Joy in Caregiving: Have Fun with Your Loved One

(AARP) As caregivers we are so focused on health care, safety, finances and logistics that we can easily lose sight of quality of life — both for those we care for and for ourselves. Experiencing joy while caregiving isn’t always easy, but I believe it’s more than just a nice thing to do: It’s a crucial survival skill. Every moment of joy fills our tanks a bit so we can keep going. And a little bit of fun can go a long way to relieve stress, motivate, activate and connect — as well as relieve boredom.

I’ve learned to prioritize both noticing the inherent joys throughout the day as well as proactively creating joyful moments. Here are some ideas for infusing joy into your loved one’s life, as well as your own.

Music. When I ask caregivers how they create joy and fun, music is the most common response. Play your loved one’s favorite genre of music — from 1940s swing to gospel to rock. Listen on the radio or television (watching Lawrence Welk reruns is my dad’s favorite thing to do), or set up a playlist on an MP3 player. You can use Pandora, iHeartRadio, Amazon Prime music and Sirius XM to play songs that bring peace, ease pain, energize, distract from anxiety, induce memories (such as military or patriotic music) or trigger a spontaneous sing-along.

Adventures. I approach every outing as an adventure — whether it’s to a medical appointment, shopping, dinner, a movie, a ball game or just a car ride to get out of the house. Outings are more difficult for my dad these days (he’s 93 and has Alzheimer’s disease), but we still go out for drive-through coffee and lemonade on good days. Plan ahead for the best places for parking, and recruit someone else to drive or come along to lend a helping hand and make it more fun.

Food. The taste and scent of good food as well as the act of making it can stir happy memories for all of us. Try making your loved ones’ favorite meal (or ask them to do so). Stop for a cup of coffee or tea. Bake together or watch cooking shows on television, and talk about the food you’d like to have. Savor every bite.

Physical activity. Get moving, and make it fun. I made the effort to keep Dad swimming as long as he could, and that helped me stay fit, too. What else? There’s dancing — even chair dancing (move those arms!) — or you can try tossing a ball back and forth, marching, and yoga breathing and poses. Even a short walk to the mailbox can change a mood.

Games. Think about games your loved ones can play, like familiar card games, board games or word games (my parents always had fun with Mad Libs). Charades can be doable even for those with communication disorders. Work on crossword puzzles and jigsaw puzzles together, or even play “I spy….” Games can help pass time in a waiting room and distract from boredom or pain.

Celebrations and holidays. Make any excuse for a party. Celebrate all anniversaries and birthdays. Every holiday, whether it’s Valentine’s Day, St. Patrick’s Day or the first day of spring, offers the opportunity to decorate their home or room (my family has headgear and jewelry for all holidays — just for fun). Also celebrate accomplishments from small things like a successful shower or fastening their own buttons to large things like getting out of the hospital. Celebrations can be marked by a “Congratulations!” sign, a full-blown party or a big hug and a happy dance.

Humor. Just be silly. Laugh at yourself, tell jokes, retell old family stories, watch funny movies or videos on YouTube, read funny stories. Have a wheelchair race or put your glasses on upside down. Laugh about the everyday mistakes and foibles we all experience (like when I forgot to give Dad his false teeth and didn’t realize it until we were out at a ball game. He just smiled, made a funny face and laughed it off).

Nature. For many people, simple nature brings the most joy. Bring fresh flowers, or visit a garden or nursery. You can also plant flowers, walk outside, build a snowman, cuddle up with a pet, watch an animal play or go for a car ride to see the spring blooms, the snow or the fall leaves.

Home videos and scrapbooks. Put the old home movies on DVD or digitize them, and watch them together. If your loved ones don’t have scrapbooks, make some together — just sorting through old photos can be fun. Use your camera phone, too — take snapshots and selfies and share them, or look at family and friends’ photos on social media sites.

Intergenerational exchanges. Bring children and elders together for a visit. Holding or even just seeing a baby can bring great joy. Ask a grandchild to read a book aloud or recite a poem he or she memorized. Grandkids can also teach elders how to use a computer or smartphone. Ask a grandparent to share a hobby or teach the younger generation how to bake a pie, clean properly or build something.

Massage and other bodywork. A simple hand, foot or neck massage brings joy. Try it with scented lotion, such as lavender to soothe, or lemon or grapefruit to energize. A masseuse comes to our house once a week for Dad, and that massage is the happiest time for him.

Notice the inherent joy in every day. Make an effort to be mindful of the joy that you might be missing when your mind is racing and your tension rages. The memory of Mom’s smile as I tucked her in bed every night will forever bring me joy. The small victories like Dad brushing his teeth by himself. The “Thank you, sweets” from Dad when I adjust his pillow. Dad tapping his toes under the blanket as he listens to music. Don’t miss a precious subtle moment.

Being creative and open to the humorous, joyful moments will help you face the tougher aspects of caregiving. You might consider keeping a “joy journal” and noting the joyful moments. They will bring you comfort in the future.


Amy Goyer is AARP’s family and caregiving expert and author of AARP’s Juggling Life, Work and Caregiving.

She spends most of her time in Phoenix, where she is caring for her 93-year-old dad, Robert, who has advanced Alzheimer’s disease. Follow her blog and videos and connect with Amy on TwitterFacebook and LinkedIn.

Copyright 2018 AARP


Long-Distance Caregiving: Tips for Success

(NIH) Long-distance caregiving presents unique challenges. If you find yourself in the long-distance caregiving role, here is a summary of things to keep in mind.

Know What You Need to Know

Older woman in a wheelchair and her daughterExperienced caregivers recommend that you learn as much as you can about your family member or friend’s illness, medicines, and resources that might be available. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier. Make sure at least one family member has written permission to receive medical and financial information. To the extent possible, one family member should handle conversations with all healthcare providers. Try putting all the vital information in one place—perhaps in a notebook or in a shared, secure online document. This includes all the important information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers, and keep the information up to date.

Plan Your Visits

When visiting your loved one, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your family member or friend ahead of time and finding out what he or she would like to do. Also, check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to get some new winter clothes or visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother’s physician? Decide on the priorities and leave other tasks for another visit.

Remember to Actually Spend Time Visiting with Your Family Member

Try to make time to do things unrelated to being a caregiver. Maybe you could find a movie to watch with your relative, or plan a visit with old friends or other family members. Perhaps they would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone, and it builds more family memories. And keep in mind that your friend or relative is the focus of your trip—try to let outside distractions wait until you are home again.

Get in Touch, and Stay in Touch

Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff so several relatives can participate in one conversation and get up-to-date information about a relative’s health and progress. If your family member is in a nursing home, you can request occasional teleconferences with the facility’s staff. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. You might also talk with a family member or friend in the community who can provide a realistic view of what is going on. In some cases, this will be your other parent. Don’t underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents’ needs.

