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).

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:

• Cooking, housework, and shopping require direct assistance.
• Basic ADLs require assistance for set-up and safety.
• Basic ADLs may be disrupted by behavioral and psychological symptoms such as anger, frustration, and denial.

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.

Strategies for Assisting with ADLs

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:

• 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.

Examples

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.

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

Grooming

Eating

Bathing

Toileting*

*Be aware that some medications cause constipation while others increase or decrease the urge to urinate.

ADL Strategies: Moderate Dementia

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:

Dressing

Grooming

Eating

Bathing

Toileting

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, 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:

Dressing

Grooming

Eating

Bathing*

Toileting**

*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.