Tips For Caregivers And Families Of People With Dementia
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A caregiver, sometimes referred to as a caretaker, refers to anyone who provides care for another person. Millions of people living in the United States take care of a friend or family member with Alzheimers disease or a related dementia. Sometimes caregivers live with the person or nearby, other times they live far away. For many families, caring for a person with dementia isnt just one persons job, but the role of many people who share tasks and responsibilities. No matter what kind of caregiver you are, taking care of another person can be overwhelming at times. These tips and suggestions may help with everyday care and tasks.
Top Tips For Caring For A Parent With Dementia At Home
As an adult child, you most likely have your own life and responsibilities. You may have a job, a spouse, or kids of your own. But when your mom or dad develops dementia, the burden of care may fall on your shoulders.
As a caregiver to someone with dementia, there will be some challenges that arise along the way. The most common challenges that adult children face when caring for a relative with dementia are:
Below, we look at these four areas of difficulty in more detail. Well offer some dementia tips and tricks to help you in understanding and supporting someone with dementia.
How Families Typically Share The Care Work
Usually when someone is diagnosed with dementia, the persons already living with the person start doing the care. This could be the spouse or a child. If the person is living alone, the family members living nearby try to help the person.
When care starts becoming more complex, the arrangement may change. Family members with more time or a bigger house or more money may take over the care. Families may share the work by taking turns to care for the person with dementia. Sometimes the person moves from one childs home to the home of another child. Even within a single home, there is a primary caregiver while others help sometimes or during emergencies.
A family has many members who are concerned about the person with dementia. They may not all be living together. The primary caregiver, others in the same home, and family members living outside, all have their own ideas of how to care for the person. They also try to share the work and costs of the care.
However, many families do not talk about how they will share the work and costs across the years. Problems arise within family members living with the person, and between them and the family members living separately. Some typical problems are described in the following section. Most of the disagreements happen between the live-in caregivers and the distant family members, especially if they have never taken care of the person with dementia.
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Thoughts On How To Manage Your Anger When Caring For Someone With Dementia
AM a caregiver. .My husband is battling dementia. having difficulty learning to live and cope with the issues this disease presents. Never thought this would be an issue in our lives. The anger,frustration and uncertainties keep me from feeling I am coping properly and am concerned about my well being as I travel this unknown scary path.
Dennie, thank you for your comment and sharing your fears and frustrations. You are absolutely correct that it is a scary and difficult path. But, do know that you are not alone. Ionas Information & Referral Helpline specialists can give you information about support groups and other programs and services in the DC area, or refer you to good online resources to find other services if you live outside DC. You can speak with a specialist M-F from 9 AM 5 PM by calling 895-9448.
Do you have support groups in Queens, NY?
Thanks for your question, Lisa. Were a local nonprofit in Washington, DC and serve the DC metropolitan region. However, Ive shared your question with our Helpline staff in case they can direct you to resources in the Queens area.
Were glad that you found the article helpful!
Thank you for sharing. What you said really resonated with me. Im overwhelmed and not handling my mothers Alzheimers well at all.
Dealing With Stubbornness In Parents Living With Dementia: 50 Expert Tips For Communicating Gaining Cooperation And Understanding Behavior
Caring for aging parents gives adult children peace of mind to know they are providing loving care. It also allows for them to make more memories and spend more time with parents in the final chapter of their lives. But caregiving is far from easy, especially when loved ones are diagnosed with dementia. Resisting care and general stubbornness are two hallmarks of dementia, and they are among the most common reasons that adult children look for help as caregivers.
If youre unsure how to deal with stubbornness in parents with dementia, youre not alone. Most family caregivers of loved ones with dementia struggle daily with getting them to the doctor, gaining their cooperation, convincing them to bathe and brush their teeth, and communicating with them. Read on for a comprehensive list of tips from other caregivers, medical professionals, gerontologists, and dementia experts. Tips are categorized and listed them alphabetically within each category, but are not ranked or rated in any way.
If you need help caring for a parent or a loved one with dementia at home, learn more about Seniorlinks coaching and financial assistance program for caregivers of Medicaid-eligible friends and family members.
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Why Can’t A Partner Of The Person With Dementia Accept Their Diagnosis
If the partner of the person with dementia is in denial, they may be worried that their relationship will change.
