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 is offered, especially help with eating and intimate care, is crucial in helping the person retain their self-esteem and dignity.
Nuffield Council on Bioethics
Activities of daily living (ADLs) are the personal tasks we do during our daily lives. Because ADL skills tend to decline as dementia progresses, caregiver involvement naturally increases over time. ADLs are generally divided into two categories: basic ADLs and instrumental ADLs.
In adult day services programs, clients tend to need less assistance with ADLs than people in other long-term care settings, particularly with bathing, dressing, and toileting (Harris-Kojetin et al., 2016). In general, about one-third of day care clients need help with toileting, about one-quarter need help with eating, and about one-third need help with medication management. Nearly half need some assistance with walking and about one-third need help with transfers (Dwyer et al., 2014).
Instrumental or functional ADLs are the skills needed to function within society and within the community. These skills decline as dementia progresses. When a person is no longer able to perform basic math calculations, when insight becomes limited and memory is significantly compromised, financial and medical decision-making and medication management will 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).
Basics ADLs (skills needed to take care of personal needs)
Instrumental ADLs (skills needed to function within the community and society)
Although there is often no clear demarcation between mild, moderate, and severe dementia, caregiver responsibilities will increase as ADL skills decline. In the early stage of dementia most people remain independent with basic ADLs. Most will begin to need help with instrumental ADLs—especially complex tasks requiring multiple steps or extensive planning. Basic activities of daily living such as eating, dressing, and bathing are likely still independent.
At this stage, a person will naturally 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.
As dementia progresses to the moderate stage, instrumental ADLs such as work, medication management, and management 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:
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 hire a caregiver or move their loved one to assisted living or skilled nursing.
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. In skilled nursing or assisted living, the facility must provide enough staffing and equipment to create a safe environment.
As severe dementia progresses, balance and safety awareness can decline, 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, which increases the cost of care. Caregivers and healthcare providers must make difficult decisions to prevent injury and to provide a safe environment.
No matter what the level of dementia, when assisting someone with activities of daily living, encourage them to express their wishes. “No, I don’t want to!” means just that, even when spoken by someone with dementia. Keep these general measures in mind when assisting someone with their ADLs:
When assisting with basic ADLs, use common sense, non-challenging body language, and a quiet, confident tone of voice. Whatever the activity, move slowly, give clear, simple commands, limit choices, and allow plenty of time to complete the task.
There are times when the caregiver and the client have different goals. A caregiver in an adult day care facility may want to assist a client with a transfer from a recliner to a wheelchair as quickly as possible because the caregiver has two more people to help before an activity starts. The client may want just to watch TV and not participate in an activity.
My mom needs help with everything, including transfers and walking. When she has a doctor’s appointment I try to start preparations at least an hour to an hour-and-a-half ahead of time. I get everything ready and think I’ve got things handled but just before we are ready to go she insists on brushing her teeth. This takes about 15 or 20 minutes and requires me to stand next to her at the sink the entire time. If I try to get her to go without brushing her teeth she grabs the door, or even sits down on the step and refuses to go. It drives me crazy. Once in the car she yells at me to hurry up.
Those with mild dementia may need very little help, if any, with basic activities of daily living. 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.
Although there is no clear delineation between mild and moderate dementia, it will become clear to caregivers that as dementia progresses, clients 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:
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, depending on the person’s physical capabilities.
A person with severe dementia may still be able to walk independently and 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 client to be clean and comfortable. Shower or tub bath is not necessary—a sponge bath may suffice.
Mrs. Cavelia has moderate dementia due to Alzheimer’s disease and lives in a nursing home. Tuesday is her shower day—a nursing assistant helps her undress in her room, covers her with a blanket, and wheels her to the shower room using a rolling commode chair. When they leave the room and enter the hallway, Mrs. Cavelia starts to fidget. As they approach the shower room she begins to yell and protest. When she is placed in the shower she screams, grabs the door, and tries to push her caregiver away.
Antecedent: In her room, the care assistant undresses Mrs. Cavelia and wraps her in a bath blanket. Unable to find a shower chair, she helps Mrs. Cavelia into a toilet chair. Mrs. Cavelia’s bottom is hanging out the hole in the chair, which embarrasses her. She tries to stop the caregiver from wheeling her out into the hallway by grabbing at the doorway as they exit. She says “No! No!” but the caregiver tells her she is dirty and needs a shower, which embarrasses Mrs. Cavelia even more.
Behavior: By the time Mrs. Cavelia reaches the shower room she is very upset. She slaps the nursing assistant and repeatedly grabs the shower room door. The nursing assistant manages to get Mrs. Cavelia into the shower room, but when she turns on the water, Mrs. Cavelia screams, grabs the shower hose, and pushes the nursing assistant away. She sprays water all over the caregiver and into the hallway.
Consequence: The client, staff, and the client’s daughter are all upset. The situation created an unpleasant environment for everyone and showering has become a dreaded experience for Mrs. Cavelia.
Discussion: Find out how Mrs. Cavelia bathed earlier in life. Allow her to participate in her bathing even if it takes longer. Ask her if she wants a shower. Allow her to undress in the shower room rather than in her room. Talk with her during the procedure and get continual feedback from her. Ask her questions such as “Is this too hot?” “Do you want to wash your face?” “Are you cold?”
Mrs. Cavelia’s daughter has told the nursing staff that her mother prefers to undress in the shower room and hates being wheeled half-naked down the hall. The nursing assistant bathing her today is new and hasn’t been told about Mrs. Cavelia’s preferences. Find a way to communicate preferences such as these. Consider whether she needs to have a shower or if there are other ways of bathing that might be more acceptable to her.