Learn how to identify, respond and manage some of the most challenging symptoms of dementia.
Memory care conditions like dementia and Alzheimer’s can result in changes in a person’s behavior or personality. Responding to and managing apathy, anxiety and aggressive behavior of a loved one are some of the toughest challenges you will face as a caregiver. These personality differences can become pronounced and that only increases the stress and anxiety of caring for that person.
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Behavior change happens because dementia is causing the individual to lose neurons in the brain. The exact changes will depend on which part of the brain is losing neurons – different areas of the brian control different aspects of our behavior, senses and how our body works.
While behavior changes can often be one of the first signs that a person is dealing with a memory care problem, not all behavior change is a result of dementia. Infections and pain can also result in behavior differences and so it’s important to consider all the underlying factors. Behavior change may also not be a symptom of the dementia itself but most of the time is caused by something related to their dementia. For example, feelings of frustration with how dementia is affecting their life, abilities or role.
In this course we take a deeper look into underlying causes of anxiety, apathy and aggressive behaviors and help you consider how to prepare and adjust for them.
Apathy
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Lack of interest or enthusiasm for doing things is common in people suffering from a memory care condition and although it can develop at any stage of dementia it is often one of the earliest symptoms. You may find that your loved one has lost interest in the things around them or doing things that they used to enjoy. This can be particularly troubling if you’re used to a loved one who has been very motivated or active.
Activities that your loved one may have previously enjoyed may no longer be interesting or enticing, do not continue to push these activities on your loved one as changes in their brain may have made the activity confusing or difficult. Changes in the brain’s motivation pathways can cause apathy and it can even develop before any noticeable changes in loss of memory.
It is tempting to get frustrated with a loved one who is apathetic. Avoid getting into a conflict or regarding a loved one as lazy. Instead find common ground on simple activities that your loved one can easily manage.
The symptoms of apathy can resemble those of depression but not everyone suffering from apathy is depressed. People with depression are often sad and have trouble experiencing happiness and can experience guilt, worthlessness and hopelessness. In apathy people instead stop caring about what is happening around them or have low energy. People with apathy can still experience joy and happiness. It is possible to suffer from both apathy and depression at the same time.
Identifying apathy:
Some of the traits commonly associated with apathy are:
- Lack of interest or indifference in doing things.
- Limited social engagement or interaction.
- Lack of curiosity in new things.
- Unwillingness to engage or participate in activities.
- Low energy level or motivation.
- Not completing activities or tasks.
- Neglect of personal hygiene or self care.
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Treating apathy:
There are no medications to treat apathy. In some cases cholinesterase inhibitors or anti-depressants have been used to treat apathy but there is limited evidence about what really helps. Non-pharmacological approaches should be used first and foremost. Talk to your loved one to help understand what could help them and find ways to keep them active. You can look for local music or art therapy groups to get them involved with.
Handling apathy:
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As caregivers finding ways to keep your loved one engaged, motivated or stimulated can be a frustrating task. When choosing the right strategy take into consideration the cognitive and physical limitations of your loved one.
Understand the causes of apathy:
Has your loved one forgotten how to do the activity they used to enjoy or are they forgetting to practice the activity? Getting to the root cause can help you work out a plan to get them more active and involved.
Use a routine:
Setting up a daily routine with a calendar and reminders can help to keep a person more engaged and doing things they enjoy. If a certain activity has become overwhelming then consider shorting the time or reducing the pressure to be involved.
Change your framing:
Don’t ask open ended questions or questions that can result in your loved one saying “no”. Instead of asking if they want to go for a walk, say: “It’s time to go for our walk.” Don’t ask: “What would you like to do today?” but say: “Today we’re going to a music therapy class.”
Chose simpler activities:
Keep tasks simple and break things down into smaller steps. Simple activities like walking, doing jigsaw puzzles with larger pieces may be good options to keep your loved one active. Finding group activities to be involved with will also help to keep your loved one engaged.
Focus on what they still enjoy:
Does your loved one still get fulfilment for visits with family, from specific music or from certain types of food? Make sure that they’re built into the routine.
Stay patient:
It can be hard but mastering your patience is key. Avoid expressing frustration and disappointment. Don’t dwell on what they can’t do but celebrate what they can.
Anxiety
The symptoms of a memory care condition can often result in your loved one feeling insecure. Forgetting about conversations, people and places, getting lost or disorientated can be scary. As your loved one loses their ability to conduct everyday activities or support themselves they will start to worry about finishing tasks or doing them incorrectly.
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As the dementia progresses and your loved one understands less about what is happening around them or become uneasy in certain environments their anxiety levels will increase and you might find that your loved one becomes irritable or resistant to help.
Anxiety is more common in people suffering from vascular dementia or frontotemporal dementia (FTD) but is less common in Alzheimer’s disease.
Talk to your loved one about their anxiety, listen to what is worrying them and provide them with reassurance.
