Helping with Activities of Daily Living

Activities of Daily Living (ADL) are the activities we perform for self-care. We can look at them as 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

For people living with their families (a typical case in India), often the instrumental ADL are shared with other family members, and caregiver support in these is not considered support by most people. However, all support provided takes time and energy. The inability of the patient to do things independently means the caregivers have to be present to support the patients during the activities, and slowly, over time, increase the support they provide.

We need to remain alert on how well patients perform the ADLs, and to support them as their ability deteriorates. Our aim, as caregivers, is to provide just the right amount of assistance to the patients so that they remain independent to the extent they can but do not get frustrated or face undue risks. Over time, patients need more help because their abilities keep reducing.

On this page

• Assistance required increases over time
• How to assist the patient
• Establish a daily routine and a friendly environment
• Tips for specific activities of daily living
• See also…

Assistance required increases over time

Patients need help with various activities because they are unable to remember how to do them, and their coordination is poor. They are also unable to understand instructions when someone tries to help them. As dementia is a progressive disorder, patients need more assistance as their condition worsens.

An example of how assistance may progress

• In the beginning, a patient may only need to be reminded to have her bath.
• After a while, caregivers may also need to be around in case the patient has problems, and just to check that the patient is soaping and rinsing adequately and remind them if not so.
• Later, the patient 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) .
• Patients may then start needing help for some of the tasks, such as applying soap on the back, or washing the toes, or shampooing the hair. Help may be given by guiding the wrist of the patient, or holding the elbow to guide the arm. Patients often are able to do the task if we help them start it.
• We may have to start doing some trickier tasks for the patient.
• After some days, the caregiver may find the patient looking at the soap or towel in a puzzled way. The amount of help needs to go up another notch now. The caregiver may then need to actually apply the soap, rub the skin, rinse the soap, towel the patient, and help them wear clothes.
• When the patient gets bed-ridden, a bed-bath has to be given. By now the patient is quite passive for most of the activity.

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How to assist a patient

Caregivers will observe that patients face several problems while trying to do a task. For example, patients may understand what they are supposed to be doing, They may not understand instructions, or forget them midway of the task. They stop recognizing objects or knowing how to handle them. Coordination is poor. When they struggle to do something, they may get frustrated. Caregivers who are trying to help them may find themselves desperately explaining what needs to be done and why it is important, and get disheartened when the patient looks blankly at them.

To help patients with their activities

• Plan what needs to be done to match the ability of the patient
• Prepare for the activity before involving the patient
• Split the activity into tasks the patient 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 patient 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 patient and get them started
• Keep assisting as needed
• Thank the patient, or express appreciation when something is done (even if it is not perfect)
• Do not hurry the patient
• Do not point out mistakes or feel any resentment if the patient is slow and clumsy and makes mistakes
• Remain calm, pleasant, and helpful
• Do not let the patient feel frustrated or tired

Sometimes, patients will not be able to do a task. In such a case, evaluate whether the task is necessary. If not, drop it. If necessary, resume it after a while, and assist the patient more so that the task is completed.

It may not be obvious, but it takes less time to make a dementia patient do something if we do it slowly.

If we speak rapidly, tell the patient to hurry, and insist that something is urgent, the patient gets confused and frightened. That makes him/ her freeze or get agitated.

We must observe the patient’s response. If the patient is not understanding us, we have to accordingly adjust our way of talking and helping. An example is presented below (If the video player does not load, you can view it directly on Youtube by clicking here.

It is always more pleasant to assist the patient with an activity if we view it as something nice we are doing together, than as an unpleasant burden. Think of how some mothers enjoy bathing their children, instead of viewing it as a chore, and how this makes them happier persons as they massage the infant’s limbs.

Some general tips on how to help with activities are:

When you ask the patient to do something and the patient looks confused or does not act

Use simple sentences, speak slowly and clearly, and give the patient 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. [See also: Communication]

Patient does not recognize an object

Make gestures to indiciate 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 patient to use multiple senses to recognize the object (touch, smell)

Patient 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 patient start an activity by actually helping them with the first few steps. While guiding a patient for a task, support the patient such that the patient can move his/ her body in a normal way. Old motor habits will act as a reminder to the patient, who will now be able to continue with the task.

For example, make the patient hold the toothbrush, then guide his/ her hand to the mouth and help the patient move his/ her hand up and down in a brushing movement; this may remind him/ her what brushing teeth is, and the patient may start brushing without assistance.

