Seniors experiencing a loss of autonomy
Caring for a senior with a neurocognitive disorder
If someone close to you is suffering from a neurocognitive disorder and you're wondering how to care for them properly on a daily basis, here are a few tips on the right things to do, depending on the person's abilities.
Providing care in a dignified and respectful manner
The person with a neurocognitive disorder is a full-fledged individual who has a history, a personality, and personal values, and therefore deserves to be treated with respect, dignity, and kindness.
They should have the best quality of life possible, and the care they receive must be adapted to their needs, habits, and desires, regardless of how the disease progresses.
The person also needs to be treated as an equal, and your relationship should be based on sharing and cooperation.
Encouraging autonomy
The person won’t necessarily lose their abilities overnight. With your help, they may be able to continue some of their everyday activities for a long time.
Your primary role is to offer them tools to help them perform certain tasks on their own. In other words, don't do things for them, but help them with every step if it's still possible.
You might find that encouraging their participation also reduces the potential for conflict between you and improves your relationship.
Here are a few suggestions to help you encourage the person's autonomy:
- Allow them to make their own choices, such as their clothes, meals, and daily activities.
- Adjust to their needs and abilities by monitoring their reaction. Don't forget that there are good days and not-so-good days.
- If the person needs more help than they let on, make sure they don't feel like a failure, and choose an activity you know they can do.
- Be patient and follow their pace; this will make it easier for the two of you to work together.
- Accept that everything won't be perfect.
There will come a time when the person with a neurocognitive disorder won’t be able to continue their activities on their own and will need your constant help.
To better prepare, you and the person together can complete the Guide des besoins et des habitudes de vie de la personne aidée - In French only (L’Appui).
Daily activities: How to help
As a caregiver, you’ll of course observe that the person with the neurocognitive disorder has feelings and responds to their environment, even if their disease has progressed and they have lost their abilities.
Difficulty getting dressed, memory loss, or the inability to complete a particular task can arouse anger, disappointment, or fear in the person with the disorder.
By listening to their wishes and being mindful of their abilities, you may be able to reduce their insecurities and frustrations, and even soothe their anxiety.
We recommend implementing a few strategies on a daily basis, to help make your days more enjoyable for the both of you:
- Adapt the person's activities to their current abilities.
- Stick to the basics on days when they are less cooperative.
- Establish a safe and easy routine for them to follow, bearing in mind their habits before the disease.
- Divide tasks into simple steps.
Getting dressed is not as simple as you may think, because it involves different steps and requires several skills. By taking the time and finding ways to make dressing easier, you can help the person become more independent.
For example, try suggesting a limited selection of clothes or reduce the options available in their wardrobe. You could also lay out clothing in the order it should be worn or choose easy-to-wear clothing.
As the disease progresses, the person might need your help with their personal care, for example to brush their teeth or take a bath.
A few oral care tips can help them maintain their dental hygiene: show them what to do, step by step, or suggest an electric toothbrush if they can tolerate the noise and the feel of it. You can also ask a dentist for additional tips.
Keep in mind that bathing is an intimate activity that should be a time to relax and unwind.
The person may become anxious or tense if the bathing environment is not appropriate.
Therefore, be sure to eliminate potential issues by asking yourself the following questions:
- What are the person's habits, and are they being respected?
- Does the person have a justifiable fear? For example, trouble identifying the depth of the water? Fear of slipping or of getting in or out of the bathtub?
- Has the person lost all desire to bathe or see to their personal care?
Making bath time easier means making the experience as pleasant, unhurried, and comforting as possible and keeping it a part of a stable and reassuring routine.
Meal time can be a source of frustration and misunderstanding in many respects for people taking care of a person suffering from a neurocognitive disorder.
Does the person close to you disturb you while you're preparing meals? Do they refuse to eat or seem confused by the food?
To help you better deal with this daily activity, here are some tips you can use, depending on the stage of the disease.
Does the person want to help you prepare the meal?
Involving the person in meal preparation will keep them busy and give them confidence in their abilities.
You simply need to:
- Provide one to two simple and precise instructions at a time
- Lower expectations and demands
- Adapt to their current abilities
- Encourage them to participate and congratulate them on their work
Is the person somewhat autonomous in the kitchen?
Here are a few tips to encourage their autonomy in the kitchen:
- Opt for easy-to-prepare meals
- Use memos to write down instructions for certain appliances and reminders to turn off hot appliances
- Identify the utensils to be used for cooking or meal preparation
- Place small notes at strategic points around the home or on the telephone to remind them to eat
- Use delivery and catering services such as Meals on Wheels. If the person lives alone, you can also request that a CLSC worker visit a few times a week to confirm that they have been eating well or that they have enough food in the refrigerator and that it has not expired.
Has the person lost their appetite or interest in eating?
Eating three meals a day at fixed times may not be ideal for the person with the neurocognitive disorder. Follow their pace and opt instead for small portions or healthy snacks several times during the day.
