Your approach to personal care should always take full account of the feelings and dignity of the person you are helping. People with dementia cannot always tell you if they feel embarrassed. Personal care must be given to the individual; it’s not just a matter of tasks that must be completed. Respect his/her feelings at all times.
The routine of dressing can become quite tiring, so try to make it as pleasant as possible. It is much easier to just dress the person and get it done with, than to spend time trying to persuade him to dress. It is important for the person’s physical and mental health, however, to encourage the person to do things for himself for as long as possible. As the disease progresses, he may need more help.
Help keep the person’s sense of identity by giving every opportunity for him to make a choice. Life is about choices. A danger of caring for people with dementia is that it is easier to make the choices for them, or we do so without realising it, thinking we are helping them by telling them what to do.
- Put away clothing that might cause confusion, e.g. put away winter clothes during the summer.
- The day starts with getting out of bed and changing from pyjamas into day clothes. This helps the person to realise that it is now daytime.
- Give him or her a reason for getting up and getting dressed.
- Make sure that dressing takes place in private.
- If needed, give simple instructions e.g. ‘Now put your arm through the sleeve’.
- If the person does not want to get up or get dressed, try to find out the reason and leave it for a while, rather than causing more distress.
- Ensure that there are no distractions in the room.
- Try to warm up the room before getting the person up.
- Try to keep to a dressing routine that the person is used to.
- The person may like to be left alone whilst dressing as it embarrasses him or her to dress or undress in front of someone else.
- Begin the task for the person, if necessary.
- Give people with dementia time. Give help only once they have gone as far as they can go. Avoid taking over.
- Pain may also put them off getting dressed as they might have hurt themselves, be suffering from arthritis or even feel ill.
- Do not make a big deal of behaviour that really is not a problem. It should not matter if the person puts the dress on back to front or wears three dresses at the same time, unless she’s going to be seen in public and you do not want her to be made a fool of. If family or friends are visiting, just explain the situation to them and how it is more important that she made the choice and dressed herself, than how she looks.
A possible simple routine
- Ensure that the way you present yourself is friendly, calm and relaxed, with a smile on your face, even though you might have woken up in a bad mood or are, yourself, under pressure.
- Begin the conversation with orientating information, which means identifying yourself, and calling the person by name.
- Create a relaxed atmosphere by beginning the conversation socially so as to win the person’s trust, which will make the task much easier. Spend time talking before you begin, e.g. ask how s/he slept, discuss the weather or family members, or look at photographs and talk about the people in them.
- Give the person clothes to choose from that are to his or her taste – our clothes are part of our personality. Take two suitable items out of the cupboard and ask which one s/he would like to wear. Show one item at a time. If neither is liked, take out another two. Do not give too much choice at one time as this may cause confusion. Humour or gentle teasing can also be used.
- Put the clothes out in the order that they will be put on and then leave the person to carry on, coming back now and again to see if help or encouragement is needed.
- If the person needs more help, give instructions in short steps, doing one task at a time. If an item is put on incorrectly, have a laugh while you correct it. Once the clothes are selected you can comment on how nice the outfit will look for the daughter who is coming, or for the tea party or any other function that might be looked forward to. It might just be sitting in the lounge or garden.
- Looking good helps us to feel good. Having hair styled and make-up put on, plus a dab of perfume or a piece of jewellery, plays just as important a role in dressing as do the clothes. Women who used nail varnish might enjoy having their nails done. Men may need to be reminded to shave. An electric razor would help maintain the independence of this task for longer. Beards and moustaches will also need trimming.
- Compliment the person on how nice s/he looks, to encourage her or him to be proud of her or his appearance.
Clothing tips for easy dressing
- If the person knows how to use Velcro, it is worth replacing zips with Velcro, especially the fly-zip on men’s trousers and the zips on skirts.
- Buy slip-on shoes or those that do up with Velcro, rather than lace-up shoes.
- Boxer shorts are easier for men than the conventional shorts, as are tracksuit pants rather than trousers. This will only work, however, if the items chosen are according to the person’s taste.
- Buy clothes that are easy to manage such as clothing with front fastening or without any fastening at all.
- For a woman, front-fastening bras are easier to manage. Do not let a woman who is used to wearing a bra, go without one, as she will be uncomfortable and it can also lead to soreness.
- Discourage the use of slippers whilst active during the day as they do not give enough support and the person might slop around in them, increasing the risk of falling.
Most adults like to wash on their own when no-one is around to watch them. When looking after people with dementia, you need to remember this and only help as much as you have to. It is important to respect their need to be on their own and let them wash themselves for as long as they possibly can.
