Everyday Matters (How To Guides)
How to set up a safe home
Just as parents have to child-proof the home, caregivers
for people with AD need to take similar precautions. Scanning
safety tips in child-rearing manuals should provide some useful
ideas.
Creating a safe environment for the person with AD is really a matter of common sense. Anything that could cause physical harm (e.g., burns, cuts, scrapes, falls, poisoning) will need to be removed, deactivated, or put away. Take a walk through the person's home and do the following:
- Remove the clutter from hallways and stairs
- Lower the temperature on the water heater and install scald prevention faucets
- Install gates at the top of staircases, sturdy handrails along staircase walls, and grab bars in the bathroom near the toilet and in the tub area
- Install security locks on windows and sliding doors
- Remove furniture with sharp edges and replace rocking chairs or recliners with sturdier seating
- Lock away dangerous objects (e.g., power tools, knives, razors) or chemicals (e.g., insecticides, gasoline, solvents)
- Control the use of kitchen appliances; remove the stove knobs or ask the local utility company to install a switch to control the burners
- Do not wax the floors or use rugs that slip
First Aid
Despite the most careful planning, accidents can still happen. Remember to keep well-stocked, easily-accessed first aid kits throughout the person's home, along with strategically placed lists of emergency phone numbers.
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How to manage difficult behaviours: wandering
As Alzheimer Disease progresses, some people may develop behaviour
changes that can be trying for everyone. These behaviours include:
wandering,
combativeness,
distractibility, losing/hoarding/hiding possessions, and fixating.
In some cases, these behaviours slowly emerge over time and
worsen during the three stages of AD. All need to be managed
when they lead to potential danger or actual harm to the person
with AD or caregivers.
Wandering, which often involves getting lost, is common among people with AD. You can better manage wandering by the following:
- Writing directions and reminders on note cards that can be carried in a pocket. For example, at the top of one card, you might write “call home,” and your phone number.
- Buying the person with AD an identification bracelet with vital information plus the words “memory impaired” on the back.
- Registering the individual in the “Wandering Registry” sponsored by the Alzheimer Society of Canada. To register, or learn more about this service, call the Alzheimer Society of Canada at 1-800-616-8816 or visit them at www.alzheimer.ca
- Gradually introducing the person with AD to new places, making sure that initial stays are brief and are involving someone whom they know.
- Providing verbal orientation and reassurance, as well as visual cues (e.g., signs for the bathroom, night lights).
- Introducing exercise into the daily activity plan.
- Consulting a doctor about the use of medication.
- Considering nursing home placement if the wandering becomes completely unmanageable.
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How to identify resources
It’s possible to feel overwhelmed by caregiving responsibilities. If this happens to you, there are a number of places you can turn to for help. (If you do not feel comfortable making telephone calls in the presence of the individual with AD, enlist the assistance of a friend or family member who can look after them while you make the phone calls.)
First, decide what types of assistance you need. The help you are seeking might include the following:
- Emotional support or counselling
- Information on the Alzheimer Disease process
- Help with specific tasks (bathing the person with AD or driving them to medical appointments)
- Information on respite or adult day care
- Information on assisted living or nursing home facilities
- Financial planning assistance
- Legal assistance
Next, begin your resource search by calling the local chapter of the Alzheimer Society of Canada; their number should be in your telephone book. If you have difficulty reaching a local chapter, or if the services you require are not available at that branch, call the national branch at 1-800-616-8816 or visit them at www.alzheimer.ca.
You should also contact your local office on aging or seniors. Contact numbers for these offices are generally listed in the government listings of the telephone book, or under “Senior Citizens” in the blue pages.
Keep Records of Everything
A record or diary can be very helpful for caregivers, physicians and other healthcare professionals. It’s important to get into the habit of keeping accurate and legible records of everything you do.
Whenever you contact someone regarding AD it may be helpful to note the following:
- The name of person with whom you spoke
- The direct telephone number for person with whom you spoke, to facilitate follow-up
- The date and time of your call
- The questions you asked and the responses given
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How to plan daily activities
Establishing and maintaining structure in life is helpful in caring for someone with Alzheimer Disease. While the confusion that can come with AD never entirely disappears, it can be significantly reduced when a daily schedule of activities is created. Writing down a daily schedule will not only keep the caregiver on track, but also help others provide support more easily.
