Here are answers to the most common questions about dementia
More than 850,000 UK residents are affected by dementia, and a lot of us have a loved one who requires some additional help in this area. Sometimes, it can be hard to understand the behavioural changes and symptoms that come as a result of dementia.
If you aren’t confident about looking after a relative with dementia, this FAQ can help. Using the approaches outlined on this page, compiled by our dementia specialists at The Cedars Home Care, you can help your relative with their daily life, personal care, behavioural changes, anxiety and disorientation.
You can contact our team now if you want more information on dementia care or other related problems.
What can I do when trying to provide personal care and my relative refuses?
First of all, try to put yourself in their shoes. Embarrassment is still an emotion that individuals with dementia still feel, meaning you should approach this delicately and encourage and motivate them to do things independently while knowing help is there should they need it. You should stop immediately if your loved one shows signs that your personal care is causing them distress; don’t ignore this, as it is their way of communicating with you. Try to figure out what is distressing them, as it could be age-related.
For example, an elderly loved one may have lost their memory of terms so commonly used today, such as ‘shower gel’ or ‘shower’, and personal care could mean something completely different to them, like a twin bath using a bar of soap. Just grab a bowl, fill it up with warm water and use soap instead of shower gel to massage your relative’s hands – they may find this more preferable to ‘washing’. If it turns out the person doesn’t like the feeling of wet skin, simply clean one part of their body with the soap and water, and then immediately dry it afterwards.
My relative is afraid of the water. How can I help them overcome this problem?
A body lotion is a good distraction when your relative doesn’t like water. This is a great way of incorporating washing into their day-to-day routine. Start by telling them, ‘I have bought a new body lotion that I would like for you to try. Do you want to try it?’ If they agree, apply a small amount of it on their hand and offer them the lotion every day after that. Say ‘Lets try washing our hands with it first’ when you see your relative is starting to feel comfortable with the lotion. This one-step-at-a-time approach is an excellent way to get them used to the idea of personal care. Another alternative that could be less distressing is offering them a wet wipe.
When receiving personal care, my relative is self-conscious. How can I make them less shy about the process?
Start by asking your loved one if they can be able to handle any personal care on their own. If they say yes, try to see if they can manage by stepping out of the bedroom or bathroom. If you notice they are failing to cope by themselves, try getting them used to you being in the room with them by asking if they mind letting you wash your hands and face in the same room. Since your entire focus isn’t on them, they may relax a little more.
My relative doesn’t like getting dressed. Is there a way to make this process more pleasant for them?
If you find that your family member dislikes getting dressed, leave out some clothes for them to select from – however, to not make their confusion worse, make sure the selection of clothing is limited. Add in some sweaters or jumpers if the weather outside is cold and tell your family member: ‘I have put on a warm jumper because it is cold outside. I got a warm jumper for you too.’
My loved one doesn’t want to use the toilet. What should I do?
You can set up some simple yet effective measures if your family member refuses to use the toilet. Dementia can limit vision, making similar coloured objects appear indistinguishable from one another, so try switching the colour of the toilet seat to black if it is white. If your bathroom floor is white, your loved one may find it hard to distinguish between the toilet seat and the floor if they are the same colour, leading them to refuse using the toilet.
They may also be afraid of stepping into the bathroom if you have a shiny floor because it can look like water. To prevent this, make sure the floor has a mat, go in first and encourage them to follow.
My relative urinates around the house. What can I do to prevent this?
Your family member is urinating around the house because they are struggling to locate the toilet. Putting clear signs on the bathroom door is an excellent way to prevent this from happening – it's easier to remember pictures than it is to remember words. Place a bucket or commode in an area that your relative likes urinating. If they are urinating somewhere they really shouldn’t be urinating, such as the sink in the kitchen, cover it up with a plastic bin or chopping board – that will make it harder to find.
Why is my relative removing their faeces from the toilet?