Try to bath or wash people at the same times that they usually did it themselves. If they bathed at 5pm, try to bath them at the same time. Also, find out what they usually put on after bathing, as some people dress in their pyjamas even though it is still early.
As the disease gets worse, some people need to be reminded to bath or wash. At times you might also find that some refuse to bath or wash even though they were once very clean people. When this happens, you will need to try very hard to talk them into bathing/showering, or standing at the basin to wash.
Reasons a person may not want to bath or wash
- Scared of falling
- Scared of being left alone in the bathroom.
- If showering, the spray might be too hard on the person’s skin.
- The person might feel ashamed if s/he was incontinent and does not want you to see the mess.
- Does not want you to bath her/him.
- The room is too cold
- The room is too dark
- Does not like to be seen without clothes on
- Does not like showering
- Does not like bathing
- The water in the bath feels too deep
- Lying in the bath hurts (especially if the person is thin)
- Likes to undress in the bedroom, not in the bathroom.
Preventing accidents in the bathroom
- Make sure that the floor is dry
- Make sure that the room is warm before s/he gets undressed
- Make sure that the temperature of the water is not too hot
- When filling a bath, always run the cold water first in case the person climbs into the bath when you’re out the room
- Make sure that the person cannot lock the bathroom door from the inside. S/he may have an accident, or forget how to unlock the door and you will not be able to get in to help
- Always let the person stand on a rubber mat so that s/he does not slip
- If you do not have a rubber mat, put a coloured towel at the bottom of the bath to stop the person from slipping. It will also help her/him to see the bottom of a white bath
- Putting a stool (not wooden) in the bath or shower for the person to sit on will make that person feel safer
- Never leave a confused person alone in the bathroom
- Rails attached to the wall next to the bath or in the shower that s/he can hold onto will help to stop the person from falling. If a rail is put against the walls next to the toilet, the person can use the rail to pull her/himself up from the toilet seat.
Tips for bathing and washing
- Try to make bath time a nice time to spend together
- Talk to the person and say what you are doing as you bath her/him
- Do not be bossy and order the person to bath. Talk about how nice it will feel to be clean and look nice for visitors or the family, or for going out
- Stay calm and try to get her/him to wash, without fighting. If the person does not want to bath just then, leave it for a while and try again later
- Make sure everything is ready before you start bathing the person and help her/him put out the clothes to wear after the bath
- If s/he is very confused, it might be better to get everything ready for the bath and then say that you will help her/him to start getting undressed
- People who do not like being undressed can be washed in their underwear and then dried and dressed with a towel wrapped around them
- Check the skin for any sores, marks or bruises and report it to the nurse or someone in the family
- Use soap that does not smell too strong or it will make the skin dry. Make sure that all the soap is rinsed off. Never put bath oil in the bath water because it will make the bath slippery and the person will fall
- If you shower the person, start at her/his feet and then go upwards
- Do not wash the person’s hair when s/he is bathing or showering
- Give her/him the facecloth and soap. Let the person do as much as possible, only helping when help is needed
- Make sure that the hands and face are washed, under the arms, between the legs and, for a woman, under the breasts
- Make sure that the person is dried properly, especially under the arms, between the legs and, for a woman, under the breasts, or sores will develop
- If the skin is dry, put on a cream. If the person doesn’t want a particular cream, “Aqueous cream” is the best
When you are caring for people with dementia, you need to encourage them to be independent (do things for themselves) but at the same time you need to make sure that they cannot get hurt or put themselves in danger. A simple fall can result in that person no longer being able to lead an active and independent life. Small accidents can and will happen in the home but there are ways in which we can try to prevent these accidents from happening.
THINGS TO REMEMBER
- Dementia does affect the person’s memory.
- The person with dementia does not always know what is right and wrong.
- As people get older they fall more easily because with age come changes in vision, hearing, muscle strength, co-ordination and reflexes.
- They also move slower than other people. This can be dangerous for them. An example is if they touch a hot plate or pot on the stove, they are slower in taking their hand away and so will get very badly burnt.
- Some people may also have other diseases or disabilities that make it harder for them to do things.
- Also, they may be taking medication that can cause them to feel dizzy.
- If the person with dementia is very nervous or anxious, accidents will also happen more easily.
WAYS TO MAKE THE HOME SAFER
- Ensure that the person has her/his eyes tested. If s/he wears glasses, the eyes need to be tested every two years.
- If the person loses her/his balance easily, ask the doctor if the medication is affecting her/him.
