What caregivers can do: Notice when the person with dementia is having difficulty doing something. Help with the tasks in ways that lets the person remain as independent as possible. Keep changing your way of assisting to match the person’s reducing abilities. Keep the person safe.
Helping with tasks is an essential part of caregiving. If you provide this help effectively and if the persons with dementia feel capable and yet supported, they feel better about themselves. This reduces chances of their getting angry or withdrawing.
- Activities of daily living (ADL).
- Assistance required increases over time.
- How to assist someone with dementia.
- Establish a daily routine and a friendly environment.
- Actions for maintaining general health (food, exercise).
- Tips for specific activities of daily living.
- See also….
There are many activities that all of us do as part of our daily tasks. Persons with dementia start facing problems while doing this, and so they have to be helped.
The term Activities of Daily Living (ADL) is used for the activities that are performed for self-care. This term is often used when discussing how to help persons with dementia. ADLs are divided in two groups:
- Personal activities of daily living (PADL), such as washing, dressing, grooming, toileting, and eating
- Instrumental activities of daily living (IADL), such as cooking, shopping, laundry, and household finances
Persons with dementia who are living alone have to handle all their personal activities and their instrumental activities. Those who cannot handle the ADLS themselves may have to move to an assisted living or move in with other family members. In India, elders usually don’t live alone, so when an elder gets dementia, the family just keeps increasing their support depending on how much the persons’s abilities reduce.
You have to remain alert on the difficulties persons with dementia face while doing the daily tasks. Be especially careful about their personal activities, because problems in these may not be obvious. A person may not be taking bath properly, for example. But you may not know this unless you are alert. You will then need to help as required.
In India, common family work like cooking and shopping (the instrumental ADLs) are usually shared between family members. The person with dementtia may be doing some of these. But once family members notice the person having a problem, they usually help or take over these tasks. For example, if an elderly lady cannot cook like she used to, her daughter-in-law may take over. This is considered normal in India even though the additional work may need more time and energy. The main thing here is realizing that the person with dementia can no longer do these shared activities safely or well.
Persons with dementia need help with various activities for many reasons. They may not remember how to do them, they may have movement disorders and poor coordination, they may have lost interest in doing things, or may not understand why something needs to be done. They may not be able to understand instructions when someone tries to help them. As dementia is a progressive disorder, they need more assistance as their condition worsens.
An example of how assistance may progress
- In the beginning, someone with dementia may only need to be reminded to have her bath.
- After a while, you may also need to be around in case the person has problems. You may just make sure that the person is soaping and rinsing adequately. If not, you may prompt them to do so.
- Later, the person may need to be reminded of specific tasks in a bath (like soap yourself, rinse yourself) in the right sequence. The objects needed for the bath may need to be prepared for them (bucket has water of the right temperature, mug is accessible, the towel and clothes are on the towel bar, the soap dish has soap) .
- After some time, the person may need help for some actions such as applying soap on the back, or washing the toes, or shampooing the hair. Help may be given by guiding the person’s wrist or holding the elbow to guide the arm. They often are able to do the task if you help them start the task.
- After some more time, you may have to do some trickier tasks for the person.
- After some days, you may find the person looking at the soap or towel in a puzzled way. The amount of help needs goes up again. You may have to apply the soap, rub the skin, rinse the soap, and towel the person.
- The person may also lose interest in doing anything
- When the person gets bed-ridden, a bed-bath has to be given. By now the person is quite passive for most of the activity.
Persons with dementia face several problems while trying to do a task. For example, they may not understand what they have to do. They may not understand instructions, or forget them midway of the task. Their ability to stay focused or interested may be poorer. They often stop recognizing objects or knowing how to handle them. Balance and coordination may be poor, and movement may not be controlled. When they struggle to do something, they may get frustrated. When trying to help them, you may want to explain to them what needs to be done and why it is important. Then, when the person looks blankly at you, you may get disheartened.