Help the Person Stay in Contact

For one family, having a private phone line installed in their father’s nursing home room allowed him to stay in touch. For another family, giving Grandma a cell phone (and then teaching her how to use it) gave everyone some peace of mind. These simple strategies can be a lifeline. But be prepared—you may find you are inundated with calls or text messages. It’s good to think in advance about a workable approach for coping with numerous calls.

Learn More About Caregiving

Whether you are the primary caregiver or a long-distance caregiver, getting some caregiving training can be helpful. As with a lot of things in life, many of us don’t automatically have a lot of caregiver skills. For example, training can teach you how to safely move someone from a bed to a chair, how to help someone bathe, and how to prevent and treat bed sores, as well as basic first aid. Information about training opportunities is available online. Some local chapters of the American Red Crossmight offer courses, as do some nonprofit organizations focused on caregiving. Medicare and Medicaid will sometimes pay for this training.

Gather a List of Resources in the Care Recipient’s Neighborhood

Searching the Internet is a good way to start collecting resources. Check with a local library or senior center, the Area Agency on Aging (, or the Eldercare Locator ( to find out about sources of help.

Find more caregiving resources.



Alzheimer’s Disease: Managing Personality and Behavior Changes

(NIH) Alzheimer’s disease causes brain cells to die, so the brain works less well over time. This changes how a person acts. This article has suggestions that may help you understand and cope with changes in personality and behavior in a person with Alzheimer’s disease.

Common Changes in Personality and Behavior

Common personality and behavior changes you may see include:

You also may notice that the person stops caring about how he or she looks, stops bathing, and wants to wear the same clothes every day.

Other Factors That Can Affect Behavior

In addition to changes in the brain, other things may affect how people with Alzheimer’s behave:

Other problems in their surroundings may affect behavior for a person with Alzheimer’s disease. Too much noise, such as TV, radio, or many people talking at once can cause frustration and confusion. Stepping from one type of flooring to another or the way the floor looks may make the person think he or she needs to take a step down. Mirrors may make them think that a mirror image is another person in the room. For tips on creating an Alzheimer’s-safe home, visit Home Safety and Alzheimer’s Disease.

If you don’t know what is causing the problem, call the doctor. It could be caused by a physical or medical issue.

Keep Things Simple…and Other Tips

Caregivers cannot stop Alzheimer’s-related changes in personality and behavior, but they can learn to cope with them. Here are some tips:

  • Keep things simple. Ask or say one thing at a time.
  • Have a daily routine, so the person knows when certain things will happen.
  • Reassure the person that he or she is safe and you are there to help.
  • Focus on his or her feelings rather than words. For example, say, “You seem worried.”
  • Don’t argue or try to reason with the person.
  • Try not to show your frustration or anger. If you get upset, take deep breaths and count to 10. If it’s safe, leave the room for a few minutes.
  • Use humor when you can.
  • Give people who pace a lot a safe place to walk. Provide comfortable, sturdy shoes. Give them light snacks to eat as they walk, so they don’t lose too much weight, and make sure they have enough to drink.
  • Try using music, singing, or dancing to distract the person.
  • Ask for help. For instance, say, “Let’s set the table” or “I need help folding the clothes.”

Talk with the person’s doctor about problems like hitting, biting, depression, or hallucinations. Medications are available to treat some behavioral symptoms.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Personality and Behavior Changes in Alzheimer’s

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
1-800-438-4380 (toll-free)

The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Alzheimer’s Association
1-800-272-3900 (toll-free, 24/7)
1-866-403-3073 (TTY/toll-free)

Alzheimer’s Foundation of America
1-866-232-8484 (toll-free)



Alzheimer’s: 7 Tips for Medical Visits

(Mayo Clinic) Regular medical care is an important part of Alzheimer’s treatment. Use these seven tips to stay on top of your loved one’s care.

People who have dementia due to Alzheimer’s disease need regular medical care to address a range of health and behavioral issues. If you provide care for a loved one who has dementia, you’re sure to have lots of questions for his or her doctor — and limited time. To get the most out of your loved one’s medical appointments, consider these seven tips.

Click here to get a free Medical Appointment Checklist (PDF file requiring Adobe Reader)

1. Schedule Wisely

Plan appointments for your loved one’s best time of day and, if possible, when the doctor’s office is least crowded. Bring snacks and water and a portable activity your loved one enjoys.

If going to the doctor has been a problem in the past, wait until the day of the appointment to tell your loved one. If necessary, offer a reward after the visit, such as stopping for ice cream on the way home.

2. Be Prepared

Make a list of issues you’d like to address with the doctor, such as concerns about medication side effects or aggressive behavior. Make a list of every medication your loved one takes, even over-the-counter medications and supplements, or bring the labeled containers in a bag. If your loved one lives in a facility, relay medications that your loved one is taking there or any concerns staff members might have.

Early in the disease, be sure to have your loved one sign a privacy release form at the doctor’s office, so the doctor can freely discuss your loved one’s medical condition with you.

3. Be Specific

Be ready to answer questions about your loved one’s symptoms and behavior. Have you noticed any changes in your loved one’s health, memory, mood or behavior? When did the changes begin?

Do you have concerns about your loved one’s ability to drive or live independently? As the disease progresses, your insight might be the critical factor in determining what’s best for your loved one.

If the doctor prescribes medication for your loved one, find out exactly what time of day and how much of the drug should be taken. Ask why the medication is being prescribed and how long it might be before you see any improvement. Also, ask your doctor what side effects might occur.

4. Take Notes

Bring a pad and pen to jot down information from the doctor. You might also record the conversation so that you can listen to it again later. Or bring a friend or another family member and ask him or her to take notes or to stay with your loved one while you take notes. If you don’t understand something the doctor tells you, ask for clarification.

5. Consider the Future

Ask the doctor to discuss what to expect in the next year or two. You might ask about advance directives, long term care or nursing home placement. You might also discuss hospice or palliative care. Knowing what to expect can help you prepare.

6. Ask for Referrals or Recommendations

If you need help, ask. The doctor can refer you to various community resources, such as the local area agency on aging, meal services, senior centers, respite care and support groups.

7. Deal Promptly with Conflict

If something annoys you about a particular appointment or if a misunderstanding arises, discuss it with the doctor right away. Work as a team to resolve the problem, rather than rushing to switch doctors. A change could be confusing to your loved one and detrimental to his or her care in the long run.


© 1998-2017 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.


Alzheimer’s Disease: Helpful Tips for Daily Life

(UCSF Memory and Aging Center) The regular tasks of day-to-day life can become more challenging for a person as their disease gets more advanced.