- If the person gets up at night, leave a small light on to show theway, or give the person a torch, if s/he remembers how to use it.
- Also, during the day, make sure that there is enough light so that the person can see where s/he is going.
- Make sure that there are no loose mats or tiles, toys or mess on the floor that someone might fall over.
- Remove all pieces of furniture that someone might fall over when moving about the house.
- Do not move furniture around because the person may become confused.
- Be careful that the people will not slip on the floor and get hurt. Also make sure that, if anything is spilt on the floor, it is wiped up straight away.
- Another problem can be electric cords or wires lying on the floor. The person can very easily fall over them.
- Furniture that is broken or wobbles can cause falls and injuries.
- Older people usually like to wear their slippers in the house. Just make sure that the slippers fit properly and they are not slopping around in them.
- If the person can fall easily, handrails can be put on the walls, to hold onto. It is useful to put one on the wall in the toilet and shower or next to the bath, so that the person can hold onto it to sit down or stand up. Handrails are also useful next to any steps inside or outside the house.
- Encourage the person to use a walking stick or a walker if her/his walking is unsteady
- If the person drinks alcohol, too much of it can also cause a fall.
- Encourage the person to stand up slowly. Getting up too quickly often makes people feel dizzy.
- Being too hot may also make someone feel dizzy.
If someone does fall and looks bad or is in pain, do not move the person and do not give anything to drink in case s/he needs to have an operation. Cover the person with a blanket and put a small pillow under the head, then send for an ambulance or, if there are no ambulances, ask for help from the neighbours to get the person to hospital.
- Lock all medicines and tablets away in case the person swallows them.
- It is very important to lock away everything used for cleaning, as well as paraffin, methylated spirits and drain cleaner, in case the person with dementia drinks one of them, believing it to be cooldrink or medicine.
- If you do think that something poisonous has been swallowed, the person must be taken immediately to the nearest hospital or clinic. Take with you the poison that you think was swallowed, to show the doctor. If you have a phone, you can phone the ‘Poison Control Centre’ on 0800 333 444 and tell them what the person has swallowed. They will tell you what to do.
- The danger of the person getting burnt can be a big problem. Ensure that all matches, candles, lighters, gas heaters and small gas stoves are locked away.
- Candles are a big problem in causing fires as they are easily knocked over, or clothes and blankets touch the flame and start a fire.
- Never dry clothes over a fire or heater as this can cause a fire.
- If using coal for heating, make sure that there are no holes in the stove or chimney that will let the smoke into the room. This smoke is poisonous and the people in the room can die from it.
- If there is an open fire in the room, it should always be covered with a fire screen that cannot fall over.
If the person does get burnt, put the part that is burnt into cold water for at least 10 minutes to stop the burning and help stop the pain. If the person takes the part that is burnt out of the water and if the pain starts again, put it back in the water. The burn will warm the water, so change the water or add cold water. Do not take off any clothes or the skin might come off with them. If the hands have been burnt, take off any rings, watches or bracelets because burnt skin can swell up. Do not put anything on the burn, just cover it with a clean wet cloth and take the person to the nearest clinic or hospital.
IN THE KITCHEN
- If there is electricity, have an electric kettle that switches itself off when the water has boiled. If there is no electricity and gas is used to boil the water and the person is at home alone, make a drink that is not too hot and leave it in a vacuum flask or covered jug.
- Keep the very sharp knives in a safe place, but make sure that anything that the person can safely use is within reach, so that s/he does not have to climb on a chair and perhaps fall.
- People with dementia seem to like turning on taps and unfortunately it might be the hot water tap and so they burn themselves. If possible, remove the handles of the hot water taps and keep a “tap turner” in your pocket. You just put the “tap turner” over the top of the tap where the handle would go and open the tap with it. The “tap turner” is like a small plastic spanner. If you cannot get a “tap turner”, a small spanner that can be bought from a hardware store will also work.
- People with dementia should not use an electric blanket in bed in case they wet themselves. If a hot water bottle is used, it must have its own cover or be wrapped in a towel.
- If people with dementia smoke, make sure that they do not smoke on their own. You will need to keep the cigarettes and lighter or matches for them. It is important that they do not smoke in bed.
- Never take an electric heater into the bathroom as anyone in the bathroom can be electrocuted if it gets wet.
- Always make sure that a window is left open, even just a little bit, if you are using gas, paraffin or coal to cook or to heat the room.
- Keep a torch with spare batteries in the house in case the lights go out.
- Use rubber mats in the bathroom. A coloured rubber mat or wet towel in the shower or placed on the bottom of the bath will stop the person from slipping.
