Frequently asked questions about dementia care, answered
Dementia is a condition that affects over 850,000 people in the UK, and many of us know a relative, friend, or neighbour who needs some extra support. Sometimes, the symptoms and behaviours associated with Dementia are difficult to understand.
That’s why we’ve put together this guide to help you feel confident about caring for your loved one. Our dementia specialists have recommended specific approaches and techniques to enable you to support your loved one with their personal care, daily life, feelings of confusion or anxiety, and challenging behaviour.
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What should I do if my loved one refuses personal care?
Firstly, think about how you would feel if you required support with personal care. People living with Dementia will still experience emotions such as embarrassment, so you should encourage them to do as much for themselves as possible. Secondly, if your loved one becomes distressed during personal care, then please stop. This is a way of communicating and should not be ignored. What is causing the distress? Try to take into consideration the age of your loved one.
An elderly person may no longer have a stored memory of modern terms such as ‘shower’ and ‘shower gel’, and imagines personal care to be a tin bath with a bar of soap. Swap shower gel for soap and gently massage your loved one’s hands in a bowl of warm water – this is much more appealing than ‘washing’. It may be that the individual dislikes the feeling of their skin being wet. If this is the case, please wash one area of the body and dry immediately afterwards.
My loved one has a fear of water. How do we overcome this?
If your loved one does not like water, try using body lotion as a distraction. In this way, you can incorporate washing as part of their daily routine. Begin by saying ‘I have a new body lotion, would you like to try some?’ If your loved one says yes, put a little onto their hand and continue to offer the lotion over the following days. When your loved one feels comfortable with this process, say ‘I think we should wash our hands first’. This way, you are introducing washing using a step-by-step approach. Alternatively, you could offer a wet wipe, which may prove less distressing.
My loved one is very shy during personal care. How can I help her to feel less self-conscious?
If your loved one is shy, ask her if she is able to manage any of her personal care independently. If she feels she is able to do so, leave the bathroom or bedroom and see how she copes. If your loved one is unable to direct her own personal care needs, ask her if it is okay for you to wash your face and hands in the same room as her so she becomes used to it. This will help her to relax, as the focus is not solely on her.
My loved one dislikes getting dressed. How can I make this a more enjoyable experience
If your loved one does not like getting dressed, try leaving out a selection of clothing for them to choose from; although you should ensure that the choice of clothing is limited in order to prevent further confusion. If the weather is cold, incorporate a jumper or cardigan as part of the selection and say to your loved one: ‘It is cold today so I got this out for you. I have a warm jumper on too.’
What should I do if my loved one refuses to use the toilet?
If your loved one is refusing to use the toilet, there are some simple but effective changes that you can put in place. Dementia can also affect vision, which makes it difficult to distinguish between objects of the same colour, so if the toilet seat is white try changing it for a black one. If the floor is also a light colour, this could explain why your loved one is refusing to sit on the toilet, because they cannot differentiate between the toilet seat and the cream floor. If the floor surface is shiny, they may also mistake it for water, and feel worried about stepping onto it. Place a bathroom mat on the floor, and enter the bathroom before your loved one, encouraging them to follow.
Is there anything I can do to prevent my loved one urinating around the house?
If your loved one is finding it difficult to find the toilet, then they may urinate around the house. A good prevention strategy is to place clear signs on the door – our pictorial memory is stronger than our memory for words. If your loved one urinates in the same place each time, you could try placing a commode or bucket there. You can also implement deterrents for specific places; for example, if your loved one is urinating in the kitchen sink, try placing a chopping board or plastic bin over it, making it more difficult to locate.
My loved one has started to collect their faeces out of the toilet. Why is this happening?
It is common for those living with Dementia not to flush the toilet. This is because their memory of the toilet flush would be a high pull up chain, rather than a push button. If your loved one cannot locate the chain, then they may feel embarrassed that they cannot dispose of what is down the toilet. If this happens, there is a chance that your loved one may collect their waste and attempt to hide it. Try placing brightly coloured tape around the toilet flush, with an arrow on the wall pointing to it – this will grab their attention and encourage them to flush. Also ensure that you have a bin in the bathroom, and encourage good hand washing afterwards.
