Patience Love And Understanding As A Dementia Caregiver
Dementia-related illnesses bring unique end-of-life care challenges and the challenges facing a dementia caregiver only grow more difficult as the disease progresses. It is important to remember that the anger and frustration you may feel as a dementia caregiver is normal and does not make you a bad person. Taking breaks from the caregiving role is vital to your health and your ability to care for your loved one.
The path of a dementia caregiver is one of numerous challenges and obstacles, but by understanding the root of your loved ones difficult behaviors, and by keeping patience and love at the forefront of your emotional arsenal, you can provide your loved one with the care and support needed on the end-of-life journey.
How To Respond To The Unpredictable Behaviors Of Dementia
It is important to for caregivers and loved ones to respond to these challenging behaviors as follows:
- Stay calm.
- Look for a root cause.
- Reassure and explain.
- Modify the environment if necessary.
- Look for ways to redirect focus.
The Alzheimers Association provides more specific responses that address the individual dementia behaviors listed above, along with resources for caregivers of seniors with dementia.
One other important thing for caregivers to remember: take care of yourself. Caring for someone with dementia can take its toll. You may need to seek help from a professional or reach out to your support system.
If you need assistance caring for a senior with dementia, Alzheimers, or any form of memory loss, contact Bethesda. Our Memory Support neighborhoods in the St. Louis area provide support to caregivers and families of seniors. Contact us or schedule a tour to learn more.
Common Changes In Behaviour
In the middle to later stages of most types of dementia, a person may start to behave differently. This can be distressing for both the person with dementia and those who care for them.
Some common changes in behaviour include:
- repeating the same question or activity over and over again
- restlessness, like pacing up and down, wandering and fidgeting
- night-time waking and sleep disturbance
- following a partner or spouse around everywhere
- loss of self-confidence, which may show as apathy or disinterest in their usual activities
If you’re caring for someone who’s showing these behaviours, it’s important to try to understand why they’re behaving like this, which is not always easy.
You may find it reassuring to remember that these behaviours may be how someone is communicating their feelings. It may help to look at different ways of communicating with someone with dementia.
Sometimes these behaviours are not a dementia symptom. They can be a result of frustration with not being understood or with their environment, which they no longer find familiar but confusing.
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Coping With Agitation And Aggression In Alzheimer’s Disease
People with Alzheimers disease may become agitated or aggressive as the disease gets worse. Agitation means that a person is restless or worried. He or she doesnt seem to be able to settle down. Agitation may cause pacing, sleeplessness, or aggression, which is when a person lashes out verbally or tries to hit or hurt someone.
Why Not Try This
Challenging dementia behaviors can be super-stressful. This basic approach can help stretch your patience and move you both toward a more peaceful quality of life.
Best of all, you can start using the Why-This, Try-This approach right away, even if youve been responding differently before.
To make these steps simple to refer to, Ive compiled a free downloadable PDF, 7 Steps to Managing Difficult Dementia Behaviors Without Medication, A Surviving Alzheimers Cheatsheet.
Get Your Free Managing Dementia Behaviors Cheatsheet.
Questions, suggestions, or try tips that work well for you? Please post them below!
Paula Spencer Scott is the author of Surviving Alzheimers: Practical Tips and Soul-Saving Wisdom for Caregivers . You can learn more at survivingalz.com.
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How To Respond To Aggressive Behaviour In Dementia
It can be difficult to know how to react when a person is behaving aggressively. Try to take a moment to think about their needs and why they might be behaving in this way. They are not likely to be doing it on purpose.
As a persons dementia progresses, they will have more difficulty understanding logic and persuasion, so trying to reason or argue with them is not likely to help. It may cause frustration and distress for you both.
Understanding The Causes And Finding Ways To Cope
While some people living with Alzheimer’s disease or other types of dementia remain pleasant and easy-going throughout their lives, others develop intense feelings of anger and aggression.
When someone with dementia lashes out at you for seemingly no reason, it’s normal to feel surprised, discouraged, hurt, irritated, and even angry at them. Learning what causes anger in dementia, and how best to respond, can help you cope.
