MANAGEMENT AND CARE FOR THE PERSON WITH ALZHEIMER’S DISEASE

Supportive care focuses on preventing and relieving suffering and on providing the best quality of life for patients and their families facing serious illness.

Providing a Safe Home Environment

As dementia progresses, physical and social environments prove ever more difficult for the person. A safe environment should include:

Simple and consistent furniture arrangement, lack of clutter
Removing loose rugs and taping down carpet edges to avoid falls
Extra lights and night lights in entryways, doorways, stairwells, hallways, and bathrooms
Seating near the bed to help with dressing
Closet shelves at an accessible height to prevent shelf climbing and objects falling from overhead
Securing book shelves, cabinets, and large TVs to prevent tipping
Safely storing old and current medications
Hiding stove gas valve or circuit breaker and removing knobs from the stove
Disconnecting the garbage disposal
Removing any toxic plants and decorative fruits to avoid being mistaken for food
Removing small appliances near water sources
Installing locks out of sight and deadbolts high or low on exterior doors to prevent wandering
Removing locks in bathrooms or bedrooms
Disabling or removing guns or other weapons
Regulating water temperature with an automatic thermometer on plumbing
Providing a walk-in shower and/or grab bars in the shower or tub and vanity
Applying textured, nonslip stickers to slippery surfaces
Securely locking up cleaning products, chemicals, and other potentially hazardous items
Locking the laundry room door
Fitting appliances with automatic cut-off mechanisms
Replacing long electrical cords on appliances with coiled or retractable cords
(Alzheimer’s Association, 2021a)

Supporting Basic Activities of Daily Living (ADLs)

To persons with Alzheimer’s disease, the tasks of daily living can be frustrating and overwhelming, as they are often quite complicated when broken down into steps.

Supporting these tasks involves:

Activity analysis to determine the manual and cognitive activities involved in the completion of a task, and organizing the task into manageable sections
Verbal coaxing to allow the person to perform the activity and retain the ability longer
Providing cues such as labeling, placing equipment and clothes out in view, and offering demonstrations
Establishing and maintaining a routine so that the person no longer needs to stop and think what to do next (e.g., a fixed routine for eating and toileting to reduce the incidence of incontinence)
Offering choices for those who refuse to attend to daily activities, such as asking them “when” instead of “if” they want to bathe

BATHING AND ORAL CARE

Bathing and oral care can be challenging. The following are ways of managing resistance:

Avoid a discussion as to whether a bath is needed or not; if the person adamantly refuses to bathe, wait and try again later.
Partial baths may be sufficient.
Follow the person’s previous routines.
Prepare the bathroom in advance.
Complete one step at a time, talking through each step. Be calm; don’t rush.
Use a seat and hand-held shower attachment, which can be less frightening.
Check the temperature of the water.
Introduce warm shower water gradually, starting at the feet and moving up the body.
Use dry shampoo products for those who resist hair washing.
Use electric razors to reduce risk of cuts.
Use toothettes with diluted hydrogen peroxide solution for oral care.
Provide apples to help clean the teeth.
(Piedmont Healthcare, 2021; Alzheimer’s Association, 2021a)

DRESSING

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

Maintain the person’s preferred hairstyle, beard, and makeup.
Remove clothes that are seldom worn from the closet.
Provide simple garments with large zipper pulls, hook-and-loop fasteners, few buttons, and pull-on pants and shirts.
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.
Provide nonskid shoes, such as washable rubber-sole shoes and shoes with hook-and-loop fasteners or slip-ons.
If the person wants to wear the same clothes every day, provide duplicates.
(Piedmont Healthcare, 2021; Alzheimer’s Association, 2021a)

TOILETING

A matter-of-fact, calm, and reassuring manner with the person with dementia is the best approach to toileting. Ways to assist may include:

Check mirror location in the bathroom to avoid confusion that there is someone else occupying the room.
Know that the person may not recognize the toilet as the appropriate place to urinate; remove objects in the environment that can be mistaken for a toilet.
Provide a bedside commode or urinal if getting to the bathroom is difficult, especially at night.
Post a colorful sign on the bathroom door to identify the room.
Set a regular bathroom schedule.
Monitor mealtimes so as to predict when to use the bathroom.
Respect the person’s privacy.
Assist with removing or adjusting clothing.
Help the person get in the right position.
Give cues and talk through each step.
Learn to recognize signs that the person may need to use the toilet.
Use a urinary alarm system for reminders.

