the reading direction.
• Two families bought themselves time rather than stopping the person. One wife ties the shower doors together with a rope and a note saying no showers before 7am. Another fitted a stair gate across the bedroom doorway.
• Three carers draw the curtains and put the lights on before dusk, not after. They report the change from day to dark is itself the trigger. They also keep outings to the morning, and give the hour before the bad time over to quiet.
• Before reaching for anything else, carers say check the boring things: hungry, cold, in pain, wet, or too much going on at once. Pain relief and its timing belong to the doctor, and we have no source for a rule.
• Six or more posters say the same about any sudden new behaviour: get a urine infection ruled out. In these threads it was right twice. Our own guidance on sudden change is on the emergency page.

The night routine we suggest is the sleep tool.

"I want to go home", and the same question again

• Three posters took the suitcase out of the room and the packing stopped. Without the prompt of a suitcase sitting there, the urge to pack has gone.
• Five or more carers blame the weather, the buses, the doctor or the builders. Their own name for it is love lies. Working examples: it is too dark and wet to travel, the buses are not running, we are having work done on the house.
• Four carers report the same phrasing working: agree, then defer. Yes, I was thinking the same thing. I'm going to arrange it for you. Or I'm waiting to hear back, I should know by tomorrow morning.
• One family drives round the block and comes back to the same house. Their mother did not know her own home after dark. They pretended to take her home, and she recognised the house when they pulled up.
• Three carers broke a question loop by changing the answer. A father asked constantly whether the car was in the garage, and the same true answer kept the loop running. A different answer, that it was on the driveway, ended it.
• What did not work: post-it notes and whiteboards, in six reports. Notes on the fridge were ignored. A whiteboard with the day and the pickup time was read aloud every two minutes, every detail questioned again. One carer explains it: Being able to read is not the same as assimilating information. Two people did use notes well early on.
• Four carers learn the current hiding place, then find the missing thing together. Real examples: under the pillow, in a spare bed, wrapped in the linen, under magazines. The job is to help look and be the one who finds it, not to prove anything.
• Permission a long-distance carer may need: let the answering machine take some calls. Posters told one woman being rung six times a day with theft accusations to get caller ID and not answer every one.
• Two techniques carers there have re-recommended for fifteen years, from Liz Ayres' piece on compassionate communication. Repeat an instruction in exactly the same words, rather than rephrasing it. And drop "but" in favour of "nevertheless".

More of our own wording is on the what to say page. The thinking behind hard moments is chapter four.

Getting help through the door

• The most repeated piece of social engineering here: introduce the paid carer as your friend, popping in for a cup of tea. In one case the agency manager did the whole assessment visit as a friend having tea. Money is never mentioned, and the agency is in on it.
• Or give them a job. Three carers inverted the status for a proud parent. We told her the carers were in training to deal with difficult people and she needed to report back to me how they were doing. That held for three years.
• One carer's line for sending someone else in: Sorry I can't come today mum, I've put my back out, so I'm sending a lady to do your lunch instead. Another says do not call it a day centre: give it a name, like the Thursday Club.
• When she had forgotten agreeing, one husband apologised to the carers, not to her. He said they should have told her, and asked to try it and see. Months later she loved them.
• Write to the doctor before the appointment. Four carers describe the person holding it together convincingly in front of a professional, then being exhausted for hours. UK carers call it host mode, US carers call it showtiming. The forum is honest that this is what caregivers observe, not a researched condition.

Our own version of asking for help is the helpers page. Appointment prep is on the doctor page.

Busy hands and the long afternoon

• One daughter's rummage box, labelled so it looks like a real job. A shoebox with cotton gloves, an old watch, a beaded necklace, a purse of buttons, fabric squares, a thimble. She wrote THINGS TO SORT OUT on the side, so her father could say he had just found these bits while tidying.
• Three carers say that if they fiddle with a handbag, give them a more complicated one, not a simpler one. The fiddling is doing a job. Refill it with a purse and a few coins, a comb, large buttons, a copy of a family photo. Nothing sharp, nothing swallowable, nothing irreplaceable.
• One carer built the box out of her mother's old trade. A lifelong sewer got a cheap sewing box: a thimble, empty cotton reels, a pincushion with no pins, a tape measure, lace, ribbon.

More jobs worth doing are on the activities page.

For you, and for the crisis you have not had yet

• One carer's emergency spares kit, taped inside a drawer they never open. A spare TV remote with batteries already in it, and an envelope with cash. When you are 40 minutes away and the panic is about a missing remote, you can talk someone straight to it.
• Two complete sets of spare keys, a carer advises: one always with you, one outside the house, with a neighbour or in a shed. From the same thread: an overnight bag packed for them, and one packed for you.
• One big envelope with everything a paramedic would want. Conditions, recent letters, the medication list, latest results, contact numbers. The carer who made it realised she was reciting all of it from memory in A&E.
• A cheap exercise book, on a social worker's advice. Every professional contact, with the date and the name of the person you spoke to. One carer says it became a timeline of her father's illness, and a record of how many people helped.
• Wendy Mitchell, who wrote about living alone with early-onset Alzheimer's, photographed the inside of each kitchen cupboard and taped the photo to the outside of the door. She also screenshotted the route before a journey, and reversed the images for the way home.
• One carer photographs where she parked: the street name, a landmark, the car park name. She has no dementia herself. Only me has to remember everything all the time.

Gathered from caregiver forums 2026-08-29 to 2026-08-31 and written up 2026-09-05. The threads are named in the research this page is built from; ask and we will point you to any of them.