Activities of daily living are divided into two major categories. The first, often called instrumental activities, includes more complex types of activities such as paying bills, shopping, managing medications, working and driving. The second category is activities related to personal care and includes eating, bathing, dressing, getting in or out of bed or a chair and using the toilet. In the beginning of the disease, the patient will have trouble completing the instrumental, complex activities. As the disease progresses, the person will have difficulty managing the more basic functions and will need help from caregivers.

General Tips

Remember to:

  • Facilitate their performance
  • Keep the patient as active as possible
  • Focus on their abilities
  • Avoid distress between you and the patient
  • If a lack of motivation is the barrier to performing a task, consider offering a reward for desired behaviors
  • Give yourself a break from time to time


If the patient becomes difficult to bathe, try this:

  • A sponge bath in the tub or on a chair instead of a shower
  • Talk to your loved one in a soothing voice while bathing and talk through each step you take
  • Let your loved one do as much as possible
  • Plan the bath or shower for the time of day when the person with FTD is at their best
  • Bathe every couple of days instead of every day
  • Don’t force anything


Dressing is something your loved one may be able to do for a relatively long time. It might take them longer than it used to; but if they are safe, let them do it themselves, even if it takes all morning. Try this:

  • Find clothes with larger buttons or replacing closures with Velcro
  • Look for pants or skirts with elastic pull-on waists
  • Try shoes that fit well, stay on, and don’t require laces (to prevent tripping)
  • Consider placing a baby monitor in their room. It will allow them to be more independent while you are nearby and alert to problems.
  • If getting undergarments off is a problem, use wrap around skirts as clothes


Driving tends to be one of the most contentious issues in relationships with people with neurodegenerative disease. Try this:

  • Get a steering wheel lock or another safety device that prevents someone with the ignition keys to take the car
  • If the person with dementia is upset about losing their license, take them to the DMV to get pick up the forms to get reinstated. Drive home and tell them that when the forms are completed, you can go back and file them. Rarely do the forms get completed, but your loved one usually feels better for having gone through the exercise of getting the forms.
  • For people with language difficulties, it might be helpful for the person to carry a letter from the doctor explaining their language difficulties.


Sometimes the person only needs some support to continue managing the finances. If you can offer some support without taking over the activity, this is usually very rewarding for both patients and families. If they lack interest and you feel overwhelmed to look after them, consider asking for help. The disease can cause poor judgment which can lead to overspending (which we mention also under shopping) and other difficulties. Try this:

  • Involve your bank manager, a family member or a friend that you can trust
  • Limit access to one card/bank account only
  • Frequently change passwords on computers to prevent over-use or over-spending online
  • Consider disabling computers or removing hard drives to prevent family members from using the computer


If personal hygiene and grooming get neglected, look for ways to simplify the process. Try this:

  • Try a simple haircut that is easy to manage
  • Switch to an electric razor which has less risk of cuts and is easier to hold
  • When helping with grooming tasks, move slowly and explain what you are doing in a calm voice so that you don’t startle them
  • When washing the face, consider cold creams or disposable face wipes that have cleanser already in them – it will reduce the number of steps needed to finish the task
  • Try oral swabs if brushing becomes too difficult
  • If the patient is physically capable of performing these tasks but uninterested, you can try rewarding the person for completing a grooming task with a favored item or treat.

Household Chores

Decline in doing house chores can be caused by lack of motivation or by planning difficulties. Planning difficulties usually happen because the patient cannot cope with the several steps that are involved in a complex task. Try this:

  • Break down larger tasks into small steps like
    • setting the table
    • stirring
    • preparing one dish at a time
    • fetching, peeling, boiling, draining, allowing to cool, seasoning, etc.
  • Find simpler tasks that the person can complete safely (such as folding laundry)
  • Reward the person with pleasurable activities or healthy treats after finishing a chore


Patients with the behavioral forms of dementia may have difficulties in controlling their shopping habits, for instance, they may want to buy things they do not need, spend more money than necessary or shoplift. Strategies to control impulsive shopping are closely related to the strategies for controlling finances better. Try this:

  • Limit the amount of money easily accessible
  • Take some business cards explaining your family member’s problems along with you when out in public to discreetly hand out to staff in stores, restaurants and banks. These cards can be made on a home computer and can say something like: ‟This person has an Alzheimer’s-like disorder; thank you for your patience” (click here to download cards you can print).
  • If shoplifting is a problem, it may be helpful to let the store management know in advance so that incidents can be handled discretely
  • Avoid letting the person shop alone

If the patient has difficulties in understanding the names of the products, fruits or vegetables, they might avoid shopping altogether even if they used to do it. Try making a list of pictures or packages to simplify comprehension and motivate them to do a familiar activity.


Managing your loved one’s sleep problems will ensure that both of you will get more rest. Try this:

  • Provide at least a little exercise every day – even if it is just a walk around the yard
  • Engage them in a quiet and calming activity before bedtime
  • Keep a consistent schedule of wake and sleep times
  • Give your loved one tasks to complete – folding the laundry, folding napkins, sorting things – to keep them active during the day
  • Keep your loved one hydrated during the day but avoid giving them a lot of fluids before bed time to decrease the likelihood of accidents and/or the need to get up during the night
  • Avoid a lot of TV watching during the day – it usually leads to napping
  • Consider hiring someone to sleep over a couple of nights a week to relieve you of night time duty

Supervision & Safety

It can be difficult to decide when a patient’s activities might be hazardous to themselves or others. Some patients may become less vigilant to risks (crossing a busy street, for example) or show poor judgment (leave the house without telling you). Many patients have trouble acknowledging the risks and hazards and may resist suggestions for increased safety and security. The following are strategies that may be employed. University Health Network (UHN) in Toronto, Canada put together this list of home safety tips and recommendations for people who have problems with their vision due to dementia.

  • Find a companion for the patient
    • Hire a college student to accompany the patient on walks, trips to the movies, or lunch.
    • Network with religious and social organizations to find the right person.
    • Hire an aide through a private agency or your local county health services.
    • Set up a schedule with other family members, so there is not one single family member shouldering the entire burden.
  • Take the patient to work with you if not too disruptive. Some patients may be able to participate in tasks or be content to “hang out”.
  • Hire a social worker or case manager for help in locating resources
  • Try a day program with an environment and activities that are appealing to the patient. Work with the day program staff to help them understand the needs of your loved one.
  • Have an up-to-date picture of the patient that can be given to local law enforcement in the event the patient gets lost.
  • The patient can be registered with the Alzheimer’s Association Safe Return® program. This is a nationwide identification program that provides assistance when a person with dementia becomes lost.
  • Consult a legal expert for advice in setting up trusts, protecting assets, and obtaining financial assistance (state or federal) for caregiving costs.
  • Secured (locked) units are an option in the event there are safety concerns for the patient or others.


