Activities of Daily Living: What Family Caregivers Need to Know

Mary’s day begins with a familiar routine—she wakes up, turns off her alarm and gets out of bed. She takes a shower, washes and dries her hair, applies deodorant, brushes her teeth and gets dressed in a clean blouse and pants. Moving to the kitchen she brews a fresh cup of coffee, pours some juice and enjoys a bowl of cereal. After finishing her meal, she washes the dishes, grabs her keys and heads off to start her day. Later, when she returns home, she’ll change her clothes, prepare dinner, and maybe take a relaxing bath. As the evening winds down, she’ll brush her teeth, wash her face, change into pajamas, set her alarm and get into bed for the night.

Mary is performing her ADLs and IADLs.

Dementia caregivers would refer to Mary’s actions as ADLs (activities of daily living) and IADLs (instrumental activities of daily living). ADLs are the rote tasks most of us perform every day almost without thinking. IADLs involve more complex tasks beyond basic self-care.

For most of us, getting up, using the restroom, calling a friend, buying groceries, cooking meals, and managing our daily lives is something we take for granted. For individuals with dementia, however, IADLS and eventually ADLs will become more and more difficult to manage. At some point, even performing the basic ADLs will become impossible.

Understanding ADLS and IADLs is key to effectively navigating the stages of dementia. 

Dr Tamara Cummings is a dementia expert who works with professional caregivers and, among many other aspects of dementia, advises them on best practices used to determine how the stages of dementia impact an individual’s ability to conduct the basic ADLs. Several assessment tools are used in this process, including the Katz Scale, the Lawton-Brody Scale and the Bristol Scale. The Cleveland Clinic has also published a short description of each ADL and IADL.

First, a quick look at the IADLs.

The IADLs will be the first activities that will be impacted by dementia. As mentioned above, IADLs involve more complex cognitive skills. They include the following:

• Shopping
• Preparing meals
• Communicating with others
• Managing money
• Managing a household
• Managing health
• Managing transportation

Each of these involves a complex set of skills involving orientation of space and time, verbal abilities, organization, planning, and mobility. At some point you may notice your loved one’s bills piling up unpaid, or they are forgetting to take their medications. These early IADL signs of dementia are important to acknowledge and act upon. Early testing can help optimize your loved one’s access to tools and therapies to keep them healthy as long as possible.

The ADLs are more basic and critical to managing self-care.

At some point, your loved one may begin to find basic rote daily personal care activities more challenging to conduct. For family caregivers, this is a time when more rigorous attention and assistance will be needed.

Here are six basic ADLs to be aware of:

1. Bathing. This includes using soap, water and tools to wash oneself, as well as towels to dry the skin. It includes motor skills to stand or sit in ways that enable the cleansing of every part of the body.
   Here is an example of ADL progression with dementia:
   • Bathes regularly and independently.
   • Needs the bath drawn or shower turned on.
   • Needs supervision and verbal or visual prompting.
   • Totally dependent, needs supervision and assistance.
     • Bathing is considered the most complex of the basic ADLs as it requires motor ability as well as cognition. Look for signs that your loved one is not properly cleaning themself or brushing their teeth. Initially, they may need help to be more organized. At some point you will need to assist or have a caregiver come in to help.
2. Personal hygiene and grooming. This includes brushing teeth, putting on deodorant, washing, drying and styling hair, and using clippers for grooming.
   Here is an example of an ADL progression with dementia:Is able to clean teeth/dentures regularly by themself.
   • Can clean teeth/dentures if given appropriate items.
   • Requires some assistance and cues.
   • Full assistance needed. 
     • You may start to notice that your loved one’s hair is unwashed or not properly combed, or that they’re neglecting to brush their teeth or dentures. This could be a sign that they’re having difficulty using their hygiene supplies or remembering to follow their routine. When this happens, it’s important to gently ask if they need any assistance or if they’re experiencing any challenges.
3. Using the bathroom. This includes finding the bathroom, positioning themselves on the toilet, controlling the emptying of the bladder or bowel, and using toilet paper.
   Here is an example of an ADL progression with dementia:
   • Uses the toilet correctly and as needed.
   • Requires reminders to use the bathroom.
   • Needs to be taken to the toilet and assisted.
   • Loses either bladder or bowel control.
   • Loses both bladder and bowel.
     • As your loved one’s disease progresses, they will require more frequent reminders to use the toilet. Over time, they may need to go immediately after meals, and eventually, the use of adult briefs may become necessary. Ultimately, incontinence will occur, requiring additional support and care to maintain their comfort and dignity.
4. Dressing. This includes getting clothes out of the closet or drawer, putting them on correctly, using snaps, zippers or buttons.
   Here is an example of the ADL progression with dementia:
   • Selects appropriate clothing and dresses self.
   • Needs assistance selecting cloths.
   • Puts clothes on in the wrong order, or back to front or puts on soiled clothing.
   • Is unable to dress self, but moves limbs to assist.
   • Requires total dressing, unable to assist.
     • Pay attention to your loved one’s clothing—Is it clean and appropriate for the day? Offering gentle reminders and helping with laundry can make a big difference. Ensure their clothing is easy to put on and take off. Provide two options for them to choose from. Consider organizing simple outfit combinations in an accessible place.
     • As the disease progresses, the focus should be on maintaining their independence as much as possible. A mismatched outfit or a missed button isn’t what matters—what’s truly important is celebrating that they dressed themselves. Encouraging their autonomy helps preserve their dignity and confidence.
5. Eating and drinking. This involves using the proper utensils or glasses, finding the food on the plate and bringing the food or drink to the mouth. Includes the ability to chew and swallow.
   Here is an example of an ADL progression with dementia:
   • Drinks or eats appropriately using correct cutlery.
   • Can drink or eat with aids (e.g. spoon for food).
   • Uses fingers to eat.
   • Needs assistance with eating.  
     • Make sure that your loved one’s utensils are easy to use. Cut up food into small pieces and consider introducing more finger foods that are easier to manipulate.
6. Mobility. This includes moving from one area to another to complete a daily activity. For example, getting from the bed to the bathroom or from a chair to the kitchen.
   Here is an example of an ADL progression with dementia:
   • Can walk and get in/out of a chair unaided.
   • Can walk, but uses furniture or a person’s arm for support.
   • Can get into a chair but needs assistance to get out.
   • Can walk with a walker or cane.
   • Cannot walk and needs help getting in and out of chair.
   • Totally dependent for all mobility.
     • It is important to note your loved one’s mobility issues and make sure that they have the proper mobility aids to ensure their safety. Regular exercise and physical therapy can help.

Understanding IADLs and ADLs will help you meet your loved one’s needs more effectively.

Family caregivers of loved ones with dementia will need to understand what ADLs are, how they are impacted by dementia, and how they will need to assist their loved one with their ADLs in the months to come.

We urge you to watch Dr. Tam’s webinar which outlines in detail all the ADLs and the changes associated with the progression of dementia. She has many tips to help caregivers as well.

Feel free to reach out to any of our Anthem Memory Care communities. We will be happy to answer your questions about ADLs and other challenges that you may be experiencing as you strive to help your loved one live their best life going forward. We are always here to help.