Caring for someone with dementia challenging behaviors at home can be highly rewarding in many ways. However, because the disease is often seen as terminal and progressive, it can lead to distressing and challenging behaviors. These behaviors occur when a person with dementia expresses a mood state that impairs their emotional, voluntary, or cognitive functioning through aggression, disruption, stereotypes, or self-injury. This can take several forms such as agitation, aggression, wandering, and resistance to care. Challenging behaviors can often engender distress in people involved in care. However, these behaviors are not the inevitable outcome of the disease, and without skill and understanding, the challenges they represent can seem overwhelming.
Understanding Dementia Challenging Behaviors
dementia challenging behaviors are often visible manifestations emerging from what’s happening inside the brain. These behaviors are usually the expression of an underlying and unmet need, frustration, or confusion as opposed to being a deliberate and calculated attempt to control or harm. Before managing these behaviors, it is vital to determine the origin of the problem.
Common Dementia Challenging Behaviors
Agitation and Restlessness
This may consist of pacing, fidgeting or fussing, or an inability to settle. Agitation is a sign of discomfort or distress and often occurs when the person’s need is not met.
Aggression
Physical or verbal aggression can come out ‘of the blue’ and can follow a triggered response to fear, pain, or perceived threat.
Wandering
For example, this can cause immense distress to people with dementia, who are prone to getting lost, especially if they leave the safety of home. Wandering may be a result of confusion or a quest for something familiar.
Repetition: Repetition, whether of words, questions, or of the same actions is a fairly common feature of dementia. It can reflect anxiety or a need to be reassured.
Sundowning
This refers to increased confusion, agitation, and pacing at the end of the day. Sundowning can interfere with the person’s sleep-wake schedule and the caregiver’s ability to get adequate rest.
Resistance to Care
Not bathing, dressing, or taking medicines can be tricky to manage, and refusal to do these sorts of things can result from maladaptive, discomfort, or a determination to remain autonomous.
Causes of Dementia Challenging Behaviors
Challenging behaviors in dementia can be triggered by various factors, including:
- Physical Discomfort: when a dog is experiencing physical pain, hunger, thirst, fatigue, or other physical discomforts, behavior can be a manifestation of that.
- Environmental Factors: Overstimulation, noise, or unfamiliar surroundings can cause confusion and agitation.
- Emotional Distress: Anxiety, fear, loneliness, or depression can manifest as challenging behaviors.
- Cognitive Deterioration: As dementia progresses, the person might appear bewildered, which can provoke frustration and behavioral problems.
- Unmet Needs: Unsatisfied needs, such as the need to use the bathroom, adjust temperature, or seek reassurance, can trigger challenging behaviors.
Strategies for Dementia Challenging Behaviors
Identify Triggers
- Observe Patterns: If the challenging behavior is inconsistently occurring, writing down when and where these behaviors might be occurring will help identify patterns or triggers, such as at certain times of day, during a particular activity, or following a certain environment change.
- Identify the Needs: Find out if the person is hungry, thirsty, hurting, or tired. If those needs are being met, the difficult behaviors might disappear.
- Monitor Medications: Some drugs used to treat both psychiatric and medical disorders have side effects that can contribute to challenging behaviors. Educate healthcare providers so that they can review and adjust medications – if necessary.
Create a Calm Environment for Dementia Challenging Behaviors
- Diminish noise and clutter: Remove excess furnishings, make rooms more spacious, use softer light or dimmed light, and soft music can reduce agitation.
- Maintain a Routine • Keep a regular schedule: a routine can help to structure the day and make it more predictable so kids feel less anxious and experience fewer challenging behaviors.
- Personalize the Space: Put familiar objects, photographs, and comforting items all around the individual. This can be beneficial in creating a sense of security.
Use Validation Therapy
Second, acknowledge feelings, not facts. If the person is upset over the absence of something that isn’t there, recognize their feelings of distress, but don’t try to correct their factual deficiencies by bringing them back to the present.
At that moment, enter Their Reality. Sometimes, if someone believes something from the past is happening now, it may help to go along with them, rather than bring them back to what is happening now. That way, they don’t over-stress.
Redirect Attention
Shift Focus: When challenging behaviors occur, redirect the person by moving their attention to something else. Maybe the person avoids relating to others or becomes panicky if others get too close. If they keep staring at something you don’t want them to, try shifting their focus by involving them in an activity they enjoy. For instance, if they’re fixated on something scary in their field of vision, you can draw his or her attention to an interesting activity. You might ask questions such as ‘I’m going to take you on a walk. Go and sit at the table and select something you’d like me to take you for a walk with.’ If the person is fixated on a frightening event or thought, you can try asking questions about their favorite things.
Distract attention: A snack, a favorite book, or a pleasant activity can distract the person from the event or situation they are finding distressing.
Incorporate Physical Activity
- Promote Movement: Parkinson’s patients can appear restless if they are in an environment where they are compelled to be still. Encouraging some form of physical activity as simple as walking, or movement such as active exercises and stretching can reduce restless agitation and aggression associated with Parkinson’s. This also promotes overall health and wellness.
- Offer safer movement: For wanderers, offer safe areas for movement that can facilitate a need for activity and ensure their safety at the same time.
Use Clear and Simple Communication
- Don’t Panic: Stay calm and speak clearly. Do not bombard the person with an overwhelming amount of information, tense language, or noisy sounds.