To help persons with dementia with their activities:
- Plan what needs to be done to match the ability of the person
- Prepare for the activity before involving the person
- Split the activity into tasks the person will be able to understand, and get one task done at a time
- Explain what needs to be done in simple, easy to understand steps, leaving the person enough time to understand and do
- At each step, explain what is being done in simple words
- Avoid explanations of why the job is needed or what will happen if it is not done
- Avoid giving too many choices or asking confusing or unnecessary questions
- Use gestures and prompts to orient the person with dementia, and to make them start a task
- Keep assisting as needed
- Thank the person, or express appreciation when something is done (even if it is not perfect)
- Do not hurry the person
- Do not point out mistakes or feel any resentment if the person is slow and clumsy and makes mistakes
- Do not argue or insist that the person appreciates why the task must be done. Just stay matter-of-fact
- Remain calm, pleasant, and helpful
- Do not let the person feel frustrated or tired
Sometimes, person with dementia will not be able to do a task. In such a case, think whether the task is necessary. If not, drop it. If necessary, resume it after a while, and assist the person more, so that the task is completed.
It may not be obvious, but it takes less time to make someone with dementia do something if you do it slowly.
If you speak rapidly, tell the person to hurry, and insist that something is urgent, the person gets confused and frightened. That makes him/ her freeze or get agitated.
Observe the person’s response. If the person does not understand you, change your way of talking and helping. An example is presented below (If the video player does not load, you can view it directly on Youtube Opens in new window.
It is always more pleasant to help the person with an activity if you view it as something nice you are doing together, rather than as an unpleasant task. Think of how some mothers enjoy bathing their children, and how this makes them happy as they massage the infant’s limbs.
Some general tips on how to help with activities are:
When you ask the person to do something and the person looks confused or does not act
Use simple sentences, speak slowly and clearly, and give the person time to understand and respond. Do not give complex choices. Use eye contact, and remain calm and pleasant.
Use both verbal ways and gestures to communicate.
The person with dementia does not recognize an object
Make gestures to indicate what the use of the object is (like a gesture of brushing teeth with a toothbrush).
Use simple words to indicate both the object and what you want done. Try explanatory sentences and synonyms.
Encourage the person to use multiple senses to recognize the object (touch, smell)
The person with dementia does not know what to do with an object, or how to perform an activity
Use simple words and gestures to demonstrate what needs to be done (don’t tell them what they should not do)
Help the person start an activity by actually helping them with the first few steps. While guiding the person for a task, support the person such that the person can move his/ her body in a normal way. Old motor habits will act as a reminder to the person, who will now be able to continue with the task.
For example, make the person hold the toothbrush, then guide his/ her hand to the mouth and help the person move his/ her hand up and down in a brushing movement; this may remind him/ her what brushing teeth is, and the person may start brushing without assistance.
As coordination deteriorates, simplify tasks to keep them within the person’s ability. For example, if the person can no longer wear a saree, switch her to a nightgown
Special aids are available to make some activities easier for persons with dementia. One example is mugs with two handles instead of one. Note, however, that persons with dementia may not be able to use something very different from what they are used to. This is because they find learning new things difficult.
A useful technique to assist persons with dementia is the “hand under hand” assistance. In this, you have to place your hand under the person’s hand, and hold it, thumb to thumb. This allows you to control the movement of the person’s wrist, forearm, elbow, and shoulder, for small and big movements. While the person moves through the activity, you use the person’s skill and help the person move and use objects to perform the activity. A link to one video explaining this is given in the references below.
Consider changing the environment around the persons with dementia to make life simpler for them
Overall, keep changing expectations realistically, while also helping them remain as active and independent as possible
The person with dementia does not understand why an activity needs to be done, AND the person does not understand the impact of not doing the activity
It is pointless to burden the person with explanations on “why” something must be done.
For example, telling someone that not brushing teeth will lead to tooth decay will only confuse the person. The person faces enough problems doing a task; do not burden the person with reasons to understand.