As the disease progresses, the patient may lose the ability to understand you or to be understood. Simplify what you say and closely observe their behavior for clues. Try this:

  • Use simple words and short sentences with a calm and soothing tone of voice
  • Maintain a respectful approach and avoid speaking to the person like they are a child
  • Minimize distractions like the television and radio when talking so that your loved one can focus on the conversation
  • Include your loved one in the conversation even if they don’t or can’t respond. They may very well be able to hear and understand but not be able to respond.
  • Try engaging them by completing the following sentences:
    • I remember when…
    • Thank you for…
    • I’m proud of…
  • Don’t rush your loved one – give them time to express themselves
  • Try to read the body language for clues
  • Reading and writing may also be affected, so offer to help proofread or copy letters for them so they stay in touch with friends and family
  • Aphasia identification cards explaining that the person has a language problem can aid in communicating the person’s condition to others

Using the Telephone

Using the telephone can be difficult for people with diseases affecting language as they may feel pressured, but those with behavioral variants may abuse the telephone in other ways – online purchases, inappropriate calls, messages not received, etc. People with memory impairment might forget to write down messages or important information. Try this:

  • Help them prepare a script to be used when they make a telephone call to reduce the stress of coming up with the words
  • Contact your telephone service provider to block incoming calls from telemarketers and sales people
  • Lock the keypad on your cell phone to prevent outgoing calls
  • Have people contact you on your cell phone where they can leave a message you will receive


Having friends and family visit can help relieve social isolation and depression, but be aware that visits can cause fatigue or agitation in your loved one from too much stimulation. You can prepare visitors ahead of time by printing or emailing sections of this website which explain the disease. Try this:

  • Pay attention to how your loved one responds to visitors.
    • Are they welcomed?
    • Are visits tiresome?
    • Do they make your loved one more restless or agitated?
  • Explain to visitors:
    • How to approach
    • How to talk to the patient
    • What to expect from the patient: patients may seem apathetic or disengaged from the visitors. Encourage visitors not to take this personally. The visit can be helpful to the patient and the caregiver, even if the patient seems disinterested. Conversely, inappropriate behavior toward visitors can emerge; if this is likely, warn the visitors in advance and give them an ‟exit strategy” if it becomes too uncomfortable for them.
  • Keep visits short without any expectation of ‟entertaining” the guest
  • Try having visiting hours scheduled into your daily routine and use that time to play games, go for a walk or do something else that your loved one finds enjoyable
  • If you have a meal with friends, prepare them for any changes in eating behavior in advance, so that you do not feel embarrassed. You will be surprised how understanding some friends can be.
  • If the patient gets upset when people leave, try leaving as a meal is served to the patient. The meal often provides enough distraction so that the patient does not get distressed by the caregiver or visitors leaving.

© 2017 The Regents of the University of California


Tips for Alzheimer’s Caregivers: Preparing for the Road Ahead and Getting the Help You Need

( Caring for someone with Alzheimer’s disease or another type of dementia impacts every aspect of your daily life. As an Alzheimer’s patient loses one ability after another, a caregiver faces tests of stamina, problem solving, and resiliency. Maintaining your emotional and physical fitness is crucial, not just for you but also for the person you’re caring for. Preparing yourself, understanding your loved one’s experience, and seeking support from others can help you succeed on the caregiving journey.

The Alzheimer’s and Dementia Care Journey

Caring for someone with Alzheimer’s disease or dementia can be a long, stressful, and intensely emotional journey. But you’re not alone. In the United States, there are about 15 million people caring for someone with dementia, and millions of others around the world. As there is currently no cure for Alzheimer’s disease—and only limited medical treatments available for the symptoms—it is your caregiving that can make the biggest difference to your loved one’s quality of life. That is a remarkable gift.

However, caregiving can also become all-consuming. As your loved one’s cognitive, physical, and functional abilities diminish over a period of years, it’s easy to become overwhelmed and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and an estimated 30 to 40 percent of dementia caregivers will experience depression, high levels of stress, or burnout. Nearly all Alzheimer’s or dementia caregivers will at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury for caregivers; it’s a necessity.

Just as each individual with Alzheimer’s disease progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can help make the caregiving journey as rewarding as it is challenging. Learning all you can about what is happening and what to expect on the Alzheimer’s journey will not only help your loved one, but is also the first step towards protecting your own mental and physical health.

The Challenges and Rewards of Alzheimer’s Care

Caring for a person with Alzheimer’s disease can often seem to be a series of grief experiences as you watch your loved one’s memories disappear and skills erode. The person with Alzheimer’s will change and behave in different, sometimes disturbing or upsetting ways. For both caretakers and their patients, these changes can produce an emotional wallop of confusion, anger, and sadness.

As the disease advances, your loved one’s needs will increase and your caregiving responsibilities will become more challenging. At the same time, the ability of your loved one to show appreciation for all your hard work will diminish. Caregiving can literally seem like a thankless task. For many, though, a caregiver’s long journey includes not only challenges, but also many rich, life-affirming rewards.

Challenges of Alzheimer’s care:

  • Overwhelming emotions as capabilities lessen
  • Fatigue and exhaustion as caregiving demands increase
  • Isolation and loneliness as independence disappears
  • Financial and work complications as costs rise and resources are challenged

Rewards of Alzheimer’s care:

  • Bonds deepen through care, companionship, and service
  • Problem solving and relationship skills grow through experience
  • New relationships form through education and support
  • Unexpected rewards develop through compassion and acceptance

Preparing for the Road Ahead

The more you learn about your loved one’s disease and how it will progress over the years, the better you’ll be able to prepare for future challenges, reduce your frustration, and foster reasonable expectations. In the early stages of Alzheimer’s, for example, you can support your loved one’s independence and self-care, but the person’s cognitive and physical regression means he or she will ultimately require 24-hour care.

Though it may be hard to contemplate such a difficult outlook, the sooner you put plans in place, the more your loved one can be involved in the decision-making process. Paying for long-term care can be a major source of stress, so it’s important to research all your options as early as possible. Consult with the patient’s medical team and other family members to make legal and financial arrangements and determine the long-term care options that are best suited to you and your loved one.

Developing Your Own Personal Support Plan Ahead of Time

Balancing the enormous task of caring for a cognitively-impaired adult with your other responsibilities requires skill, attention, and meticulous planning. By focusing so diligently on your loved one’s needs, it’s easy to fall into the trap of neglecting your own health. But that will not only hurt yourself, but also hurt the person you’re trying to care for. If you’re not getting the physical and emotional support you need, you won’t be able to provide the best level of care, and you face becoming overwhelmed.

Ask for help. It’s important to reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving. Accepting help for mundane tasks such as grocery shopping and cleaning can free you up to spend more quality time with the patient. When someone offers to help, let them. You’re 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.  