Not flushing the toilet is common behaviour for people with dementia. That’s because most of them used to flush toilets with a pull chain instead of a button back in the day, and that is what they remember. Since they are unable to get rid of what is in the toilet due to their inability to find the pull chain, they may feel embarrassed, causing them to try and hide the faeces by collecting them from the toilet. To help them find the button, try putting brightly coloured tape around it, which will allow them to recognize the button and flush. Also, you should encourage them to wash their hands afterwards.
In the house
After our daily outings, my family member becomes unsettled upon returning home. What can I do to make them feel at home?
After returning home from the shops, your loved one may ask ‘what time are we going back home?’ because their home has become unfamiliar to them. This happens because they may be remembering a home they lived in back in the past or in their childhood. You can jog their memory by putting pictures of previous homes around the house.
Also, you can put items that they are familiar with around the house and distract them from this feeling that they are not home by engaging them in conversation over those items. The point is to reassure them and make them feel safe and secure in their home (dementia can make one feel unsettled even in their own home) – just think how unsettled you would feel if you really wanted to go home but could not.
How can I help my family member avoid feeling distressed when we have guest over?
Individuals that have dementia usually get distressed when they are in a busy and noisy place, such as in a room with plenty of guests. Since dementia can affect a person’s hearing, voices can seem louder than they actually are, and they find themselves having trouble ascertaining who is speaking to whom. For your relative to find it easier to communicate (hence, reducing any feelings of anxiety), try to convince your other loved ones to not visit at once. Otherwise, find a quiet room where your relative with dementia can go and relax whenever visitors come by.
Can a person with dementia be affected by patterned wallpaper and carpets?
For someone with dementia, it can be extremely confusing to look at a patterned wallpaper or carpet. They may even try to pick flowers if the wallpaper or carpet has that pattern; keep the pattern of the carpet hidden when they are around by placing a plain rug over it. If it is a wallpaper, cover the pattern with plain pictures, specifically ones that have a relation to your relative’s life story. If your relative is still fixated on picking the flowers, have some real ones nearby to make the activity more realistic.
What is the reason behind my relative becoming infuriated whenever they answer an automated call?
Since the voice on the other end of the automated call cannot respond to their questions, someone with dementia can easily become anxious – maybe even aggressive. Your relative may become agitated, and they may feel like someone is spying on them, which can be very scary. Try contacting your phone company and telling them to block unrecognized numbers from calling your family member.
Going outside of the home
Is my family member safe outside the house? They keep trying to leave.
Your relative will be safe going out for a short walk as long as you come with them and urge them to put on weather-appropriate clothing. If you want to understand why they need to go outside, try asking them where they are going. If they want to go to the garden, make sure it is secure and there is a route that can safely guide them to potted plants, bird feeders and other points of interest in the garden.
If your relative lives alone, you can install a GPS tracker on them so you can know where they are at all times. If you live with them, a door chime or pressure sensor can be used to alert you whenever they try going outside of the house. Do not lock the door to prevent from them leaving, as this will only send them into an agitated state and make them fixate on finding the keys. This can end up in an unpleasant confrontation, which is something that should never happen when dealing with a person that has dementia.
How can I stop my family member when they keep running away whenever we are together in public spaces?
Whenever your loved one wants to leave the house, that is what they will do because they want to still be independent. They do not want to be treated like a child and will get distressed whenever they see you following them when out in public. If you can, follow them from behind but at a distance (be out of sight). Keep in mind that they will get very scared if they notice you are following them and think you are a total stranger. If they begin to run away, the last thing you should do is chase after them, as this will make them run even further away.
My relative feels anxious when going to appointments. How can I help them feel less anxious?
Do not tell your loved one that you're going to an appointment until you’re about to go out of the house. This will give them less time to obsess and worry over leaving their home to go to an appointment, which will help minimize anxiety.
How can I minimize the anxiety my relative feels when they hear traffic and people passing outside?
If your family member is feeling anxious due to the traffic and people passing outside their home, take them to a back room, place headsets on their head and play music that they love to drown out the sound and distract them. There could be a reason why your relative is bothered by the noise (maybe they got burgled in the past), so try to find out where the insecurity and fear are coming from.
Performing tasks around the house
How can I get my relative to let me wash their clothes when they refuse?