If the person seems very reluctant to do something:
- Re-examine whether the activity really needs to be done
- Find is a simpler way of doing it
- Try to understand why the person finds it unpleasant and change that
- Give a gap, and try after some time
The person with dementia responds emotionally when unable to do something
A frustrated person is more likely to face problems with a task
Adjust the level of the task to match what the person can attempt without frustration. A successfully done task can really make the person feel happy (though they will not remember that later)
Be especially careful not to feel any irritation or impatience. Persons with dementia pick up non-verbal cues very fast, and as they may not understand why you are upset, they will get puzzled/ upset
Persons with dementia find some necessary task unpleasant/ intrusive and may agitate/ resist
Some sort of tasks are difficult to take help for. The person may feel bad about being cleaned/ bathed etc. This sometimes results in the person resisting help, even if the person cannot do the task alone. The person may even try to hit out.
Find ways to relax the persons with dementia and to make them feel comfortable.
Soft, soothing music can be helpful for many persons because such music creates a more relaxed mood, reduces agitation, and improves their cooperation.
Softly talking to them about something they are interested in may also help to relax them/ distract them from the unpleasantness of the task being done.
Be careful to remain affectionate/ neutral, with friendly facial expressions. Also, be gentle and respectful. Do not remind the person about why the task is necessary, but treat it in a matter-of-fact way, as something happening in the background.
To someone with dementia, every task could be a source of stress if it seems beyond their ability. An average day, therefore, is a series of stressful tasks. It is no wonder they get frustrated and tired.
One very helpful way of reducing their stress is establishing a regular routine for the day–doing the same things at the same time every day. This routine can be fine-tuned to ensure that the person seems comfortable with it. Necessary tasks are all fitted into this routine so that the person’s day is regular and predictable, and the person can get used to it. They need less effort to get through the day as they sort of know what to expect. They get a greater sense of comfort, and also feel more in control of their lives. The daily routine should only be disrupted if it is very necessary.
In addition to a daily routine, the environment around the person needs to be relaxed and friendly. This means, the house is adjusted according to the needs and abilities of the person (This may need review as the dementia worsens). Also, the person should have access to whatever is needed to perform activities easily. There should be enough things to keep the person oriented about place and time. Also, depending on the person’s likes and dislikes, various means of keeping the person comfortable and relaxed should be adopted. This could include pictures of happy days, or incense, or music, if these are helpful to the person.
Often, families do not think of making the environment comfortable because the care work takes up a lot of time and energy. But even a few appropriate adjustments to the home can drastically improve the person’s emotional state. Consequently, the person’s ability to understand and do things are better. Clutter, for example, can cause confusion and agitation. On the other hand, rearranging objects can make the person’s tasks easier. This may include ensuring that the path the person takes for normal activities is clear and well-lit, that there are supports for walking if needed, that objects are available where they will be needed, and unnecessary objects are removed, and that objects that can confuse or frighten the person (such as dark rugs, frightening pictures, etc.) are removed.
Everyone works better when relaxed and happy and surrounded by things they like. So do persons with dementia.
Problems may arise from inactivity and poor health/ nutrition. It is necessary that families take conscious steps to help the person with dementia remain active and healthy. Often, busy trying to get all the daily tasks done every day, families forget to include health and fitness related actions in the person’s daily routine. Detailed discussions on areas to consider for this are listed in the “See also” section (external links) below.
These are some tips for specific activities. A good way to get tips is to talk to other caregivers and share what works and what does not. When thinking of how to do something, don’t think only of how to get the task accomplished. Think whether you can make it more pleasant for yourself and the person with dementia. That will change the activity from a chore to something you may enjoy.
- Persons with dementia may misjudge the temperature of the water. They may end up bathing with very hot or very cold water if not helped.
- A bathroom can be very unsafe for a person if left alone, so stay with the person. Sometimes, a person may feel embarrassed or angry at your presence. Find ways to let the person retain a sense of privacy when helping the person. For example, give the person the soap and then turn your face away when the person applies soap.
