Advice

Supporting a person with dementia who lives far away and refuses help

We asked members of Dementia Support Forum and magazine readers for their advice about someone trying to support a person with dementia from a distance when they don’t accept that they need help. 

Dementia Support Forum is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

chickenlady says,

‘Mum’s a four-hour drive away but siblings are closer. She’s started going out and getting lost, losing her keys and handbag, and regularly locks herself out. A keysafe holds a spare key and we’ve had to give the code to complete strangers who’ve found her and brought her back home. 

‘She refuses to go into care and we’re working with social services to get her in for her own safety but it’s slow. 

She used to manage microwave meals very well, but she’s now convinced that the fridge heats things. We stock her fridge with food that is already cooked and can be eaten hot or cold. 

‘She keeps putting tea bags in her kettle and regularly destroys the element so we’ve bought a see through kettle, at least that way carers can spot what she’s doing.’

Sporadic gardener says,

‘I have managed to liaise with the GP and pharmacy to simplify how many times a day my aunt takes meds (to mornings only) as she was forgetting evening meds. The pharmacy provides dosette boxes and delivers weekly so that we can keep a rough eye on compliance. That took months to set up. 

All advice is designed for carers who live nearby but there are so many of us long distance. 

‘With early stage dementia, digital banking and internet should make it possible to help a lot, but services don’t understand denial and don’t set up tools to allow help from a distance. There are good reasons for this – protecting people from exploitation – but it can also result in reducing their independence as they can’t access funds.’

Debbie in Kent says,

‘I have tried to build a network of people such as old friends and neighbours who will look out for the person if required. You must also contact the GP and local social services to get all the help you can possibly get. 

I have invested in a variety of electronic devices, which don’t replace a real human by any means. 

‘An Alexa, which allows you to “drop in” and to talk to the person at any time they are in the room the Alexa is in. The Alexa also has quite a range of sound and you can programme reminders into it for prompts. 

‘Luckily, the use of video calls is still also possible.’

Pixibel says,

‘Mum had serious falls and incontinence. She and Dad refused to have a downstairs toilet and shower, and no carers. It was weeks before a place in a care home was available. Totally unsuitable for my mum. 

It would be wise to check out the best plan through their GP. Get as much support in place and a plan. 

‘They may not want it, but it will be inevitable. It will happen I’m afraid. Best to be prepared.’

alliec says,

‘An old schoolfriend who had seen Dad offered to pop in each day, to see if he and Mum were OK and needed any help. They do not want other people in their house. 

It took a long time for my dad to trust her and for Mum to actually appreciate her. 

‘We had a group discussion with them about having showers and Mum seems to finally think that maybe this is a good idea. But whether it happens, I live in hope.’