Introduction

Instrumental activities of daily living (IADLs), like shopping, paying bills, and balancing a checkbook, are the first areas in which a person living with dementia may notice difficulties. Encourage care partners to engage with the person while performing these activities with a person.

Basic activities of daily living (ADLs) refer to activities such as bathing, grooming, dressing, simple meal preparation, eating, and changing from one position to another (in/out of bed for example). Most people in the early stages of dementia will be able to do these things for themselves, though cueing may help from time to time. As the dementia progresses, individuals will need more assistance. This lesson covers the general principles that help make this a positive experience for both care partners.

Remember: These are activities of daily living, not tasks!

ADLs and IADLs

Individualizing Morning and Nighttime Routines:

In skilled nursing facilities, providing care according to a set schedule is referred to as an institutionalized routine. Institutionalized routines cause caregivers to frequently interrupt sleep to perform tasks. These routine interruptions and noise levels make it difficult to get a good night’s sleep. Sleep restores us. Not getting enough sleep affects mood, balance, appetite, body’s healing process, and ability to think sharply.

Individualizing care routines make life better and easier for everyone. Individualizing means following the person’s customary routines in the morning, how they spend their evening and the time they are naturally ready to go to sleep. To individualize nighttime and sleep needs, have meaningful activities and food available for people who are “night owls.” In nursing facilities, this also means minimizing sleep interruption. Reduce noise and ask if the person would like to have all their care at once. If so, coordinate treatments and medications with times when the CNA is providing personal care to the person.

Allow the person with dementia to awaken naturally. In facility-based care, go to the person’s room at their usual waking time and ask quietly if the person is awake. If so, then assist the person with their normal morning routine. If not, go back later and check with them again. Meals, medications, treatments, appointments and other daily activities are built around the person’s customary morning routines.

In home- and community-based care, individualizing daily routines means asking the person about their routines and as much as possible scheduling visits when he or she would like you to come.

Below are major sections for ADLs and tips for assistance. Use the sections for reference if you are having trouble with one of the ADLs.

Assisting with Dressing

Maintaining one's appearance can promote positive self-esteem. Assist the person in choosing clothes appropriate for the season and the occasion. Dressing can be a difficult task to complete for a person with dementia, especially as the disease progresses.

There are many things you can do to make it pleasant. Keep the closet free of excess clothing. Provide the opportunity to choose, but simplify the selection to two items. The process is organized, laying out the clothing in the order each item should be put on, based on the person’s preferences. Break the task down to small steps to keep the person from becoming overwhelmed. Model the tasks to help the person completes each step. Assist as necessary, but encourage the person to do as much as possible. Allow adequate time for the person to get dressed.

Clothing should be comfortable and simple for the person to put on. Shirts, blouses, and sweaters that button in the front are easier for the person to work with rather than pullover type of garments. Shoes should be comfortable, with non-slip soles. Be flexible; if the person wants to wear multiple layers of clothing, simply make sure they do not get overheated. When going outdoors, ensure that the person is dressed appropriately for the weather. If the person wants to wear the same clothing repeatedly, consider duplicates or similar options.

Assisting with Transferring

Often people living with dementia seem to be uncooperative when trying to help them move. This may be because they don’t want to move, do not understand what is being asked of them or have pain.

When assisting a person to transfer, do the following:

• Always tell them what you plan to do.
• Encourage them to do as much as they are able.
• Do Not Rush! Allow plenty of time for transferring.
• Work with the physical therapists; follow their treatment plan.
• Always lock the wheelchair and the bed so they don’t slide.
• Lower the bed to its lowest position.
• Never pull on their affected or 'weak' arm.
• The person should wear well-fitting, non-skid footwear.
• Place the person with their unaffected or 'strong' side toward the chair they are moving toward.
• Use good body mechanics for lifting.
• Use a mechanical lift if required.
• Get help from a second person.
• Use a gait belt when required (according to community policy).
• Keep your back straight.
• Bend your legs to avoid injuring your back.

For bed-to-chair transfer, chair-to-chair, use of gait belts and sideboards, refer to the participants manual for recommended best practices.

Bathing

Bathing is an intimate experience and often the most difficult personal care activity that caregivers give. People with Alzheimer's and other dementias may find bathing unpleasant or threatening, or may simply have lost interest in it. And no one—with or without dementia—is likely to enjoy the lack of privacy, the lack of respect for modesty, cold and rough cloths and towels that used to be commonplace in long-term care facilities!

Now, most care partners have learned to find out a person’s usual routine: does the person prefer showers, tub baths or bed baths? In the morning or at night? Once a week or every day? How often did he/she bathe? What does the person like to do for themselves? In any setting, remaining flexible, sensitive, patient and calm will help you provide a better bathing experience.

