The humanity with which assistance for everyday living is offered, especially help with eating and intimate care, is crucial in helping people retain their self-esteem and dignity.
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 and increases over time.
Basics ADLs are the skills needed to take care of personal needs such as:
- Eating and drinking
- Toileting and bathing
- Grooming, dressing, and undressing
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:
- Financial management
- Preparing meals
- Communicating with the outside world
- Medical management
Direct caregivers, medical professionals, and family members, should understand and follow these best practices for all activities of daily living at all stages of dementia:
- Engage people with dementia in interventions.
- Manage pain.
- Maintain a supportive environment.
- Take a holistic approach.
- Compensate for a person’s reduced abilities.
- Embed interventions in day-to-day life.
- Provide ongoing support.
- Involve caregivers.
- Provide training and skills to employees working with people with dementia.
- Understand and know your patient.
- Train staff.
- Collaborate with other healthcare professionals and family members.
Wheatley et al., 2019
Symptoms, Stages, and Behavioral Symptoms
Caregiver responsibilities increase as dementia progresses. The ability to organize, sequence, and complete complex tasks such as shopping, cooking, and medication management begins to decline in the early stage of dementia. When a person begins to neglect these tasks, someone, often a family member or friend must step in to help. When short-term memory and logical decision-making begin to decline, caregivers must begin to oversee medical decisions, medication management, shopping, cooking, and other ADLs. The increase in caregiver responsibilities can be gradual or abrupt and may be confusing for everyone involved.
How Mild Dementia Affects ADLs
In the early stage of dementia, most people remain independent with basic ADLs. Many will begin to need help with instrumental ADLs—especially complex tasks requiring multiple steps or extensive planning. There likely will have been a gradual decline over several years, often unnoticed by family and friends. Basic activities of daily living such as eating, dressing, and bathing are likely still independent.
At this stage, a person may try to cover up any confusion by turning to others for help with simple tasks. This is a natural response to loss of cognitive abilities and may be accompanied by denial, anger, and excuses. 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 family.
How Moderate Dementia Affects ADLs
As dementia progresses, instrumental ADLs such as work, medication management, and personal finances become more difficult. A person may begin to need help with some basic daily activities. Mobility is often still good and, if so, safety can become a concern. Caregiver responsibilities begin to increase, causing stress, anxiety, and worry for family members. In the moderate phase:
- Cooking, housework, and shopping may require direct assistance
- Basic ADLs may require assistance for set-up and safety
- ADLs may be disrupted by behavioral and psychological symptoms such as anger, frustration, and difficulty communicating needs
How Severe Dementia Affects ADLs
As dementia becomes more severe, independence is gradually lost and caregivers must provide close, direct care with most, if not all ADLs. At this stage, a person may require 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 needed care and may begin to consider an in-home caregiver, assisted living, or skilled nursing.
A person with severe dementia who still has good mobility may wander and require constant monitoring. If the person is lives at home, tired and overworked caregivers and family members must provide even more support with ADLs and to maintain a safe environment. If in a skilled nursing, adult day care, or assisted living situation, the facility must provide enough staffing and equipment to ensure a person’s safety. Often, assisted living and skilled nursing facilities are understaffed and workers are untrained in dementia-friendly practices.
As severe dementia progresses, balance and safety awareness go from bad to worse, requiring significant direct help with transfers and mobility. People with dementia are much more likely to be at high risk for falls than people without dementia.
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.
End of Life/Hospice
As people near the end of life, most people will experience decreased appetite as well as difficulties swallowing food and water, which can increase the risk of aspiration pneumonia. They may be candidates for some type of artificial hydration, which can include enteral1 or intravenous nutrition2. TPN is often used in the terminal state of malignancy (Takenoshita et al., 2017).
1Enteral nutrition mainly consists of nasogastric (NG) and percutaneous endoscopic gastrostomy (PEG) tube feeding.
2IV nutrition includes peripheral venous nutrition (PVN) and total parenteral nutrition (TPN).
The American Geriatrics Society has issued a position statement on tube feeding, which states that careful hand feeding is almost as good as tube feeding for the outcomes of comfort, aspiration pneumonia, functional status, and death. Hand feeding has the added benefits of being an intimate social interaction while avoiding the burdens and complications associated with tube feeding. Involving a dietician, who can offer dietary supplements in addition to the regular diets has proven effective in maintaining nutritional status in elderly people with advanced dementia (Ijaopo EO and Ijaopo RO, 2019).