Each day at home will go more smoothly for the person with AD, as well as the caregiver, when a routine is established. It’s the routine, sometimes more than the activities themselves, that provides comfort.
When structuring the day, consider the following examples of activities:
Morning Activities:
- Wash, brush teeth, get dressed
- Prepare and eat breakfast
- Coffee and conversation
- Discuss the newspaper, make a craft item, or reminisce about old photos
- Take a break or have some quiet time
- Do some chores together
- Take a walk or play an active game
Afternoon Activities:
- Prepare and eat lunch, read the mail, clear and wash the dishes
- Listen to music, do a crossword puzzle, or watch television
- Do some gardening, take a walk, or visit a neighbour
- Take a short break or nap
Evening Activities:
- Prepare and eat dinner, and clean up the kitchen
- Reminisce over coffee and dessert
- Play cards, watch a movie, or give a massage
- Take a bath, get ready for bed, read a book, or look through a magazine
Frustration can be reduced by choosing activities that work with, rather than against, some of the habits that can emerge as AD progresses. Repetitive activities that might seem boring are actually comforting for people with AD.
People with AD can be kept busy and active by setting up opportunities for them to carry out simple tasks—to sweep, sort, fold, or write itemized lists — although the results may not be perfect.
Take Your Time
Time takes on new dimensions when AD is involved. Things can sometimes take much longer than they normally would. When you write out the daily schedule, add enough time to complete tasks. How much time is enough? You probably should increase every time period by 15 to 30 minutes. |
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How to cope with mealtime
It’s easy to become physically depleted and overly emotional from skipping meals or from poor nutrition. Loss of memory, language skills, and physical dexterity often lead people with Alzheimer Disease to lose weight.
Not everyone agrees that weight loss is a normal part of AD. Weight loss may also be due to:
- Clinical conditions other than AD such as depression, constipation, dental problems, or other significant medical problems.
- Social or environmental conditions such as a cluttered, noisy, or otherwise distracting dining atmosphere.
While weight loss is an important indication that something needs to be corrected, it’s also possible for someone to be overweight and malnourished at the same time. Every stage of AD requires strategies for handling potential food-related challenges.
Stage 1: Mild
Care level required: Minimal attention in the form of:
- Reminding the person with AD to eat.
- Preparing well-balanced meals on a schedule.
- Keeping healthy snacks available.
- Avoiding dishes with busy patterns and too much flatware.
- Serving meals in a quiet, uncluttered place.
- Participating in meal delivery programs.
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Stage 2: Moderate
Care level required: Close supervision in the form of:
- Limiting the number of food choices at one time.
- Cutting up food so that it’s easy to eat.
- Encouraging proper chewing and swallowing gently.
- Preparing and providing finger foods.
- Switching to drinking straws or a convalescent feeding cup to make drinking liquids easier.
- Checking the temperature of foods and beverages prior to serving.
- Encouraging healthy snacking.
- Ensuring proper hydration by providing liquids frequently.
- Supplementing the diet with liquid food supplements (if recommended by a physician).
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Stage 3: Severe
Care level required: Constant, round-the-clock assistance in the form of:
- Slowly spoon-feeding small amounts at a time.
- Eliminating foods that require chewing.
- Switching to thicker liquids that are easier to swallow.
- Considering the insertion of a nasogastric tube (that goes through the nose into the stomach) or a gastrostomy tube (that’s surgically inserted directly into the stomach) to ensure proper and constant nutrition.
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Special Diets
Just because someone has AD, it doesn’t mean he or she will no longer require or prefer a special diet. A nutritionist can help figure out how to maintain a balanced diet for someone with a chronic illness such as diabetes, heart disease, or hypertension; conditions such as lactose intolerance; or when ethical or religious factors forbid certain foods or food combinations.
