SUPPORTIVE CARE FOR THE PERSON WITH ALZHEIMER’S DISEASE

Supportive care is an interdisciplinary effort focusing on preventing and relieving suffering and on supporting the best qualify of life for patients and their families facing serious illness. Effective supportive care for patients with advanced dementia can improve the patient’s symptoms, lessen the burden on caregivers, and help to ensure that treatment decisions are well informed and reflect the patient’s and family’s values.

Addressing Challenges to Care

Caring for a person with Alzheimer’s disease can be challenging, no matter the setting—hospital, institution, or the home.

CARE CHALLENGES IN ACUTE CARE SETTINGS

Admission to an acute hospital can be a frightening and confusing experience for the person with dementia. It is important to understand that hospitalization can have a negative impact on their physical, mental, and cognitive abilities, which can lead to increased behavioral and psychological symptoms, risk of poor outcomes, higher incidence of harm, and further cognitive decline. Consequences for persons with dementia admitted to the hospital include:

• Higher mortality rate
• Increased risk for falls
• Functional decline
• Spatial disorientation
• Possible malnutrition and dehydration
• Increased reliance on caregivers
• Depression and delirium
• Overstimulation
• Increased pain and fear partly due to impaired communication abilities

Goals in the acute care setting are typically speedy recovery and timely discharge, both of which are not applicable to the dementia patient.

Nurses are trained to manage acute illness, and dementia symptoms can impact the care they are able to provide. Nurses report that dementia patients require more time to carry out tasks, strain resources, and divert care from other patients. Likewise, nurses must prioritize the imminent needs of patients with acute illnesses, and this challenges them to meet the needs of the dementia patient. Nurses are not routinely given training in the care and understanding of dementia nor of strategies that are effective in managing behavioral issues.

Responsive Behaviors

People with dementia require structure and order in their environment, a definite challenge in a fast-paced, acute care setting. Nursing staff must approach the dementia patient with an easy-going, unrushed attitude or else experience negative responsive behaviors, defined as words, movements, or actions that dementia patients use in an effort to make their needs known. Examples include:

• Grabbing on to others
• Wandering
• Yelling and screaming
• Biting
• Pushing
• Throwing things
• Cursing
• Hitting
• Kicking
• Restlessness
• Repetitive sentences or questions
• Making noises
• Sexually inappropriate behaviors

Experiencing responsive behaviors in the workplace causes feelings of anger, fear, and sadness and are perceived by healthcare professionals as one of the most difficult aspects of providing care for dementia patients in acute care settings. Often, as a result, the patient is prescribed sedating medications, to which these patients are prone to experience adverse reactions, which can include:

• Sedation
• Dysphagia
• Stroke
• Parkinsonism
• Increased length of stay
• Increased mortality

Involving Family and Caregivers

Nurses welcome the familiarity that caregivers provide the patient in the hospital. Such familiarity helps reduce responsive behaviors. Family and other caregivers understand what is normal for the patient, and this helps the nursing staff identify changes that may be indicative of delirium, pain, or other treatable conditions and provide more patient-centered care.

It is important to keep open lines of communication with family caregivers. Besides utilizing the care recommendations they may provide, the clinician can also let caregivers know what is going well. Small successes are shared with the family, which can help promote the patient’s successful transition in and out of the acute care setting.

By drawing on their knowledge and experience of the patient and care needs, family and informal caregivers’ involvement in assessment, care planning, and delivery of care can improve outcomes for people, provide comfort, and help family and caregivers understand and cope (Røsvik & Rokstad, 2020; Yous et al., 2019).

PROVIDING PATIENT-CENTERED CARE IN ALL SETTINGS

The person with Alzheimer’s disease poses a number of challenges to the planning of care. Patient participation should be encouraged, but expectations should be aligned to the person’s abilities. Goals should be planned without expectation of dramatic improvement.

Whether the person is cared for at home or another care setting, overall treatment goals are the same: to maximize the person’s functional abilities and quality of life and to provide competent, compassionate care that acknowledges and respects the person and family. Ideally, that care is multidisciplinary, including medicine, nursing, social work, occupational therapy, physical therapy, and speech-language pathology.

The challenges of caring for someone with Alzheimer’s disease include communicating effectively with the person; assisting with ADLs while helping maintain the person’s independence; planning activities that will help maintain well-being and prevent boredom; and managing behavior problems such as agitation, wandering, and sleep disturbance. Meeting these challenges may become more difficult as the disease progresses.

Providing a Safe Home Environment

As dementia progresses, physical and social environments prove ever more difficult for the person, and a safe environment is essential. Things to consider in creating such an environment include:

• Arranging furniture simply and keeping the arrangement consistent
• Keeping the environment uncluttered
• Removing loose rugs and taping down carpet edges that could contribute to falls
• Using extra lights in entryways, doorways, stairwells, hallways, and bathrooms
• Providing seating near the bed to help with dressing
• Ensuring closet shelves are at an accessible height to prevent the person from climbing shelves and to avoid objects falling from overhead
• Securing book shelves, cabinets, and large TVs to prevent tipping
• Installing night lights in hallways and bathrooms
• Disposing of or safely storing old medications, and locking up medications currently being taken
• Installing a hidden gas valve or circuit breaker on the stove so the person cannot turn it on
• Removing knobs from the stove
• Disconnecting the garbage disposal
• Discarding toxic plants and decorative fruits that may be mistaken for food
• Keeping appliances away from water sources such as sinks
• Installing locks out of sight
• Placing deadbolts either high or low on exterior doors to make it difficult for the person to wander away
• Removing locks in bathrooms or bedrooms so the person cannot get locked inside
• Disabling or removing guns or other weapons
• Installing an automatic thermometer on plumbing to regulate water temperature
• Installing a walk-in shower
• Adding grab bars to the shower or tub and at the end of the vanity
• Adding textured, nonslip stickers to slippery surfaces
• Securing and locking up all cleaning products, chemicals, and other potentially hazardous items
• Keeping the door to the laundry room locked
• Using appliances with automatic cut-off mechanisms
• Replacing long electrical cords on appliances with coiled or retractable ones
  (Alzheimer’s Association, 2021b)