Some skilled nursing facilities now create a pleasant spa-like atmosphere in shower rooms: the room temperature is warm and soft music the person is known to like plays in the background. Larger towels and bathing blankets provide more warmth and privacy.

When preparing to assist a person with bathing, first gather all necessary items including soap, shampoo, and towels. Never leave a person alone in a shower or bathroom. Ensure the provision of privacy for the person.

Dining and Nutrition

People with dementia may experience a reduction in fluid and food intake. The person may be unable to recognize signals of thirst or hunger; communicate they are thirsty or hungry; recognize dining utensils; or feed themselves. Changes in their sense of smell or taste, vision problems, or difficulty swallowing can also contribute to intake reduction.

The care community must develop systems for comprehensive screening and assessment that encourage those with dementia to maintain their nutritional health and avoid unnecessary complications, such as the following:

• Poor dental health
• Swallowing issues
• Distractibility during meals
• Impairments in balance, strength or endurance
• Attempts to eat non-food items

Feeding Techniques

Persons with dementia have several levels of need when it comes to the intake of nutrition. CNA’s and feeding assistants will offer different types of assistance based on the person’s individual needs.

Three Types of Assistance

Minimal Assistance

Those who need minimal assistance may be able to feed themselves, but have difficulty setting up their meal.

Help may be needed with the following tasks:

• Putting on a clothing protector
• Unwrapping or uncovering drinks, opening milk cartons, or placing straws in beverages
• Uncovering food
• Spreading margarine or butter on toast or bread
• Adding margarine or butter to hot cereal
• Cutting meat
• Opening condiment packages

Providing minimal assistance includes the following:

• Offering to add salt and pepper, cream and sugar, syrup, jelly, and other condiments to food items served (Never add any of these items without first asking the person. Some of them may be able to do this themselves.)
• Offer to cut sandwiches into quarters (four pieces)

Minimal Assistance with Verbal Cues and Prompts

This is the next level of assistance. Those who need verbal cueing and prompting can feed themselves but may be easily distracted or have difficulty staying on task. They need minimal assistance as well as some cueing or prompting.

Examples of Verbal Cues

• Person stops eating: "Take a bite of your eggs, Mrs. Smith."
• Person doesn’t drink liquids during meal: "Take a drink now."
• Person forgets to chew (has food in the mouth): "Chew some more."

Examples of Physical Prompts

• Person stops eating: Point to the food.
• Person stops eating while holding a fork or spoon: Touch the person’s hand to draw attention to the fork or spoon.

Hand-over-Hand Feeding Technique

Hand-over-hand feeding is a method that may serve as a prompt for the person to complete the task on his or her own.

Place your hand over the person’s hand and complete the task together. Be sure to sit on the same side as the hand you are assisting. If a person is weak but knows what to do, using the hand-over-hand technique helps the person maintain or improve their self-feeding ability.

When the Hand-over-hand Technique is Useful

The Hand-over-hand technique may be used when a person does the following:

• Forgets how to eat.
• Is unable to cut food.
• Is unable to spread margarine or jelly on toast or bread.
• Cannot lift utensils.
• Cannot pierce food with a fork.
• Is too tired to feed him or herself as the day progresses.

Total Assistance (Feeding a Person)

This is the next level of assistance, provided when the person needs to be fed.

Guidelines for feeding a person include the following:

• Fill the spoon half full and offer from the tip of the spoon. Place the spoon in the middle of the person’s tongue.
• Continue at an unhurried pace.
• Offer the most nutritious foods first; meat, milk, starch, vegetable, etc. Offer desserts and supplements last.
• Alternate liquids and solids to make the meal more enjoyable and to ease swallowing. This also helps to ensure the person gets needed fluids.
• Do not indicate impatience with those who eat slowly. Allow them ample time to eat. Try to make mealtime relaxing and enjoyable.
• Wipe the person’s face with a napkin as needed.
• Be sure to offer alternatives or substitutes if the person does not like what is being offered, or if the person is not eating well (eats less than 75% of his or her meal).

Incontinence Care and Toileting

Many people will experience incontinence (a loss of bladder or bowel control) in the later stages of Alzheimer's and other dementias. There are many causes, as well as ways to help manage incontinence. How you respond can help the person with dementia retain a sense of dignity. Both incontinence care and toileting are important to overall care.