- If there is an electric geyser in the house, set the water temperature to 48.8◦C or lower so that the person does not get burnt.
- Keep a list of telephone numbers that you can phone for help. Keep this list next to the phone if there is one in the house. If not, keep the
- list with the telephone card so you can use it when you phone from a call box or ask someone to phone for you.
- If the person lives alone or is left alone for a while, ask a friend or good neighbour to check on the person and watch out in case something goes wrong.
- If you feel you can trust them, leave a spare set of keys with friends or neighbours and leave a telephone number with them or tell them where you are going.
- Put locks on doors and cupboards so that you can lock away anything that might hurt the person. People with dementia do like to open drawers and cupboards, unpack them or just go through them, so try to leave one cupboard open for them or they might get very anxious if they can’t open anything.
Further reading: http://www.alzinfo.org/alzheimers-treatment-modifying.asp
As a carer you will want to make sure that the person for whom you are caring eats a healthy, well balanced diet. Depending on the individual and the progress of the dementia, mealtimes can be pleasant, with the person thoroughly enjoying the food or they may be extremely stressful times for both of you.
If there is a problem, these notes may help you to find possible causes and remedies:
Possible physical factors
The progress of the disease: The disease cannot be cured, so you will have to help the person more and more at meal times.
Over-eating or an insatiable appetite: can also be a symptom of the disease.
Try giving as many as six small meals a day, rather than three large meals.
Give healthy snacks such as fresh fruit (cut into pieces), raisins and dried fruit.
You might have to lock away foods that the person tends to eat too much of, or that are fattening.
Do not leave the person alone in a room with food unless it is for her/him.
Try to distract the person with activities, walks etc.
The appetite may also be because the person has forgotten that s/he has just eaten. Try to distract the person but if that doesn’t work, give a healthy snack.
On the other hand, the person may just forget to eat or even hide away the food that has been given. If the person lives alone, this would be time to consider other living arrangements.
Chronic illness: can make people feel generally weak and too tired to feed themselves. This might happen only now and again, when you can give the person something light to eat. If this continues, however, it may be necessary to take the person to the doctor or clinic.
Generally feeling unwell, is ill or has an infection: Having looked after the person, you will soon know when s/he is not well. Take the temperature, although elderly people sometimes do not have a high temperature, even though they are ill. If possible, smell the urine and check its colour. If the urine smells like fish or has an abnormal smell and looks cloudy (not clear), the person most likely has a urinary tract infection, which will need medication, and you should give plenty of fluids.
Pain: If a person can’t tell you that s/he is in pain, a good indication is to watch the face and hands. When in pain, people usually pull a face and hold the painful area. If the cause of the pain is unknown, it will be necessary to take her/him to the doctor.
Dry mouth: is commonly caused by medication, especially psychiatric medication, and makes both chewing and swallowing almost impossible. Do not serve food that is dry and ensure that there is always water available during meals.
Sores in the mouth, cavities in the teeth: check the mouth and if necessary take the person to the dentist.
Ill-fitting dentures: take the person to the dentist.
Cannot see what s/he is eating because of changes in vision/cataracts: watch the person walk. Does s/he tend to walk slowly and hold onto things? Does the person look very closely at things? When last were the person’s eyes tested? If sight is a problem, it’s a good idea to visit the optician.
Side-effects of medication e.g. difficulty in swallowing, drowsy, too tired to eat: when last was the medication reviewed? Has the medication been changed or is s/he on new medication? Sometimes, new medication can make the mouth dry, but this might improve. The side effect might also be a stiff jaw or difficulty in swallowing. If you suspect that medication is the cause, it will be necessary to take the person to the doctor.
Does not feel hungry: There are times when we do not feel like eating but this feeling does not last and, by the next meal, we are ready to eat. Let the person eat as little as s/he wants. If the person is still not eating at the next meal there could be another reason. Don’t wait for mealtimes – allow the person to eat when s/he becomes hungry.
If the person is under-eating, try giving a glass of juice, wine or sherry (if alcohol is permitted) before the meal. This might make the person feel hungry.
Tempt her/him with milkshakes, egg flips, ice cream or a favourite pudding such as bread- or rice pudding.
Make sure the person is getting enough exercise to help increase the appetite.
Prepare favourite foods
Use supplement drinks such as Ensure, Complan, Sustagen, etc
If feeding the person, try to give all or most of one food on the plate before moving on to the next. Maybe the sudden change in texture and flavour is confusing
Mix ice cream in with the other foods if this will encourage the person to eat
Make sure the person is in a comfortable position, as upright as possible. Do not stand. Sit at the same level as the person.