Remember that your loved one will be able to read your emotions and so if you are anxious or nervous around them that will make the situation worse.
Signs and signals of anxiety:
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- Fidgeting
- Seeking reassurance
- Short temper or irritableness
- Becoming easily agitated
- Lack of sleep
- Following you or others around
- Hoarding
- Pacing
People suffering from dementia can become dependent on their caregivers to help them cope and this can become an extra burden as a caregiver. Your loved one may start seeking more approval or reassurance. Keep your loved one as independent as you can but remain supportive and enthusiastic.
Triggers for increased anxiety:
Here are some important triggers that can cause or increase anxiety. While you might not be able to avoid the trigger event be on the lookout for signs of increased anxiety in your loved one and plan ahead to manage the situation.
- Changes in environment, loud noises or distractions.
- Change in living arrangements, such as a move to a nursing home or assisted living facility or even a hospital stay.
- Changes in caregivers or people coming into the home.
- Grief. Anxiety, loss and grief are very related.
Reducing anxiety
Techniques for reducing anxiety
Environment
- Reduce any mess or clutter in their local environment. It might be time to get rid of a few things around the house to help them keep things neat and tidy. This will also help reduce any risk of falls.
- Keep background noise to a minimum. Especially when having a conversation make sure that the TV or radio is turned off or down.
- Use soft lighting, dim bright lights and reduce any glare.
- Try to visit places that are familiar to their loved one. Consider taking a trip to a place that was meaningful at an earlier time in their life.
Communication
It’s good to talk! If your loved one is finding a situation frightening or traumatic make sure that you are talking to them about their worries and fears.
- Make sure you are listening to your loved ones frustrations and responding to any underlying feelings or irritations.
- Remember that your loved one may be having trouble communicating. Keep an eye out for non-verbal cues.
- Provide your loved one with reassurance. Use short and simple phrases like “everything is going to be ok.”
- Don’t raise your voice or argue. Respond calmly and gently.
- Consider using a therapist or counselor who can help your loved one identify and manage their anxiety.
- You can also work with a speech-language pathologist who will help provide both you and your loved one with strategies to communicate effectively.
- Don’t underestimate the power of a good hug!
Daily routine
Routine helps people with dementia navigate their days by providing a predictable structure. As routines are stored in the long term memory they’re easier for people with dementia to recall which provides a sense of stability and security to keep anxiety levels low. A good routine will help your loved one preserve their independence and remain engaged in the activities they enjoy.
When providing any instructions make sure you’re communicating in smaller and more straightforward chunks so that your loved one doesn’t become frustrated with not being able to remember or finish a task. Plan the activities around when your loved one is at their best level of functioning.
Pain and comfort management
Your loved ones anxiety may be a result of pain or discomfort so make sure you’ve spoken to them to address any underlying issues.
- Is your loved one experiencing any pain that may be contributing to their anxiety. Make sure you’ve helped them get appropriate pain relief.
- Is your loved one hungry or thirsty?
- Does your loved one need to visit the bathroom? Are they suffering from constipation?
- Could there be an underlying infection?
Exercise
Getting regular exercise can be a good conduite for nervous energy. Getting exercise can help to improve mood, strength and balance as well as preserving memory. Group based activities can also help reduce anxiety levels and help to preserve and foster communication and social skills. Consider planning exercises in small bursts, even as little as 10 minutes of exercise can help to reduce anxiety levels.
Diet and eating
A well balanced diet can improve overall health and reduce anxiety. As well as managing diet reduce concerns about having enough food by helping to keep your loved one stocked up with the things they need. Help them to arrange grocery deliveries.
- Read our course on “Food on the brain” which looks at supporting the nutritional needs of someone with a memory care condition.
- Avoid having too much alcohol as this can increase anxiety.
- Similarly try and transition your loved one away from too many caffeinated drinks as they are also linked with increased anxiety.
Aggressive, threatening or defensive behavior
One of the most challenging aspects of memory care can be managing the aggressive or abusive periods of a loved one in your care.
People with dementia can suffer from emotional outbursts and begin yelling, screaming and hitting or banging things. Your loved one may start (or have already started) to become angry and make accusations, make threats and sometimes act in a physically violent manner such as pushing, hitting or kicking. When this happens it can be scary and shocking.
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Aggressive behaviors often emerge in the middle stages of dementia along with other worrying behaviors like wandering and hoarding. This behavior can be totally new for your loved one and can occur with many different types of dementia including Alzheimer’s, Lewy body, vascular and frontotemporal (FTD).
While many people think of this aggressive behavior as being a symptom of dementia, it’s often more likely a cause related to the dementia such as feeling frustrated or irritated by their condition or situation. For that reason many people in the dementia field describe it as defensive behavior as it is often a response to feeling scared, anxious or irritated.
