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Caring for a loved one with dementia? Here’s 36 tips from people like YOU

Sharing tips with other family carers can be incredibly useful on the dementia journey. Here’s some of the best tips we’ve received so far – but please send us more!

  1. ‘Dad went through a phase of searching for his car keys and panicking when he couldn’t find them. I tried explaining that he wasn’t allowed to drive anymore but he just got really upset and said, ‘I still need to know where they are.’ So eventually I put a spare set of old car keys in a drawer. When he ‘found’ them the following day, he was so pleased. I was worried he might try to use them but instead he just put them on the coffee table so he knew where they were….and no-one ever dared to move them!’
    Ian, cares for his Dad

2. ‘ New technology such as cameras, Hive plugs and heating  controls mean I can control Mum’s  home from an app on my phone, meaning she doesn’t have to worry, and neither do i, especially as she won’t answer the phone anymore’
Julie, cares for her mother

3. ‘There are many carer first aid courses, which can be invaluable throughout the dementia journey”
Carolyn, cares for her husband

4. ‘I run a hedgehog rescue. Mum loves gardening so we encourage her to germinate young plants. She is involved and feels useful. Every day we talk about the seeds and watch the plants grow. This improves her mood and meets people at the plant stall to talk about her work. Keep people active and involved and they will be happy.’
Anne, cares for her mother

5. ‘We have a white board next to the day clock which we fill in daily with any appointments and a big note saying LOOK IN THE DIARY which is below it so mum can re-orientate herself whenever she passes. It helps keep her independent and stops my dad being asked the same question over and over again!’
Chrissie, her mum has dementia

6. ‘When my husband asks “When are we going home?” I usually say, “Well we can’t set off today, but we will go tomorrow.” That usually settles him.’
Judy, cares for her husband

7. ‘I’ve learnt to embrace illogical chat. So when my mum starts chatting away about things that make no sense, or topics I have no knowledge on, I just happily respond with ‘oh really?’ It keeps her happy and calm.’
Rob, cares for mum with frontotemporal dementia (Pick’s disease)

8. ‘As a home carer, I use a whiteboard to keep me updated each day, and to let the people I care for know what is going on. An A4 weekly planner is also useful.’
Lindsay, a professional carer

9. When asking questions to someone with dementia – such as what they want for lunch – give them a choice, but not too much. Don’t just ask ‘What do you want for lunch?’ because they struggle to tell you an answer. You could hold up pictures of the item (or even the actual item,) so they can point to what they want.
Russell, cares for wife with early-onset dementia

10.My tip is simply to be positive!
Claire, cares for her mum

11.My mother used to knit all the time – jumpers, cardigans, hats, socks, toys, dolls’ clothes, etc. Now she cannot follow a simple pattern, keeps unpicking the first few rows, and gets frustrated and disheartened. I found a solution – she now happily knits “Twiddlemuffs” – simple, different, and will be of use to other people with dementia. Mum now has an achievable purpose!’
Dawn – her mum has dementia

12. ‘We put Mum’s daily routine on an enormous whiteboard including activities and excursions, food she’s going to eat, the names of the carers who will be attending and whether any family members are phoning or visiting. It helps her to see it all clearly.’
Jeff , cares for mum with dementia

13. ‘If a loved one with dementia is point blank refusing to have a bath or shower, try offering wet wipes.’
Elizabeth, cares for her husband who has Alzheimer’s disease

14. ‘I try and reduce the amount of sugar my mother eats, and it seems to help. The sugar rush seems to affect her behaviour’
Rita, cares for her mother with Alzheimer’s

15. We colour coded mums keys and door handles with different coloured electrical tape. Each key corresponds – front door – red on key – red on door handle, back door – blue tape on the handle, blue on the key etc. Three years post diagnosis whilst mum struggles to do many things, she can still open her door with the correct key first time.’
Christine, her mother has dementia

16. ‘A theatre visit is a nice treat and a great day out – a lot of theatres will often have discounted seats for carers and the cared for – contact them directly and see!’
Carolyn, cares for her husband

17.‘Allow the person with dementia to get on with stuff without ‘helping’ them.  You can always put things right later.  Don’t interfere, even if they are having difficulty, unless you are asked.  In that way the person’s dignity is intact and their brain is being exercised.’