When assisting the person to a public restroom, go together. If a caregiver is assisting a dementia patient of the opposite sex, use the caregiver gender’s room and, if necessary, hand out a card to others stating the person has dementia.

When the person loses bowel or bladder control, a medical evaluation should be obtained. When the person becomes incontinent, the following suggestions are helpful:

Restrict fluid and caffeine intake 2 hours before bedtime.
Use incontinence aids (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 cause a great deal of discomfort and lead to unwanted behavioral problems. Avoid using laxatives, but encourage a high-fiber diet (Piedmont Healthcare, 2021; Alzheimer’s Association, 2021a).

EATING

Proper nutrition reduces the risk of constipation, dehydration, and vitamin deficiency, all of which can increase confusion and decrease physical functioning.

In early-stage Alzheimer’s, depression 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 important to monitor what the person eats and drinks to avoid inappropriate items being eaten.

In the later stage of the illness, profound memory loss interferes with the recognition of food, need to eat, and mechanics of eating. The person may become resistant to being fed. A nutritionist can make suggestions. Evaluation by a speech pathologist is indicated when the person has 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, affecting taste and appetite. Medications can also affect appetite.

In addition to depression, other psychological factors that affect eating behaviors include new and unfamiliar environments, distractions such as loud noises, unappealing food, and unusual odors.

Supporting the Eating Process

Helpful ways to assist the person with dementia to eat and to enjoy the process of eating include:

Provide a quiet, relaxing, homelike, and well-lit atmosphere.
Reduce distracting stimuli; keep the table free of clutter.
Play soothing music.
Facilitate social eating in the earlier stages of AD; limit social stimulation in later stages.
Maintain familiar dining routines; allow the person to choose mealtimes.
Adjust mealtimes based on agitation or disorientation.
Offer food choices, but limit the number; offer culturally appropriate foods.
Put one utensil and one food in front of the person at a time.
Use plain white dishes (to help distinguish food from the plate) and placemats of contrasting color (to help distinguish the plate from the table).
Provide bendable straws or lidded cups for liquids.
Limit access to food between meals, maintain a schedule, and monitor intake.
Provide ample, unrushed time to eat.
Ignore messy eating.
Sit level to the person, make eye contact, and speak with the person while assisting with eating.
Remind the person to eat slowly, chew thoroughly, and swallow the food.
Provide verbal prompts or physical cues if required to encourage eating.
Encourage independence.
Adapt foods and provide assistance when utensils can no longer be used.
Provide appropriate foods and beverages to match swallowing capability.
Use adaptive devices/utensils as needed.
(Piedmont Healthcare, 2021; Alzheimer’s Association, 2021a)

Maintaining Nutritional Well-Being

The following steps can support nutritional well-being:

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.
Offer nutrient-dense foods.
Reduce sugars, but in the later stages of Alzheimer’s, if loss of appetite is a problem, add sugar to foods to encourage eating.
Limit high-sodium foods and use less salt.
Provide supplements between meals for loss of appetite and weight loss.
Encourage fluids throughout the day and foods with high water content (e.g., fruit, soups, milkshakes, smoothies).
Encouraging simple exercises such as walking to increase appetite.

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

Review medications for drugs that may affect appetite.
Assess for vision problems that may cause confusion at mealtime.
Assess 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 all food has been swallowed.
Grind foods, cut food into bite-size pieces, or serve soft foods (e.g., cottage cheese, scrambled eggs, mashed potatoes, applesauce). Avoid foods like popcorn or raw vegetables.
Provide thicker liquids, which are easier to swallow and less likely to cause choking. If needed, use thickening agents in liquids.

A speech-language pathologist can also assess the person’s needs and make recommendations (Alzheimer’s Association, 2021a; 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, ambulation problems will slowly begin to occur. Loss of balance is one reason why people with dementia are eight times more likely to fall than older adults without dementia.

