The “small things” of care are particularly important in ensuring that care is genuinely supportive of the individual, and enhances that person’s autonomy and well-being. The humanity with which assistance for everyday living is offered, especially help with eating and intimate care, is as crucial in helping the person retain self-esteem and dignity as the manner and tone in which a person is addressed; the care taken to ensure that they participate as much as they can or wish in any decision about their day-to-day life; the trouble taken about appropriate and attractive food and environments; and access to meaningful activity.
Nuffield Council on Bioethics
Activities of daily living (ADLs) are the tasks we do in our daily lives. Because ADL skills tend to worsen as dementia progresses, caregiver involvement naturally changes over time. ADLs are generally divided into two categories: basic ADLs and instrumental ADLs.
Basics ADLs are the skills needed to take care of personal needs such as eating, bathing, dressing, and toileting. Instrumental ADLs are the skills needed to function within society and within the community. The skills needed for ADLs decrease as dementia progresses.
When a person is no longer able to perform basic math calculations, a caregiver or financial advisor must oversee finances. When insight becomes limited and memory is significantly compromised, medical decision making and medication management will also shift to the hands of a caregiver. Pursuit of guardianship and capacity evaluations are not uncommon, especially when estate and legal issues need to be addressed (DeFina et al., 2013). Although there is often no clear demarcation between mild, moderate, and severe dementia, caregiver responsibilities increase as independence decreases.
When assisting someone with ADLs, encourage people to express their wishes. “No, I don’t want to!” means just that, even when spoken by someone with dementia. Keep these techniques in mind:
Keep in mind that in different cultures, nonverbal gestures and eye contact may have different meanings. Western Europeans and North Americans of European ancestry generally associate direct eye contact with attentiveness and respect. In many Native American cultures, although eye contact is expected during the initial greeting, prolonged eye contact is considered disrespectful. Many consider it a sign of respect to keep their gaze turned down.
In Japanese culture, by contrast, people are taught not to maintain eye contact with others because too much eye contact is often considered disrespectful. Japanese children are taught to look at others’ necks because this way, the others’ eyes still fall into their peripheral vision (Uono & Hietanen, 2015).
In the early stage of dementia most people are independent with basic ADLs. Most people with mild dementia will begin to need help with some instrumental ADLs—especially complex tasks requiring multiple steps or extensive planning. Basic ADLs such as eating, dressing, and bathing are likely still independent.
At this stage, a person will instinctively try to cover up confusion by turning to others for help with simple tasks. This is a natural response and denial, anger, and excuses are common defense mechanisms. There may be some loss of interest in hobbies and activities. Mood changes, such as depression and anxiety, can occur. Learning new tasks may be difficult and complex tasks may be left uncompleted. Faulty judgment and mild changes in personality become obvious to caregivers.
Those with mild dementia may need very little help, if any with basic ADLs. Nevertheless, it is good to keep certain core principles in mind:
*Be aware that some medications cause constipation while others increase or decrease the urge to urinate.
As dementia progresses to the moderate stage, instrumental ADLs such as work, medication management, and keeping track of personal finances become difficult or impossible. A person may begin to need help with basic daily activities. Mobility is often still good and, if so, safety becomes a concern for caregivers. Because of this, family caregiver responsibilities increase, causing stress, anxiety, and worry among family members and caregivers. In the moderate phase:
Keeping in mind that there is no clear delineation between mild and moderate dementia, it will become clear to caregivers that a person in the moderate stage of dementia will need more help with ADLs, especially instrumental ADLs. There is variability at this stage, depending on a person’s physical capabilities and the type of dementia, but for some, walking, transferring, bed mobility, and basic ADLs may remain relatively independent. For others, especially those with physical limitations, more help may be required. In the moderate stage of dementia:
As dementia enters the severe stage, independence is gradually lost and caregivers must provide consistent direct care with most if not all ADLs. At this stage a person must be directly assisted with basic ADLs such as eating, bathing, transfers, and walking. Control of bodily functions may be inconsistent, requiring direct help with bathing and toileting. Family members may find it impossible to continue to provide care and may be forced to move their loved one to an assisted living or skilled nursing facility.
Safety issues and wandering require constant monitoring. If the person with dementia is still at home, tired and overworked caregivers must provide even more support with ADLs to maintain a safe environment. If in a skilled nursing or assisted living situation, the facility must provide enough staffing and equipment to create a safe environment.
As severe dementia progresses, balance and safety awareness go from bad to worse, requiring significant direct help with transfers and mobility. To prevent injuries from falls, it may be necessary to use bed and chair alarms or provide a one-on-one caregiver. Caregivers and healthcare providers must make difficult decisions to prevent injury and to provide a safe environment.
Once a person reaches the severe stage of dementia, the more complex instrumental ADLs have likely been completely taken over by a family member or caregiver. Basic ADLs will require a great deal of assistance to complete, depending on the person’s physical capabilities. A person with severe dementia may still be able to walk independently. They may be independent or nearly so with bed mobility and transfers. Anything that requires planning, sequencing, or judgment will be severely impaired at this stage so close assistance will be needed for dressing, bathing, meal preparation, grooming, and toileting. If mobility is compromised, close assistance will be needed for all ADLs. In the severe stage of dementia:
*Consider bathing habits (time of day, bath or shower); consider bed bath if more acceptable to resident.
**Goal is for resident to be clean and comfortable. Shower or tub bath is not necessary—a sponge bath may suffice.
Mrs. Johnson has moderate dementia due to Alzheimer’s disease and lives at home with 24-hour care from family members and a caregiver. She is often incontinent of urine at night and has been wearing a diaper for the last year when she is in bed. The caregivers usually have to change her diaper once or twice each night and occasionally need to change wet sheets if Mrs. Johnson takes her diaper off at night. They keep a spare set of sheets and a pad handy just in case.
Antecedent: One night Mrs. Johnson’s daughter is helping her mom get ready for bed. She bends over to help her mother put on the diaper but her mother gets very angry and shouts, “I despise that thing, I won’t wear it” and pushes it away. Her daughter explains the need to wear the diaper at night to keep from peeing in her bed. She also gets angry at her mother, thinking of her own fatigue and lost sleep when faced with the prospect of stripping a wet bed in the middle of the night. Mrs. Johnson again refuses the diaper and climbs into bed.
Behavior: Mrs. Johnson’s daughter is confused—her mother has never refused the diaper before. She is worried that her mother’s dementia is getting worse. She checks back in about an hour and slips a diaper onto Mrs. Johnson while she is sleeping. A little while later she hears Mrs. Johnson getting up to go to the bathroom and goes in to help her. She has torn off the diaper and angrily throws it to the ground. “I despise that thing and I won’t wear it” her mother yells.
Consequence: When her mother wets the bed her daughter awakens fully and has a hard time getting back to sleep. She already gets up 2 to 3 times per night to check on her mother and can’t imagine losing even more sleep. Sometimes she awakens and finds her mom asleep in a wet bed and very cold. Her mother has frequent urinary tract infections and the caregivers are making a concerted effort to keep Mrs. Johnson clean and dry.
Discussion: Mrs. Johnson’s daughter tries to figure out what has changed. Her mother is usually easy to deal with and understands the reason for the diaper. After a little thinking she realizes that her mother doesn’t like the new diapers she recently bought. They are too tight and chafe her mother’s skin. She offers a larger, softer diaper to her mother who replies, “Yes, thank you—that’s much better. I love you” as she happily pulls up the diaper and climbs back in bed. In the morning both the diaper and the bed are completely dry.