Activities of daily living (ADLs) are the tasks we do during our daily lives. They are usually divided into two categories: basic ADLs and instrumental ADLs. Basic ADLs are the skills needed for eating, bathing, dressing, and toileting. Instrumental ADLs are the skills needed to function within society and within the community.
In adult day programs, clients tend to need less assistance with ADLs than people in other long-term care settings, particularly with bathing, dressing, and toileting. In general, about 37% of daycare clients need help with bathing and 22% need help with eating. A little more than a quarter of participants in adult day programs need help with transfers (Singh et al., 2022).
12.1 Person-Centered Care and Assistance with ADLs
In the context of assistance with ADLs, person-centered care means that a person with dementia deserves to be treated with dignity and respect. Promoting autonomy and independence and including the person you are assisting in care and treatment decisions are key practices.
Caregivers should focus on reducing the amount of (unnecessary) help they provide. This takes practice and patience because an older adult with dementia needs plenty of time to complete their ADLs. Training, common sense, proper seating, and appropriate assistive equipment are vital and can help a person with cognitive and physical declines retain their independence as the dementia progresses.
12.2 Supporting Independence in ADLs
Dementia-friendly or dementia-capable environments help a person maintain independence in activities of daily living (Førsund et al., 2018). Assistive equipment and environmental design play an important role in supporting independence and reducing the amount of assistance required for ADLs. Equipment that is well-designed and readily available supports independence, while poorly designed equipment, cluttered hallways, improper seating, and lack of well-designed resting areas reduce independence.
12.3 Meaningful, Person-Centered Activities
Living with dementia involves enduring the loss of mental and physical abilities, which leads to difficulties in handling everyday living, maintaining meaningful activities, and taking part in social life. To maintain quality of life and reduce challenging behaviors, a person with dementia must have the opportunity to participate in activities that are adjusted to interests and to the severity of their dementia.
Meaningful activities should provide socialization, stimulation, and physical activity within the functional limits of a person’s abilities. When designing an activity, be sensitive to the cultural differences of those attending the activity. Activities should (Zeman, 2015):
- Provide mental stimulation.
- Reflect the interests of the person with dementia.
- Maintain or slow the loss of skills without requiring the person to learn new ones.
- Minimize failure.
The author’s mother helping with gardening—an activity she had done her entire life. She could no longer walk safely but was eager to help in any way she could. Source: Author.
For staff, any contact with the person who has dementia is an opportunity for positive, meaningful interaction. Reminiscing, singing old songs, talking about shared interests, encouraging the client to help with minor chores, and breaking tasks down to allow the person to complete them, can all be enjoyable and stimulating activities and should be a regular part of the day (Zeman, 2015).
12.4 How to Assess if an Activity Is Meaningful
Providing meaningful activities that are matched to the abilities and interests of individuals with dementia can lead to dramatic reductions in agitation and other challenging behaviors. In general, meaningful activities have these features (Mansbach et al., 2017):
- Active participation.
- Content is related to the interests and past roles of the participants.
- Activities meet the psychological needs of identity and belonging.
The Engagement in Meaningful Activities Survey is a useful tool for assessing if an activity is meaningful to a person for whom you are caring. The survey asks participants, “Does this activity” (Eakman, 2012, Updated 2020):
- Help me take care of myself?
- Reflect who I am as a person?
- Express my creativity?
- Provide me with a sense of accomplishment?
- Contribute to my feeling competent?
- Help other people?
- Give me pleasure?
- Give me a feeling of control?
- Have the right amount of challenge?
- Provide satisfaction?
- Help me express my personal values?
12.5 Routine and Structure in Adult Day Care
In many instances, routines and schedules are built around the needs of staff and caregivers rather than the needs of the person with dementia. This is unfortunate because consistent daily routines that align with a person’s abilities promote independence and can reduce the number and duration of challenging behaviors. The person with dementia knows what to expect while giving caregivers a benchmark for evaluating their behavior.
Although caregivers are responsible for maintaining a routine, flexibility is essential. For example, if someone does not want to participate in an activity or eat at the scheduled time, it is best to be flexible and allow the person to rest or eat later.
When developing a schedule for someone with dementia, plan carefully, allow plenty of time, and consider each person’s capabilities and preferences. Additionally:
- Continue familiar routines and schedules.
- Maintain mealtime routines.
- Maintain regular healthcare appointments.
- Note the effects of changes in routines.
- Consider issues that disrupt routines.
Daily routines, whether in a facility or in the home should always consider a person’s need and abilities. Failing to understand a person’s cognitive and physical changes is a common caregiver behavior and often leads directly to all sorts of challenging behaviors, frustration, and anger.
For example, a person who recently had a brainstem stroke is experiencing increased tone and stiffness in her legs and trunk. This means all her joints are stiff and her movements are slower that they were before the stroke—a common side-effect of this type of stroke. All her basic activities of daily living are affected—moving in bed, sit-to-stand, transfers, and gait. Caregivers can be easily frustrated if they fail to understand how this person’s abilities have changed.
Luella Wants to Brush Her Teeth
Introduction: Aligning caregiving with a person’s abilities can be difficult in older adults with dementia. Caregivers and healthcare providers must learn to identify, assess, and address the changes in a person’s abilities as cognition changes and make appropriate adjustments.
Client Information: Luella has moderate to severe dementia. She lives at home with 24-hour care and attends an adult day care program 3 times each week. Luella has always been active and eagerly exercises at the day care center. Recently, because of declining strength and balance, she has needed more assistance with basic activities. She never asks for help and, despite changes in her abilities, she tries to do everything herself.
Timeline: For Luella, doctor’s appointments have always been drama free. She used to get ready quickly and be ready to depart on time. She always, always brushed her teeth before an appointment. Recently, she has required a caregiver to stand next to her at the sink while she brushes her teeth, which takes at least 15 minutes and frustrates her daughter.
One day, her daughter was running behind and tried to get her mother to get in the car without brushing her teeth. This caused a huge argument during which her mother sat on the floor and put her feet on the door to the garage and refused to move. The solution was to help her up and stand beside her while she brushed her teeth. Once she was in the car, she turned to her daughter and said, “hurry up, we’re going to be late”.
Discussion: Luella’s daughter was having trouble with her mother’s declining abilities and thought she could talk her mother into going before she was ready. In this case, her mother’s abilities were changing but her needs were not. She had always been able to get ready for an appointment without much help while her daughter finished chores and got everything else ready to go. Eventually, her daughter realized that it was taking much, much longer for her mother to get ready for an appointment and she started preparing things more than an hour ahead of time.
Client Perspective: Luella was perfectly happy with the outcome of this recent disagreement. In fact, she didn’t even remember anything had happened. She got what she wanted and got to her doctor’s appointment with minutes to spare. Luella didn’t have much of an idea of how much pressure was on her daughter to keep things running smoothly. She told her daughter, “You worry too much.”