If you can, wait for your loved one to leave the house before washing their clothes. Your loved one might want to use the clothes as much as possible before they are washed because they used to hand wash their clothing back in the old days. Another reason they might be refusing could be that they don’t know how to tell you that the noise the washing machine makes is frightening them. It is important that they don’t know you wash their clothes, so make sure you use a radiator or cupboard to dry them quickly before they return home. Doing this means you will make them feel less anxious and agitated about the situation.
My loved one is refusing to stand. How do I get them to move?
Due to the brain damage caused by dementia, your loved one could be feeling a sensation of ‘pin and needles’ in their feet. This will cause some pain and discomfort whenever they stand up, which is why they are refusing to do it. Start by getting them used to the feeling by asking them to put their feet on the ground while seated. When it seems that they feel comfortable, try to get them to stand. When you see them shuffling their feet, don’t stop them; they are just trying to decrease the sensation of ‘pin and needles’. You need to be patient and allow them to finish; this behaviour will normally happen in the morning when they get out of bed.
My loved one is refusing to get up the stairs. What should I do?
If the carpet and hallway are the same colour, you relative might refuse to place their foot on the stairs at all. That’s because dementia has rendered them incapable of ascertaining how many steps there are and where the first step is located. You can highlight the first step for them by putting tape of a different colour around its edges (if the tape comes off, it could increase their danger, so make sure it is well-stuck). You should also put a different coloured mat at the place where the bottom step meets the hallway – make sure to place it safely so it does not become a tripping hazard.
What could be the reason behind my relative following me around during the day?
When you loved one gets bored and wants to be a part of whatever you are doing, they will probably start following you in the daytime. Try to make them a part of whatever you’re doing. For instance, if you’re preparing a meal, sit them at a table and tell them to peel some potatoes. If you are cleaning the house, give them a broom and tell them to sweep the floor. You can easily stimulate your loved one who has dementia with household chores since there are plenty of them to go around.
My loved one keeps coming into my room during the night. What is the reason behind this?
Following a loved one around is not unusual for someone who has dementia, and this is more common when they need to be reassured. Unfortunately, at time is a time when they need this reassurance the most, and there are several other reasons as well why they might do this:
- It could be that your relative feels safest when they are with you and may just want to know you are around. After you have settled their doubts and fears, lead them back to where they sleep. Show them that it's nighttime by opening the curtains so they go back to sleep
- Sometimes, your relative may feel as though they are in the wrong bedroom and wander into yours while searching for what they believe is their actual bedroom; this happens mostly when they are sleeping in a new room. When this happens, it can easily be resolved by taking them back to the bedroom they used to sleep in.
- If your relative used to sleep in the same bed as their significant other, they could be searching for them. If this person they are looking for is no longer alive, simply lead them back to their room, but make sure you offer them a gentle distraction first. If they sleep in separate bedrooms with their significant other, placing them in the same room but on another bed can diffuse the situation.
- They may also be trying to check to see if their children are okay; that is if they used to live with them in the past. You can easily distract them with a doll, which has been shown to work extremely well.
My relative has no time perception. How can I help them with this?
Regularly update them by putting up some sort of visual prompt, such as a whiteboard where you can write the time or large wall clock. They may be asking the time because they believe they have something to do around that time; it could be picking up their kids or watching their favourite TV show that got cancelled, so try to ascertain why they are asking for the time. They might not really know what they should be doing but still have the lingering emotional nudge that they are late to pick up their children or missing their show. At this point, try to do some meaningful activities with them by completing their Lifebook based on their routines, interests and hobbies. They may forget about asking for the time when they are engaged.
Food and Drinks
My relative is finding meal time distressing. What can I do?
If the colours of the food you’re offering to the individual with dementia don’t contrast, they will have difficulties recognizing it. To make it easier for them to recognize the food, make sure its separated and placed in plain-looking bowls and plates. Also, make sure the pattern of the bowls and plates is not patterned or they will easily get confused, and that the portions are small so they don’t feel the pressure to finish a large amount of food.