Poor coordination

As coordination deteriorates, simplify tasks to keep them within the patient’s ability. For example, if the patient can no longer wear a saree, switch her to a nightgown

Special aids are available to make some activities easier for patients, such as mugs with two handles instead of one. Note, however, that patients may not be able to use something very different from what they are used to, because they find learning new things difficult.

Consider changing the environment around the patients to make life simpler for them

Overall, keep changing expectations realistically, while also helping patients remain as active and independent as possible

Patient does not understand why an activity needs to be done, AND Patient does not understand the impact of not doing the activity

It is pointless to burden patients with explanations on “why” something must be done.

For example, telling a patient that not brushing teeth will lead to tooth decay will only confuse the patient. The patient faces enough problems doing a task; we should not burden the patient with reasons to understand.

If the patient 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 patient finds it unpleasant and change that
• Give a gap, and try after some time

Patient responds emotionally when unable to do something

A frustrated patient is more likely to face problems with a task

Caregivers have to  adjust the level of the task to match what the patient can attempt without frustration. A successful accomplishment of the task can really make the patients feel happy (though they will not remember that, too)

Caregivers must be especially careful not to feel any irritation or impatience, as patients pick up non-verbal cues very fast, and as they do not understand why a caregiver may be upset, they get puzzled/ upset

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Establish a Daily Routine and a friendly environment

To a dementia patient, every task could be a source of stress if it seems beyond their ability. An average day, therefore, is a series of stressful tasks, and 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 patient seems comfortable with it. Necessary tasks are all fitted into this routine so that the patient’s day is regular and predictable, and the patient 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 patient needs to be relaxed and friendly. This means, the house is adjusted taking the patient’s needs and abilities into account (this may need review as the patient’s dementia worsens). Also, the patient should have access to whatever is needed to perform activities easily. There should be enough things to keep the patient oriented about where he/ she is, and what the time is. Also, depending on the patient’s likes and dislikes, various other means of keeping the patient comfortable and relaxed should be adopted. This could include pictures of happy days, or incense, or music, if these are helpful to the patient. (see Improving the patient’s quality of life)

Often, caregivers do not spend enough time making the environment comfortable because they are already having enough work and problems handling care. But even a few appropriate adjustments to the home can drastically improve the patient’s emotional state, and consequently, the patient’s ability to understand and do things.

All of us work better when we are relaxed and happy and surrounded by things we like. So do the patients.

Tips for specific activities

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, we shouldn’t think only of how to get the task accomplished, but also whether we can make it more pleasant for ourselves and the patient. That will change the activity from a chore to something we may enjoy.

Bathing:

• Patients often misjudge the temperature of the water, and may end up bathing with very hot or very cold water if not helped.
• A bathroom can be very unsafe for a patient if left alone, so stay with the patient. Patients may feel embarrassed or angry at the presence of a caregiver. Handing them the soap and then turning the face away may give them back their sense of privacy.
• A thin towel can be used to cover the torso/ private parts while the caregiver soaps the rest of the body.
• Patients 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 and 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 more comfort. The sound of water will also be helpful in orienting them to using a bathroom.
• A bath stool may be needed so that the patient 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 patient for injuries and sores.

Dental care

• You may need to help the patient brush properly.
• Denture cleaning will probably have to be done by the caregiver.
• You may also, in later stages, have to assist the patient put in and remove the dentures; dentures should fit well, or the patient will get sores in the mouth.

Grooming

• Patients may cut themselves while shaving with an ordinary razor, and therefore switched to electric razors. After some time, caregivers will need to take this activity over.
• Combing hair is another activity the caregiver may need to take over.
• Nail cutting and filing require fine coordination, and will need to be taken over.
• Even if the patients are unable to use face creams and groom themselves, they like to look neat and presentable, and the caregiver needs to take over these tasks as the patient’s inability makes them too difficult to be done independently.

Dressing

• Too many clothes in the wardrobe may be confusing for the patient. 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 patient to wear, lay them out in the sequence in which they have to be worn.
• Make sure clothes are not too long, so that patients do 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.

Toileting.

• Incontinence occurs for many reasons, some of which are that the patient is not able to reach the bathroom in time, or forgets where the bathroom is.  Use signage to point the way, have nightlights, have grab rails that the patient 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 patient 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 the experience of sitting on the toilet seat less frightening for the patient.
• Watch the patient to ensure proper wiping, and proper washing of hands.
• For visits outside, diapers may be a good option. Even patients, who could be tense about finding a suitable bathroom outside, may easily agree to using diapers for outside visits (such as to the doctor). Patients will need assistance in wearing and removing diapers.

