The humanity with which assistance for everyday living is offered, especially help with eating and intimate care, is crucial in helping the person retain their self-esteem and dignity, as are 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 during 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 or functional ADLs.
Basics ADLs are the skills needed to take care of personal needs such as:
Instrumental ADLs (IADLs) are the skills needed to function within society and within the community. As with basic ADLs, these skills decrease as dementia progresses. IADLs include:
As independence with ADLs decrease caregiver responsibilities naturally increase. For example, when a person is no longer able to perform basic math calculations, a caregiver must begin to 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 (DeFina et al., 2013).
In the early stage of dementia most people are 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 friends and caregivers.
As dementia progresses to the moderate stage, instrumental ADLs such as work, medication management, and keeping track of personal finances become more difficult. A person may need help with basic daily activities. Mobility is often still good and, if so, safety becomes a concern for caregivers. Caregiver responsibilities increase, causing stress, anxiety, and worry for family members. In the moderate phase:
As dementia enters the severe stage, independence is gradually lost and caregivers must provide close, direct care with most if not all ADLs. At this stage, a person requires direct assistance with basic ADLs such as eating, bathing, transfers, and walking. Control of bodily functions may be inconsistent, requiring help with bathing and toileting. Family members may find it impossible to continue to provide care and may be forced to consider assisted living or skilled nursing.
Those with severe dementia who try to wander will require constant monitoring. If the person is lives at home, tired and overworked caregivers must provide even more support with ADLs and to maintain a safe environment. If in a skilled nursing or assisted living situation, the facility must provide enough staffing and equipment to ensure 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.
When assisting someone with basic or instrumental 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.
When assisting someone with basic ADLs such as dressing, grooming, eating, bathing, and toileting, certain strategies will help you to complete these tasks successfully. Use common sense, be aware of your body language, and use 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 person with dementia have different goals. A caregiver in a residential care facility may want to bathe a resident and get her dressed quickly because the caregiver has two more people to get dressed before breakfast. The resident may want just to watch TV for 30 minutes before going to breakfast. The resident’s wishes should be respected.
Those with mild dementia may need very little help 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.
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 remain relatively independent. For others, especially those with physical limitations, more help will 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 to complete, 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.
With severe dementia, anything that requires planning, sequencing, or judgment will be severely impaired so close assistance is 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. Cavelia has moderate dementia due to Alzheimer’s disease and lives in a nursing home. Tuesday is her shower day—an aide 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 and pushes her caregiver away.
Antecedent: In her room, the aide 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.
Behavior: By the time Mrs. Cavelia reaches the shower room she is very agitated. She slaps the aide and repeatedly grabs the shower door. The aide 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 aide away. She sprays water all over the aide and into the hallway.
Consequence: The resident, staff, and the patient’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. 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.