- A thin towel can be used to cover the torso/ private parts while you soap the rest of the body.
- Persons who seem reluctant to enter the bathroom may no longer remember what a bathroom is used for. They may have spent their childhood in villages and bathed near a well or in a river. They could have switched back to childhood memories. They may need to be told that the bathroom is for bathing. Familiar smells of a favourite soap and hair oil may give them comfort. The sound of water is usually helpful in orienting someone for using a bathroom.
- A bath stool may be needed so that the person sits down comfortably for the bath. Grab rails near the bath stool may also be needed.
- Be careful to dry in the folds, such as under the breast. Also, dry areas like between the toes.
- If bathing is tiring and difficult, reduce frequency to what is indicated by the weather and the needs of personal hygiene. Or give partial baths. A daily full bath may not be needed.
- Use the bath time to check the person for injuries and sores.
- You may need to help the person brush properly.
- Denture cleaning will probably have to be done by you.
- You may also, in later stages, have to assist the person put in and remove the dentures; dentures should fit well, or the person will get sores in the mouth.
- Persons with dementia may cut themselves while shaving with an ordinary razor. Switch to electric razors. After some time, you will need to take this activity over.
- Combing hair is another activity you may need to take over.
- Nail cutting and filing require fine coordination, and will need to be taken over.
- Even if unable to use face creams and groom themselves, the person would like to look neat and presentable. Take over these tasks as the person’s inability increases.
- Too many clothes in the wardrobe may be confusing for the person. Reduce the choices by removing extra clothes. Retain only a few comfortable, loose clothes.
- Clothing may need to be simplified as coordination reduces.
- When laying out the clothes for the person to wear, lay them out in the sequence in which they have to be worn.
- Make sure clothes are not too long, so that person does not trip.
- Switch to clothes without zippers or elaborate buttoning.
- Instead of pajamas/ salwars with strings, use them with elastic so that they can be just pulled on or taken off.
- Use shoes with velcro straps instead of shoes with laces.
- Replace sari with nightgown.
- Incontinence occurs for many reasons. These include the person not being able to reach the bathroom in time, or forgetting where the bathroom is. A room with an attached bathroom may help, if possible. Use signage to point the way, have nightlights (and emergency lights), have grab rails that the person can use while reaching the bathroom, and have clothing that can be taken off easily.
- Timed visits to the bathroom often reduce accidents.
- Watch out for signs of constipation and dehydration (note colour of urine) and change diet and water intake accordingly.
- If the person shows signs of pain while passing urine or during bowel movements, consult with the doctor.
- Be ready for accidents, and set up the house for quick cleaning after such accidents.
- Persons who have been used to different styles of toilets in their childhood may forget what a commode is for, and may need to be reminded.
- Grab rails or toilet seats with rails may make sitting on the toilet seat less frightening for the person.
- Watch the person to ensure proper wiping, and proper washing of hands.
- For visits outside, diapers may be a good option. Persons with dementia who are tense about finding a suitable bathroom outside may agree to using diapers for outside visits (such as to the doctor). They will need assistance in wearing and removing diapers.
- Persons with dementia may forget to eat if they are alone and the food is left on the table for them. Someone may need to ensure that the they eat.
- Eating becomes messier over time. They may stop using spoons and switch to eating with hand. They may have problems handling larger pieces. Food may have to be cut into in smaller sizes for them.
- Use plates with rims, preferably heavy plates so that they don’t move around when the person is eating from them. Use spoons with larger handles, and other cutlery that is easy to use for persons who have problems coordinating movement.
- Avoid food that is too hot (as they may burn themselves). Avoid utensils that are too hot to hold/ lift. (Thermos mugs may be suitable for serving warm/ hot liquids.
- If using water bottles, select the ones that have special provisions for easy gripping.