Creating a Supportive Environment

A supportive environment includes both physical and social aspects that work together to support the unique needs and abilities of the person with dementia. A supportive and dementia-friendly environment helps people reach their full potential and does not cause needless dependency. This results in an improved quality of life for people with dementia, their family members, and caregivers.

An environment can help support or hinder social connection and sense of self. It can give independence or force dependency. Independence is about what matters to a person: how they feel is just as important as physical independence. Dementia-friendly environments empower people.

A homelike supportive environment provides continuity and familiarity in everyday life, encourages family involvement, and strengthens social ties. The following elements are included in designing and creating a homelike supportive environment:

• Unobtrusive clinical support and the use of language common to the home, not to healthcare
• Smaller-scale living spaces
• Homelike kitchens
• Welcoming dining areas
• Homelike furniture and furnishings
• Personalization of bedrooms
• Warm colors
• Continuous indoor and outdoor spaces
• Sensitivity to culture, religion, and spirituality
• Experiential approach to communication
• Engagement in daily life experiences
• Flexible problem-solving for individual care issues
• Family participation
• Engagement in daily life experiences
• Individualized care
• Flexible problem-solving for individual care issues
• Freedom of movement
• Individual control and decision-making wherever possible
• Meaningful relationships
• Flexible management and supervisory approach
  (Victoria State Government, 2020)

Some basic principles for creating and maintaining such an environment both in the home and in a healthcare facility include:

Make change very slowly. Carefully prepare the person for any change in medications, nutrition, therapy, personnel, or location. Consistency in staff assignment has a calming effect on the person. The person should stay in the same room with the same roommate whenever possible.

Keep the person active as long as possible. Daily exercise, outdoors if possible, helps maintain physical and emotional function. Activities should be focused on making the person more comfortable and designed to allow them to use existing skills to perform familiar tasks. Avoid complexity in activities, as this can create anxiety.

Maintain a routine. A person with dementia generally feels more secure when routines are established and followed closely.

Provide social stimulation without overload and encourage and maintain communication through every possible channel. Keep communications short and simple.

Give choice of activity and involvement. Provide different options for both indoor and outdoor activities in which the person takes either an active role or watches others.

Avoid crowds and large spaces without boundaries. Try to prevent sensory overload and provide boundaries and interior landmarks that are easily visible. This can be done using contrasting colors to demarcate boundaries.

Noise should be kept low and can be masked by the sound of music that was popular during the person’s youth.

Older television shows can provide a familiar background and anchor the person in a period they can remember.

Monitor nutrition, attention to mouth and teeth, and footwear. Help with eating and oral hygiene can reduce the risk of infection. Comfortable, well-fitting shoes with nonslip soles help prevent falls.

Provide positive input. Praise and compliments for any achievement help maintain the person’s self-esteem and encourage self-participation in activities of daily living.

Provide reality checkpoints, such as calendars with large days and dates, clocks with large numbers marking the hours, and reminders of special events such as birthdays, anniversaries, and holidays. Signage with figures illustrating the use of an area is helpful in orientation. The presence of personal items can help the person identify an unfamiliar room as their own.

Support bowel and bladder control. A consistent toileting routine helps preserve function and control. Use clothing with simple fasteners like Velcro (hook and loop) or pants with elastic waistbands.

Assist with activities of daily living. The person frequently will have problems attending to basic hygiene and daily life activities. Drinking, eating, bathing, or dressing may require careful attention in order to avoid infections and eventual progression to a generally debilitated state.

Attend to the person’s appearance. Keep the person clean and free from odors, dress the patient in their own clothes, and keep them well-groomed. This aspect of care is noticed by family members.

Closely attend to emerging symptoms and identify a person’s problems before they become unmanageable. Keep in mind that the person is often unable to describe routine physical symptoms, even pain.

Support family caregivers. Commend their efforts, refer them to support groups, and assist them in creating a helping network. Families caring for a loved one at home may require referrals to agencies offering respite care. Assist them in ways to understand and respond to a person’s behavior and communication.

Offer information and referrals for legal matters, advance directives, end-of-life care, etc. This should be done at the time of diagnosis, while the person with Alzheimer’s can still have a voice in the decisions made.

Communication Issues

As Alzheimer’s dementia progresses, the person’s ability to communicate begins to deteriorate, and the following changes occur:

• Difficulty finding the right words
• Repetitious use of familiar words
• Describing familiar objects rather than calling them by name
• Inventing new words for familiar objects
• Losing one’s train of thought
• Reverting back to native language
• Problems with organization of words
• Reduction in efforts to speak
• Relying on gestures more than speaking

Communicating with the person who has Alzheimer’s disease begins with patience, respect, understanding, and remembering that the person is not deliberately being difficult. If the individual has a vision or hearing deficit, it is always important to make certain hearing aids and glasses are being worn so as to avoid additional barriers to communication.

