Alzheimer’s and Dementia Care

Alzheimer's/Dementia Care

Alzheimer’s/Dementia Care is supporting and/or assisting a person(s) experiencing the symptoms of dementia. As the stages progress, increased and additional care will be required for this person as both cognitive and physical functions will decline.

What is Alzheimer's/Dementia?

Alzheimer’s disease (Dementia) is a progressive disease that damages nerve cells (neurons) in parts of the brain involved in memory, learning, language, and reasoning. As the disease progresses communication between the nerve cells (neurons) breaks down. In the early stage, short-term memory begins to fail. Over time, long-term memory, language, and judgment decline.

Alzheimer’s is the most common type of dementia in older adults. The care for a person(s) with Alzheimer’s/Dementia may become very challenging and difficult. The Regulated Health Professional and family if appropriate, would need to be involved in the initial assessment process so that the proper staging can be done and the Plan of Care done according to person(s) needs.

Best Practices

If the person(s) requires assistance with one or more ADL’s, then the person(s) would need to move to the Personal Support Worker level of care.

Allow the person(s) 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 person(s) to make yourself heard.
Provide plenty of lighting in the home (to avoid or limit Sun downing behavior).
Make sure the person(s) is warm. You may feel very warm but often a person(s) 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 person(s) of time, date and day. Repeat reminders may be needed.
Provide fluids for the person(s). Often person(s) with Alzheimer’s will not take in enough fluids and dehydration can cause an increase in confusion.
Do not make changes in the person(s) home. Change for the person(s) 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 at all 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 person(s) with Alzheimer’s and for the confused elderly person(s).
Give frequent praise, reassurance and comfort through positive reinforcement.
Protect from wandering.
Get person(s) involved in a safe activity such as sweeping, winding ball of yarn, folding laundry, etc.
Most activities of daily living will have to be done for the person(s) as the disease progresses.

All procedures from above would be used as outlined on the Plan of Care and carried out by the PSW with proper certification. The safety of both caregiver and person(s) are of the utmost importance and communication to your appropriate supervisors (family members, care coordinator, nursing supervisor etc.) is imperative.

Stages of Alzheimer's/Dementia

Early Stage of Dementia/Alzheimer’s

The disease at this stage is mild. Symptoms might 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, bad decisions. Mood and emotions will fluctuate, blaming others for mistakes, symptoms of depression, irritability or defensiveness. Disinterest in everyday usual activities, such as grooming and appear to be more restless or passive than normal for this client. Remember every person(s) is individual and the time of the progression of the disease will vary from person(s) to person(s).In the early stages of the disease the person(s) may continue to be able to handle their own ADL’s with queuing and reminders.

Middle Stage

Symptoms from early stage intensify, and losses become too severe to ignore. Symptoms may include short-term memory loss now evolving into long-term memory loss with the person(s) unable to remember personal history and may no longer recognize family and friends. The person(s) may exhibit increased disorientation and may even wander off. They may become more restless and may continuously pace. The person(s) may have loss of impulse control (dropping filters) such as using foul language if they did not use it before, become anxious, paranoid or suspicious. Personality changes and even violent behavior may start to occur. Repetition of behavior and saying the same thing over and over are also common. Physically they may experience greater difficulties performing basic daily activities of living such as toileting, becoming incontinent with bowel and bladder functions, bathing, feeding and dressing oneself. 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 language difficulties. The middle stage of the disease would require mainly a Personal Support Worker level of care.

Late Stage

The PSW will provide a large amount of care for a person(s) 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, physicians, and even the PSW/companion/homemakers. During the late stages, most person(s) become totally dependent and they will have lost their ability to communicate or recognize family and friends. The person(s) is usually totally incontinent, have lost their gag reflex and can become unresponsive. In this last stage, eventually the person(s) will become bedridden, have difficulty eating or swallowing, lose control of bodily functions and may experience pain, seizures and may become unconscious. This stage will end with the person(s) eventual death. The care of this person(s) would need to be more intense with many more caregiver involved, as often 24/7 care is required as they become bedridden.

In the Late stage of Alzheimer’s, the symptoms may become so severe that the PSW will provide a large amount of care for a person(s) along with a team of other care providers including but not limited to; family members and friends, nurses, physicians, and even Companion / Homemakers.

Responsive Behaviours

What does Responsive Behaviour mean?

It is the preferred by persons with dementia, mental health, substance use and/or other neurological disorders,
It describes how their actions, words and gestures are a response to something important in their personal, social or physical environment (Alzheimer Society of Ontario, 2014).

Dementia and Responsive Behaviours

The brain is one of the most complex and important organ. It help 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 the brain.
A client’s responsive behaviours refers to their actions, words or gestures and represents 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 person with dementia and those around them.
One of the most common form of responsive behaviours encountered in the community stems from dementia.

