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Thursday, 15 September 2016

Dementia Challengers

Previously posted on Hootsuite, Dementia Challengers post is a brilliantly written article  we needed to share.

At the outset it’s important to remember your relative isn’t doing these things to annoy or irritate you. Try not to take it personally.  Their reasoning and logic skills may be impaired, they may not remember things, or they may be distressed. What seems blindingly obvious to you may not seem the same to them. You need to try to be in their world and their reality. This can be very distressing and stressful to carers and it’s important you try to get support and respite for yourself. 

Disorientation and memory loss can sometimes cause a relative living with dementia to begin to display different behaviour. Some with dementia can spend hours looking for things, in the same places, over and over again.  It can cause huge stress because they forget what they are looking for but finds it impossible to break the loop of behaviour. It’s stressful for onlookers too, especially when we’re tired or trying to do something else, or watch television when there’s a background of continuously opening and closing drawers or cupboards.  This type of behaviour is known as rummaging.  If it happens when you are on the point of going out and have an appointment, it can drive your stress levels through the roof!


Rummaging can also be caused by boredom, as well as disorientation and memory loss as described above.  There are various ways to helping when this happens and other carers have also shared some of their strategies:

Are there trigger points?  This may happen more at specific times of day or evening. What are the signs?  As soon as you see the signs try to distract by asking for help with something.  A box of things to sort through can sometimes help – try having boxes of pretty buttons, ribbons, photos and cards, bright nail varnishes and costume jewellery which can bring a delightful diversion and help ease her distress.

Clear labels on drawers and cupboards can help in the early stages and keeping similar items together such as tights, jumpers, socks or underwear.

Making sure you don’t rearrange items or furniture, or change the places where things are kept.

Labelling boxes with plastic lids can also help.

Setting aside specific cupboards or drawers for rummaging in – have a drawer in each room which contains interesting things which they enjoy looking through.

Activities such as sorting socks or gloves can be soothing.

Fidget bags or twiddle muffs  or quilts are used to great effect by some carers

Asking your relative to help prepare a meal, or other activity can help them feel useful and engaged.

Putting some music on, or a film, or watching some clips on Youtube can also help – it’s worth knowing what works best and trying to have some of these solutions easily to hand.


Hoarding things; clothes, bedding and jewellery and small amounts of money seemed to go missing.  There are many reasons for this behaviour and it’s important we don’t challenge or make light of it with our relative. Dementia is a very distressing condition for your relative, they may feel they no longer have a place in society, or that they don’t have any power to influence decisions made on their behalf, they may feel resentment or anger. They may feel the need to keep things safe and protected, or feel vulnerable to theft.  If they’re hoarding dirty clothing or bedding there may be a deep seated sense of embarrassment or shame. They may have been punished in childhood if they soiled the bed and have recalled these feelings.

Whatever the reason, it’s essential we remain calm and understanding and never reprimand or make fun of our relative. I appreciate this can be challenging at times (I’ve had to bite my tongue or leave the room on many occasions) and we don’t always understand why they are exhibiting this this behaviour. There are things we can do which may help:

Keeping the environment calm and free from clutter – take a look at some of the tips around designing the home and read the experiences of Suzy.

Make a note of these hiding places so when things are mislaid you know where to look first.

Put important documents away somewhere out of reach. Keep copies of prescriptions for medication, glasses etc somewhere safe too. Have a couple of spare sets of house keys and a spare pair of glasses.

Store out of season clothing in another cupboard and put labels such as “clothes for now” on if your relative is able to understand these.

If you do need to declutter, you need to bear in mind your relative may think their possessions have been stolen so take care to involve them in the clearing out and put these things into another cupboard.  Personally I find this strategy is a last resort option because when I tried it, it caused huge stress.

If items need to be thrown away or given to charity, then do so as soon as you can – you don’t want your relative to be searching through the bins to see where their things are. 