Check with the doctor about the use of vitamin supplements and any weight loss.
Constipated: When last did the person pass a stool? Two bowel movements or fewer per week is considered constipated. Try natural remedies first such as prune juice, raisins, figs and boiled beetroot, before buying something to treat the constipation.
Jaw muscles not working properly/chewing problems: This is noticeable if the person has trouble chewing or even opening her/his mouth. The doctor or a speech therapist can confirm if this is a problem and tell you the best way to serve the food (e.g. semi-solid or liquidised) or to use substitute feeds such as Ensure. You can try the following:
- Make sure the person is in a comfortable position, as upright as possible. Do not stand. Sit at the same level as the person
- Avoid sticky food such as bananas, peanut butter and white bread
- Avoid food that has a tough skin
- Moisten the food with gravy or a sauce
- Serve chopped, soft foods such as scrambled eggs, cottage cheese, yoghurt, chopped chicken, mashed potatoes and gravy. Avoid ‘loose’ food such as rice, which is difficult to control in the mouth and tends to ‘hide in corners’ and get under dentures
- Offer small bites, one at a time
- Try light pressure on the lips or under the chin to get the chewing going
- Tell the person to “Chew now” and “Swallow now”
- Demonstrate the chewing motion
Decrease in sense of smell and/or taste: this may be due to medication side effects or ageing. Try adding flavour to the food with more salt or different spices. Provide bottled sauces such as tomato, Worcester, barbecue etc at meals. It may be necessary to remove them once a choice has been made, if the person is likely to use them repeatedly.
Depression: is a psychiatric illness and needs to be treated. One of the symptoms can be over- or under-eating. Once the person is on medication, the appetite should return to normal.
Tendency to choke and general difficulty in swallowing: The person might not want to eat in case s/he chokes, which is frightening for both of you. Do not give foods that are hard to chew e.g. popcorn, nuts and raw vegetables.
Water is more difficult to swallow than thicker fluids. Try giving milkshakes, egg flips and the thicker fruit juices such as apricot juice.
Soft porridge, preferably served with milk for added nutrition, is also easier to swallow.
Serve liquids at room temperature (unless the person likes warm drinks). Prepare food that is easy to chew. Moisten the food with gravy. Offer small bites, one at a time, and allow plenty of time between each bite. Remind the person to swallow. Check the mouth now and again for food stored in the cheeks.
Cravings: for both salty and sugary snacks. Some medication can cause cravings, e.g. antidepressant medication can cause a craving for sweet things. In this case, try to give healthy sweet or salty foods.
Forgetting what to do next: The person might forget what the next move should be, what the cutlery is used for, or what to do with the food in front of her/him. These moments can be most frightening for that person. Remain calm and show what the next move should be. You may even have to guide the food to the person’s mouth.
Possible emotional factors
Fear and anxiety: is experienced as the person cannot tell you what s/he wants, or is scared of choking or embarrassing her/himself in front of others.
Keep telling the person that s/he is not a nuisance.
Do not rush her/him.
Let the person eat alone, if s/he wants. If in a care facility, seat the person at a table with others who have similar problems.
If s/he does make a mess or spill, say that it is alright and do not make a fuss.
Upset from change in routine: People with dementia need routine. Keep to a regular mealtime schedule. There may be times when you have to change the routine. If so, give warning that you are going to do so, say why you are doing it and what you are going to do. The person might still feel fed up but will accept it more easily if told.
Not given choice: Life is about choice. As far as possible let the person choose when, where, what and how to eat.
Rushed by others: Do not rush her/him. Give enough time to eat the meal. Make it enjoyable for both of you by using it as your time together.
Boredom: Encourage the person to help lay the table and even prepare the food, to some extent.
Sit with the person while s/he eats.
Play music that s/he enjoys.
Maybe the person is bored with the food – try some new recipes or another way of preparing it.
Wants to feed self: Encouraging them to do things for themselves is important when caring for people with dementia. You will, however, have to accept their changing table manners and likes and dislikes. They will be less frustrated if you make it easy for them to feed themselves. It does not matter if they are slow, make a mess or spill. It is more important that they are feeding themselves. Praise them for managing to do so.