Almost any physical activity that safely gets a person moving is good for Alzheimer’s symptoms, and low-impact workouts that include light resistance activities may be particularly helpful in improving balance. A twice-weekly, home-based physical therapy program of music-cued gait training may help some with mild to moderate AD increase ambulation speed.

Other ways to help the person move around more easily and avoid falls include:

Remove any obstacles on the floor that the person could trip over or otherwise need to steer around.
Keep useful items within reach to avoid straining to reach or using a stepping stool.
Keep the house well-lit, especially at night.
Provide nonskid slippers and shoes.

Canes and walkers may actually increase the likelihood of falls, especially if used incorrectly. Provide appropriate training in the use of any new assistive devices (preferably by a physical or occupational therapist). 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, 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.

In later stages, the person may require physical support in order to walk, and they may eventually lose the ability to ambulate, even with assistance. At this point, they may require a wheelchair. In the later stages of severe dementia, the person may also lose 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, 2020; 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, even while their ability to perform basic activities remains unimpaired.

SHOPPING AND MEAL PREPARATION

The person may begin to lose skills needed to shop for and prepare proper meals. For those living alone or who need extra support with meals:

Assist the person to complete a menu and a shopping list.
Accompany the person to the store if necessary or shop online.
Buy frozen or refrigerated ready-to-eat meals or have meals delivered.
Use simple notes about where certain foods are stored or place pictures on cupboards or the refrigerator.
Provide simple written instructions for cooking or reheating food.
Plan meals that do not require any cooking.
(Alzheimer’s Society, 2021)

DRIVING AND TRANSPORTION NEEDS

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. Healthcare professionals should be aware of the regulations in their own state and local jurisdiction.

When driving is no longer an option, rides can be provided by family, friends, neighbors, public transportation, taxis, or senior and special needs transportation services (Piedmont Healthcare, 2021; FCA, 2021a).

MANAGING MEDICATIONS

Healthcare professionals can review all medications, provide guidance on ways to simplify medication regimens, and make recommendations for managing resistance. Consulting a pharmacist can also be helpful.

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

Make taking medications part of the daily routine by pairing it with specific events.
Use a pill box organizer and a daily log of what medications are to be taken and when.
Use simple language and clear instructions.
Keep medications stored in a locked location.
Know that herbal therapies and over-the-counter medications can interact with prescribed medications.
Understand how to determine if medications are effective.
Know which medications are priorities as well as which medications can safely be skipped when the patient is resistant to taking them.
Give medications with meals, if allowed, and administer the most important medications first.
With prescriber’s approval, give medications in the morning, when agitation is less likely to occur.
Make certain the patient is wearing their glasses and hearing aids.
If a person refuses to take the medication, stop and try again later.
To cope with resistance, give medications covertly in food or drink.
Create a list of distraction activities to employ so that taking medication is more pleasant.
Avoid arguing or trying to convince the patient to take medications.
Should resistance become routine, talk about medication options with the prescriber to see if some medications can be discontinued or given in an alternate form.
Request healthcare assistance if the patient has difficulty swallowing pills.
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, 2021a)

Healthcare providers should provide caregivers with a copy of the written care plan and reinforce the teaching points described above.

PROVIDING PHYSICAL AND SOCIAL ACTIVITIES

Persons with Alzheimer’s disease and other dementias may withdraw from activities, family, and friends. Social and cognitive stimulation may help maintain general well-being and prevent boredom and agitation in people with Alzheimer’s disease. 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. Gardening, painting with water colors or finger paints, drawing, or coloring are good ways for confused people to express themselves.

Activities common from their past can resonate with the older person with advancing dementia. For example, a retired business executive may enjoy sitting at a desk with files filled with papers. Keep activities on an adult level, although children’s toys can be usefully adapted in the later stages of dementia. The person may enjoy playing games such as cards, bingo, board games, or simple jigsaw puzzles.

Music can help stir pleasurable memories. Dance music from their youth might encourage dancing.

Plan social visits for times when the person feels best and in environments that are calm and quiet.

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 interest, but avoid violent, suspenseful, or horror shows.

Many people with dementia regularly attend adult day programs specifically for those with dementia (Piedmont Healthcare, 2021).