Examples of Responsive Behaviours

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

Agitation
Becoming more withdrawn
Biting
Eating/Drinking harmful substances
Hallucinations
Hiding/Hoarding
Hitting
Hurting self or others
Kicking

Making unexpected noises
Pacing/Wandering
Paranoia
Repetitive vocalizations
Scratching
Sexually expressive behaviours
Shouting
Spitting
Throwing things
Wandering

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 it isn’t, does anything need to be done?
Video link:

What Causes Responsive Behaviours?

The disease

Changes in a person’s behaviour can be a sign of damage in a specific area of the brain. Dementia is one of the diseases which leads to damage to the brain. Lost communication skills As the dementia progresses, the person with dementia may no longer be able to verbally communicate their basic needs, such as the need for food, drink, sleep or the need to use the toilet.

Physical discomfort & pain

If the person 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 times, treating underlying pain reduces behaviours.

Depression, delusions & delirium

People may also experience depression, delusions (false beliefs about someone or something) or delirium (intense episodes of confusion) and 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

The person with dementia may have a hard time recognizing their physical surroundings and get lost. Or, they may not understand what to do in a particular setting, such as how to use the toilet. Changes in the 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, under-stimulated or feel rushed. This may cause frustration or boredom, which may result in a responsive behaviour, like hitting or refusing to accept help.

Meanings & Triggers

What is the Meaning or Trigger behind the Behaviour?

All behaviour has meaning. A trigger is something in the internal or external environment that may cause the person 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 a responsive behaviour may no longer be able to verbally communicate their needs. Behaviours are a way to communicate their needs to the people around them which is why it is important to pay attention to your client and try to determine how you can support them. Here is a list of potential triggers that could cause a responsive behaviour:

Potential physical triggers:

Pain
Hunger
Thirst
Need to toilet
Sleep disruption

Potential psychological triggers

Depression
Loneliness
Anxiety
Fear

Potential environment triggers:

Clutter, crowds
Overstimulation/under-stimulation
Unfamiliar environment and/or routine
Lighting
Inconsistency in caregivers

Handling Responsive Behaviours

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

An individualized care approach is critical to success. Please note these strategies may not work for everyone. Unfortunately, there is no quick fix and often requires trial and error. Caregivers must be “detectives,” searching for clues to what is causing the difficult behaviour and then finding suitable strategies to manage them. Use the points below to guide how you handle a client’s responsive behaviours:

Treat the physical problems.
- For example: Make sure hearing aids, glasses, or dentures are available. Offer client food/drink. Support client with routine toileting. Observe client for any signs or 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 the 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 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 client’s routine and the environment. Client’s with a high number of service hours should be acquainted to more than one PSW who are 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 client’s capabilities. Continue to encourage the client to participate in their personal care routine within their Speak to your CSS for suggestions on how to safely adapt tasks.

Strategies to Reduce Responsive Behaviours

Agitation

Give the client something to hold.
Distract the client with music, a picture book or a simple game.
Talk about happy moments in client’s life.
Is it too noisy or bright? Is the client overstimulated (too many things happening at once), under-stimulated (bored or not engaged) or tired.
Report client’s behaviour to the CSS; identify triggers and strategies that help calm client down.
Depending on the severity of client’s behaviour, CSS may have to recommend/advocate for a full medical assessment to rule out infections, treatable conditions and to review medications.
Do not ask client to stop.
Do not tell 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 client to leave the home, consider putting their coat out of sight.
Encourage and support client with recommended exercises if the duty is in the care plan.
Report client’s behaviour to the CSS; identify triggers and strategies that help calm client down.
The CSS may have to advocate for a Physiotherapist (PT) to prescribe safe exercises for the client.
Do not ask family or nurse to give client a sleeping pill before bed, which results in client sleeping most of the next day.

Sexual Behaviours

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

Hallucinations

Validate client’s fear by using phrases such as, “That must be frightening.”
Increase the ighting to remove shadow that could be misinterpreted.
Distract the person with music, exercise or photos.
Make sure client is wearing their glasses and/or hearing aids and that batteries are working if they use these assistive devices.
Report client’s behaviour to the CSS; identify triggers and strategies that help calm client down.
The CSS may have to recommend/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 client there is nothing there.
Do not get angry with client.
Do not argue with client.

Paranoia

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; identify triggers and strategies that help calm client down.
The CSS may have to recommend/advocate for a full medical assessment to rule out infections, treatable conditions and to review medications.
CSS must also investigate suspicions that could be true. Client could be a victim of abuse.
Do not argue with client.
Do not explain that no one has stolen the object and, just like last time, client lost it.

Video on Responsive Behaviours

Responding to Responsive Behaviours

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-centred 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 client hungry or thirsty? Is client tired or bored? Is the TV or radio too loud? Etc..
Consult with your CSS to report exactly what you observed about client’s behaviour and discuss potential strategies.
Keep in mind that your CSS may have to consult with client’s family or medical team to determine other coping strategies to incorporate into client’s care.

4. Take action

Take initiative to try and problem solve within your scope as a PSW. Depending on the situation, take action to try and calm client’s behaviour. For example: give 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 another strategy be tried?
Report to your CSS if the strategies worked or not. CSS can share strategies with client’s other PSWs or work on determining new strategies to try.