In the home
My loved one is very unsettled when we return from daily outings. How can I help them to feel they are home?
If your loved one returns home from the shops and asks ‘when are we going home?’ it is because they do not recognise their current home as their own. A person living with Dementia will remember their childhood home vividly, or a home they previously lived in. In this respect, make sure you have pictures of their previous homes around the house, as this will prompt their memory. You could also place items around the house that your loved one is fond of and can relate to, which you can utilise as a talking point and a distraction from ‘wanting to go home’. Feeling unsettled in your own home is a common behaviour associated with Dementia, and it is important that you are able to provide reassurance to help your loved one feel safe in their own home – imagine how unsettling it must be to want to go home, and not being able to do so!
My loved one can find having visitors distressing. Is there any way we can overcome this?
People living with Dementia can often find being in a loud and busy environment (a room full of visitors, for example) very distressing. This is because Dementia affects hearing, making it difficult to determine who is having a conversation with voices seeming more raised than they actually are. If possible, encourage family members and friends to visit at different times, as this will reduce feelings of anxiety and make it easier for your loved one to communicate. If this isn’t possible, make sure there is a quiet room where your loved one can go to relax if they become upset or agitated – we all know how tiring it can be having visitors!
Can patterned carpets and wallpaper affect someone living with Dementia?
Patterned carpets and wallpaper can be very confusing for someone who is living with Dementia. Your loved one may attempt to pick flowers off the carpet or wallpaper; if this happens, try placing a large, plain rug over the carpet to hide the pattern. You could also consider placing plain pictures on the wall, particularly ones that relate to your loved one’s life history. If your loved one continues attempting to pick the flowers, try turning this behaviour into a realistic activity by potting some plants together.
My loved one becomes infuriated when answering automated phone calls. Is there a reason for this?
It is normal for a person living with Dementia to become anxious – and sometimes aggressive – when accepting automated calls, and this is because the person on the phone will not respond to their questions. This can cause your loved one to become agitated, and maybe even scared that they are being watched. To prevent this happening, speak to the telephone company in order to allow only recognised numbers.
Leaving the house
My loved one often tries to leave the house and go outside. Is it safe for them to do so?
If your loved one would like to go outside, encourage them to put on appropriate clothing and accompany them for a short walk. You can also ask where they are going, as this will help you make sense of the situation. If possible, make the garden secure and create a route where your loved one can enjoy bird feeders, potted plants or water features. A door chime or pressure sensor mat will help to notify you when your loved one is leaving the house, or if they live alone, a GPS tracker enables family members to know their location. Try not to lock the door, as this will cause your loved one to go into a frenzy and become obsessive about finding the keys in order to get out. This will lead to further confrontation, which should be avoided at all costs
My loved one keeps running away from me when we are out in public. How can I stop this happening?
It is normal for your loved one to want to maintain their independence, and they will continue to leave the house when they see fit. Your loved one may become distressed when they see that you are following them, because they feel that you are treating them like a child. If your loved one does run away, do not attempt to chase them as they will only run further. Follow behind, keep your distance and try to remain out of sight if possible. Try to consider that if they do not recognise you it will be very scary for them thinking that they are being followed by a stranger.
How can I help my loved one to feel less anxious when they have to attend appointments?
If your loved one feels nervous about leaving the house for appointments or activities, don’t tell them about the appointment until you are about to leave the house. This will help to reduce anxiety as there will be no time to fixate on leaving the house, whilst also preventing them from worrying about it.
My loved one becomes anxious when hearing passing traffic and people. How can I help to reduce this anxiety?
If your loved one feels anxious when people and traffic pass by their house, try distracting them by sitting in a back room and putting on their favourite music to drown out the noise. If you can, try to establish the specific reasons why your loved one is anxious about people passing the house – were they burgled in the past? This might help you to determine the source of insecurity.
My loved one will not let me wash her clothes. Is there any way around this?
If possible, wash your loved ones’ clothes when she is out of the house; perhaps with family or at day centre. Many years ago clothes would have been washed by hand, and this may explain why your loved one is trying to get as much use out of them as possible. In a similar respect, your loved one may be frightened of the noise a washing machine makes but is unable to communicate this to you. Once her clothes are washed, dry them in a cupboard or on a radiator that is seldom used, and place into cupboards without her knowledge. This will help to relieve anxiety and reduce anger associated with this.