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How to help the person with personal hygiene
In addition to needing help with routine activities
of daily living (ADLs) such as eating and dressing, people
with Alzheimer Disease may need help to maintain personal hygiene.
Regular personal hygiene activities include:
- Dental and mouth care
- Shaving
- Bathing
- Toileting
As AD progresses, it may also be necessary to provide:
Because these activities involve personal privacy and modesty, they can be stressful for the person with AD as well as the caregiver. The person with AD may feel frustrated during bathing and toileting, or may simply forget what to do. They may even be resistant.
It’s possible to reduce the fear level by:
- Giving simple, step-by-step instructions in a soothing voice.
- Decreasing frightening noises by running the water at less than full force and by waiting to flush the toilet.
- Creating a safe environment by using a shower or tub bench, putting a non-skid mat in the bathtub, using warm instead of hot water, and installing grab bars.
Caregivers can also protect dignity by:
- Using a towel to screen the person’s body during bathing and providing a warm terry cloth robe to put on afterward.
- Making sure that clothing and undergarments are easy to remove, and developing the presence of mind not to scold if there’s a loss of bladder and/or bowel control.
The stress level can be reduced by:
- Building on past routines.
- Creating a regular schedule for personal hygiene activities.
- Getting everything organized in advance. Collect the soap, toothpaste, washcloths, sponges, towels and clean clothes before heading for the bathroom.
Dentures
If the person with AD wears dentures, a dentist should check to ensure they fit properly if there’s been any weight loss. In general, it’s a good idea for the dentist to develop an oral hygiene routine that takes the complications of AD into consideration. |
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How to manage memory loss
One symptom of AD is memory loss, and people with this disease sometimes try to hide their forgetfulness and declining mental abilities. This is not malicious behaviour, but more likely due to fear and/or embarrassment. No one wants to admit to becoming “senile.” Events from a person’s youth may linger in the memory, while something that happened yesterday is forgotten. Or, the person with AD may remember some things and forget others — not on purpose, but because that’s how the disease affects the brain.
Ways to help such a person cope with everyday matters include:
- Establishing a routine that will reduce the likelihood of confusion or frustration.
- Creating and posting a list of daily activities.
- Labelling everyday items with sticky notes.
- Marking familiar routes with reflector tape to make nighttime visits to the bathroom and to the bedroom less problematic.
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How to deal with driving privileges
Dementia may eventually reach the stage where driving a car is hazardous to both the person with AD and everybody else. That means you have to persuade him/her to stop driving, an extremely difficult task since driving represents adult freedom to many people.
You might want to bring up the subject when she/he is still able to participate in decisions involving her/his welfare, keeping in mind that cognitively impaired persons are often very sensitive to criticism. Try to help them give up driving without loss of dignity. (“Let me drive so you can look at the scenery,” might be one way to introduce the subject.)
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How to manage incontinence
Some caregivers may eventually have to cope with an individual’s urinary or bowel (fecal) incontinence. This is not only unpleasant, but the person with dementing illness is also likely to resent your help. After all, people are brought up to regard bowel movement and urination as a private matter. An offer of assistance is likely to stimulate an outburst along the lines of, “I’m not a baby!”
It’s wise to consult a doctor if incontinence begins. Meanwhile, there are a number of things you can do, as follows:
- Keep a diary to discover if there’s a pattern or change in pattern (e.g., due to the addition of a new medication; or if the person with AD urinates immediately after getting up, or an hour after drinking beverages). This can help you “schedule” trips to the bathroom.
- Remember that the person with AD may have trouble expressing that he or she needs to go to the bathroom. Some individuals may also use nonverbal cues to indicate when it’s “time to go.”
- Get washable chair cushion covers, then slip them over a plastic bag to prevent the cushions themselves from being soiled.
- Buy the special apparel that is available for incontinent people.
- Make sure the bathroom is comfortable and that the person has a grab bar to hold on to while sitting on the toilet.
- Make every effort to refrain from reprimanding the person with AD when there’s an accident.
- Relay to a doctor information regarding changes in bowel or urinary habits as they may also signify a medical problem, such as a urinary tract infection.
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