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Ten Tips For Communicating With A Person With Dementia
We arenât born knowing how to communicate with a person with dementiaâbut we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
Dementia Behavior: Sleep Problems
While quality sleep tends to decrease as you age, people who have dementia experience more sleep disturbances than other seniors. In fact, sleep problems affect as many as a third of seniors with dementia.
Common sleep issues may include:
- Difficulty getting and staying asleep
- Agitation and restlessness when trying to sleep
- Thinking its daytime when its night, going as far as getting up, getting dressed and wanting to start the day, Hashmi says
Sleep disturbances are hard on patients and caregivers alike, Hashmi says. Its physically and mentally exhausting to be up night after night.
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Causes Of Agitation And Aggression
Most of the time, agitation and aggression happen for a reason. When they happen, try to find the cause. If you deal with the causes, the behavior may stop. For example, the person may have:
Look for early signs of agitation or aggression. If you see the signs, you can deal with the cause before problem behaviors start. Try not to ignore the problem. Doing nothing can make things worse.
A doctor may be able to help. He or she can give the person a medical exam to find any problems that may cause agitation and aggression. Also, ask the doctor if medicine is needed to prevent or reduce agitation or aggression.
Do Offer Assurance Often
Many times, people with dementia may experience feelings of isolation, fear, loneliness or confusion. They may not be able to express this in the right way and thus may wander off or keep saying that they want to go back home, especially if they are in a senior living facility. This is not the time to shut them out. Its a good idea to assure them that they are safe and in a good place.
If you are close enough, provide a comforting hug every once in a while and remind them that they are in a place that has their best interest at heart. Where possible, engage in exercise or take a walk as even light physical activity may help to reduce agitation, restlessness and anxiety.
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Strategies For Dealing With Alzheimers
Sometimes prescription drugs can be helpful in treating these behavioral changes. There are medications for anger management, depression and anxiety. Non-drug therapies have also proven to be successful in mitigating and managing behavior issues associated with Alzheimers.
Caregivers cant do much to prevent Alzheimers-related changes in personality and behavior, but there are ways to cope. Try the following strategies:
Common Causes And Supportive Responses For Alzheimers
Especially with middle to late stage Alzheimers, oftentimes a person cannot express how he or she feels with words and instead communicates feelings through some common dementia behaviors. Successfully dealing with challenging dementia behaviors in persons with Alzheimers disease begins by:
- Identifying the cause of the behavior or trigger. Questions to think about are:
- What happened just before the behavior started?
- Where did the behavior happen?
- What happened right after the behavior?
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Understanding Challenging Behaviors In Dementia
Alzheimers and other dementias often are accompanied by challenging behaviors that were not always prepared to handle. Sometimes, dementia seems to bring out the individual’s basic personality all the more. Other times, personalities seem to be completely different as dementia progresses.
For example, a loved one may be punctuating every sentence with & **%***#%* words they’ve never uttered throughout their whole life. A husband who has been faithful to his wife for their entire marriage may now be attempting to touch someone inappropriately or begin to have a girlfriend at a facility where he lives. Yet another person may have always been hospitable and welcoming, and now refuses to open the door to visitors and can be heard screaming for them to leave.
Dealing With Dementia Behavior: Wandering
Two characteristic precursors to wandering are restlessness and disorientation. An Alzheimers patient may exhibit signs of restlessness when hungry, thirsty, constipated, or in pain. They may also become disoriented, pace, or wander when bored, anxious or stressed due to an uncomfortable environment or lack of exercise. As well as adding physical activity to your loved ones daily routine, you can:
- Immediately redirect pacing or restless behavior into productive activity or exercise.
- Reassure the person if they appear disoriented.
- Distract the person with another activity at the time of day when wandering most often occurs.
- Reduce noise levels and confusion. Turn off the TV or radio, close the curtains, or move the patient to quieter surroundings.
- Consult the doctor as disorientation can also be a result of medication side effects, drug interactions, or over-medicating.
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Following A Partner Or Carer Around
Dementia makes people feel insecure and anxious. They may “shadow” their partner or carer as they need constant reassurance they’re not alone and they’re safe.
They may also ask for people who died many years ago, or ask to go home without realising they’re in their own home.