How can I initiate movement when my loved one refuses to stand?
Dementia causes a ‘pins and needles’-like sensation in the feet due to damage of the brain. This means that every time your loved one stands up they will experience pain and discomfort, resulting in them not wanting to do it. Begin by encouraging your loved one to put their feet on the floor in order to familiarise themselves to the sensation. When they feel comfortable with this, ask them to stand. Once they are in a standing position, you may find that they shuffle their feet to minimise the ‘pins and needles’ sensation, so allow them to continue doing this. This behaviour is very common when getting out of bed in the morning, so be patient and allow plenty of time.
What should I do if my loved one refuses to walk up the stairs?
Your loved one may be resistant to put their foot on the first step of the stairs if the carpet is the same colour as the hallway. This makes it difficult for someone living with Dementia to determine where the first step is and how many stairs there are. Try placing coloured tape around the edge of the first step to highlight where the step is (be careful that the tape does not come unstuck, causing increased danger) and putting a small coloured mat where the join in the hallway meets the bottom step. Please be vigilant that this does not cause a trip hazard.
Following – day time
My loved one has started following me around during the daytime. Is there a reason for this?
If your loved one is following you around during the day, it is most likely because they are bored and want to be included. Involve them in whatever you are doing; for example, if you are cooking, you could encourage them to peel the potatoes whilst sat at the table. If you are doing the housework, give your loved one a duster and allow them to help you. There are plenty of household tasks that can be turned into an activity to provide stimulation for someone living with Dementia.
Following – night time
Is there a reason my loved one comes into my room at night time?
It is very common for a person with Dementia to follow their loved ones around, and this may happen at times where they need extra reassurance. Night time is a good example of this, and there are several reasons why your loved one may display this behaviour:
1. If your loved one feels safe with you, they may just want to check that you are still there. Reassure them, and guide them back to their own bedroom. To help them recognise the time of day, open the curtains to show them that it is dark outside.
2. If your loved one used to sleep in a different room, then they may feel that they are in the wrong place and begin searching for what they believe to be their bedroom. The easiest solution is to move them back to their original bedroom.
3. If your loved one used to share a bed with their husband or wife then they may be looking for them. If their husband or wife has passed away, gently distract them and guide them back to bed. If your loved one and their husband/wife now sleep in different rooms, see if it would be possible to have separate beds in the same room.
4. If your loved one used to have children, they may be checking that they are okay. Sometimes people living with Dementia respond well to a doll, as it gives them something to focus their attention on.
Is there anything I can do to help my loved ones perception of time?
It is common for a person living with Dementia to continually ask what the time is. Try to establish a structured routine, using visual prompts such as a large wall clock or white board where you can regularly update the time. It is also important to determine any previous routines that your loved one once had; for example, they may become distressed around 3pm when they would have usually collected their children from school. They no longer recognise where they should be going, but still feel the emotional pull of being late to collect their children. It is a good idea to complete a life book with your loved one in order to explore their previous routines, hobbies and interests and to create meaningful activities. You may find that if they are occupied with something that interests them, they stop asking the time.
Eating and drinking
What can I do to make meal times less distressing for my loved one?
It can be difficult for a person living with Dementia to identify food that is presented on a plate if the colours do not contrast. Always use plates and bowls in plain, bold colours and ensure that food is separated well so that your loved one can easily see what is what. Try to avoid patterned crockery as this can be very confusing, and serve small portions so that your loved one does not feel intimidated by a large plate of food. If possible, choose foods that can be eaten easily with the fingers or that stay on the fork or spoon. Messy meals can cause frustration and anger, which leads to your loved one becoming disinclined to eat.
My loved one doesn’t allow me to cook in her home. Is there any way we can solve this?
Your loved one may be refusing to let you cook because they believe that it should be their responsibility and feel insecure that someone is taking over. Encourage them to participate in cooking activities, allowing them to share advice and give you feedback. This will help your loved one to feel valued and included.
What should I do if my loved one refuses to eat?