Walking around – (sometimes referred to as wandering)

Some people with dementia spend significant amounts of time walking around.  They may be looking for someone or something, or feel lost, they may be thirsty or hungry or need the bathroom or they may be bored. They may be trying to get back home and home could be a place they lived in when they were younger. They may be reliving something they used to do in the past, such as walking home after work, or fetching a child from school.  This is where knowledge of your relative’s earlier life could be really useful.  If you understand the reason you may be able to help, so if this behaviour happens at roughly the same time each day, find a distraction so that you are prepared beforehand with an activity they can take part in.  If they want to go outdoors then plan a walk together and if that isn’t possible you may need to remove visual cues such as outdoor shoes and coats from sight.  

If your relative keeps wanting to go outside, you need to remain vigilant.  

You can use some technology such as door enunciators which can be set to deliver a recorded message at specific times to remind them not to go out. These are quite expensive but do work for some people.  Take a look at the pages on technology and finding the right technology for more information.

 Restlessness in the evening (“sundowning”)

We’re still not really sure what causes this type of behaviour, there are many theories.  The definition is that, at the end of the day some people become more restless, distressed, disorientated, confused or anxious. They might pace up and down, become agitated or even aggressive, they may find it impossible to sit down or keep still.  It may be that they are tired after being up all day, it might be to do with the changes in brain chemistry resulting from their circadian rhythm.  Their body clock may be out of kilter.  Most of us feel energised in the morning and begin to feel sleepy in the evening – that’s a result partly of our circadian rhythm.

There are various recommended treatments such as discouraging sleeping during the day, avoiding caffeine in the afternoon, having an early dinner time and keeping snacks to a minimum in the evening. Light therapy works for some people – if your relative can spend time outside during the day for example.  This is always more difficult in winter so if possible try to plan to go out in the mornings when there is more light. There’s plenty of advice online relating to this type of behaviour.


Some people with dementia repeat the same question, over and over again. A regular “have I taken my tablets?” can make you feel very irritated till you learn to deal with it. There is no point trying to ignore the question when it’s being asked for the 10th time. I’ve learned to have the dosette box in sight and prompting mum to check it, telling her “it’s Tuesday today – see if the container is empty for Tuesday” works because she is capable of doing the checking for herself. It doesn’t stop her asking the question – clearly this is something very important to her.  Similarly, having your relative make the same comment or telling the same story repeatedly can be very stressful when it’s something you’ve heard a thousand times.  It’s important not to finish the story off or to say “you’ve already said that”. Your relative isn’t doing this deliberately, it’s part of their dementia and you need to learn to accept it as best you can. 

The author of this article made a “carejar” – and each time the same question or story is repeated, they put a pebble in the jar. When it’s full, they gave them self a treat. If they respond negatively to the repetition, they removed a pebble.  It’s a simple trick but it works for them and helped them to become more patient and understanding too and in turn to be a better carer.

If the questions are around an appointment or a visitor, it may mean your relative is feeling anxious. Try not to mention the hospital appointment or the visit from grandchildren too early so you’re avoiding the stress it may cause. You may enjoy the anticipation of a visitor, but your relative may feel anxious at the disruption to their normal routine.

Another behaviour exhibited by your relative could be in doing the same thing, over and over.  Mum used to unpack and repack her handbag many times a day. I’m not sure what caused it but surmised it may be around an anxiety of leaving her bus pass, purse or tissues at home when she was going out.  I used to distract her with conversation about what we’d do the next time we went out together, or suggest we sort out her lipsticks.  This packing and unpacking was as distressing for me as it was her because often I’d be conscious we were going to be late for an appointment if we didn’t leave right now so I learned the distraction technique in order to prepare myself better for the situation and also made sure we had a duplicate set of everything in a small cloth bag inside my handbag.

Different types of behaviour can be difficult to deal with, remember it's not deliberate and there is always a reason; if you can find the triggers, you may be able to stop them from occurring. Do try the care jar trick above - it may really help!

Copyright © Dementia Challengers 2016

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