The following are ways to communicate more effectively with someone in the early stage of Alzheimer’s:

• Avoid making assumptions about the person’s ability to communicate.
• Do not exclude the person from conversations.
• Speak directly to the person rather than to their caregiver or companion.
• Be patient and take time to listen to the person express their thoughts, feelings, and needs.
• Give the person time to respond and do not interrupt unless the person requests help.
• Ask the person what help may be needed.
• Discuss which method of communication is most comfortable, which may include face-to-face conversation, email, or phone calls.
• Use humor to lighten a mood and make communication easier.
• Don’t pull away; honesty, friendship and support are important to the person.

In the middle stage of Alzheimer’s, as the disease progresses, the person will have more and more difficulty communicating. It is helpful to:

• Engage with the person in one-on-one conversation in a quiet place with minimal noise and other distractions.
• Speak slowly and clearly, keep sentences simple, and focus on one idea at a time.
• Face the person and maintain eye contact.
• Give the person adequate time to respond.
• Be patient and offer reassurance to encourage expression of thoughts.
• Ask one question at a time.
• Ask yes or no questions; avoid open-ended questions.
• Avoid correcting or criticizing. Listen and attempt to find the meaning in what is being said.
• Repeat what the person has said for clarification.
• Make statements rather than asking questions (e.g., instead of asking if the person needs to go to the bathroom, say, “The bathroom is here”).
• Avoid arguing.
• Offer clear, step-by-step instructions for tasks.
• Give visual cues or demonstrate tasks to encourage participation.
• Attempt written notes when spoken words seem confusing.

In the late stage of Alzheimer’s, the person may rely on nonverbal communication such as facial expressions or vocal sounds. The following communication techniques are helpful during this stage of the illness:

• Approach the person from the front and identify who you are.
• Encourage nonverbal communication. To understand what the person is saying, ask them to point or gesture.
• Use touch, sights, sounds, smells, and tastes as a form of communication.
Consider the feelings behind words or sounds. Emotions are often more important than what is being verbally expressed.
• Avoid talking down to the person and do not talk to others about the person as if they were not present; even those unable to speak may still be able to hear and understand.
• Use positive body language: relax, lean forward, and smile.
• Repeat your message as often as necessary.
• Distract the anxious or agitated person.
  (Alzheimer’s Association, 2021b)

Ethical lying, also known as therapeutic lying, is an essential skill to develop. Because dementia patients must be kept safe and avoid becoming agitated and in distress, less-than-truthful communication may be required in order to accomplish these goals. It can, in some cases, be kinder to ethically lie than to be completely honest.

For example, reminding the person that a loved one has died can make the person upset and sad. Ethical lying can also help to ease difficult situations, such as when the patient needs to stop driving due to safety concerns. Having the car “disappear” or suggesting it has been stolen can be a more compassionate way to manage what is often a devastating loss for the patient. This also allows the caregiver to be perceived as being on the side of the patient and not the one who is taking away the right to drive (Piedmont Healthcare, 2021).

Nonverbal communication, especially touch, between caregivers and those with Alzheimer’s is also important. As dementia progresses, nonverbal communication may become the main way a person communicates. Permission should be sought before touching. Those who may be unable to respond verbally may respond to a smile, kind gesture, or caring touch. Or, for example, some persons may need reminders during a meal to begin or continue eating by placing the spoon in their hand. However, it is also important to avoid sitting too close to the person or standing over them to communicate. Meeting the person at eye level is preferable whenever possible.

Consider that the person with dementia will read and interpret others’ body language, and sudden movements, tone of voice, or tense facial expression can upset or distress them. Make sure body language and facial expression match what is being spoken.

Visual prompts are also helpful for the person with dementia. These may include cue cards or a book with pictures a person can point at to communicate needs and wants.

Careful observation of the person’s facial expressions, eye contact or lack of eye contact, and body language can help the caregiver assess comfort or pain, anger, hostility, and misunderstanding. For example, increased motor activity and shaking fists suggest frustration or anger. Experience and patience over time help caregivers gain skill interpreting these nonverbal signals.

Persons with Alzheimer’s may ask the same question repeatedly because they do not remember the answer given. Respond to the question, and then try to distract the person with an activity or a change of topic or a change of scene. Activities or events should not be discussed with the person until they are about to happen; otherwise, the person may retain the idea that something is going to happen but forget the details, triggering more questions (Alzheimer’s Society, 2021a).

Supporting Basic Activities of Daily Living (ADLs)

To persons with Alzheimer’s disease, the tasks of daily living can be frustrating and overwhelming. During early Alzheimer’s disease, a person will begin to demonstrate a lack of attention to personal hygiene and grooming. They soon forget to bathe, change clothes, or use the bathroom. It is important to remember that support for ADL function must recognize the person’s functional ability and extent of cognitive impairment and provide person-centered care practices.

Activities of daily living are actually quite complicated when broken down into steps. Brushing one’s teeth, for example, requires recognition of the equipment used (toothbrush, toothpaste, sink) and remembering how to use each piece of equipment. In addition, the person must remember to find the equipment, put the toothpaste on the toothbrush, brush the teeth, and rinse the mouth.

Activity analysis (task breakdown) is useful in assisting persons with Alzheimer’s disease to function on their own. This entails determining the manual and cognitive activities involved in the completion of a task and organizing the task into manageable sections.

Verbal coaxing allows the person to perform the activity, and when they complete the task, the ability will be retained longer.

Providing cues such as labeling, placing equipment and clothes out in view, and offering demonstrations are all useful.