Factors that can lead to incontinence include the following:

• Inability to recognize the need to use the bathroom
• Forgetting where the bathroom is located
• Clothing that is difficult to remove
• Physical conditions, such as UTI, constipation or prostate issues
• Medications, such as diuretics, sedatives/hypnotics, or anticholinergic medications
• Mobility impairments

Identifying the underlying cause of incontinence can help you develop an appropriate care plan.

In some cases, the incontinence may be reversed when the cause is treated such as treating a urinary infection (UTI) or reducing medications that may be causing it. In other situations, an individualized continence promotion plan can decrease the number of incontinent episodes and decrease the risk of adverse consequences.

Ask questions regarding the person’s normal voiding patterns and use that information as a guide to determine a schedule for his/her toileting.

Make sure that the person has enough time to empty his/her bladder and bowels. Provide adequate privacy and safety for the person during toileting or incontinence care.

Assisting with Incontinence

• Learn the person’s triggers.
• Use adult words, not 'baby talk', when referring to the toilet.
• Use terms they understand, like urinate instead of micturate.
• Make it easy to find the toilet.
• Change the color of the toilet seat.
• Keep pathway clear of clutter.
• Choose clothing that is easy to remove for toileting.

For additional information on managing urinary incontinence, visit the Quality Monitoring Program’s Continence Promotion webpage at: https://hhs.texas.gov/doing-business-hhs/provider-portals/long-term-care-providers/nursing-facilities-nf/quality-monitoring-program-qmp/evidence-based-best-practices-qmp/continence-promotion.

Environmental Factors of the Dining Room

• Provide a dining room that is quiet with ample spacing.
• Provide sensory cues to orient the person to mealtime.
• Serve meals on plates or trays appropriate to a person’s abilities.
• Ensure adequate lighting in the dining area.

The Provision of Meaningful Activities for Persons with Dementia:

Persons living with dementia benefit from engaging in meaningful social interactions throughout the day, every day. Both formal and informal activities can provide the person with a sense of security and enjoyment. Formal activities are those that are generally scheduled and placed on the community’s activity calendar, such as parties, religious services, and games.

Informal activities are those that occur during everyday interactions, such as a walk down the hall, a chat with another person or even participating in ADLs like bathing. Having personal space, privacy, and quiet time also enhance a person’s quality of life.

Encourage the person and their family to share the person’s life story, summarizing his or her past experiences, personal preferences, and current capabilities. Once the person’s preferences, abilities and needs have been identified, an individualized service, support, and care plan for meaningful activities must be included in the comprehensive plan. Focus on activities tailored to the person’s interests, not their age.

Have activity materials freely available.

• Baskets of towels, fabric swatches or socks to sort
• Books or calendars with photos to view and discuss
• Puzzles or games, depending on the person’s abilities
• Multi-sensory theme boxes – fishing, gardening, activities grab bag, etc.

Activity-Based Care

Activities are the things that we do, including getting dressed, doing chores, playing cards, and even paying bills. They can represent who we are and what we’re about. Most people with Alzheimer’s still have the energy and desire to do things, but lack the ability to organize, plan, initiate, and successfully complete even simple tasks of daily life.

The objective of good activity programming is not only to serve the best interests of the participants but also make activities a rewarding experience for both the person with Alzheimer’s and healthcare professionals. If an activity is to be meaningful, it must have purpose, be voluntary, feel good to the participant and offer the person with Alzheimer’s a reasonable chance of success.

Types of Activities

• A personal encounter: Making eye contact, exchanging greetings or passing in the hall are important to a person or program participant only if they are meaningful, supportive and affirming.
• Naturally offered by the environment: A gathering of chairs and tables naturally promotes spontaneous interaction between people and their surroundings. For example, a chair by the window that looks onto a bird feeder encourages bird watching.
• Daily housekeeping routines: Tasks such as folding laundry, raking, sweeping, dusting, clearing and setting tables, and making beds are good for people with dementia because no new learning is required. These tasks can make the person feel useful and productive.
• Self-care activities: Dressing, bathing, grooming, and dining can be the most personally meaningful and comforting activities, yet are often the first to be removed from an individual’s control upon entering a long-term care community. These activities help reinforce the individual’s identity and sense of autonomy.
• Planned scheduled events: Planned normally by the activity caregivers, scheduled activities are often limited by the creativity, experience, abilities and interest of the participants and caregivers. Not all programs must be innovative and exciting. There is much value in just enjoying another’s company.
• Spontaneous activities: Ad hoc activities can be used as a way to divert people with Alzheimer’s from difficult or potentially dangerous behavior or to diffuse the behavior. For example, an invitation to have a cup of tea may distract a person who is intent on leaving. Or, a walk through the community’s grounds can diffuse anxiety or restlessness.