Alzheimer’s and Dementia Care

If a client requires assistance with one or more activities of daily living (ADLs), then the client would require assistance from a PSW.

• Encourage the client to use aids such as glasses and hearing aids.
• Speak slowly, clearly, and loudly enough to be heard, but in a low-pitched tone.
• Do not yell at the client to make yourself heard.
• Provide plenty of lighting in the home to avoid or limit sun-downing behaviour.
• Make sure the client is warm. You may feel very warm, but often a client with Alzheimer’s has an internal body temperature that is much cooler than your own.
• Reduce the noise level in the home and environment.
• Provide a clock and a calendar. Make sure to remind the client of the time, date, and day of the week. Repeat reminders may be needed throughout the day.
• Often, clients with Alzheimer’s will not take in enough fluids; dehydration can increase confusion, so it is important to provide clients with adequate fluids.
• Do not make changes in the client’s home. Change for clients experiencing any type of confusion is upsetting and can increase their confusion and agitation.
• Explain everything that you are going to do with them very slowly and clearly. Try to include them in the decision-making process if possible. You may have to explain things to them more than once.
• Maintain a regular routine.
• Follow the plan of care set out for the client.
• Give frequent praise, reassurance, and comfort through positive reinforcement.
• Protect the client from wandering.
• Get the client involved in a safe activity such as sweeping, winding balls of yarn, folding laundry, etc.
• As the disease progresses, clients will require total assistance for most activities of daily living.

Early Stage of Dementia/Alzheimer’s

The disease at this stage is mild. Symptoms may include mild short-term or recent events, memory loss, disorientation, difficulty with learning, short attention spans, fluctuation in confusion from one day to the next, word searching for the right word, poor judgment, and bad decisions. Mood and emotions will fluctuate; the client may blame others for mistakes and exhibit symptoms of depression, irritability, or defensiveness. The client may express disinterest in everyday activities, such as grooming, and could appear more restless or passive than normal. Remember, every client is an individual and the progression of the disease will vary from client to client. In the early stages of the disease, the client may continue to be able to handle their own activities of daily living (ADLs), with queuing and reminders.

Middle Stage

At this stage, symptoms from the early stage intensify, and losses become too severe to ignore. Short-term memory loss may now evolve into long-term memory loss, with the client being unable to remember their personal history. The client may no longer recognize family and friends and may exhibit increased disorientation and wandering. They may become more restless and may continuously pace. The client may experience a loss of impulse control, such as using profanity, increased anxiety, paranoia, and suspicion. Personality changes and even violent behaviour may start to occur. Repetition of behaviour and saying the same thing over and over are also common. Physically, the client may experience greater difficulties performing basic activities of daily living such as toileting, becoming incontinent with bowel and bladder functions, bathing, feeding, and dressing themselves. The client may develop a fear of bathing (spatial-visual problems) and refuse to change clothing. They may experience a disruption in their sleeping patterns, have large fluctuations in their appetite, and have language difficulties. Most clients at the middle stage of the disease would require assistance from a PSW.

Late Stage

The PSW will provide a large amount of care for a client in the late stages of Alzheimer’s disease, along with a team of other care providers, including but not limited to family members and friends, nurses, and physicians. During the late stages, most clients become totally dependent, and they will have lost their ability to communicate with or recognize family and friends. The client is usually totally incontinent and may have lost their gag reflex. They can also become unresponsive and bedridden. The client may have difficulty eating or swallowing, may lose control of bodily functions, and may experience pain and seizures. This stage will end with the client’s eventual death. The care of this client would need to be more intense, with many more caregivers involved, as often 24/7 care is required as they become bedridden.

• The brain is an important and complex organ that helps us understand what is happening around us, provides us with our language skills, and guides us in how to act in specific situations.
• Changes to a person’s behaviour can be a sign of damage to their brain.
• A client’s responsive behaviours refers to how their actions, words, or gestures represent their way of responding to something negative, frustrating, or confusing in their social and physical environment. 
• These changes in behaviour can be upsetting and frustrating for both the client with dementia and for those around them.
• One of the most common forms of responsive behaviours encountered in the community, stems from dementia.

Examples of Responsive Behaviours

Responsive behaviours are often the result of changes in the brain affecting memory, judgment, orientation, and mood. These behaviours include, but are not limited to, the following:

Understanding responsive behaviours

To help you understand why a person is behaving a certain way, remember that:

• All behaviour has meaning.
• Behaviour is usually a response to something.
• Behaviours are complex.

You need to consider whether the behaviour is upsetting, or a risk for the person or others. If not, consider whether or not anything needs to be done.