It can be very difficult to accept that plans they have made together will also have to change. They may have always relied on the person to do certain tasks and might be worried or scared about having to do these things for themselves.
Ways To Reduce And Manage Mean Dementia Behavior
1. Calm the situation downThe first thing to do is reduce the tension in the room.
Start by limiting the distractions in the room, like turning off the TV or asking others to leave.
And if you stay calm, theyre also more likely to calm down.
It might help you to count to 10 or even leave the room for a short time to cool down. Repeat to yourself its the disease as a reminder that theyre not intentionally doing this.
If the current activity seemed to cause the agitation, try shifting to a more pleasant, calming activity. Or, try soft music or a gentle massage.
2. Comfort and reassure while checking for causes of discomfort or fearTake a deep breath, dont argue, and use a calm, soothing voice to reassure and comfort your older adult.
It also helps to speak slowly and use short, direct sentences.
Then, check for possible causes of agitation or fear, like:
- Feeling disturbed by strange surroundings
- Being overwhelmed by complicated tasks
- Frustration because of the inability to communicate
It also helps to focus on their emotions rather than their specific words or actions. Look for the feelings behind what theyre doing as a way to identify the cause.
3. Keep track of and avoid possible triggersWhenever difficult behavior comes up, write down what happened, the time, and the date in a dedicated notebook.
Also think about what was going on just before the behavior started and write that down as a possible trigger.
Taking some time away can help both of you.
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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.
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.
The Importance Of Health Care And Early Detection
A relationship with a geriatric physician is invaluable for dementia patients. Exams provide valuable information about memory loss. An early diagnosis also offers options for treatments and medications that can slow the diseases progression.
A dementia evaluation includes a physical exam, bloodwork and medication review. Doctors also conduct a mental health and cognitive evaluation. They gather family and previous health history.
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Create A Calm And Quiet Environment For People With Dementia<
Remove all the things that serve as stressors like noise, glare, and background distraction . All these can act as triggers, so better avoid them. Try to move the person to a quieter place for a more relaxed space, rest, and privacy.You can also try offering a security object like a doll for them to cuddle and calm down. Soothing rituals and limiting caffeine intake can also be helpful to prevent agitation.
Educate Others About Lewy Body Dementia
Most people, including many health care professionals, are not familiar with LBD. In particular, emergency room physicians and other hospital workers may not know that people with LBD are extremely sensitive to antipsychotic medications. Caregivers can educate health care professionals and others by:
- Informing hospital staff of the LBD diagnosis and medication sensitivities, and requesting that the person’s neurologist be consulted before giving any drugs to control behavior problems.
- Sharing materials with health care professionals who care for the person with LBD. Materials are available from NIH, as well as the Lewy Body Dementia Association and the Lewy Body Dementia Resource Center.
- Teaching family and friends about LBD so they can better understand your situation.
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Dont Neglect Your Own Needs
By always focusing so diligently on your loved ones needs throughout the progression of their dementia, its easy to fall into the trap of neglecting your own welfare. If youre not getting the physical and emotional support you need, you wont be able to provide the best level of care, and youre more likely to become overwhelmed and suffer burnout.
Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. Its easy to abandon the people and activities you love when youre mired in caregiving, but you risk your health and peace of mind by doing so. Take time away from caregiving to maintain friendships, social contacts, and professional networks, and pursue the hobbies and interests that bring you joy.
Tips For Caregivers: Taking Care Of Yourself
Being a caregiver can be extremely rewarding, but it can also be overwhelming. Caring for a person with Alzheimer’s or a related dementia takes time and effort. It can feel lonely and frustrating. You might even feel angry, which could be a sign you are trying to take on too much. It is important to find time to take care of yourself. Here are some tips that may offer some relief:
- Ask for help when you need it. This could mean asking family members and friends to help or reaching out to for additional care needs.
- Eat nutritious foods, which can help keep you healthy and active for longer.
- Join a caregiver’s support group online or in person. Meeting other caregivers will give you a chance to share stories and ideas and can help keep you from feeling isolated.
- Take breaks each day. Try making a cup of tea or calling a friend.
- Spend time with friends and keep up with hobbies.
- Get exercise as often as you can. Try doing yoga or going for a walk.
- Try practicing meditation. Research suggests that practicing meditation may reduce blood pressure, anxiety and depression, and insomnia.