Establishing and maintaining a routine in ADLs helps the person retain learned skills longer and, therefore, need less assistance. Once the routine becomes automatic, the person no longer needs to stop and think what to do next. A fixed routine for eating and toileting also reduces the incidence of incontinence.

Offering choices can be helpful. With patients who refuse to attend to daily activities, such as bathing, it can be more effective to ask them “when” they would like to bathe instead of “if” they want to bathe.

BATHING AND ORAL CARE

It is common for persons with dementia to refuse to bathe. Bathing can be a challenge because persons with Alzheimer’s disease may be frightened by showers or they may resist the invasion of privacy that comes with bathing in front of a caregiver. They also may believe they’ve already showered or bathed, and so it is not reasonable to do so again. The following are creative ways of managing resistance:

• Avoid a discussion as to whether a bath is needed or not.
• To avoid agitation, if the person adamantly refuses to bathe, wait and try again later.
• Partial baths may be sufficient, as bathing or showering is not needed every day.
• Follow the person’s previous routines, including time of day and type of bathing preferred.
• Prepare the bathroom in advance.
• Always check the temperature of the water.
• Complete one step at a time, talking through each step.
• Be calm and gentle; don’t rush and hurry.
• Use a seat and hand-held shower attachment, which can be less frightening for the person.
• Introduce warm shower water gradually, starting at the feet and moving up the body.

Many people with dementia do not like to have their hair washed at all; there are dry shampoo products available that can be used when this is an issue. Use an electric razor for shaving to reduce the risk of cuts, especially if the person is taking blood-thinning medications such as warfarin.

Oral hygiene is often avoided by persons with dementia. They resist doing it, and they don’t want anyone else to do it for them. One solution is to use toothettes with diluted hydrogen peroxide solution. If the person consistently refuses to cooperate with oral care, fresh fruit such as apples can aid in cleaning the teeth (Piedmont Healthcare, 2021; Alzheimer’s Association, 2021b).

DRESSING

Self-esteem for a person with dementia is still important, and past grooming habits should be considered, as well as the person’s style and cultural clothing preferences.

• Try to maintain hairstyles, beards, and makeup the way the person liked to appear before developing dementia.
• To reduce the need to make choices, remove clothes that are seldom worn from the closet.
• Provide simple garments with large zipper pulls, Velcro fasteners, and few buttons. Pull-on pants and shirts are easier to put on.
• Use cardigan sweaters instead of pullovers.
• Lay out clothes in the order in which they will be put on.
• If needed, provide constant repetition of each step.
• Use nonskid shoes, such as washable rubber-sole shoes with Velcro fasteners, or slip-ons.

Inappropriate dressing may be one of the problems faced by caregivers. The person may no longer be able to coordinate colors, may put a shirt on backward, or may fasten buttons in the wrong order. Often persons will put on many layers of clothes or may want to remove clothing at inappropriate times.

If the person wants to wear the same clothes every day, duplicates can be made available while the other set is laundered. Many older persons, with or without Alzheimer’s, feel embarrassed when completely undressed, so removing and replacing one article of clothing at a time may work better (Piedmont Healthcare, 2021; Alzheimer’s Association, 2021b).

TOILETING

Caregivers must understand that the person with Alzheimer’s may no longer respond to signals such as the urge to void or defecate, may forget where the bathroom is located even if they’ve been in the same house for years, and may forget what to do when they do find the bathroom. Family members and other caregivers may feel awkward when assisting with toileting, although this usually subsides over time. A matter-of-fact, calm, and reassuring manner with the person with dementia is the best approach.

Other ways to assist with toileting include:

• Check the location of mirrors in the bathroom; people with dementia may confuse their reflection for someone else already in the room and not go in because they think the toilet is occupied.
• Know that the person may not recognize the toilet as the appropriate place to urinate. Remove other objects in the environment that can be mistaken for a toilet, such as large planters.
• A bedside commode or urinal may be helpful if getting to the bathroom is a problem, especially at night.
• Post a colorful sign on the bathroom door to help the person identify the room.
• Set a regular schedule for using the bathroom.
• Monitor mealtimes and foods consumed so as to predict when it’s time to use the bathroom.
• Respect the person’s privacy as much as possible.
• Assist with removing or adjusting clothing as necessary.
• Help the person get in the right position, if needed.
• Give cues if the person doesn’t know what to do.
• Talk through each step.
• Learn to recognize signs that the person may need to use the toilet. These might include fidgeting, restlessness, or pulling at clothes.
• Use a urinary alarm system for reminders.
• If incontinence occurs at night, avoid caffeine and fluids for 2–3 hours before bedtime.

When assisting the person to a public restroom, go together—don’t let the person enter the restroom alone. If a female caregiver is assisting a male dementia patient, use the ladies’ room and, if necessary, hand out cards to startled strangers stating the person has dementia. The same is true for a man caring for a woman. Many places now have all-gender bathrooms that may be utilized.

When the person suddenly loses bowel or bladder control, a medical evaluation should be done to rule out medical conditions such as urinary tract infection or medication side effects. When the person becomes incontinent, the following suggestions are helpful:

• Restrict fluid intake 2 hours before bedtime.
• Use incontinence aids such as disposable briefs and pads for beds and chairs or condom catheters for men at night.
• Dress the person in manageable clothing and consider eliminating underwear.

Constipation and fecal impaction can also cause a great deal of discomfort and lead to unwanted behavioral problems. It is extremely important for caregivers to continually assess and monitor the person’s bowel function. Avoid using laxatives, but encourage a high-fiber diet (Piedmont Healthcare, 2021; Alzheimer’s Association, 2021b).