The Disease

Changes in a client’s behaviour can be a sign of damage in a specific area of the brain. Dementia can lead to damage to the brain and loss of communication skills. As dementia progresses, a client may no longer be able to verbally communicate their basic needs.

Physical Discomfort and Pain

If a client with dementia is unable to use words to communicate their pain, they may start using behaviours as a way of communication. Pain may be present as part of a chronic condition, such as arthritis, or due to something new, like a recent fracture.

Often, treating underlying pain reduces these responsive behaviours.

Depression, Delusions, and Delirium

People may also experience depression, delusions (false beliefs about someone or something), or delirium (intense episodes of confusion). Clients experiencing depression, delusions, or delirium may respond with behaviours that others may find difficult to understand. For example, a person with dementia may have the delusion that their food is being poisoned. This may result in the person pushing food away or refusing to eat, even though they are hungry.

Inability to Understand What is Going on Around Them

A person with dementia may have a hard time recognizing their physical surroundings and get lost. They may not understand what to do in a particular setting, such as how to use the toilet. Changes in a client’s senses (such as sight and hearing), can also make it difficult for the person to understand what is happening, which may cause anxiety, anger, withdrawal, or self-protective behaviours.

Inability to Understand or Perform a Task

People may not understand what they are being asked to do and, at times, may be overstimulated, understimulated, or feel rushed. This may cause frustration or boredom, which may result in a responsive behaviour, like hitting or refusing to accept help.

All behaviour has a meaning. A trigger is something in the internal or external environment that may cause a client with dementia to respond with a behaviour. First, consider whether the behaviour is upsetting or a risk for the person or others. If it is, then ask yourself, “What is the reason or underlying cause behind this behaviour?” A person exhibiting responsive behaviour may no longer be able to verbally communicate their needs. Behaviours are a way for these clients to communicate their needs to the people around them, which is why it is important to pay attention to your client to determine how you can best support them. Here is a list of potential triggers that could cause a responsive behaviour:

Potential Physical Triggers:

• Pain
• Hunger
• Thirst
• Needing to use the toilet
• Sleep disruption

Potential Psychological Triggers:

• Depression
• Loneliness
• Anxiety
• Fear

Potential Environment Triggers:

• Clutter or crowds
• Overstimulation or under-stimulation
• Unfamiliar environment or routine
• Lighting
• Inconsistency among caregivers

It is important to take a client-centered approach to understanding and responding to responsive behaviours. Consider what you know about the client’s life story and roles. Do they have a history of trauma? What are their likes and dislikes? What are their cultural and spiritual needs?

An individualized care approach is critical to success. Please note that these strategies may not work for everyone. Caregivers must be “detectives,” searching for clues to what is causing the difficult behaviour and then finding suitable strategies to manage it. Use the points below to guide you on how to handle a client’s responsive behaviours:

Treat the Physical Problems.

• For example: Make sure hearing aids, glasses, or dentures are available. Offer the client food or fluids. Support the client with routine toileting. Observe the client for any signs of pain or discomfort.

Look at the Environment.

• For example: Reduce clutter, minimize noise. Place signs to help orient them to the environment (for example, put a picture of a toilet on the bathroom door; post their name on the door of their room). Provide a calendar for reorientation.

Use Distraction.

• For example: Involve the client in an activity they might enjoy, such as music, a picture book, or a simple game. Take the client for a walk in approved areas.

Ease Loneliness and Anxiety by Providing Reassurance and Gentle Touch.

• For example: Speak calmly and avoid arguing. Do not confront a false belief if it is harmless. Instead, validate the person’s feelings.

Maintain a Consistent Daily Routine.

• For example: Avoid changes to the client’s routine and the environment. Clients with a high number of service hours should be acquainted with more than one PSW who is regularly scheduled throughout the week. Duties should be performed in the order that the client is comfortable with.

Support their Independence as Much as Possible.

• For example: Adapt tasks to meet the client’s capabilities. Continue to encourage the client to participate in their personal care routine. Speak to your CSS for suggestions on how to safely adapt tasks.

Agitation

• Give the client something to hold.
• Distract the client with music, a picture book, or a simple game.
• Talk about happy moments in the client’s life.
• Is it too noisy or bright? Is the client overstimulated (too many things happening at once), understimulated (bored or not engaged), or tired.
• Report the client’s behaviour to the CSS to help identify triggers and strategies that help calm the client down.
• Depending on the severity of the client’s behaviour, the CSS may have to recommend or advocate for a full medical assessment to rule out infections, treatable conditions, and to review medications.
• Do not ask the client to stop.
• Do not tell the client to calm down.
• Do not raise your voice.