Learn or update caregiving skills. Being thrust into the role of caregiver doesn’t come with an instruction manual, but there are books, workshops, and online training resources that can teach you the skills you need. Learn all you can about symptoms, treatment, and behavior management. As the disease progresses and challenges change, you’ll need to update your skillset and find new ways of coping.

Join a support group. You’ll find that you’re not alone and you’ll be able to learn from the experiences of others who have faced the same challenges. Connecting with others who know first-hand what you’re going through can also help reduce feelings of isolation, fear, and hopelessness.

Learn how to manage stress. Caregiving for a loved one with dementia can be one of the most stressful tasks you’ll undertake in life. To combat this stress, you need to activate your body’s natural relaxation response through techniques such as deep breathing, meditation, rhythmic exercise, or yoga. Fitting these activities into your life can help reduce the stress of caregiving and boost your mood and energy levels.

Make use of available resources. There are a wealth of community and online resources to help you prioritize your efforts and provide effective care. Start by finding the Alzheimer’s association in your country. These organizations offer practical support, helplines, advice, and training for caregivers and their families. They can also put you in touch with local support groups. See Resources and References section below for a directory of associations.

Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. It’s easy to abandon the people and activities you love when you’re 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.

Signs of Caregiver Stress and Burnout

No matter how strong and resilient you are, you’re still likely to have problems with certain aspects of Alzheimer’s or dementia care. The stress of day-to-day care, watching your loved one’s health deteriorate, and having to make difficult decisions about long-term care can leave anyone feeling overwhelmed and exhausted. Recognizing the signs of caregiver stress and burnout is the first step to dealing with the problem.

10 Signs of Caregiver Stress

If you experience any of these signs of stress on a regular basis, make time to talk to your doctor.

1. Denial about the disease and its effect on the person who has been diagnosed. “I know Mom is going to get better.”

2. Anger at the person with Alzheimer’s, anger that no cure exists, or anger that people don’t understand what’s happening. “If he asks me that one more time I’ll scream!”

3. Social withdrawal from friends and activities that once brought pleasure. “I don’t care about getting together with the neighbors anymore.”

4. Anxiety about the future. “What happens when he needs more care than I can provide?”

5. Depression that begins to break your spirit and affects your ability to cope. “I don’t care anymore.”

6. Exhaustion that makes it nearly impossible to complete necessary daily tasks. “I’m too tired for this.”

7. Sleeplessness caused by a never-ending list of concerns. “What if she wanders out of the house or falls and hurts herself?”

8. Irritability that leads to moodiness and triggers negative responses and actions. “Leave me alone!”

9. Lack of concentration that makes it difficult to perform familiar tasks. “I was so busy, I forgot we had an appointment.”

10. Health problems that begin to take a mental and physical toll. “I can’t remember the last time I felt good.”

Source: Alzheimer’s Association

When prolonged and excessive stress from caring for a loved one with Alzheimer’s or dementia leaves you feeling emotionally, mentally, and physically exhausted, you may be facing burnout. Burnout reduces your productivity and saps your energy, leaving you feeling helpless, hopeless, angry, and resentful. Eventually, you may feel like you have nothing more to give.

The warning signs of caregiver burnout include:

  • Excessive stress and tension
  • Debilitating depression
  • Persistent anxiety, anger, or guilt
  • Extreme irritability or anger with the dementia patient
  • Decreased overall life satisfaction
  • Relationship conflicts and social isolation
  • Lower immunity and greater need for healthcare services
  • Excessive use of medications, drugs, or alcohol

Burnout can damage your health and the health of the person you’re caring for, so if you recognize the signs, it’s important to take action right away.

Coping with Stress and Burnout

No matter the day-to-day demands of caregiving for a patient with Alzheimer’s or dementia, it’s imperative that you carve out time for your own self-care. These tips can help:

Seek regular respite care. You cannot do it all alone. Ask other family members, friends, or members of your place of worship for help with respite care so you can get a much needed break. You can also seek help from volunteer organizations, support groups, day care programs, and residential respite care facilities. Schedule frequent breaks throughout the day, take time out to pursue hobbies and interests, and stay on top of your own health needs. Seek professional help if you recognize you’re exhibiting any warning signs of caregiver burnout.

Get moving.  Regular exercise not only keeps you fit, it releases endorphins that can really boost your mood. Aim for at least 30 minutes of exercise on most days. If it’s difficult to get away for that long at once, break the time up into 10 minute sessions sprinkled throughout the day. Take a walk or jog outside, dance to your favorite music, work out to an exercise DVD, or cycle to the store. Taking a group exercise class or working out with friends can give you a valuable social outlet as well.

Talk to someone. Talk to a trusted friend, family member, clergy member, or therapist, about how you feel and what you’re going through. The person you talk to doesn’t have to be able to solve your problems, he or she just has to be a good listener. The simple act of talking face-to-face with someone who cares can be extremely cathartic. Opening up won’t make you a burden to others. In fact, most friends will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.

Take time to play. In the early stages of Alzheimer’s disease, include your loved one in short walks, board games, or jigsaw puzzles. Join an online scrabble tournament, practice your golf swing, or play with a pet. A daily dose of fun is good medicine, and doesn’t require money, a car, or huge blocks of time.

Try something new. Challenge yourself to learn a new skill while you are “on the job.” Order a self-paced foreign language program or try an exercise video game. From tennis to golf to pitching a strike, so-called “exergames” offer living room-friendly activities for every age and skill level. With just a few minutes of practice each day, you can flex mental muscle and relieve harmful stress.

See the funny side. Humor is a well-known antidote to stress, sadness, illness, and boredom. Give yourself permission to chuckle at the absurdities you and your loved one experience, and surround yourself with laughter. Instead of heavy dramas on TV or video, go for a hearty belly laugh by watching episodes of your favorite sitcom. Your infectious good mood can help replenish your inner resources and sooth your loved one.

Making Time for Reflection Can Help with Acceptance

One of the biggest challenges as a caretaker for someone with Alzheimer’s or dementia is to accept what is happening to your loved one. At each new stage of the disease, you have to alter your expectations about what your loved one is capable of. By accepting each new reality and taking time to reflect on these changes, you can better cope with the emotional loss, and deepen the feelings of satisfaction and love in your role as caretaker.

Keep a daily journal to record and reflect on your experiences. By journaling your thoughts, you can mourn losses, celebrate successes, and look for those thought patterns that keep you from acting in the present.

Count your blessings. A daily gratitude list can chase away the blues and let you focus on what your loved one is still capable of, rather than the abilities he or she has lost.

Celebrate what is possible. Your loved one still has many abilities. Structure activities to invite participation on whatever level is possible, and you will both find real enjoyment.