Work with your loved one to understand the causes of their behavior, the defensive behavior is usually always triggered by something. Does the behavior happen at the same time of day or in proximity to the same people? You may notice that it happens when you’re trying to help – like offering to help them get dressed. Try to read any visual cues that your loved one may be becoming irritated such as: fidgeting, pulling at their clothes or on a part of the body, rocking or pulling away.
Remember, you can use the Lizzy carefeed to document new behaviors in your loved one so that you can keep track of when something happened. This will help you to identify the source of a problem and it will be easier to recall all the information when you need to discuss your loved ones care with a doctor, counselor or therapist. You can tag posts in the carefeed with “new behavior” so that you can quickly filter the list later on.
Causes of aggressive behavior:
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Aggressive and threatening behavior is often a result of your loved one feeling like they are unable to communicate or get the help they need. As dementia can cause a person to lose their inhibitions they may not realize that their behavior is inappropriate. Identifying the pattern of when the behavior occurs will help you to work with your loved one to manage it.
Common causes of aggressive behavior:
- Your loved one is feeling agitated because of a loss of control. They can’t do the things that they’re used to doing. This would be frustrating and upsetting for anyone.
- They may be frustrated that they can’t remember things they used to. They may be getting confused and lost even in very familiar places such as their own home. They can’t remember the location of the bathroom.
- Your loved one is trying to communicate something but is finding it difficult to remember the words or find a way to tell you. They can’t express themselves or feel that they are not being heard.
- Frustration at not being able to participate in things that they used to enjoy. Losing the ability to do the things you love is hard and upsetting. Your loved one may also be bored and acting out.
- Environmental factors can play a big role in increasing the agitation and anxiety. Your loved one may feel unsettled or threatened by their environment. Could the environment be too noisy or too hot? Consider if there are any other discomforts.
- Underlying pain caused by an infection, constipation or discomfort. Ask your loved one about their pain management.
- Sight or hearing loss. This goes along with advanced age but for those with dementia it is harder to describe the problem. There are special tests for vision and hearing loss for people who have dementia.
- Side effects from medications can be another source of anxiety or aggressive tendencies. Some of the common medications used for people with dementia cause fatigue and that can make things feel harder and more difficult for your loved one to participate in activities or communicate.
- Loneliness and isolation are common in dementia. Even if your loved one is surrounded by family and friends they may feel they have become a burden or are struggling to participate in conversations.
- Depression. The symptoms of dementia can lead to depression, particularly the loss of ability to do simple things and concern over how things will get worse.
- Dementia can cause changes in intimacy and sexuality. A person with dementia may lose interest in having sex or be on medication that makes them have less interest but dementia can also cause some people to become overly interested in sex. These changes can increase frustration and lead to someone acting out.
- Dementia can cause delusions and hallucinations that can scare and unsettle your loved one leading to them acting out. This particularly happens in the mid to late stages of the disease and can happen in many forms of dementia including Alzheimer’s but is particularly common in Lewy body dementia.
Managing aggressive behavior:
Environment:
Be sensitive to creating a calming environment as people with dementia can become very sensitive to the changes in their environment.
- Avoid environments that your loved one may find distressing, such as small spaces like kitchens and bathrooms.
- Keep background noise to a minimum, turn off any distracting background noises like the TV or radio.
- If your loved one is asking about the date and time, place a clock and calendar in locations they are easily seen.
- If your loved one has become especially heated then give them time and space to calm down.
- If your loved one is starting to become aggravated with something they are doing or struggling to do then shift their focus onto a different activity or task.
Your (and other caregiver) behavior:
We all feed off each other’s emotions and this is just as true for people with a memory care condition if you are anxious they will be anxious too. Try and stay relaxed.
- Empathize and apologize to your loved one.
- Provide them reassurance.
- Do not argue or keep insisting that you are right.
- Don’t criticize or correct them.
- Do not continue to push if met with resistance or uncooperative behavior instead move on and revisit at a later point in time.
- Help encourage communication with your loved one and their family and friends. Make sure other people are staying in touch with your loved one by arranging visits and phone calls.
- If you feel the need to stay safe with your loved one make sure that you meet with them in a public space, keep a phone with you in case you need to call for help. If the situation becomes dangerous call 911 and let the dispatcher know that your loved one has dementia.
Preserve their independence:
Frustration from an inability to do things can boil over. Helping your loved one to preserve as much independence as possible can help to manage any defensive behaviors.
- Encourage your loved one to have a daily routine that provides them with stability. Work with them to identify activities and tasks that they can do for themselves.
- Support your loved one to keep doing the things that they enjoy and can participate in.
Medication:
Medication does not address the underlying causes of the behavior and so while some medications like antipsychotics can alleviate aggression they should be considered a last resort. Use other tools and techniques first.
Remember caregiving is very stressful, particularly when dealing with the most challenging conditions. Make sure that you are taking care of yourself and your own needs.