EATING

Eating habits and behaviors change during the course of Alzheimer’s disease and may be caused by physiologic or psychological factors. Proper nutrition reduces the risk of constipation, dehydration, and vitamin deficiency. These conditions contribute to increased confusion and a decline in physical functioning.

In early-stage Alzheimer’s, depression related to the diagnosis may result in anorexia and weight loss. Persons may forget to eat or refuse to eat. Confusion and agitation may lead to extreme eating behaviors such as gorging. It is also important to monitor what the person eats and drinks, as some inappropriate items may be eaten, such as soap or other household items. All items that look like food, such as dog biscuits, flower bulbs, artificial fruits, etc., should be secured so they are not eaten.

In the later stage of the illness, profound memory loss interferes with the recognition of food, the need to eat, and the mechanics of eating. In addition, the person may become resistant to being fed. A nutritionist can make suggestions during this stage, and evaluation by a speech pathologist is indicated when the person begins to have trouble swallowing.

Physiologic factors affecting eating behaviors may include dental problems such as uncomfortable dentures, missing teeth, and/or periodontal (gum) disease. Neurofibrillary tangles and plaques can affect the function of the hypothalamus, which regulates appetite, hunger, and thirst signals. Many persons with Alzheimer’s lose their sense of smell, which affects taste and appetite. Some medications can also affect appetite.

In addition to depression, other psychological factors that affect eating behaviors include new and unfamiliar environments, which create confusion and agitation; distractions such as loud noises; unappealing food; and unusual odors such as urine. Such factors are quite variable, since individuals progress through the stages of the illness at their own pace and in their own physiologic manner.

Supporting the Eating Process

The following are helpful ways to assist the person with dementia to eat and to enjoy the process of eating:

• Provide a quiet, relaxing, and homelike atmosphere.
• Ensure the dining area is well-lit.
• Maintain familiar dining routines.
• Reduce distracting stimuli.
• Play soothing music during meals to decrease agitation.
• Facilitate social eating with others in the earlier stages of the disease; limit social stimulation in the later stage.
• Allow the person to choose mealtimes or adjust times based on agitation or disorientation.
• Offer food choices, but limit the number. Put only one utensil and one food in front of the person at a time.
• Offer culturally appropriate foods.
• Keep the table free of clutter.
• Use white dishes to help distinguish food from the plate, and use placemats of contrasting color to help distinguish the plate from the table. Patterned plates, bowls, and linens may be confusing.
• Provide bendable straws or lidded cups for liquids.
• To prevent overeating, limit access to food between meals, maintain a schedule, and monitor intake.
• Provide ample time to eat; do not rush the person.
• Ignore messy eating; it is more important for the person to eat than to be tidy.
• Sit level to the person, make eye contact, and speak with the person while assisting with eating.
• Model the sequence of eating, and remind the person to eat slowly and chew thoroughly. It may also be necessary to remind the person to swallow the food.
• Provide verbal prompts or physical cues if required to encourage the person to eat.
• Encourage independence when possible.
• Adapt foods (e.g., finger foods) and provide assistance when utensils can no longer be used.
• Provide functionally appropriate foods and beverages to match swallowing capability.
• Use adaptive devices/utensils as needed.
  (Piedmont Healthcare, 2021; Alzheimer’s Association, 2021b)

Maintaining Nutritional Well-Being

Weight loss is common among persons with Alzheimer’s, regardless of quality of care. Wandering, restlessness, and agitation expend energy and interfere with food intake. In mid- and late-stage Alzheimer’s disease, persons are unable to feed themselves or to chew and swallow the food when it is placed in their mouths.

The following steps can support the nutritional well-being of persons with dementia:

• Provide a balanced diet with a variety of foods, including vegetables, fruits, whole grains, low-fat dairy products, and lean protein foods.
• Limit foods with high saturated fat and cholesterol; limit fats such as butter, shortening, lard, and fatty cuts of meats.
• Offer nutrient-dense foods.
• Cut down on refined sugars, which contain calories but lack vitamins, minerals, and fiber. But in the later stages of Alzheimer’s, if loss of appetite is a problem, adding sugar to foods may encourage eating.
• Limit foods with high sodium and use less salt; use spices or herbs to season foods as an alternative.
• As the disease progresses, loss of appetite and weight loss may require supplements between meals.
• To maintain hydration, encourage fluids throughout the day or foods with high water content such as fruit, soups, milkshakes, and smoothies.
• Lack of physical exercise will decrease appetite. Encourage simple exercises such as going for a walk.

Monitoring the person’s nutritional status for weight loss and possible nutritional deficiencies also includes:

• Reviewing medications to check for drugs that may affect appetite
• Assessing for vision problems that may cause confusion at mealtime
• Assessing for depression

Ensuring Proper Swallowing

Those who are unable to swallow properly can become dehydrated and aspirate food, leading to aspiration pneumonia.

• Assess the person’s ability to swallow food. Remind them to swallow with each bite and show them how. Gently stroke the throat to promote swallowing, and at the end of the meal, check the person’s mouth to make sure food has been swallowed.
• Prepare foods so they are not hard to chew or swallow. Grind foods, cut food into bite-size pieces, or serve soft foods such as cottage cheese, scrambled eggs, mashed potatoes, or applesauce. Avoid foods such as popcorn or raw vegetables.
• Thicker liquids such as fruit nectars, milkshakes, and eggnogs are easier to swallow and less likely to cause choking. It may be necessary to use thickening agents in liquids in order to avoid aspiration.

