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Helping with Activities of Daily Living

The person with dementia finds it increasingly difficult to handle tasks for normal, daily living.

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)

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:

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.

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Assistance required increases over time

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

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How to assist someone with dementia

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:

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 [9].

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 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 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.

Poor coordination

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:

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.

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Establish a Daily Routine and a friendly environment

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.

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Actions for maintaining general health (food, exercise)

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.

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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, 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.

Bathing:

Dental care

Grooming

Dressing

Toileting.

Eating

Drinking water

Cooking

Shopping

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:

Taking medication

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.

Exercise

Other activities

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See also….

Resources/ references from Dementia Care Notes and related sites

Some relevant interviews on this site:

Caregiver resources in India [15] and Other dementia/ caregiving resources [16]:

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 [17], 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 [18] and Special tips for wandering, incontinence, repetitions, sundowning, and other specific behavior changes [19].

The following external resources are also helpful (though they may need to be adapted to the Indian way of life):

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 [25].

The Dementia India Report 2010 Opens in new window [26] includes data on how the care work increases as dementia gets worse. An excerpt: The severity of dementia is the strongest predictor of hours of PADL support, which increased from an average of 2.3 hours for mild dementia to 7.1 hours for severe dementia.

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 [27] or surf Amazon.com Opens in new window [28] or Amazon.in Opens in new window [29] for your specific needs.

36 hr book cover and link [30]
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Nancy L Mace, Peter V Rabins): This classic, must-read book includes suggestions on handling problems that may arise during daily activities. For the paperback version, see Amazon.comOpens in new window [31] (6th ed), or, if you are in India, see Amazon.inOpens in new window [32] (6th ed) or FlipkartOpens in new window [33] (5th ed) or any other vendor.

This book is also available as a Kindle eBook. Read the book or sample right away on your laptop, tablet, or Kindle by checking it (6th ed) at Amazon.comOpens in new window [34] or Amazon.inOpens in new window [35].

comfort of home book cover and link [36]
The Comfort of Home: A Complete Guide for Caregivers (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. For the paperback version, see Amazon.comOpens in new window [36], or, if you are in India, see Amazon.inOpens in new window [37] or FlipkartOpens in new window [38] or any other vendor.

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.

(You can also see our full books/ DVD suggestions at: Books and DVDs [27]

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Page/ post last updated on: September 1, 2018

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