Try to envision your loved one’s world. Imagine not being able to remember and do life’s simple tasks. By valuing what your loved one is able to give, you can find satisfaction on even the toughest days.

Practice relaxation techniques. Meditation, deep breathing, visualization, mindfulness, yoga, or rhythmic exercise can calm, restore, and promote happiness. Experiment with different techniques to find the ones that work best for you.

Improve emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.

Tap into the rewards of connecting with the person you’re caring for

Even when the person you’re caring for can no longer verbally express love or appreciation, you can find a deeper sense of reward in your role as caregiver by making time each day to really connect with the person. Avoid all distractions and focus fully on the person. Make eye contact (if that’s possible), hold the person’s hand or stroke his or her cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll experience a process that boosts your mood, reduces stress, and supports your physical and emotional well-being. And it can also have the same effect on your loved one.

How to Help an Alzheimer’s or Dementia Caregiver

If a friend or family member is caring for someone with Alzheimer’s or dementia, it’s important to offer all the help and support you can.

Don’t wait to be asked to help. Many caregivers find it difficult to ask others for help, no matter how much they may need it, so make the offer. And when you do, be specific. As well as simply asking, “What can I do to help?” make suggestions like, “I’m free tomorrow afternoon, can I sit with the patient while you take a break?” or “What can I get you from the grocery store today?” Helping out with even the most simple or mundane chores can free the caregiver up to spend more quality time with the patient or take a break to recharge his or her batteries.

Be a friend. Caregivers are prone to withdrawing from family and friends but they still need regular contact with the outside world. Phone calls, texts, or emails are fine, but nothing beats a personal visit to lift a caregiver’s mood. Again, don’t wait to be asked; be the one to reach out.

Be a good listener. Venting frustrations about caregiving can be a great stress reliever. Listen to the caregiver’s fears and concerns without judging.

Show your gratitude. If the caregiver is a sibling looking after your parent, for example, it’s important to express your gratitude. The person with mid- or late-stage Alzheimer’s or dementia may not able to show appreciation to the caretaker so it’s important other family members recognize the caregiver’s hard work and sacrifice and regularly show their appreciation. While a card or a simple “Thank you” can go a long way, when accompanied by the offer of some respite, it can be a blessing.

Recognize the signs of caregiver stress and encourage the caregiver to focus more on his or her own health and well-being.

Related Articles

Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope

Family Caregiving: Tips for Making Family Caregiving Easier and More Rewarding

Living with Dementia: Coping Tips & Strategies for Both You and Your Family

Care for the Caregiver: Part 1 (Video)

Care for the Caregiver: Part 2 (Video)

Dementia care specialist Teepa Snow discusses the fear of dementia and dealing with the challenges of caring for a loved one. (YouTube/Senior Helpers National)

Caregiver Support

Alzheimer’s Associations – A worldwide directory of Alzheimer’s associations that offer information, advice, and support for caregivers. (Alzheimer’s Disease International)

Family Care Navigator – For caregivers in the U.S., a state-by-state resource to help you locate services and other resources. (Family Caregiver Alliance)

Caregiver Action Plan – Create a personalized action plan for caregiving and link to information, support, and local resources. (Alzheimer’s Association)

Alzheimer’s Caregiving: How to Ask for Help – Suggestions on how to engage family and friends in helping out with patient care. (Mayo Clinic)

Caregiver’s Stress Check – Tests your stress and provides recommendations for addressing common caregiver’s issues. (Alzheimer’s Association)

Caregivers and Mental Health

Depression and Caregiving – Describes the symptoms of caregiver depression and offers suggestions on what to do for yourself if you are depressed as a result of caregiving. (Family Caregiver Alliance)

Dementia, Caregiving and Controlling Frustration – Discusses causes of frustration, warning signs that frustration is occurring, and several methods caregivers can use to help control or alleviate their frustrations. (Family Caregiver Alliance)

Changes to Your Relationship – Information about how the caregiver’s relationships may change: intimacy with the patient, and closeness to family and friends, with tips for resolving family conflicts. (Alzheimer’s Association)

Preventing Caregiver Burnout

Preventing Caregiver Burnout – Caregiver burnout is something you may not notice, but people you know may notice changes in you and express their concern. (Area Agency on Aging)

 PDF version


Authors: Lawrence Robinson, Melissa S. Wayne, M.A. and Jeanne Segal, Ph.D. Last updated: October 2017.

© All rights reserved.


What You May Feel about Being a Family Caregiver: Tips for Making it Easier

( As a family caregiver for an ailing parent, child, spouse, or other loved one, you’re likely to face a host of new responsibilities, many of which are unfamiliar or intimidating. At times, you may feel overwhelmed and alone. But despite its challenges, caregiving can also be extremely rewarding. And there are a lot of things you can do to make the caregiving process easier and more pleasurable for both you and your loved one. These tips can help you get the support you need while caring for someone you love in way that can benefit both of you.

What is Family Caregiving?

As life expectancies increase, medical treatments advance, and increasing numbers of people live with chronic illness and disabilities, more and more of us find ourselves caring for a loved one at home. Whether you’re taking care of an aging parent, a handicapped spouse, or looking after a child with a physical or mental illness, providing care for a family member in need is an act of kindness, love, and loyalty. Day after day, you gift your loved one your care and attention, improving their quality of life, even if they’re unable to express their gratitude.

Regardless of your particular circumstances, being a family caregiver is a challenging role and likely one that you haven’t been trained to undertake. And like many family caregivers, you probably never anticipated you’d be in this situation. However, you don’t have to be a nursing expert, a superhero, or a saint in order to be a good family caregiver. With the right help and support, you can be an effective, loving caregiver without having to sacrifice yourself in the process. And that can make family caregiving a more rewarding experience—for both you and your loved one.

New to Family Caregiving?

Learn as much as you can about your family member’s illness or disability and about how to be a caregiver. The more you know, the less anxiety you’ll feel about your new role and the more effective you’ll be.

Seek out other caregivers. It helps to know you’re not alone. It’s comforting to give and receive support from others who understand exactly what you’re going through.

Trust your instincts. Remember, you know your family member best. Don’t ignore what doctors and specialists tell you, but listen to your gut, too.

Encourage your loved one’s independence. Caregiving does not mean doing everything for your loved one. Be open to technologies and strategies that allow your family member to be as independent as possible.

Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to doctors, family members, and other people involved.

Tip 1: Accept your Feelings

Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It’s important to acknowledge and accept what you’re feeling, both good and bad. Don’t beat yourself up over your doubts and misgivings. These feelings don’t mean that you don’t love your family member—they simply mean you’re human.