Wandering

• Ask the client if there is anything that they need. For example, are they looking for the washroom? Is the client thirsty or hungry?
• If it is unsafe for the client to leave the home, consider putting their coat out of sight.
• Encourage and support the client with recommended exercises if the duty is in the care plan.
• Report the client’s behaviour to the CSS to help identify triggers and strategies that help calm the client down.
• The CSS may have to advocate for a Physiotherapist (PT) to prescribe safe exercises for the client.
• Do not ask the family or nurse to give the client a sleeping pill before bed, which results in the client sleeping most of the next day.

Sexual Behaviours

• Take the client to their room, close the door, and give the client privacy.
• Offer an activity to occupy the client’s hands and mind, like sorting screws from washers, folding washcloths, etc.
• You can be creative and get the client involved in any activity that would be safe for the client’s participation.
• Report the client’s behaviour to the CSS to help identify triggers and strategies that help calm the client down.
• Discuss with your CSS different activities for the client to focus on that would be safe and keep the client engaged.
• Do not yell at the client to stop.
• Do not try to explain why this is inappropriate.
• Do not make the client feel upset or embarrassed.
• Do not restrain the client’s arms.
• Do not get angry with the client.
• Do not argue with the client.

Hallucinations

• Increase the lighting to remove shadows that could be misinterpreted.
• Distract the client with music, exercise, or photos.
• Make sure the client is wearing their glasses or hearing aids and that batteries are working if they use these assistive devices.
• Report the client’s behaviour to the CSS to help identify triggers and strategies that help calm the client down.
• The CSS may have to recommend or advocate for a full medical assessment to rule out infections, treatable conditions and to review medications. Routine vision and hearing tests are also recommended.
• Do not tell the client that there is nothing there.
• Do not get angry with the client.
• Do not argue with the client.

Paranoia

• Validate the client’s fear by using phrases such as, “That must be frightening.”
• Validate the client’s feelings.
• Look for the “stolen” object to help alleviate their distress.
• If paranoia continues, have similar looking objects available as replacements.
• Report all incidents or suspicions to the CSS to help identify triggers and strategies that help calm the client down.
• The CSS may have to recommend or advocate for a full medical assessment to rule out infections, treatable conditions and to review medications.
• The CSS must also investigate suspicions that could be true, as the client could be a victim of abuse.
• Do not argue with the client.
• Do not explain that no one has stolen the object and, just like last time, the client lost it.

1. Identify the problem

• Ask yourself if the client’s behaviour is really a problem, or just an inconvenience.

2. Analyze the problem

• Use a client-centered approach to better understand what the client may be trying to communicate:
  • What factors might be contributing to the client’s reaction?
  • What is happening and why?
  • Could the client be reacting to something or someone in the environment?

3. Consider possible strategies

• Think about what you learned about causes, triggers, and handling responsive behaviours to problem solve; is the client hungry or thirsty? Is the client tired or bored? Is the TV or radio too loud? Etc..
• Consult with your CSS to report exactly what you observed about the client’s behaviour and discuss potential strategies.
• Keep in mind that your CSS may have to consult with the client’s family or medical team to determine other coping strategies to incorporate into the client’s care.

4. Take action

• Take initiative to try and solve problems within your scope as a PSW. Depending on the situation, take action to try to calm the client’s behaviour. For example: give the client something to eat or drink; help client into bed for a nap; engage client in conversation or doing an activity; turn down loud volumes etc.
• Check your mobile app notes or care plan for any additional strategies that may have been provided by the CSS.

5. Determine if the strategy was effective

• Did the chosen strategy work? If not, why?
• Should you try another strategy?
• Report to your CSS if the strategies worked or not. The CSS can share strategies with the client’s other PSWs or work on determining new strategies to try.

Alberta Health Services. (2016). Responsive behaviours.
https://www.albertahealthservices.ca/assets/about/scn/ahs-scn-srs-responsive-behaviours.pdf

Alzheimer Society of Canada. (2019). Conversations about dementia and responsive
behaviours. https://alzheimer.ca/sites/default/files/documents/conversations_dementia-and-responsive-behaviours.pdf

Alzheimer Society of Canada. (2023). Responsive and reactive behaviours.
https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/understanding-symptoms/responsive-reactive-behaviours

Baycrest Foundation. (2023). What are responsive behaviours?
https://www.baycrest.org/Baycrest/Education-Training/Educational-Resources/Responsive-Behaviours/What-are-responsive-behaviours