18. ‘My way of coping is to treat my husband as I knew him. Don’t let dementia rule your life. It’s hard and yes there are days I want to run away. I have respite as I have to look after myself. We still have our memories, photos and most importantly, we still have each other.
Mary, cares for husband Charlie

19. ‘Keep calm, let the person tell you what’s going on and agree with them, imply that everything is perfectly normal and avoid argument and drama.’
Dementia carer Debbie

20. ‘If your loved one tends to talk mostly gibberish, don’t worry too much about trying to understand. Making the occasional comment… “oh really?”, “I think so, too”, “you are probably right”, “I’m not sure, we should ask someone,” will let them know you’re listening and keep them calm.’
Jane, cared for her mum Vera for 8 years

21. ‘To stop people wandering out of a particular door, try putting a sign on the door saying it’s the ladies or gent’s toilet (depending on whether they’re a man or woman you’re caring for) and they’ll be less inclined to want to go through it.’
Harold, cares for his wife Sandy, who has Alzheimer’s disease

22.‘To help someone keep cooking, get rid of any clutter in kitchen drawers and cupboards to make it easier to find the cooking utensils and tools you need. This should reduce any struggles when there are too many choices and too much “stuff” around.’
Claire – cares for grandmother with Alzheimer’s disease

23. ‘If you have young children in your family record them singing. We had a CD of my children singing Mum’s favourite songs and we played it every time Mum was feeling agitated. There was something about the sound of their sweet little voices that made her calm down instantly when she heard it.’
Kate, cared for her mum

24. Accept that you will get angry – at life, at the person with dementia, at the professionals who care for them – and that we all have our limits. It’s not always easy to stop yourself lashing out, but if you think you might, take yourself off (even if it’s just to the bathroom or a cupboard) and give yourself five minutes to do a silent scream. Yelling into a pillow can help…’
John, cares for his wife, Anne, who has vascular dementia

25. ‘We’ve created “grab sheets” with photo and information on mum in case she goes missing, and we leave a pile by the front door. The Police and local hospitals also know she’s vulnerable.’
Stephanie – helps care for her mum with dementia

26. If your loved one has started staring into space, don’t feel like you have to sit directly opposite them (with them looking right through you). Instead, pull up a chair and sit next to them facing outwards, reach over hug them gently and take their hand softly for a few moments. This may reassure them of your presence and understanding.
Margaret – cares for mother with Alzheimer’s

27. ‘If the person with dementia is feeling lost without employment, see if you can get some paper headed with the logo from their previous company and they can write anything on it they feel would be important in their job.’
Olivia, who cares for her mum with dementia

28. ‘We got a basic no-frills microwave so my wife Denise could use it easily. It has one nob for power and one nob for time and a handle on the front to open the door. When I was at work, I’d set the timer up and put a ready meal inside but keep the door ajar so it didn’t start cooking. All she had to do to start it was push the door shut when prompted (usually after a phone call from me) to cook her meal.’
Colin – cares for his wife Denise, who has early-onset dementia

29. ‘We redirected mums post to our address as we found that she was receiving massive amounts of junk mail and was responding to them, including sending cheques – which resulted in….more junk mail!’
Christine, her mother has dementia

30. ‘My mum, at 93 has had dementia for the past 13 years. She was seeing and hearing things quite a lot. I changed her coffee to decaffeinated and it made a huge difference. Once the carers gave her regular coffee by mistake and within half an hour she was having hallucinations. Swapping to decaffeinated drinks is definitely worth a try.’
Jim – cares for his mum

31. ‘My husband has dementia and is 58. I’ve learned that sometimes it’s good to just let him sit all day if he wants to. I was constantly trying to keep him busy, to keep his brain “active” as doctors had suggested. But I’ve realised that on some days he does just want to sit all day and watch the world go by, and that’s ok too.’
Kathryn – cares for her husband

32. ‘Acceptance is the key to making life better for you as a carer and your loved one who has dementia. Don’t fight it, learn to live with it and accept the situation and then your life will be less harrowing and less stressful and your loved one will be more content.’
Mrs Jagger, cares for her husband Brian

33. ‘Get a local hairdresser and chiropodist to come to your house if your loved one can’t handle getting out of the house anymore.’
James Ashwell, Unforgettable founder and cared for mum for five years

34.’If mum was feeling  angsty or agitated, we used to chuck water balloons or over-ripe tomatoes at the bottom of the garden – it was a very satisfying way for her to let off steam.’
Olivia, whose mum has posterior cortical atrophy dementia

35. We made ‘I’m with Colin’ t-shirts for my Mum to wear with a big picture of my Dad on (her carer) and his phone number so that if she got lost, people would be able to help. My dad had a similar t-shirt with a picture of my Mum on.’
Stephanie, whose mum has early-onset dementia

36.’If appetite or weight loss have become a problem, buy large crockery to make portions look smaller’
Simon, whose mum had dementia

Have you got an interesting insight, fantastic tip or useful bit of advice that you want to share with the Unforgettable community? Join our Facebook support group.