What you may feel about being a family caregiver

  • Anxiety and worry – You may worry about how you will handle the additional responsibilities of caregiving and what will happen to your family member if something happens to you. You may also fear what will happen in the future as your loved one’s illness
  • Anger or resentment – You may feel angry or resentful toward the person you’re caring for, even though you know it’s irrational. Or you might be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
  • Guilt – You may feel guilty for not doing more, being a “better” caregiver, having more patience, accepting your situation with more equanimity, or in the case of long distance caregiving, not being available more often.
  • Grief – There are many losses that can come with caregiving (the healthy future you envisioned with your spouse or child; the goals and dreams you’ve had to set aside). If the person you’re caring for is terminally ill, you’re also dealing with that grief.

Even when you understand why you’re feeling the way you do, it can still be upsetting. In order to deal with your feelings, it’s important to talk about them. Don’t keep your emotions bottled up, but find at least one person you trust to confide in, someone who’ll listen to you without interruption or judgment.

Tip 2: Find Caregiver Support

Even if you’re the primary family caregiver, you can’t do everything on your own, especially if you’re caregiving from a distance (more than an hour’s drive from your family member). You’ll need help from friends, siblings, and other family members, as well as health professionals. If you don’t get the support you need, you’ll quickly burn out—which will compromise your ability to provide care.

But before you can ask for help, you need to have a clear understanding of your family member’s needs. Take some time to list all the caregiving tasks required, being as specific as possible. Then determine which activities you are able to meet (be realistic about your capabilities and the time you have available). The remaining tasks on the list are ones you’ll need to ask others to help you with.

Asking family and friends for help

It’s not always easy to ask for help, even when you desperately need it. Perhaps you’re afraid to impose on others or worried that your request will be resented or rejected. But if you simply make your needs known, you may be pleasantly surprised by the willingness of others to pitch in. Many times, friends and family members want to help, but don’t know how. Make it easier for them:

  • Set aside one-on-one time to talk to the person
  • Go over the list of caregiving needs you previously drew up
  • Point out areas in which they might be of service (maybe your brother is good at Internet research, or your friend is a financial whiz)
  • Ask the person if they’d like to help, and if so, in what way
  • Make sure the person understands what would be most helpful to both you and the caregiving recipient

Other places you can turn for caregiver support include:

  • Your church, temple, or other place of worship
  • Caregiver support groups at a local hospital or online
  • A therapist, social worker, or counselor
  • National caregiver organizations
  • Organizations specific to your family member’s illness or disability

Tip 3: Really Connect with Your Loved One

Pablo Casals, the world-renowned cellist, said, “The capacity to care is the thing that gives life its deepest significance and meaning.” When done in the right way, caring for a loved one can bring pleasure—to both you, the caregiver, and to the person you’re caring for. Being calm and relaxed and taking the time each day to really connect with the person you’re caring for can release hormones that boost your mood, reduce stress, and trigger biological changes that improve your physical health. And it has the same effect on your loved one, too.

Even if the person you’re caring for can no longer communicate verbally, it’s important to take a short time to focus fully on him or her. Avoid all distractions—such as the TV, cell phone, and computer—make eye contact (if that’s possible), hold the person’s hand or stroke their cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll experience a process that lowers stress and supports physical and emotional well-being—for both of you—and you’ll experience the “deepest significance and meaning” that Casals talks about.

Tip 4: Attend to Your Own Needs

If you’re distracted, burned out, or otherwise overwhelmed by the daily grind of caregiving, you’ll likely find connecting to the person you’re caring for difficult. That’s why it’s vital that while  you’re caring for your loved one, you don’t forget about your own needs. Caregivers need care, too.

Emotional needs of family caregivers
Take time to relax daily and learn how to regulate yourself and de-stress when you start to feel overwhelmed. As explained above, one way to do that is by really connecting with the person you’re caring for. If that isn’t possible, employ your senses to effectively relieve stress in the moment and return yourself to a balanced state.
Talk with someone to make sense of your situation and your feelings. There’s no better way of relieving stress than spending time face-to-face with someone who cares about you.
Keep a journal. Some people find it helpful to write down their thoughts and feelings to help them see things more clearly.
Feed your spirit. Pray, meditate, or do another activity that makes you feel part of something greater. Try to find meaning in both your life and in your role as a caregiver.
Watch out for signs of depression, anxiety, or burnout and get professional help if needed.
Social and recreational needs of family caregivers
Stay social. Make it a priority to visit regularly with other people. Nurture your close relationships. Don’t let yourself become isolated.
Do things you enjoy. Laughter and joy can help keep you going when you face trials, stress, and pain.
Maintain balance in your life. Don’t give up activities that are important to you, such as your work or your hobbies.
Give yourself a break. Take regular breaks from caregiving, and give yourself an extended break at least once a week.
Find a community. Join or reestablish your connection to a religious group, social club, or civic organization. The broader your support network, the better.
Physical needs of family caregivers
Exercise regularly. Try to get in at least 30 minutes of exercise, three times per week. Exercise is a great way to relieve stress and boost your energy. So get moving, even if you’re tired.
Eat right. Well-nourished bodies are better prepared to cope with stress and get through busy days. Keep your energy up and your mind clear by eating nutritious meals at regular times throughout the day.
Avoid alcohol and drugs. It can be tempting to turn to substances for escape when life feels overwhelming, but they can easily compromise the quality of your caregiving. Instead, try dealing with problems head on and with a clear mind.
Get enough sleep. Aim for an average of eight hours of solid, uninterrupted sleep every night. Otherwise, your energy level, productivity, and ability to handle stress will suffer.
Keep up with your own health care. Go to the doctor and dentist on schedule, and keep up with your own prescriptions or medical therapy. As a caregiver, you need to stay as strong and healthy as possible.


Tip 5: Take Advantage of Community Services

There are services to help caregivers in most communities. Depending on where you live, the cost may be based on ability to pay or covered by the care receiver’s insurance. Services that may be available in your community include adult day care centers, home health aides, home-delivered meals, respite care, transportation services, and skilled nursing.

Caregiver services in your community. Call your local senior center, county information and referral service, family services, or hospital social work unit for contact suggestions. Advocacy groups for the disorder your loved one’s suffering from may also be able to recommend local services. In the U.S., contact your local Area Agency on Aging for help with caring for older family members.

Caregiver support for veterans. If your care recipient is a veteran in the U.S., home health care coverage, financial support, nursing home care, and adult day care benefits may be available. Some Veterans Administration programs are free, while others require co-payments, depending upon the veteran’s status, income, and other criteria.

Your family member’s affiliations. Fraternal organizations such as the Elks, Eagles, or Moose lodges may offer some assistance if your loved one is a longtime dues-paying member. This help may take the form of phone check-ins, home visits, or transportation.

Community transportation services. Many communities offer free or low-cost transportation services for trips to and from medical appointments, day care, senior centers, and shopping malls.