Try to find out the reason why your loved one is refusing to eat – is it because they do not feel included in meal preparation? If this is the case, they may be refusing to eat because they are unsure about how the food has been prepared, which ingredients have been used, and how it has been presented on the plate. On the other hand, your loved one may be starting to experience swallowing difficulties, and are therefore worried about choking. If this is the case, prepare foods that are easy to swallow or think about liquidising meals.
Lying or telling the truth
Should I directly discuss with my loved one the fact that they have Dementia?
There is no right or wrong answer to this question; it all depends on how your loved one responds to the information that you provide. Some people find it reassuring to understand that they are living with Dementia, and that there is a reason they are becoming forgetful. Other people would find this information very upsetting, and so it would be best to avoid the subject and say something like ‘we all get forgetful at times’ before moving onto a distraction activity. Your loved ones response may change on a daily basis depending on their mood, so what may be the correct thing to do one day will be different the next.
My loved one’s husband has recently passed away. How can I support her through this difficult time?
In this situation it is best to take each day as it comes. Gently support your loved one by allowing her to talk about her husband, and make sure there are plenty of photographs available. If she asks you ‘where is my husband?’ explain that they have gone to a better place, as opposed to died. Although this is a very difficult time, it is important that a person living with Dementia goes through the normal grieving process. If your loved one wants to attend the funeral, please allow them to do so, but ensure there is a quiet room where she can go if things become too much. A large room full of people will be very overwhelming and frightening. If your loved one says she wants to go home, please take her.
My loved one can no longer be trusted to control their own finances, but I would still like them to retain a sense of independence. What should I do?
Allow your loved one to have a bank account with a set amount of money in it and one that cannot go overdrawn. Also give them a purse or wallet with a set amount of money that can be topped up regularly. If this is not suitable, try using monopoly money or toy money.
What should I do if my loved one refuses to take their medication?
If your loved one is refusing to take their medication, you must try to find out why. If they are experiencing swallowing difficulties then consult their pharmacist or GP to find out if the medication comes in liquid or dissolvable form. If your loved one dislikes the taste of their medication, try to find out if it is safe for them to take their medication with food or drink. Allow your loved one to have control over their medication, and promote their independence wherever possible. If you do not promote independence, your loved one may start to believe you are trying to poison them and refuse to take it. Please note that you should only disguise medication in food if you have written consent from a GP. This method should also only be used as a last resort where the individual is deemed to lack the mental capacity to make their own decisions regarding their medication.
My loved one has begun spitting in public. How can we stop this?
It is very normal for a person living with Dementia to lose perception of inappropriate social habits such as spitting. Your loved one’s moral understanding of the world around them has disappeared as a result of damage to the brain, meaning that they believe spitting is a socially accepted habit. Ensure that you always have a bucket or tissue on hand for them to spit into, that you can dispose of or wash regularly. If your loved one is coughing before spitting, this may be a sign of a chest infection and it would be worth seeking medical advice. Try to think about your loved one’s history – did they used to chew tobacco? If so, try giving them something that will occupy the mouth, such as polo mints or a lollipop. In the later stages of Dementia spitting happens because the individual loses the ability to swallow. When this happens, encourage your loved one to swallow regularly by giving them a nice drink or something to eat.
My loved one has started swearing which is something they have never done before. Why is this?
In the later stages of Dementia some people may begin to swear, and often family members and relatives are shocked by this. You may believe that your loved one has never sworn before, but this is not usually the case. They probably swore when they were younger and before they had children, or at least recognised the words. Dementia can cause our word memory to diminish, so your loved one may no longer have the word ‘frustrated’ stored in their brain. Therefore, they will use a swear word to communicate their anxiety and frustration. It is okay to explain to your loved one that these words upset you, and often they will understand this. If your loved one swears again in five minutes time, please remember that they may have forgotten the previous conversation. How your loved one reacts to this will very much depend on their personality; if they have always had a cheeky sense of humour, you may find they will swear more if you advise against it. If this is the case do not make a big deal out of the swearing, and try to ignore any inappropriate words used.
Can Dementia affect digestion?