Use bowls and cups that are larger than the portion of food, to prevent spilling
Use bowls rather than plates
Put out only the cutlery the person needs
Put one course at a time on the table, to prevent confusion
Use bowls and plates of different colours to the place mat or tablecloth, to help the person see the plate
Use coloured bowls to help the person see the food more easily
Use plates with suction cups on the bottom, or put a damp cloth under the plate, to prevent it from sliding
Do not use plastic utensils as they are too light and may break in the person’s mouth
Bendable straws and cups with lids or spouts may also be useful
Use mugs for soup and stew but use the ones with two handles that are large enough for the person to have a good grip
Get a plate guard that clips onto the side of the plate, preventing the food from being pushed off
Large rubber handles can be bought to cover the handles of cutlery, making it easier to hold and control. A length of rubber tubing can also be cut for this purpose
Serve ‘finger foods’ such as chips, cheese cubes, and pieces of chicken, fresh fruits, vegetables, or small sandwiches. These finger foods are also ideal if the person does not like to sit down to a full meal but prefers to ‘snack’.
Does not like the food: Maybe the person does not like the taste, look or smell of the food. Maybe this is not what s/he wants.
Here we first go back to ‘choices’. Make the food look as attractive as possible. Do not mix the food together. If it is necessary to feed the person, feed one or two items of food at a time and say what is on the spoon or fork.
Serve it with an appetising liquid drink.
Try new and different foods, new recipes.
Responding to your mood: Maybe you are not in a good mood that day, or are worried or sad about something. A person with dementia can pick up moods very easily. If possible, explain why you are feeling as you are.
Too many demands: The person might feel anxious at having been given too many tasks or instructions at once.
If you do need to give instructions, give them one at a time, and let the person finish one thing before going on to the next.
Being asked too many questions: Some carers can make the mistake of trying to talk or be friendly by asking the person questions. Because of poor memory, these questions will only make the person feel anxious and frustrated.
Possible environmental factors
Create a calm, relaxed, friendly environment.
Too much stimulation/activity: Maybe there is too much noise, or movement of people such as in a restaurant, or people leaving and returning to the table. Maybe the music is too loud or not according to the person’s taste and it is irritating.
Not enough stimulation: Could be a boring environment with no music or conversation
Nothing appears to be familiar: People with dementia like familiarity; it goes hand-in-hand with routine. Change the environment and the person becomes anxious.
If you are not eating in the usual place, try to keep the immediate environment as familiar as possible, for instance by using the person’s own placemat, cutlery and crockery.
Sudden noises or movements: can be disturbing.
Too many people: As with too much activity, having too much conversation around the table can be most confusing.
Room temperature uncomfortable: might be too hot or cold.
- If you are worried that the problem is physical, a speech therapist will be able to assist you as they also deal with swallowing disorders. The Department of Speech Pathology and Audiology at the University of the Witwatersrand, tel 011 717 4577, may be able to conduct an assessment and advise you.
- Phone the association of speech therapists, who will give you the names of private speech therapists in your area.
- Visit the Independent Living Centre – phone 011 482 5474 or 021 555 2881 – for useful items such as rubber handles for utensils, plate guards and non-slip place mats.
It is important that you contact the doctor or clinic if you believe that the eating problem could be the result of a physical problem
It is not always easy to understand what people with dementia are saying because they may just mumble, not speak at all, or may say things that do not make any sense to you. Sometimes they might just scream or cry. Not being understood or being able to understand someone can be very frustrating for both of you. Remember that each person with dementia is different so you will have to try and find out the best way to communicate with the person. Communication is not just talking (what you say); it is also how you say it, how you stand, what your face looks like and how you touch the person. The worse people get, the more you will have to show what you want to say. It may become so bad that they do not even remember your name or recognise who you are or who the closest member of the family is. It is therefore important that you learn as much as you can about the person from the family and/or friends. At all times, it is important to give the same attention and respect to people with dementia that you would to anyone else.
How to communicate
- The first thing is to make sure that the person can see you. Stand in front of her/him if s/he is standing, or sit in front of her/him if s/he is sitting. If there’s a hearing aid, check that it’s on and that the person’s dentures are in and fit properly.
- Touch her/him and say her/his name so that the person knows you are talking to her/him. Using people’s names may also keep their attention and help them to remember who they are.
- Make sure that you are close enough for them to see your lips move and see any movements you make with your hands.
- It is important that there are no other noises that will distract them. If you cannot turn the noise down, then take the person to another, quieter room.
- Holding the person’s hand or sitting with your arm around her/him will show that you care. Some people do not like to be touched, and may pull away. This is their choice and it must be respected.
Speaking to the person
- Speak slowly and quietly in a calm voice. Never shout or raise your voice because if you do, the person will become anxious and not hear what you are saying. It is also important to be relaxed so that you smile and do not look angry.
