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:

• Eating and drinking
• Toileting and bathing
• Walking
• Grooming, dressing, and undressing
• Transfers

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:

• Housework
• Financial management
• Shopping
• Preparing meals
• Communicating with the outside world
• Medical management

Symptoms, Stages, and Behavioral Symptoms

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).

How Mild Dementia Affects ADLs

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.

How Moderate Dementia Affects ADLs

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:

• Cooking, housework, and shopping require direct assistance
• Basic ADLs require assistance for set-up and safety
• Completing basic ADLs may be disrupted by behavioral and psychological symptoms such as anger, frustration, and difficulty communicating needs

How Severe Dementia Affects ADLs

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.

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 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.

ADL Strategies: Mild Dementia

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:

• Dressing
  • Encourage choice
  • Allow resident to direct the activity
• Grooming
  • Allow residents to groom themselves, provide tools if needed
  • Provide assistance as needed
• Eating
  • Ask for food preferences
  • Encourage the person to help with meal preparation and meal set-up
  • Provide adaptive utensils if needed
  • Provide assistance as needed
• Bathing
  • Encourage choice
  • Assist with bathing or shower as needed
  • Monitor for safety and comfort
• Toileting*
  • Monitor and 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.

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, more help will be required. In the moderate stage of dementia:

• Dressing
  • Provide comfortable clothes with elastic waistbands and Velcro closures
  • Limit choices but encourage participation in the choice of clothing
  • Encourage independence, provide assistance as needed
• Grooming
  • Limit choices (“Would you like lipstick today?” “Would you like to brush your hair?”)
  • Encourage as much independence as possible
• Eating
  • Ask for food preferences
  • Set up the meal before serving: open packages, uncover trays
  • Provide adaptive equipment as needed
  • Monitor closely, encourage independence
• Bathing
  • Ask about bathing preferences
  • Initiate and monitor the activity
  • Provide direct assistance as needed, particularly in showers
• Toileting
  • 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. In the severe stage of dementia:

• Dressing
  • 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
• Grooming
  • Provide as much assistance as needed
  • Move slowly, limit choices
  • Use one-step commands and gestures
• Eating
  • 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
• Bathing*
  • Provide complete bathing care
  • Retain earlier bathing rituals is reasonable
  • Use resident behavior as a guide
• Toileting**
  • 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.