Does the person need help eating?
Make sure you have good eye contact with the person while you're feeding them and, most importantly, follow their pace so they don’t refuse the food.
If they get distracted, wait until they turn back to you before offering them another bite or slowly bring their attention back to you and continue feeding them. This will encourage cooperation.
Does the person no longer recognize the utensils?
You can opt for food items that are easily eaten with the hands: muffin-omelettes, sandwiches, raw vegetables and dip, cheese and crackers, hot meals served on a roll, etc.
Does the person refuse to eat or drink because of their incontinence?
Someone with a neurological disorder may have trouble controlling their bladder. If they are afraid of having an accident, they may avoid drinking water and become dehydrated. This can also occur if they suffer from fecal incontinence. In either case, it's a good idea to consult a doctor to get advice on the options available.
Taking the right dose of medication at the right frequency, at the right time, and in the right way can be very difficult for someone with a neurocognitive disorder. This can have repercussions on their health.
Place all the medications in the same location and keep an updated list of them. Pay attention to their side effects and inform the pharmacist of the slightest change in the person's health.
You can also add reminders to your telephone or memos to your agenda to periodically check the person's pill dispenser.
The person with the neurocognitive disorder may not be able to clean their home as they did before, but you can encourage them to perform certain tasks on their own, with a little help. For example, they can:
- Dry the dishes
- Dust
- Water the plants or do gardening
- Pick up the newspaper or the mail
As a neurocognitive disorder progresses, the person's ability to stand, walk, react quickly, or correctly perceive their environment can deteriorate.
Over time, you may note that the person needs help to:
- Walk
- Sit down on or get up from a chair or an armchair
- Get out of bed
- Get in and out of the bath
- Get up off the ground after a fall
- Get in or out of a vehicle
Make sure that the person's environment is safe to protect them from injury. You can also learn a series of safe movements and techniques to prolong their autonomy and help them move around.
Under certain conditions, someone in the first stages of a neurocognitive disorder can drive for a while, but they must be assessed regularly by people in their immediate circle, or by a health professional, a doctor, or an occupational therapist.
Doing different activities stimulates the cognitive functions; it is also an opportunity for both of you to enjoy yourselves. For example, you can play board games or online memory games, look at photo albums, read a book together, etc.
All you need to do is find activities adapted to the person's pace, taste, and abilities.
Physical exercise can also be very beneficial to the person's health. It can prevent falls, improve their sleep, increase their appetite, or increase their self-esteem.
When doing physical activities with a person with the neurocognitive disorder, make sure they can complete the exercises safely. Here are a few useful tips to help them get active.
Neurocognitive disorders can significantly affect a person’s normal sleep pattern.
The person may have trouble falling asleep at night or going back to sleep. They may develop a habit of sleeping during the day, or they may become very restless in the afternoon, which is called "sundowning".
To encourage stable sleep-wake patterns, make sure lighting is adequate while the person is awake. For example, avoid keeping curtains closed all day and turn on the lights in the evening.
Here are a few things to do to ensure the person is as comfortable as possible once they start having trouble falling asleep:
- Keep the room comfortable (preferred temperature, dim lighting, comfortable bed, etc.)
- Keep the routine stable, ensuring a fixed schedule with light meals in the evening
- Obtain information about medications and their effects (some medications can disrupt sleep)
- Encourage physical exercise and good nutrition (avoiding alcohol, caffeine, and nicotine)
If you're concerned or if the problem seems to be getting worse, see a doctor for an assessment.
The importance of establishing a routine...
Over the course of a day, the person with a neurocognitive disorder may experience moments of lucidity interspersed with moments of confusion. They may also forget appointments, feel anxious about certain activities, etc.
Setting routines and reminders may help them:
- Reduce anxiety
- Know what to expect
- Increase their autonomy
- Foster a more trusting relationship with you
- Structure their days and avoid forgetting appointments or their medication
You can use the following strategies on a daily basis:
- Follow the routine the person is used to
- Follow the order they like to perform their tasks or activities (this will reassure them)
- Use checklists and tips to give them reminders such as notes, labels, or even pictures if they have difficulty reading
- Use an alarm as a reminder
- Divide tasks into several steps
...and having a game plan for emergencies
Planning for emergencies can be an effective way to reduce anxieties.
By gathering all the important information, you will also be better able to respond if the person has an accident or if there's a change in their health or in yours.
Here are few examples of information to keep on hand:
- A list of medication and vital information about the person's health
- Their health insurance card number
- Names, addresses and telephone numbers for doctors, hospitals, and clinics
- Their schedule of appointments with doctors and specialists
- An updated list of contact information for service providers and programs the person takes part in
- The names and telephone numbers of loved ones and friends to be contacted in case of an emergency
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The information presented on this page is not a legal opinion or legal advice. This page explains in a general way the law that applies in Quebec. To obtain a legal opinion or legal advice on your personal situation, consult a legal professional.