A speech-language pathologist can assess the person’s needs and make recommendations (Alzheimer’s Association, 2021b; Piedmont Healthcare, 2021).

AMBULATING

Because Alzheimer’s and other types of dementia can affect areas of the brain that are responsible for movement and balance, problems with ambulation will slowly begin to occur. Persons with Alzheimer’s will typically have more difficulty seeing, processing information about the physical environment, and walking. Gait velocity decreases, variability of stride increases, and inability to multitask while walking occurs. All of these affect balance. A typical adjustment these people make is to change their gait so that they shuffle their feet instead of lifting them with each step.

Loss of balance is one reason why people with dementia are eight times more likely to fall than older adults without dementia. As a result, the incidence of hip fractures is higher, and recovering from one is extremely complicated for the person with dementia.

Balance is considered a skill, and as such, it can be improved. Almost any physical activity that safely gets a person moving is good for Alzheimer’s symptoms, but low-impact workouts that include light resistance activities may be particularly helpful in improving balance, in part by strengthening leg muscles and maintaining bone density.

Recent studies have shown the benefits of music-cued exercises for people with dementia. A twice-weekly, home-based physical therapy program of music-cued gait training may help some people with mild to moderate AD increase their ambulation speed.

Some other ways to help the person move around more easily can include:

• Making the home safer by continually picking up and putting away any obstacles on the floor that the person could trip over or need to steer around
• Keeping useful items within reach so the person does not need to strain to reach or use a stepping stool
• Keeping the house well-lit, especially at night
• Providing nonskid slippers and shoes

Canes and walkers may help maintain balance, but there are important issues to consider. Canes and walkers may actually increase the likelihood of falls—especially if used incorrectly—due to the increased complexity of using a device while walking, which requires the ability to multi-task. It is important for the patient to receive appropriate training in the use of any new assistive devices (preferably by a physical or occupational therapist) and for caregivers to consistently monitor usage for any difficulty or decline in the patient’s ability to use such devices, with or without assistance.

Novel surfaces may affect gait speed in those with very mild Alzheimer’s, such as walking on shiny surfaces that appear icy or slick. Waiting in a line, taking a few steps forward, and stopping can become confusing. Getting in and out of cars can take longer.

As the diseases progresses, many individuals can gradually lose the ability to walk. In later stages they may require actual physical support by a caregiver to walk. As the disease progresses, the ability to ambulate even with assistance may be lost. Eventually the person may need a wheelchair in order to feel and be safe.

In the later stages of severe dementia, the person loses the ability to sit up without assistance, requiring some form of external physical support such an arm rest, belt, or other device to keep from sliding down in the chair (Dementia Care Central, 2020b; Wittwer et al., 2020; Cohen & Verghese, 2019).

Supporting Instrumental Activities of Daily Living (IADLs)

Performing IADLs is the first ability to decline in persons with Alzheimer’s disease, while the ability to perform basic activities remains unimpaired. Instrumental activities of daily living that healthcare professionals may be asked to assess and to assist with include shopping and meal preparation, driving and other transportation needs, managing medications, and physical and social activities.

SHOPPING AND MEAL PREPARATION

In the early stages of Alzheimer’s, the person may begin to lose skills needed to shop for and prepare proper meals. Caregivers can assist the person to complete a menu and a shopping list. The list should be organized so that the items are divided up based on their location in the store to make it easier for the person to find things when shopping. Caregivers can accompany the person to the store if necessary.

It is important to keep the person involved in preparing food and drinks to help maintain skills and interest in eating and drinking. It is often helpful to break down meal preparation into individual tasks.

Other suggested activities for a person with dementia who is living alone or who needs extra support with meals include:

• Buying frozen or refrigerated ready-to-eat meals, which typically require little preparation and may help the person prepare food more easily
• Having meals delivered, such as through the Meals on Wheels program
• Shopping online if the person has difficulties going to the store
• Using simple notes about where certain foods are stored or placing pictures on cupboards or the refrigerator to assist the person in locating items
• Providing simple written instructions to help the person prepare, cook, or reheat food
• Planning meals that do not require any cooking, such as salads or sandwiches
  (Alzheimer’s Society, 2021a)

DRIVING AND TRANSPORTION NEEDS

Driving is a complex task requiring an ability to make and execute split-second decisions. Dementia affects the ability to process many different pieces of information at the same time. Therefore, driving and dementia do not go together.

Once the diagnosis of Alzheimer’s disease is established, healthcare professionals encourage the family to discuss the issue of driving with the person. Each state has its own laws and policies regarding physician reporting of driving with dementia to the Department of Motor Vehicles. Some states have mandatory and others have optional reporting policies, while some have no policy regarding the issue. Healthcare professionals should be aware of the regulations in their own state and local jurisdiction.

In the early stages of Alzheimer’s disease and other dementias, some people may still possess the skills necessary for safe driving. Most dementia is progressive, however, and symptoms such as memory loss, visual-spatial disorientation, and decreased cognitive function worsen over time and eventually require that the person give up driving. Warning signs of loss of ability to drive safely include:

• Getting lost in familiar areas
• Not observing traffic signs
• Making slow or poor decisions in traffic
• Driving either too slowly or too fast
• Getting angry or confused while driving
• Swerving into wrong lanes
• Confusing the accelerator and brake pedals
• Hitting curbs
• Incorrect signaling
• Riding the brake
• Poor judgment about distance

Research has suggested that people living with Alzheimer’s disease overestimate their driving abilities, but caregivers can more accurately identify unsafe driving. It may be difficult to determine at what point an individual can no longer drive safely.