In Florida, nearly 6% of residents in nursing homes receive nutrition via some sort of feeding tube (Harrington and Carrillo, 2018). The overreaching question is whether tube feeding is good for the patient or even necessary, especially those with end-stage dementia. In the latest stage of Alzheimer’s, most people stop eating entirely, which is considered part of the natural course of the disease.
Strategies for Assisting with ADLs
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 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. For example, a caregiver in a nursing home may want to bathe a resident and get her dressed quickly because the caregiver has two more people to get dressed before breakfast. A caregiver in an adult day care facility may have multiple clients she needs to get to the lunchroom by noon but one of her clients may want to continue watching TV and want his lunch in his chair in the activities room. The resident’s wishes should be respected.
ADL Strategies: Mild Dementia
A person 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:
- Encourage choice
- Allow resident or client to direct the activity
- Allow residents or clients to groom themselves, provide tools as needed
- Provide assistance only as needed
- Ask for food preferences, encourage choice
- Encourage help with meal preparation and meal set-up
- Provide adaptive utensils as needed
- Provide assistance only as needed
- Encourage choice
- Assist with bathing or shower as needed
- Monitor for safety and comfort
- Monitor and ask
- Assist as needed
- Encourage fluids** even though more bathroom visits may be necessary
*Be aware that some medications cause constipation while others increase or decrease the urge to urinate.
**Dehydration can cause increased confusion.
ADL Strategies: Moderate Dementia
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 or underlying medical conditions, more help will be required. In the moderate stage of dementia:
- Limit choices but encourage choice
- Provide comfortable clothes with elastic waistbands and Velcro closures
- Encourage independence
- Provide assistance as needed
- Limit choices (“Would you like lipstick today?” “Would you like to brush your hair?”)
- Encourage as much independence as possible
- Ask for food preferences
- Set up the meal before serving—open packages, uncover trays
- Provide adaptive equipment as needed
- Monitor closely, encourage independence
- Ask about bathing preferences
- Initiate and monitor the activity
- Provide direct assistance as needed, particularly in showers
- Ask regularly if the resident needs to use the bathroom
- Provide close assist, particularly with transfers
- Label bathroom door for easy identification
- Provide toileting on a regular schedule
ADL Strategies: Severe 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. Remember to reintroduce yourself each time you meet the person you are assisting. In the severe stage of dementia:
- Limit choices, select clothes and set them out
- Choose comfortable clothing that is easy to wash
- Use simple, one-step commands and gestures
- Encourage independence wherever possible
- Provide as much assistance as needed
- Move slowly, limit choices
- Use one-step commands and gestures
- Ask for food preferences
- Fully set up meal before serving
- Provide adaptive equipment as needed
- Monitor closely and be ready to provide assistance
- Offer liquids on a regular schedule
- Allow plenty of time to finish eating
- Provide complete bathing care
- Retain earlier bathing rituals is reasonable
- Use resident behavior as a guide
- Expect both bowel and bladder incontinence requiring total care
- Set up timed toileting schedule
*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.
ADL Strategies at the End of Life
End-of-life care for people with dementia can be complex for reasons other than cognitive impairment. Most people are frail and have multiple comorbidities. Near the end of life there are often complications that create dilemmas for healthcare providers and family members. A person may be agitated or experiencing difficulties with swallowing, eating, drinking, and taking oral medication and diminished immune response can cause increased susceptibility to infections (Davies et al., 2018). Loss of ability to verbally communicate, impaired hearing and vision, and the need for ever greater help with ADLs can be difficult for everyone involved.
Encouraging participation and independence in as many ADLs as possible is an important goal for caregivers. However, as the end of life approaches, comfort, companionship, skin care, and pain management become the primary focus. Active and active-assisted movement, such as reaching, rolling, standing, self-propelling a wheelchair, and participation in appropriate activities should be gently encouraged.
Mrs. Cavalia 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. Cavalia 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 (what causes a certain behavior): In her room, the aide undresses Mrs. Cavalia and wraps her in a bath blanket. Unable to find a shower chair, she helps Mrs. Cavalia into a toilet chair. Mrs. Cavalia’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. Cavalia reaches the shower room she is very agitated. She slaps the aide and repeatedly grabs the shower door. The aide manages to get Mrs. Cavalia into the shower room, but when she turns on the water, Mrs. Cavalia 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 involved and showering has become a dreaded experience for Mrs. Cavalia.
Discussion: Find out how Mrs. Cavalia 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. Cavalia’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, hasn’t received dementia-friendly training, and hasn’t been told about Mrs. Cavalia’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.