- Offer Simple Instructions. Grammatically complex sentences can be overwhelming, so use clear instructions such as, ‘Let’s lift your shirt before we put on your shoes.’ For example, the task of ‘getting dressed’ often seems too big to young children so break the steps down into easy instructions.
- Non-Verbal Gestures: Use gestures, facial expressions, or touch while facing the person to communicate your thoughts and to convey support and reassurance.
Address Physical Needs
- Minimise pain and distress: An unaddressed painful condition can cause behaviors that are challenging to address. Make sure your partner’s pain and distress are managed by assessing for pain regularly and enquiring with healthcare providers about how to manage discomfort effectively.
- Ensure hydration and eating: dehydration and hunger might exacerbate a behavioral issue. Offer water frequently, use a sippy cup for someone who may forget if they urinated or toiled just minutes before, and offer small, nutritious snacks often.
- Get enough sleep: Sleep deprivation can lead to confusion, irritability and agitation. Develop a calming bedtime routine and set your home up for good sleep.
Seek Professional Support for Dementia Challenging Behaviors
- Seek Medical Advice: If the difficult behaviors are not resolving, consider medical advice from a healthcare provider or specialist; they can help provide treatment recommendations or adjust medicine.
- Consider Therapy: An occupational therapist, a geriatric psychologist, or a specialty dementia care professional can offer environmental strategies that might be appropriate.
Caregiver Tips for Managing Dementia Challenging Behaviors
Care-giving – particularly dealing with difficult behaviors associated with the condition – can be a tolling physical and emotional role. Caring for carers is much needed.
- Take care of yourself. Spend some time doing things that you like to do and that is fun, whether this is recreation or seeing friends.
- Get support: go to a dementia carers support group, where you can talk through what you’re going through and receive advice from others.
- Set realistic expectations: Challenging behaviors are part of dementia and, although you can decrease their occurrence, eliminating them is not possible.
- Take Breaks: respite care (for example, from family or friends, or through services within your community) can help you manage breaks and avoid burnout.
- Educate yourself: The more you know about dementia and how it progresses, the better you’ll be able to help guide behaviors.
What role does pain play in causing Dementia Challenging Behaviors in patients?
Certainly, chronic pain is a major cause of behavioral and psychiatric symptoms of dementia (BPSD), and it’s a major contributor to agitation and aggression in people with dementia. Here’s what we should know:
1. Under-Detection and Under-Treatment of Pain
Caregivers often fail to detect and treat pain in people with dementia due to communication challenges. Cognitive impairments may prevent many patients from expressing discomfort, and caregivers may not consider pain as a cause of behavioral changes. Although pain affects up to 50 percent of people with dementia, caregivers frequently recognize it as just another behavioral symptom of the condition rather than pain-related distress.
2. Behavioral Indicators of Pain
Patients may signal pain through grimaces, guarding, bracing a body part, or actively avoiding touch, as well as appearing agitated and confused. However, because these pain behaviors overlap with other conditions, nurses might misattribute them to the wrong cause, making it difficult to recognize untreated pain.
3. Association with Behavioral Symptoms
There is a robust relationship between the presence of pain and BPSD. Being in pain can set the stage for all kinds of difficult behaviors, compounding the general distress levels experienced. In dementia, pain often causes agitation, anxiety, and chorea, or withdrawal. Individuals may become agitated or resist care when they experience pain and lack the coping mechanisms to express or understand their distress. We argue that pain initiates BPSD, while factors like loneliness, frustration from communication difficulties, and distress from cognitive decline can worsen BPSD, increasing the likelihood of misdiagnosis and unnecessary treatment with antipsychotic medication.
4. Impact on Quality of Life
Yet, when left untreated, pain can magnify challenging behaviors, promote further functional decline, and increase caregiver burden. This is because caregivers often struggle to control the ensuing behavioral issues.
5. Importance of Pain Assessment
The kindest way to reduce distressing behavior is to control pain. Appropriate and valid pain assessment tools – such as the Pain Assessment in Advanced Dementia (PAINAD) scale and the Abbey Pain Scale – allow the caregiver to assess pain more readily because they focus on observable behavior, not self-reports. Appropriate pain assessment helps to control this distress.
6. Holistic Approach to Care
Addressing pain should be part of a larger management plan that also involves assessing overall physical health, emotional well-being, and environmental factors; addressing potential physical illnesses or co-morbid conditions that may contribute to pain and challenging behaviors; and employing a person-centered care approach to better understand that person’s history and identify and support their individual needs, interests, abilities, and preferences.
In summary, pain is an underappreciated contributor to difficult behaviors in people with dementia, and, where applicable, an appropriate assessment and management of pain has the potential to substantially improve outcomes for people with dementia and their carers.
Caregivers of individuals with dementia can manage even challenging behavior with patience, compassion, and a clear understanding of the underlying causes. They can identify triggers for challenging behavior, modify the environment to create a calm and relaxing space, and minimize behavior (both in frequency and intensity) by using effective communication strategies. Indeed, often challenging behavior arises as a form of verbal or physical communication, but because neither the person with dementia nor their communication partner is familiar with these alternative ways of signaling discomfort, these ‘messages’ become distorted and, often, come across as aggressive or challenging.