If you can, make sure you prepare food that can easily remain on the fork or spoon or that can easily be picked up with fingers. Avoid messy foods, as your loved one will refuse to eat them because they are afraid of making a mess (messes make them angry and frustrated).
How can I persuade my relative to let me prepare meals in their home when they refuse?
Your family member might not be comfortable letting someone else cook for them because they feel it is their responsibility. When cooking, allow them to participate so they feel like they have helped in the food preparation process. This way, they will feel included and useful.
My loved one is refusing to eat. What should I do?
Try to determine the reason behind your loved one refusing to eat. If it is because they are not included in the meal preparation process, they may not be sure about the ingredients you have used and the overall presentation of the meal. Sometimes, your family member might be afraid they will choke since they are facing difficulties when swallowing the food.
Truth and lies
Should I bluntly tell my relative that they are living with Dementia?
This question has no wrong or right answer; it is all dependent on how your relative handles news they may not like. While some may get extremely upset, others may respond well and feel relieved that there is a reason behind their forgetfulness. If you know you are dealing with someone who won’t take it well, don’t say anything and just keep reassuring them by telling them something along the lines of ‘we are all a little forgetful sometimes’ and engage them in an activity to distract them from the subject.
I want to know how best to support my relative now that her husband has passed away. How do I do that?
Take it one day at a time. Start with gentle support and allow her to tell you stories about her husband; have plenty of photographs nearby as well. If she starts asking for her husband, don’t tell her he is dead, but say he has gone to a better place instead. You need to let the individual with dementia grieve normally, even though this can be hard to watch. Don’t stop her from going to the funeral if that is what she wants to do, but if things get too intense, make sure there is a quiet place she can go to relax – usually, they may find it distressing to be in a large room filled with people. Take them home immediately if that is what she wants.
I am no longer confident my relative can handle their finances. What can I do to assist them while making them still feel independent?
Take them to the bank and set up an account that has a limit. You should also give them a purse or wallet with a limited amount of money and replenish it when it gets low. If you are uncomfortable with them having any money, try using toy money, like monopoly money.
My relative doesn’t want to take their medication. What should I do?
Find out why this is the case. They might be finding it hard to swallow pills and tablets, meaning you will have to speak with their general practitioner or pharmacist so they provide a dissolvable or liquid form of the medication if they have it. If it is a matter of not liking the taste, find out if taking it with some food or a beverage is safe.
However, this is a ‘break glass in case of emergency’ scenario that should be used when the person with dementia is completely mentally incapable of managing their medication alone. But if possible, encourage some independence by allowing them to have some form of control. If you refuse to give them any level of control, the may refuse the medication thinking you want to poison them.
How can we stop my relative from spitting in public?
Losing the perception of what is deemed appropriate behaviour in public is common in people with dementia. Because of the damage the brain has suffered, your loved one has lost their sense of social morality and can believe spitting in public is completely acceptable. You can deal with it by handing them a tissue or bucket for them to deposit their spit; also, make sure it is something easily disposable. You should seek advice from a medical professional if you notice that the spitting is preceded by a cough; this could indicate a chest infection.
Consider your relative’s history – were they a tobacco chewer? In that case, try giving them a lollipop, polo mints or anything to keep their mouth busy. When dementia reaches the advanced stages, the person starts losing their ability to swallow, which explains the spitting. If this is the case, give your relative some food or a beverage to encourage regular swallowing.
Why is my relative swearing all of sudden when it is something they have never done?
What shocks many friends and family members during the advanced stages of dementia is to discover that their loved one can swear. Their loved one could be swearing because they recognise the words or that they cursed a lot during their younger days. Since dementia has the ability to delete words like ‘frustrating’ from your relative's memory, all they can have left is swear words.
Explaining to your loved one why these words might be upsetting is a good idea and they will probably understand you. If you find that they have started swearing again after a couple of minutes, keep in mind that the previous discussion might have been forgotten. Depending on your relative’s personality, they may react differently to this; if they had a sense of humour that was cheeky, they might actually swear even more after you tell them not to. In the event that happens don’t react to their swearing.
Is dementia able to affect their digestive system?