- Persons with dementia may not mix food while eating. They may eat all the daal/ sambhar first, and the curds, and then try to eat the rice without anything mixed. They may finish off the vegetable or curry, and then be left with the roti and nothing to eat with it. They may eat the pickles separately. This is because they find it a problem to handle multiple items.
- You may need to mix food and give it to them. Or you can make combined dishes like pulao, khichdi, bisi bele bath, and curd rice.
- Denture fitment becomes bad. The person may lose more teeth, but not be mobile or alert enough to get a new denture.
- Chewing becomes a problem over time, and food may need to be made softer, and finally, liquidised in a mixie.
- Consult doctors about diet supplements like calcium and vitamins, and also whether the person needs to take a serving or so of a balanced-diet food like Ensure.
- Sometimes, in order to avoid repeated trips to the bathroom, persons with dementia reduce their water intake.
- They may also forget to drink water.
- You need to make sure that they are drinking enough water.
- Doctors may also suggest adding electrolyte drinks to the diet if the person is showing an electrolyte imbalance.
- Cooking can be very unsafe once coordination is poor, as the person may let cooking gas escape, or leave a burner on. Loose clothing may get caught in fire.
- If the person is continuing cooking, do not leave the person alone in the kitchen. Over time, take over cooking.
- Persons with dementia (especially those who loved cooking earlier) may get up at all odd times and try to cook. If they are no longer able to cook safely, keep the kitchen locked, or switch off the gas regulator and maybe even disconnect the gas when not using the gas.
- People who liked cooking can continue to participate in activities like cleaning rice and daal (they will not do it properly, but at least they will feel good), shelling peas, and plucking methi leaves. They can even be requested to knead dough or mash boiled potatoes if you don’t find cleaning up the place later as stressful.
Once persons with dementia start getting confused about their surroundings and cannot count properly, it is unwise to let them go shopping alone. But they can still enjoy some sense of independence through shopping, if possible. For this:
- Accompany them for shopping.
- If they want to carry a purse, make sure there is not too much money in it.
- Go to shops that the person used to visit before the onset of dementia, so that the person is familiar with them, and shopkeepers are also more considerate.
- Go at times when there is no rush.
- Let the person select items from the shopping list. Try to keep it a simple list, and help the person locate the items.
- Stay with the person, but let the person handle as much as possible.
- When shopping gets frustrating, and you stop taking them out to shops,
- you can still involve the person in making shopping lists and in sorting items that you have bought
- you can still drive the person around for window shopping, or take the person to a park where you can sit on a bench and watch shoppers.
In the beginning, persons with dementia may find it problematic to keep track of their medicines. Using small labelled boxes for the medicines can help.
Soon, however, more care needs to be taken to ensure they continue taking their medicines as prescribed. Forgetting to take medication is a common problem. They cannot be depended on to take their medication as required. They may forget to do so. Even if reminded, they may not believe they need to take the medication. They may say things like, but I don’t have high BP. If you insist, they may hide the medicine away under the mattress or pretend to swallow it and then spit it out. Bbe alert on this. If necessary, supervise the person to ensure that the medicines are taken as prescribed.
In later stages, as swallowing becomes difficult, ask the doctors to switch prescriptions to medicines that can be crushed and given, or are available as syrups.
- Some amount of daily exercise is desirable. Walking is a good exercise. Over time, persons with dementia become unsteady. Grab rails may need to be installed at strategic places
- Range of motion exercises will keep the person flexible and mobile longer
- Reading will become increasingly difficult for the person with dementia. Switch to books with larger print, or books with pictures. Consider getting tapes of books. It can be very fulfilling to read to the person, and this can be an activity that you and the person with dementia do together for relaxation
- Writing is also a problem as dementia progresses. Planning for dementia should have involved reducing the number of places where the person’s signature is critical. However, try to make the person practice his/ her signature every day. There will be days when the person is not able to remember the signature, too, and after a while, despite daily practice, the person will stop signing
- Arithmetic may get tricky for the person with dementia, and after a while, even simple counting is a problem. This is often distressing for the person. Sometimes, games like Snakes and Ladders, Ludo, etc., help boost the person’s confidence
- Outings with persons with dementia can be a welcome change, but could also be a source of stress for the person. A lot of planning needs to go into an outing, as many places are not well-equipped for people who are unsteady and disoriented. A noisy or crowded place could be very tiring and unnerving for someone with dementia, who may get stressed even if there are a few guests at home. A park outing could be good, or just a drive on a nice, open road. It really depends on what the person liked before getting dementia–if the person was always an introvert, an outing now is very likely to be stressful. But someone who was socially active and outgoing may still enjoy some outings. Watching the person’s response on such outings may help decide whether the person is relaxed or tense, and what future outings should be like.