- Consider seeking help from mental health professionals to help you cope with stress and anxiety. Talk with your doctor about finding treatment.
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Caregiving In The Middle Stages Of Alzheimers Or Dementia
As your loved ones Alzheimers disease or dementia symptoms progress, theyll require more and more careand youll need more and more support as their caregiver. Your loved one will gradually experience more extensive memory loss, may become lost in familiar settings, no longer be able to drive, and fail to recognize friends and family. Their confusion and rambling speech can make communicating more of a challenge and they may experience disturbing mood and behavior changes along with sleep problems.
Youll need to take on more responsibilities as your loved one loses independence, provide more assistance with the activities of daily living, and find ways of coping with each new challenge. Balancing these tasks with your other responsibilities requires attention, planning, and lots of support.
Ask for help. You cannot do it all alone. Its important to reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving. Schedule frequent breaks throughout the day to pursue your hobbies and interests and stay on top of your own health needs. This is not being neglectful or disloyal to your loved one. Caregivers who take regular time away not only provide better care, they also find more satisfaction in their caretaking roles.
Should You Keep Trying To Communicate
Family members may frequently ask, How often should I visit?, or, Should I visit at all, because they dont seem to be understanding what were saying, most of the time they dont seem to recognize me, etc. Caregivers can encourage family members to visit because its important to them. Also, the person with memory loss may catch some things on some days, and if family members can make the interaction a pleasant moment, it can be rewarding for both.
Communication amongst family becomes particularly difficult when the person with dementia and/or Alzheimers doesn’t recognize family members anymore. In this situation, a spouse or children can think that it doesnt do any good to go talk to the personthat anyone could talk to him/her because they dont remember who they are. But there is a richness that happens because of family history together, something that can only come from people that have been family or friends for a long time.
The type of communication families can get out of visits can be pulled from the strength of the patient and/or loved ones long-term memories. They can still talk about the past, and for family members, to hear those things are perhaps a worthwhile gift.
Even though the patient and/or loved one can no longer communicate the way they used to, there are still other ways to enjoy time together. There is beauty and simplicity in being in the present moment.
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Communication Is Key: Stay In Touch
As the discussion above shows, it is very important to share information and status updates, and to discuss the situation and possible actions. This is essential to coordinate the work and avoid misunderstanding. Fortunately nowadays, technology makes it easier to stay in touch. In addition to visiting and meeting in person, you can stay in touch even when you are at separate locations. Some options:
- Voice or video chat, such as using Skype, Google Meeting, ZOOM, and other such platforms. This makes it simple to have discussions between persons at two places. It also lets remote family members see and talk to the person with dementia, so that they have a realistic understanding of the situation. Caregiving approach and decisions can be discussed.
- Conference calls. These are useful when family members are spread across more than two locations. Many free and paid services are available for this.
- Whatsapp groups. You can create a group of family members, so that all of you can post at any time you want, and share information or discuss as convenient.
- Others. There are many other technology-enabled ways, too, like private Facebook groups/ messenger, emails, email groups, etc.
Select whatever most family members are comfortable using and find most convenient.
- Family manages to coordinate care though siblings dont always agree: Long distance caregiving challenges and approach.
How To Talk To Someone With Dementia Alzheimer’s Or Memory Loss
Communicating with a person with memory loss can be difficult, but the right strategies can bridge the gap and foster a more fulfilling relationship between you and your patient or loved one.
Those struggling to communicate with a person who has memory loss are not alone. As many as four million people in the US may have Alzheimer’s, and, as our population ages, that number is expected to increase. Anyone who is a senior caregiver is likely to be affected and will need to understand how to cope with what is happening.
Memory loss associated with aging, dementia, and Alzheimer’s typically doesnt happen overnight. Slowly, little-by-little, it sneaks up, until one day, family members realize that they can no longer communicate in the same way with the person they’ve known for years. They suddenly can’t rely on their words and their sentences dont match the situation.
Because we cannot see the diseasethe way we see a broken armits even more confusing when caregivers see how their patient and/or loved one will have good and bad days. The days when theyre alert and clear-headed make a caregiver hopeful. Then the bad days come, and family members and caregivers feel the pain of losing their patient and/or loved one all over again. This slow and normal progression of the disease makes communication a major challenge for caregivers.
This blog will share more information and advice to improve communication, including:
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