An occupational therapist with special expertise in driving rehabilitation may be recommended to perform a driving assessment. However, even if someone with early dementia passes a driving assessment, continued driving is very closely monitored as the dementia progresses.

It can be very upsetting for the person to lose the independence that driving provides, and this may pose a dilemma for caregivers. However, it is generally accepted that those who refuse to quit driving even though they pose a hazard must be prevented from doing so. It is usually best to completely remove the person’s car once they are diagnosed with dementia. If it remains at the home, the vehicle should be permanently disabled and all car keys taken away.

When driving is no longer an option, it is important to make alternative transportation arrangements so that the person’s mobility and activity level are not unduly restricted. Rides can be provided by:

• Family
• Friends
• Neighbors
• Public transportation
• Taxis
• Senior and special needs transportation services
  (Piedmont Healthcare, 2021; FCA, 2021a)

MANAGING MEDICATIONS

Healthcare professionals working with patients with Alzheimer’s disease have an important role in helping family caregivers take on the task of medication management. Surveys have shown that family caregivers of Alzheimer’s patients may feel ill-prepared and unsupported by healthcare professionals. Healthcare professionals can be effective in easing their concerns, making recommendations by carefully reviewing all medications, providing guidance on how to simplify the medication regimen, and making recommendations for problems such as patient resistance in taking medications. Consulting with a pharmacist can also be helpful.

The following information can be taught to family caregivers regarding how to manage patient medications:

• Make taking medications a normal part of the daily routine by pairing it with specific events throughout the day, such as mealtimes.
• Use a pill box organizer and utilize a daily log of what medications are to be taken and when.
• Use simple language and clear instructions.
• Keep medications stored in a locked drawer or cabinet and not left out where the person can find them.
• Know that herbal therapies and over-the-counter medications can interact with prescribed medications.
• Understand how to determine if medications are effective. For example, the patient may not be able to articulate pain but may be calmer and more easily engaged after receiving pain medication.
• Know which medications are priorities as well as which medications can safely be skipped now and then when the patient is resistant to taking them.
• Give medications with meals, if allowed, and administer the most important medications first.
• Alternatively, with the prescriber’s approval, give medications in the morning, when agitation is less likely to occur.
• Make certain the patient is wearing glasses and hearing aids, if needed, to minimize confusion.
• If a person refuses to take the medication, stop and try again later.
• To cope with resistance, give medications covertly in food or drink. Covert administration can prevent exacerbation of a coexisting medical problem that could lead to the need for hospitalization (e.g., a patient with heart failure requiring diuretics).
• Create a list of distraction activities (e.g., listening to a favorite piece of music) to employ when the patient is resistant so that taking medication is more pleasant.
• Do not argue or try to convince the patient to take medications, since this can increase tension and agitation.
• Should resistance become routine, talk about medication options with the healthcare provider to see if some medications can be discontinued or given in an alternate form.
• Should the patient begin to have difficulty swallowing pills, request assistance from a healthcare provider to evaluate the form of medication being administered.
• Acknowledge that mistakes will happen and develop a plan for dealing with errors that does not place emphasis on blaming.
• Know the types of medication mistakes that can happen, such as giving the wrong dose, and when and how to notify the healthcare provider if this occurs.
• Have emergency numbers easily accessible. If a medication overdose is suspected, call poison control or 911 before taking any action.
  (Alzheimer’s Association, 2021b)

Healthcare providers should provide caregivers with a copy of the written care plan. It should reinforce the teaching points described above and include the phone numbers for prescribing healthcare professionals who can provide assistance. Reassess medication management goals of care every six months and document them clearly.

PROVIDING PHYSICAL AND SOCIAL ACTIVITIES

Persons with Alzheimer’s disease and other dementias may withdraw from activities, family, and friends. It is very important, however, to maintain these connections, as they reduce the effects of memory impairment and lead to a better quality of life. Social and cognitive stimulation can help maintain general well-being and prevent boredom and agitation in people with Alzheimer’s disease, especially in the early stage of the disease. Such stimulation can also encourage self-expression, lessen anxiety and irritability, make the person feel more engaged, and stir memories.

Walking provides good exercise and may relieve tension and stress. It may also help increase appetite. Simple exercises that encourage increased range of motion can help maintain optimal muscle functioning.

Keep things simple, as the confused person has a short attention span and may become easily frustrated when faced with multiple-step tasks or activities. Gardening, painting with water colors or finger paints, drawing, or coloring are good ways for confused people to express themselves.

Research shows that activities done in the past can still resonate with the older person who has advancing dementia. For example, a retired business executive may enjoy sitting at a desk with files filled with papers. Or someone who spent years as a homemaker may enjoy domestic activities like folding laundry or sweeping.

Keep activities on an adult level, though children’s toys can be usefully adapted in the later stages of dementia, e.g., women often respond positively to baby dolls. The person may enjoy playing familiar games such as cards, bingo, or board games, or doing simple jigsaw puzzles.

Musical activities are usually successful whether the individual is making the music themself or just listening. Music, including group sing-alongs, can help recall pleasurable moments from the past. Dance music from their youth might encourage the person to dance.

Plan social visits for times when the person feels best and in environments that are calm and quiet. Busy settings full of noise and people are often stressful for the person with dementia.

Books, newspapers, magazine articles, and family photo albums can serve as cues for reminiscence and provide an opportunity for family conversation in which the person may still participate.