Eating

• Patients may forget to eat if family members have gone out and left the food on the table for them. Someone may need to ensure that the patients eat.
• Eating becomes messier over time, and patients who used to use a spoon may switch to eating with hand. They may have problems handling larger pieces, and food may need to be cut down in smaller sizes they can handle.
• Patients 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 even eat the pickles separately. This is because they find it a problem to handle multiple items.
• Caregivers may need to mix food and give it to them, or to make combined dishes like pulao, khichdi, bisi bele bath, and curd rice.
• Denture fitment becomes bad. The patient 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 patient needs to take a serving or so of a balanced-diet food like Ensure.

Drinking water

• Sometimes, patients, in order to avoid repeated trips to the bathroom, reduce their water intake.
• They may also forget to drink water.
• Caregivers need to make sure that patients are drinking enough water.
• Doctors may also ask patients to include electrolyte drinks in the daily routine, if the patient is showing an electrolyte imbalance.

Cooking

• Cooking can be very unsafe once coordination is poor, as the patient may let gas escape, or leave a burner on. Loose clothing may get caught in fire.
• If the patient is continuing cooking, do not leave the patient alone in the kitchen. Over time, take over cooking.
• Patients (especially those who were ardent cooks 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.

Shopping

Once patients start getting confused about their surroundings and cannot count properly, it is unwise to let them go shopping alone. But patients can still enjoy some sense of independence through shopping, if possible. For this:

• Accompany patients for shopping.
• If they want to carry a purse, make sure there is not too much money in it.
• Go to shops that the patient used to visit before the onset of dementia, so that the patient is familiar with them, and shopkeepers are also more considerate.
• Go at times when there is no rush.
• Let patients select items from the shopping list. Try to keep it a simple list, and help the patients locate the items.
• Stay with the patient, but let them handle as much as they can.
• When shopping gets frustrating, and you stop taking them out to shops,
  • you can still involve the patients in making shopping lists and in sorting items that you have bought
  • you can still drive the patient around for window shopping, or take the patient to a park where you can sit on a bench and watch shoppers.

Taking medication

In the beginning, patients 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 that patients continue taking their medicines as prescribed. Forgetting to take medication is a common problem. Patients 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 caregivers insist, patients sometimes hide the medicine away under the mattress or pretend to swallow it and then spit it out. It is good to be alert on this, and if necessary, supervise the patient to ensure that the medicines are taken as prescribed.

In later stages, as swallowing becomes difficult, doctors should be asked to switch prescriptions to medicines that can be crushed and given, or for syrups.

Exercise

• Some amount of daily exercise is desirable. Walking is a good exercise. Over time, patients become unsteady, and grab rails may need to be installed at strategic places
• Range of motion exercises will keep the patient flexible and mobile longer

Other activities

• Reading will become increasingly difficult for the patient. Switch to books with larger print, or books with pictures. Consider getting tapes of books. It can be very fulfilling to read to a patient, and this can be an activity the caregiver and patient 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 patient’s signature is critical. However, try to make the patient practice his/ her signature every day. There will be days when the patient is not able to remember the signature, too, and after a while, despite daily practice, the patient will stop signing
• Arithmetic gets tricky for the patient, and after a while, even simple counting is a problem. This is often distressing for the patient. Sometimes, games like Snakes and Ladders, Ludo, etc., help boost the patient’s confidence
• Outings with patients can be a welcome change, but could also be a source of stress for the patient. 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 the patient, who 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 patient liked before getting dementia–if the patient was always an introvert, an outing now is very likely to be stressful. But a patient who was socially active and outgoing may still enjoy some outings. Watching the patient’s response on such outings may help decide whether the patient is relaxed or tense, and what future outings should be like.
• Managing money. Patients do not have a good sense of judgment of money and what its value is. They do not understand how different ten rupees are from a thousand, and 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 patient does not have money or jewellery lying around in the room and is therefore not worth attacking.

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See also….

Caregiver resources in India and Other dementia/ caregiving resources:

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. The following are particularly helpful (though they will need to be adapted to the Indian way of life):

• Tips to meet daily challenges of dementia care
• Caring for Alzheimer’s: Daily Care
• Caring for a Person with Alzheimer’s Disease

Books and DVDs: While most books and DVDs contain some tips on daily care, the book, The 36-hour day, has a very useful chapter on problems arising in daily care. The suggestions may need to be interpreted in the Indian context.

Another specially useful resource is The Educated Caregiver video series, which can help a caregiver understand how to help in some activities, especially in late-stage dementia.

Some relevant searches on this site: “activities of daily life”

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