- Managing money. Persons with dementia may no longer have a good sense of judgment of money and what its value is. They may not understand how different ten rupees are from a thousand. They may make impaired judgments if they have access to money and other such valuables. It is best if only small amounts of money remain accessible to them; it is safer if everyone knows that the frail elderly person does not have money or jewellery lying around in the room and is therefore not worth attacking.
Resources/ references from Dementia Care Notes and related sites
Some relevant interviews on this site:
- A nurse shares tips to adapt the home: Keeping persons with dementia peaceful and improving their quality of life .
- Tips from a caregiver’s husband: Mistakes made, lessons learnt, tips shared .
Almost all these sites/ resources contain tools and tips for helping patients with their activities of daily living. Many sites have downloadable files with information.
Some useful external links
One particularly good site for a variety of daily care tips is the Daily living section of the Alzheimer’s Society Opens in new window, which has pages for a wide variety of daily activities, including many discussed on this page (of course, you may need to adapt them for India, but they provide a very good base). Also, check our pages on handling changed behavior: Handling Behavior Challenges and Special tips for wandering, incontinence, repetitions, sundowning, and other specific behavior changes.
The following external resources are also helpful (though they may need to be adapted to the Indian way of life):
- Tips to meet daily challenges of dementia care Opens in new window
- Caring for Alzheimer’s: Daily Care Opens in new window
- Caring for a Person with Alzheimer’s Disease Opens in new window
- Caregivers Guide to Understanding Dementia Behaviors Opens in new window
- A set of pages under the overall discussion on “Staying healthy Opens in new window” including topics like exercise, sleep, eating, mental wellbeing, etc.
One possible technique to help patients with tasks: Video demonstration of the hand-on-hand technique by Teepa Snow, dementia care and training expert Opens in new window.
Most dementia caregiving books include some coverage of how to help persons with their daily tasks. You can use the books given below as a starting point (adapt the tips to your context). You can also see our full list of suggested books at: Books on dementia and care or surf Amazon.com or Amazon.in for your specific needs.
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L Mace, Peter V Rabins. This classic, must-read book includes suggestions on handling problems that may arise during daily activities. Available as paperback and Kindle ebook.
Breaking Dementia: Finding Acceptance and Hope for This Journey by Rick Phelps, Leeanne Chames. This book is written by someone diagnosed with Early Onset AD (Rick Phelps) and a caregiver who has cared for a mother and a mother-in-law with dementia (Leeanne Chames). Both authors are also administrators of one of the largest and more effective online support forum for dementia (the Facebook group, Memory People). We read about difficulties experienced in dementia, explained by someone undergoing them, and can appreciate how relentless, overwhelming and exhausting it is to live with dementia. We also read a caregiver perspective on how to accept the situation and support the person. Written in a very honest and helpful way, this book gives a deep and realistic understanding of behaviour changes at an emotional level. Highly recommended. Available as paperback on some countries, and as a Kindle ebook in India.
The Comfort of Home: A Complete Guide for Caregivers by Maria M Myers, Paula Derr This book includes practical tips for dementia caregivers, including suggestions on setting up a daily routine and on helping persons with their daily living activities. Available on Amazon.
You can read more about these and also see all our book suggestions at: Books on dementia and care.