- have the person with you if you’re doing chores such as ironing or cooking
- reassure them that they’re safe and secure if they’re asking to go home
- avoid telling them someone died years ago and talk to them about that period in their life instead
Understand Why Someone With Dementia Says Mean Things
First, its important to understand why this hurtful behavior is happening.
Dementia is a brain disease that causes parts of the brain to shrink and lose their function, resulting in cognitive impairment.
These different parts control functions like memory, personality, behavior, and speech. Dementia also damages the ability to control impulses, which means actions arent intentional.
Even though its difficult, do your best to remember that they truly dont intend the mean things they say.
These mean comments and hurtful accusations often happen because the person is unable to express whats actually bothering them.
It could be triggered by something in their environment that causes discomfort, pain, fear, anxiety, helplessness, confusion, or frustration.
Working to accept the fact that theyre not doing this on purpose helps reduce stress and makes their behavior easier to manage.
The overall strategy is to take a deep breath, remind yourself that its not personal, take care of immediate discomfort or fear, and try to find the cause behind the behavior.
Next, look for long-term solutions that will help you get the support and rest you need to keep your cool in challenging situations like these.
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How To Handle A Dementia Patients Thrifty Behavior
Regardless of whether they have dementia, many elders were strongly influenced by the Great Depression and pride themselves on their frugality and resourcefulness. Furthermore, most seniors are living on a limited income and worry about having enough money to see them through retirement. Dementia can exacerbate these concerns and even cause them to project their anxieties other people.
Food tends to be a particular point of contention for many older adults. Some experienced hardship and famine themselves or heard about it from their parents and grandparents and were therefore raised with the mantra, waste not, want not. The memories that dementia patients retain are often from decades back, so they might panic if they see that food is being wasted. For example, a senior with dementia might become overcritical of someone who doesnt clean their plate or save leftovers. They might say something like, That woman is throwing away food! Thats a sin! Look at her dumping her dinner in the garbage!
The Progressively Lowered Stress Threshold Model
The Progressively Lowered Stress Threshold model aims at decreasing environmental stress and thereby decreasing some behavioral disturbances in dementia patients. Caregivers who receive PLST training report fewer secondary behavioral symptoms in patients than do caregivers who do not receive such training. The PLST model identifies 6 triggers of behavioral symptoms and resulting disability:
Fatigue. To counter problem behaviors resulting from fatigue, institutionalized patients should be given at least 2 rest or quiet periods at the same times every day. Calm times should be alternated with brief periods of activity. Caffeine should be avoided.
Responses to overwhelming or misleading stimuli. Many people with dementia tend to select the level of noise and social interaction they can tolerate, but in the nursing home they lose that control. Large dining roomswith their noise and high activity levelare especially troublesome. Patients may do better eating in small groups, which tends to decrease agitation and enhance food consumption. As dementia progresses, patients may misinterpret stimuli from television, radio, photographs, and mirrors . Caregivers should look for these cues and remove the environmental offenders.
Delirium. Patients with dementia should be monitored constantly for signs of pain, discomfort, urinary infection, trauma, and adverse drug reactions.
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Preventing And Managing Aggressive Behaviour In People With Dementia
Find ways to prevent and manage aggressive behaviour in the future, to help both you and the person with dementia.
Working out what might be triggering aggressive behaviour may make it easier to prevent it. Always try to see things from the persons perspective. Think about the situations where theyve become aggressive, and to try to find what has triggered this response.
Think about what you know about the person and their life. Be aware of their beliefs and thoughts and try not to argue with them. For example, if the person has always valued their privacy and independence, then being helped with eating or washing might cause them to become angry.
Responding To Challenging Behaviors
Knowing how to respond to challenging behaviors can be a true challenge. When loved ones become angry or aggressive, it’s not unusual to feel hurt or frustrated. Reminding yourself that the behavior you’re seeing is a result of the disease and not the person’s choice can help you cope with these feelings.
Sometimes, family or friends can benefit from a short break if the frustration is too much. It’s okay to give yourself a time out to take a deep breath and then return to your loved one after calming yourself.
Some physicians will prescribe medications to help with these behavioral symptoms, but keep in mind that non-drug approaches should be tried first and in a consistent manner.
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