- People’s expressions, the way they stand or move, may also give you clues to what they are trying to say.
- Keep the sentences short so that the person can remember what you are saying.
- If you ask a question, make sure that you keep it short and ask only one question at a time, getting the answer to the first question before you ask the next one.
- You might have to repeat what you said a few times. If this is so, it might be necessary to speak more slowly and clearly or change the words you are using.
- Even if the person does not seem to understand, do not use baby talk or speak to the person as if s/he’s a child.
Listening to the person
- Listen carefully. If you do not understand, do not pretend that you do. Guess what they are saying but ask them if you are right. You can ask them to repeat what was said but do not ask them to repeat it more than three times. Rather, ask them to show you what they mean, if they can.
- If their speech has become bad and you know them well, you might be able to guess what they are trying to say or are feeling by using what you know about them. Once again, ask them if you are right. Another way is to encourage them to use body movements to help you understand.
- As the disease gets worse, people may become confused and talk about things that are not true. It is not always necessary to correct them but if you do need to, try to correct them in a nice way so that they do not feel foolish. An example would be someone saying that her mother is coming to visit and you know that her mother is dead. Rather than correcting her, think about why she would say that. Maybe she is missing her mother? Talk to her about her mother and ask what she was like. Maybe she just needs a hug.
- If people become confused in a short time, it could be that they are in pain, feeling uncomfortable, may be sick or the effects of the medicine may also make them confused. This needs to be reported to the clinic or doctor.
- If they seem sad, show them that you understand and encourage them to tell you why they feel sad.
- Laugh together about misunderstandings or mistakes and reassure them that it really isn’t a problem. Encourage them to talk because sometimes they might feel shy and stop talking.
- Another method of communicating is by using a board or piece of paper with pictures stuck on it. For example, cut out the pictures from advertising pamphlets or magazines of a toilet, shower, bath, clothes, different vegetables, meat, a knife and fork and other pictures that you feel would make communication easier. People can then point to what they want.
- A scrapbook with photographs and pictures showing the life of the person can also be a nice way of communicating as you can page through the book together and talk about the pictures.
What to consider when planning activities
- Do not try to force the person into an activity; leave it and try again later, or even the next day
- The activity must be according to the person’s needs and interests
- Give the person activities that are going to help maintain her/his skills and interests.
- Match the activities to the person’s skills
- Choose an activity that the person will succeed in so that there is no sense of failure. Activities of daily living are a good way to start.
- If you are going to use equipment, make sure that it is all there and is ready.
- Let him work at his own pace even though it may be slow. Help him only if you feel that he will not think you are treating him like a child.
- People with dementia are not able to concentrate for long periods of time. Sometimes they can only concentrate for 5 to10 minutes. If this is so, give him a task that has steps so that he can stop when he loses concentration and start again later.
- Choose adult-level activities that are simple to do. Do the activities one step at a time and make sure he knows what you want him to do and what the final aim is.
- If possible, choose a suitable environment that the person likes to be in.
- Encourage play and imagination.
- Should you have a group of people together, make sure that the group is not too big for you to manage on your own and ensure that the people in the group will get on together.
- When we look at the objective of an activity programme, it is to maintain and develop skills. Skills need to be used to be retained. The saying “If you don’t use it, you’ll lose it” is very true.
Walking, if the person is physically able. Even a walk in a wheelchair will prove to be most beneficial. Slow walks in the house are more beneficial than a quick push in a wheel chair. Walking uses up adrenaline, which is produced by stress and frustration. Thus, both the carer and the person with dementia will probably benefit. It also provides the opportunity to talk about anything that you see on the walk. If possible, a walk to the nearest coffee shop is also an idea and a pleasant outing (and a reason for the person to get out of bed and have a bath).
Dancing is good for getting rid of agitation and frustration. Exercises to music can also be fun. Should the person be disabled, he could sit in a chair and do those exercises that he can.
Painting is also good at each stage. The person does not have to paint a picture as such but can do “modern art” such as just painting colours on the paper. Let her/him choose the colours. Put the paintings up on the wall in the passage with the artist’s name on them. Ensure that the paints used are toxin-free (not poisonous), which most children’s poster paints are.
Reminders of the past. People with dementia usually find it easier to remember events that happened in the past. Remembering with them will help them take an interest and be more alert. A photo album made up by the family, which you can page through with him, will help jog his memory. So will playing music from his youth. A box containing “treasures” (old objects) that he has kept may trigger memories, even more so than pictures. It also gives the family members and friends something to do when they come to visit him.