Certain television programs can be of great interest. Animal programs are often much enjoyed by those with dementia. It is important to know that some TV shows can be upsetting, particularly violent, suspenseful, or horror shows, since the person may no longer be able to understand what is real and what is fiction. Many people with dementia regularly attend adult day programs specifically for those with dementia. It is common for the person to resist initially, but eventually they enjoy the new routine and social activities (Piedmont Healthcare, 2021).

Watching for Elder Abuse in Dementia Patients

People with Alzheimer’s disease or other cognitive impairment are at higher risk of abuse than other older adults. Up to 5 million older Americans are abused every year, yet one study estimated that only 1 in 24 cases of abuse are reported to authorities. The majority of victims are female, whereas the majority of perpetrators are male. Adult children of the victim are the most common perpetrators, followed by spouses and other family members. Perpetrators also may include nursing home, assisted living, and other facility staff. The annual loss by victims of financial abuse is estimated to be at least $36.5 billion. Older adults who have been abused have a 300% higher risk of death when compared to those who have not been mistreated (NCOA, 2021).

Types of abuse include:

• Physical: Causing physical pain or injury
• Emotional: Verbal assaults, threats of abuse, harassment and intimidation
• Neglect: Failure to provide necessities, including food, clothing, shelter, medical care, or safe environment
• Abandonment: An extreme version of neglect, in which a caregiver who has assumed responsibility for the person deserts or abandons them, most often in their own home or after a hospital stay, but also in public locations or with law enforcement
• Confinement: Restraining or isolated the person
• Financial: Misuse or withholding of the person’s financial resources to their disadvantage, or the advantage of, someone else
• Sexual: Touching, fondling, or any sexual activity when the person is unable to understand, unwilling to consent, threatened, or physical coerced
• Willful deprivation: Exposing the person with Alzheimer’s to the risk of physical, mental, or emotional harm by willfully denying the person of medication, medical care, food, shelter, or physical assistance
  (Alzheimer’s Association, 2021b; Samuels, 2020)

RECOGNIZING ELDER ABUSE

Although currently there is no gold standard for screening people with dementia for signs of abuse, healthcare providers are in a position to identify abuse.

Signs of physical abuse can include:

• Bruises
• Pressure marks
• Broken bones, sprains, or serious injury, especially without a reported fall
• Abrasions
• Burns

Signs of emotional abuse can include:

• Unexplained withdrawal from normal activities
• Sudden change in alertness
• Depression
• Frequent arguments between caregiver and the person
• Increased fear or anxiety
• Unusual changes in behavior or sleep

Signs of financial abuse may include:

• Fraudulent signature on financial documents
• Unpaid bills

Signs of neglect can include:

• Pressure injuries
• Unattended medical needs
• Poor hygiene
• Unusual weight loss
• Unsanitary living conditions

Signs of sexual abuse can include:

• Bruises around the breasts or genital area

(NCOA, 2021)

CAREGIVER STRESS AND ELDER ABUSE

One of the leading causes of elder abuse is caregiver stress and other problems that prevent caregivers from properly caring for the elderly. Factors such as substance abuse or financial problems can lead to caregiver abuse of the elderly in both residential and institutional care settings. It must be recognized that not all caregivers are ready or equipped to properly care for the elderly.

The excessive stress and demands on caregivers can cause some to suffer from anxiety, depression, and psychological disorders. As anxiety and stress increases, caregivers may start to feel helpless and trapped in their situation. Individuals have different ways of relieving this stress, and some turn to substance abuse or abuse of their elderly family members.

The responsibilities and demands of caregiving increase as the older adult person’s condition deteriorates. Abused elderly persons are likely to have special problems, such as incontinence, shouting, wandering, or symptoms of paranoid delusions. Some traits prevalent among elders might be stubbornness, hypercritical attitudes, and somatization (psychological distress expressed as physical symptoms). These may represent attempts by the person to deal with a new dependency role and can be extremely difficult for caregivers to cope with, thus prompting abusive responses.

Respite care for the person and support group and counseling for the caregiver can help to prevent elder abuse. In severe cases of abuse, it is usually necessary to separate the person from the caregiver, initiate legal action, and find a safe facility for the person.

Nursing home staff may also begin abusing the elderly under certain circumstances. Many facilities are understaffed, and that additional stress and exhaustion may contribute to abuse (Nursing Home Abuse Center, 2021; Piedmont Healthcare, 2021).

INTERVENING AND REPORTING ELDER ABUSE

Because older dementia patients usually cannot self-report instances of abuse, the responsibility for identification, intervention, and reporting rests largely with healthcare professionals, social service agencies, and police departments.

Factors involved in intervention include immediate care, long-term assessment and care, education, and prevention. Interventions vary from simple social service referral to the extreme of removing the person from the home.

Once suspected, elder abuse should be reported to Adult Protective Services. The National Center on Elder Abuse (NCEA) is a valuable tool in identifying state-specific resources to assist in reporting to the appropriate authorities.

Elder abuse is defined by state laws, but state definitions vary considerably from one jurisdiction to another. They contain many sections regarding who is protected, who must report, definitions of reportable behavior, requirements for investigation of reports, penalties, and guardianship.

Mandatory reporting laws for healthcare providers exist in all 50 states and the District of Columbia for confirmed cases, and 43 states mandate reporting of suspected cases. Thirty states have penalties for failing to report suspected elder abuse, and some require that licensed professionals who do not report elder abuse be reported to the appropriate licensing authority. All states have statutes providing immunity from civil or criminal liability to anyone who makes a report of abuse in good faith (Mills, 2019).

(For more information on reporting abuse, see “Resources” at the end of this course.)