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 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 ADLs.

Basics ADLs are the skills needed to take care of personal needs such as:

• Eating
• Bathing or showering
• Grooming
• Walking
• Dressing and undressing
• Transfers
• Toileting

Instrumental (functional) ADLs (called IADLs) are the skills needed to function within society and within the community. As with basic ADLs, these skills 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).

IADLs of daily living include:

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

Symptoms, Stages, and Behavioral Symptoms

Although there is often no clear demarcation between mild, moderate, and severe dementia, caregiver responsibilities increase and as independence with ADLs decrease.

Mild Dementia and ADLs

In the early stage of dementia most people are independent as to 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 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.

Moderate Dementia and ADLs

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:

• 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

Severe Dementia and ADLs

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.

Strategies for Assisting with ADLs

No matter what the level of dementia, 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. Keep these general measures in mind when assisting someone with their ADLs:

• Make eye contact and maintain a calm demeanor and voice.
• Repeat requests in the same words if needed. Rephrasing the request is confusing.
• Engage the resident. Offer simple choices, such as “Do you want orange juice or apple juice?”
• Be empathetic. Examples of empathetic responses include “You must be cold” or “Are you uncomfortable in that chair?”
• Problem solve by asking, “What would help now?”
• Give the person physical space—do not crowd.
• Be aware of your body language and vocal tone.
• Be aware of the speed of your movements and speech.

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.

ADL Strategies: Mild Dementia

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:

• Dressing
  • Encourage choice in the selection of clothes.
  • Assist as needed but allow resident to direct the activity.
• Grooming
  • Allow residents to groom themselves, provide tools if needed.
  • Monitor progress and provide assistance as needed.
• Eating
  • Ask for food preferences.
  • Ask the person to help with meal preparation and meal set-up.
  • Provide adaptive utensils if needed.
  • Provide assistance as needed.
• Bathing
  • Give choice as to when, where, and what type of bathing.
  • Assist in the decision to bathe.
  • 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

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:

• Dressing
  • Provide comfortable clothes with elastic waistbands and Velcro closures.
  • Limit choices but encourage participation in the choice of clothing.
  • Assist closely but encourage independence.
• 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.
• 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 eliminate.
  • 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. 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:

• 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 as much independence as 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 feeding assistance.
  • Offer liquids on a regular schedule.
  • Allow plenty of time to finish eating.
• Bathing*
  • Provide complete bathing care.
  • Retain as much of resident’s earlier bathing rituals as 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.