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. Basic ADLs are those skills needed to take care of personal needs. Instrumental or functional ADLs are the skills needed to function within society and within the community.

Clients participating in adult day programs tend to need less assistance with ADLs than people in long-term care settings. In general, nearly half of daycare clients need some assistance with walking, about one-third need help with toileting, transfers, or medication management, and about one-quarter need help with eating (Singh et al., 2022).

No matter what a person’s 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. However, it is necessary to understand why a person might be refusing help. Are they scared? Do they misunderstand what you are asking them to do? Are they embarrassed? Are they cold or in pain?

When assisting with 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 a task.

If the person seems confused, repeat your request in the same words rather that rephrasing. Offer simple choices, such as “Do you want orange juice or apple juice?” Engage the client. Be empathetic. Examples of empathetic responses include “You must be cold” or “Are you uncomfortable in that chair?” “What would help now?”

Keep these general measures in mind when assisting someone with their ADLs:

• Make eye contact (where culturally appropriate).
• Be calm.
• Give your client physical space—do not crowd.
• Be aware of your body language and vocal tone.
• Slow the speed of your movements and speech.

5.1 ADL Strategies: Mild Dementia

A person with mild dementia can still perform all or most activities of daily living such as shopping, cooking, yard work, dressing, bathing, and reading but will likely begin to need help with complex tasks such as balancing a checkbook and planning for the future. 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.

At this stage, there may be some loss of interest in hobbies and activities. Mood changes, such as depression and anxiety, can occur. Learning new tasks, especially complex tasks, may be difficult. Faulty judgment and mild changes in personality become obvious to caregivers.

Dressing

• Encourage choice in the selection of clothes.
• Assist as needed but allow client to direct the activity.

Grooming

• Allow clients to groom themselves, provide tools if needed.
• Monitor progress and provide help 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 help 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.

5.2 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 remain relatively independent. For others, especially those with physical limitations, more help may be required.

In the moderate stage, family caregiver responsibilities increase, along with stress, anxiety, and worry. Cooking, housework, and shopping may require direct assistance. Basic ADLs may require assistance for set-up and safety and may be disrupted by behavioral and psychological symptoms such as anger, frustration, and denial. Driving is no longer safe.

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.
• Lay out clothes in order.
• Provide multiple pairs of favorite outfits.

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 and 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 client needs to use the bathroom.
• Provide close assist, particularly with transfers.
• Label bathroom door for easy identification.
• Provide toileting on a regular schedule.

5.3 ADL Strategies: Severe Dementia

Dealing with Delaying Tactics
My mom has moderate dementia and needs assistance with most everything, including transfers and walking. When she has a doctor’s appointment, I try to start preparations at least an hour to an hour-and-a-half ahead of time. I get everything ready and think I’ve got things handled but just before we are ready to go, she insists on brushing her teeth. This takes about 15 or 20 minutes and requires me to stand next to her at the sink the entire time. If I try to get her to go without brushing her teeth, she grabs the door, or even sits down on the step and refuses to go. It drives me crazy. Once in the car she yells at me to hurry up.

Family Caregiver, Cottondale, Florida

In the severe stage, a great deal of independence is lost, and around-the-clock care may be needed. Caregivers will likely need to oversee and directly assist with eating, bathing, walking, dressing, and other daily living activities.

Difficulty swallowing (dysphagia) can develop in the later stage of dementia, leading to aspiration* of food, fluids, or saliva into the lungs. To prevent this from happening, food choices will need to be modified by softening the texture of food and thickening liquids.

*Aspiration: the misdirection of secretions or gastric contents into the larynx and lower respiratory tract.

Positional swallowing maneuvers can also help such as tucking the chin, massaging the throat, or rotating the head. Prevention can include (Metheny, nd):

• Providing a 30-minute rest period prior to meals.
• Sitting in an upright position.
• Adopting a chin-down posture.
• Adjusting the rate of feeding and the size of bites.
• Avoiding the use of sedatives and narcotics, which impair swallowing and the cough reflex.
• Providing good oral care.

During this stage, complex instrumental ADLs have likely been completely taken over by a family member or caregiver. Basic ADLs will require a great deal of set-up and assistance, depending on the person’s physical capabilities.

A person with severe dementia may still be able to walk somewhat independently and may be independent or nearly so with bed mobility and transfers. But anything that requires planning, sequencing, or judgment is severely impaired at this stage. 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.

Control of bodily functions can be inconsistent, requiring direct help with bathing and toileting. Family members may find it impossible to continue to provide care and if they can afford it, may need to hire a caregiver, or move their loved one to assisted living or skilled nursing.

Safety awareness often declines in a person with severe dementia, requiring significant direct help with transfers, gait, 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.

For caregivers, healthcare providers, direct care workers, and family members, this is the stage of dementia that requires all your skills and expertise. People are creatures of habit and older adults with severe dementia still want to participate in social activities, use the bathroom without assistance, get out of bed whenever they want, and live in the way they have lived for their entire lives. These needs, desires, and habits are deeply embedded in our psyche, and it requires a great deal of patience and wisdom on the part of caregivers to understand these changes and provide support in a dignified and respectful manner.

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.
• Be aware of the potential for aspiration of food or fluids.

Bathing*

• Provide complete bathing care.
• Retain as much of client’s earlier bathing rituals as is reasonable.
• Use client 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 client to be clean and comfortable. Shower or tub bath is not necessary—a sponge bath may suffice.