People with dementia usually respond well to animals that they can touch and stroke. If there are no pets in the house, try to borrow one for a short while. Do ensure, if it is a dog, that it does not jump up as this might frighten or even knock him/her over.
In the early stages of dementia people want to do all the things that they did and are doing. It is very important to try to maintain their abilities. Many of the activities can be carried out on their own while you encourage and reassure them that they can ask you for help when they want it. Now and again they might need to be reminded how to do a task. Put things the person needs for such activities, where they will be seen.
- People who knit or crochet may still enjoy something simple like knitting squares or a straightforward child’s jersey. They may need your help with where they are in the pattern. Should a stitch be dropped or a mistake made and they do not notice it, you can fix it yourself or ask someone else to do it.
- Those who enjoy crossword puzzles may still be able to attempt them but may need to use a dictionary as the disease progresses. They may also have enjoyed doing cryptic crosswords but will find them more difficult and may have to resort to the more basic crosswords.
- Playing cards or scrabble can also be enjoyed. They can enjoy the card game “patience” on their own. As the disease progresses the games can become simpler, such as “pick up”. From a full pack of cards you can take out as many pairs as the person can manage, ending with only the Aces, Kings, Queens and Jacks. This game is good for both the memory and practical skills. The pack of cards is shuffled and placed face down on the table. Turns are taken to turn the cards over two at a time. The aim is to find two matching cards. Once the cards are turned over and there is no matching pair, they are turned face down in the same place, after all the players have seen them. It is then the next player’s turn. Should the cards match, they are removed from the table and the person with the most pairs at the end is the winner. If players feel threatened by a ‘win/lose’ game, do not count the cards.
- Other simple activities can be enjoyed i.e. dusting, laying the table, washing and drying dishes, cleaning up in the kitchen, baking and all the other routine tasks that we have mentioned. It does not matter if the task is not done perfectly. Do not make a big issue of praising them as this is patronising. One praises children, not adults. A ‘thank you for helping’ will be enough.
- Although people may have lost their memory for some activities, they might still remember how to do other things because that part of the brain has not been affected. An example is that they might not be able to dress themselves properly but can still play the piano or type or read a book.
- Music is important to the person with dementia. If possible, get someone to tape or bring music that the person likes. Singing, dancing or just listening to music is often enjoyed when other memories and abilities are lost.
- The radio can also be enjoyable but, for some people with dementia, the television is confusing, as they might not be able to differentiate between what is real and what is not. Some of the actions may even be frightening for them and changing the channels tends to make the confusion worse.
- The maintenance of social skills is important, as people with dementia tend to withdraw once they realise that they have a tendency to forget names or appropriate behaviour. Therefore, encouragement and subtle assistance with remembering names and behaviour would be appreciated. Sharing activities while talking helps make the atmosphere more relaxed.
- For activities to help promote self-confidence (belief in yourself) and self-esteem (pride in yourself), it is important to find something for them to do as close as possible to the work they once did or enjoyed or were good at. Everyone with dementia can do something and find some enjoyment in it.
Remember: Activities that take a short time and not too much concentration are the best. Also remember to find things for them to do that will provide stimulation but are not too difficult or have too many choices.
- As the dementia gets worse, you may find that people are still able to do the tasks that are very familiar to them and will be more interested in actually doing the task than in the end result.
- Ensure that the tasks given are broken down into small, more manageable tasks, preferably with just one step, such as sweeping.
- The five senses – smell, touch, hearing, seeing and taste – still function. The person may smell a rose and enjoy it but not be able to recognise the perfume as being that of a rose. Rubbing lotion with a perfume on the hands will stimulate the senses of smell and touch. Giving someone different items to touch will also help stimulate the sense of touch. For sight, watching fish in a fish tank or birds in an aviary can be both pleasant and soothing.
- Do not struggle to keep a person busy all the time in the later stages. Rather, give an activity spread throughout the day, to break up the day.
- A time will come when the dementia becomes more severe and the person will not be able to concentrate. Should the person lapse into unconsciousness, the only activity at this stage that will benefit both of you is touch, like just holding hands and stroking her/his skin.
Tips for planning activities:
- Have some old and new activities
- In the morning do the activities that need thinking
- In the afternoon do the more physical activities to decrease the person’s restlessness.
- Use themes that can be repeated e.g. cooking, flower arranging, gardening
- If you are having a group of people each day of the week, choose activities that a few people will enjoy
- Introduce a mixture of parties and events such as sing-alongs
- Celebrate local traditions, parties and holidays.