Yes. Due to the excessive production of wind, dementia can negatively impact digestion. Your relative might also pass gas while in public since dementia affects how they understand what is socially acceptable behaviour. To your family member, all they are doing is fulfilling a need. However, it is your job to help them control the situation by feeding them a balanced diet that is healthy and contains a lot of liquids. Also keep in mind that since dementia negatively impacts our body’s natural functions, your relative has no choice but to pass the gas.
How can we stop my relative from wanting to sleep all the time during the afternoon?
In order to stop your family member from sleeping during the day, have them do something that requires them to be awake, such as walking or doing a crossword puzzle. If that is not working, designate a particular time of the day when they can take a nap. When it is time to wake them, make sure you have prepared something nice for them, like biscuits and tea. That will make waking up very pleasant for them.
How can we help my relative sleep through the night? They are constantly waking up.
To make sure they shut down during the night, make sure you keep your family member busy through the day. However, despite your best efforts and since dementia disturbs an individual's sleep pattern, they will keep getting up during the night. Opening the curtains and showing them that it is night time can help them realize it is time for sleep. Another alternative is making sure they see a clock and then guiding them to sleep.
Agitation and aggression
How can I stop my relative from entering an agitated state when I exit the room?
Bring your family along when leaving the room if you know they will become agitated. If you are going to use the bathroom, keep talking to them while you use it. If the bathroom is far, place a chair outside the door and have them sit and wait for you. Your family member feels safe when you are around and that is why they get agitated once you leave. If they can’t come along for some reason, tell them you won’t take very long– reassure them.
My relative is angry. What do I do?
When your family member is upset, unhappy or scared they will communicate this with verbal actions or physical aggression. If this happens while you are offering them assistance, step back and communicate that you will give them space. Let them calm down by leaving the room for a few minutes, and then come back to see if their feelings have changed. When they act aggressively, Take note and watch to see if there is a pattern to it.
My relative is accusing me of stealing from them. How can I convince them I am not?
Individuals with dementia thinking someone is stealing from them is actually quite common. Ask them why they think this, as this may be because of an event that happened in the past. Ask for a description of the missing item and where they think it was stolen. Ask if it was something sentimental and if it can be replaced. If you are the main suspect, they will enter an agitated state around you, so make sure they have the object with them or somewhere close by; that way, they will feel less anxious.
How bad are hallucinations for a person with dementia?
It is not unusual for someone who has dementia to hear or see things that aren’t actually there since auditory and visual hallucinations are part of the condition. Try to investigate their source, as it could be something close by. For instance, a person with dementia can believe someone is in their home when in fact they are hearing footsteps or voices coming from next door. If the auditory hallucinations are coming from outside or next door, playing music can help drown them out.
Also, the visual hallucinations can sometimes cause paranoia (for instance, men watching them while hiding in a bush) or they can cause nothing (for instance, children playing). Distract your relative with an engaging activity, such as a walk or jigsaw puzzle, or take them to another room if the hallucination is causing distress. To understand the nature of the hallucinations, especially the scary ones, try to see if they have any link to your loved one’s past.
If your relative keeps hoarding and rearranging items like spoons or toothpicks, wait for them to look away and try removing the items from view. To avoid causing distress, make sure you do it carefully. However, there is nothing wrong with letting your loved one obsess over the items if there is no harm to it. If the obsession starts being harmful in any way, make sure their hands are occupied with something else; for example, a broom or mop, giving them something to do.
My family member has forgotten who I am. How can I help them remember?
It is possible for someone who has dementia to forget their loved ones. Do not take it hard if your family member uses their father or mother’s name to call you, as this is a sign that you make them feel safe and loved. You can also wear a name badge to make yourself identifiable, on top of putting out pictures that clearly trace the family tree.
Is it normal for my loved one to be scared of their own reflection?
It is not unusual for someone who has dementia to see their own reflection and misinterpret what they see. To prevent this from happening, make sure all lights in the room are on, curtains are closed and all reflective surfaces are covered up. Your loved one could think they are being impersonated when they see their reflection; hence, why they are getting upset.
Tell us your concerns!
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