Yes, Dementia can affect our digestion, and as a result excessive wind is produced. Dementia also affects our understanding of how to act in public, and your loved one may not understand that breaking wind in a social situation is unacceptable. Your loved one is simply meeting a need as it occurs, but you can help them by maintaining a healthy, balanced diet with plenty of fluids. Please remember that your loved one cannot help breaking wind, as Dementia affects our natural bodily functions.
My loved one always wants to sleep in the afternoon, how can we prevent this?
If your loved one always wants to sleep during the day time, make sure they are doing activities such as going for a walk, doing a jigsaw, or anything that is going to keep them awake. If this does not work, then allow your loved one to have a nap at a specific time of the day. Always wake your loved one with something nice; for example tea and biscuits, as this will make it more enjoyable for them to get up again.
My loved one keeps waking up during the night. How can we overcome this?
Firstly, make sure that your loved one is kept busy during the day so that they feel tired at night time. Sometimes, despite your best efforts, your customer will continue to wake during the night as Dementia disorientates their sleep-wake cycle. If your loved one wakes up during the night, open the curtains and show them that it’s dark outside. This should help them to recognise that it is time to sleep. You could also try showing your loved one the time on a clock, before assisting them back to bed.
Aggression or agitation
My loved one becomes very agitated when I leave the room. Is there anything I can do to stop them feeling this way?
If your loved one feels agitated when you leave the room, take them with you. If you go to the toilet, carry on talking to them when you go. If the toilet is too far away, take your loved one with you and place a chair outside of the bathroom. Your loved one is asking ‘where are you?’ because they feel safe with you. If you are unable to take your loved one with you when you leave the room, please reassure them that you will be back shortly.
What should I do when my loved one is angry?
Please remember that physical aggression or verbal actions are a way of your loved one letting you know that they are unhappy, scared or upset about what you are doing. If your loved one gets frustrated when you are helping them, take a step back and let them know that you are going to give them some space. Leave the room for a couple of minutes to allow them to calm down, then return to see how they are feeling. You should always note exactly what is happening when your customer becomes aggressive, as it is likely you will notice a pattern occurring.
My loved one thinks I am stealing from her. How can I help her to see that this is not the case?
It is very normal for people living with Dementia to believe that others are stealing from them. This may stem from something that happened in their past, so ask questions to see if you can build a bigger picture. What did the object look like and where was it stolen from? Was it your favourite object? Could we get a replacement? Understandably, your loved one will become very agitated if they think you are stealing from them, so if they are able to keep the object close to them (perhaps in a handback or pocket), this will help to relieve their anxiety.
What are hallucinations like for someone living with Dementia?
Hallucinations can either be visual or auditory, and it is common for those living with Dementia to see or hear people in their house. This is often a misinterpretation of where a noise is coming from; for example, if your loved one hears footsteps from next door, they could mistake it for someone being in their own house due to their hearing being affected. Some people living with Dementia may experience visual hallucinations; some which cause no distress (for example, children playing), and others which are persecutory (for example, men in trees watching them). If the hallucination is causing distress, try distracting your loved one with an enjoyable activity, move into another room, or ask if they would like to go out. Hallucinations can be very scary for those living with Dementia, so try to establish whether what they are seeing relates to their past in order to gain a better understanding.
If your loved one is continually rearranging hoarded items such as tissues or sweets, you could try removing it when they are not looking. Please be careful when doing this, as it may cause significant upset. If your loved one is not causing any harm by fixating on the items, allow them to continue doing so. If the fixation begins causing harm in any way, then try giving them something to do with their hands; for example, dusting or polishing ornaments.
Is there any way I can help my loved one remember who I am?
Sometimes people living with Dementia find it difficult to recognise family members. Please do not be concerned if your loved one calls you by their mother or father’s name; they are telling you that they love you, and feel safe with you. Sometimes wearing name badges can help the individual to understand who is who, alongside photographs of the family tree in a clearly visible place.
My loved one is very scared when she sees her own reflection. Is this normal?
It is common for people living with Dementia to misinterpret what they are seeing in reflections. It might be a good idea to cover up mirrors, close curtains and make sure the room is well lit. It can be very upsetting for your loved one when they are looking at their reflection as they believe that someone is imitating them, so try to prevent that from happening in the first place. It is a good idea to have light music playing in the background to drown out noises from next door and outside.
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