Adult day care. If your senior loved one is well enough, consider the possibility of adult day care. An adult day care center can provide you with needed breaks during the day or week, and your loved one with some valuable diversions and activities.

Personal care services. Help with activities of daily living, such as dressing, bathing, feeding, or meal preparation may be provided by home care aides, hired companions, certified nurse’s aides, or home health aides. Home health aides might also provide limited assistance with things such as taking blood pressure or offering medication reminders.

Health care services. Some health care services can be provided at home by trained professionals such as physical or occupational therapists, social workers, or home health nurses. Check with your insurance or health service to see what kind of coverage is available. Hospice care can also be provided at home.

Meal programs. Your loved one may be eligible to have hot meals delivered at home by a Meals on Wheels program. Religious and other local organizations sometimes offer free lunches and companionship for the sick and elderly.

Tip 6: Provide Long-distance Care

Many people take on the role of designated caregiver for a family member—often an older relative or sibling—while living more than an hour’s travel away. Trying to manage a loved one’s care from a distance can add to feelings of guilt and anxiety and present many other obstacles. But there are steps you can take to prepare for caregiving emergencies and ease the burden of responsibility.

Set up an alarm system for your loved one. Because of the distance between you, you won’t be able to respond in time to a life-threatening emergency, so subscribe to an electronic alert system. Your loved one wears the small device and can use it to summon immediate help.

Manage doctor and medical appointments. Try to schedule all medical appointments together, at a time when you’ll be in the area. Make the time to get to know your loved one’s doctors and arrange to be kept up-to-date on all medical issues via the phone when you’re not in the area. Your relative may need to sign a privacy release to enable their doctors to do this.

Use a case manager. Some hospitals or insurance plans can assign case managers to coordinate your loved one’s care, monitor his or her progress, manage billing, and communicate with the family.

Investigate local services. When you’re not there, try to find local services that can offer home help services, deliver meals, or provide local transportation for your loved one. A geriatric care manager can offer a variety of services to long-distance caregivers, including providing and monitoring in-home help for your relative.

Schedule regular communication with your loved one. A daily email, text message, or quick phone call can let your relative know that they’re not forgotten and give you peace of mind.

Arrange telephone check-ins from a local religious group, senior center, or other public or nonprofit organization. These services offer prescheduled calls to homebound older adults to reduce their isolation and monitor their well-being.

Related articles

Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope

Tips for Alzheimer’s Caregivers: Preparing for the Road Ahead and Getting the Help You Need

Stress Management: Using Self-Help Techniques for Dealing with Stress

Resources and References

Caregiver support services in the U.S.

Caregiving Resource Center – Tools, work sheets and tips on how to plan, prepare and succeed as a caregiver. (AARP)

Find Help in Your Community – Connects families to community-based resources for senior care. (Eldercare Locator)

Searching for Caregiver Information – Covers a wide range of issues, from how to talk to an attorney to federal and state legislation related to caregiving. (Family Caregiver Alliance)

For Family Caregivers: Guides and Checklists – Helps family caregivers of chronically or seriously ill patients navigate home care and the health care system. (Next Step in Care)

Family Caregiver Toolbox – Tips and information to help caregivers care for their loved ones and themselves. (Caregiver Action Network)

Find Aging Resources in Your Area – Portal for options that allow people to choose home and community-based services and living arrangements that suit them best. (National Association of Area Agencies on Aging)

Healthfinder – Find health care and other services near you. (U.S. Department of Health and Human Services)

Caregiver support services in other countries

Your Guide to Care and Support – NHS services available to UK carers of disabled children and adults, including respite care. (NHS)

Find Care and Support – A guide to understanding how to get care and support for seniors in the UK. (Age UK)

Carers – For Australian residents, provides information and support services for older people, people with disabilities and those who provide care and services. (Australian Government)

My Aged Care – Information on contacts and services available to assist you with ageing and aged care issues in Australia, including home care services for seniors. (Australian Government Depart of Health and Ageing)

Carers New Zealand – Offers help and advice for New Zealand carers, including guidance on respite care services. (Carers NZ)

Resources for Seniors – Information on services for seniors in Canada, including in-home support. (Government of Canada)

Meals on Wheels in the U.S.

Meals on Wheels: Find a U.S. Program – A searchable database that allows you to find a Meals on Wheels program in your area of the U.S. (Meals on Wheels Association of America)

Meals on Wheels in other countries

Meals at Home Services (UK) – In the UK, find out if you qualify to receive meals delivered to your home and access a directory of providers in your area. (Directgov)

Meals on Wheels Australia – Find your local Meals on Wheels service in Australia. (Meals on Wheels Australia)

Find a Meals on Wheels Location in Canada – Find a Meals on Wheels and other senior meal programs in your area of Canada. (MealCall)

Long-distance caregiving

Caring From a Distance – An organization for long-distance caregivers in the U.S., providing service directories and helplines. (


Authors: Melinda Smith, M.A. and Jeanne Segal, Ph.D. Last updated: October 2017.



Dementia, Caregiving, and Controlling Frustration

(Family Caregiver Alliance) Caring for an individual with Alzheimerʼs disease or a related dementia can be challenging and, at times, overwhelming. Frustration is a normal and valid emotional response to many of the difficulties of being a caregiver. While some irritation may be part of everyday life as a caregiver, feeling extreme frustration can have serious consequences for you or the person you care for.

Frustration and stress may negatively impact your physical health or cause you to be physically or verbally aggressive towards your loved one. If your caregiving situation is causing you extreme frustration or anger, you may want to explore some new techniques for coping.

When you are frustrated, it is important to distinguish between what is and what is not within your power to change. Frustration often arises out of trying to change an uncontrollable circumstance. As a caregiver of someone with dementia, you face many uncontrollable situations.

Normal daily activities—dressing, bathing, and eating—may become sources of deep frustration for you. Behaviors often associated with dementia, like wandering or asking questions repeatedly, can be frustrating for caregivers but are uncontrollable behaviors for people with dementia. Unfortunately, you cannot simply change the behavior of a person suffering from dementia.

When dealing with an uncontrollable circumstance, you do control one thing: how you respond to that circumstance.

In order to respond without extreme frustration, you will need to:

  • Learn to recognize the warnings signs of frustration.
  • Intervene to calm yourself down physically.
  • Modify your thoughts in a way that reduces your stress.
  • Learn to communicate assertively.
  • Learn to ask for help.

Warning Signs of Frustration

If you can recognize the warning signs of frustration, you can intervene and adjust your mood before you lose control. Some of the common warning signs of frustration include:

  • Shortness of breath
  • Knot in the throat
  • Stomach cramps
  • Chest pains
  • Headache
  • Compulsive eating
  • Excessive alcohol consumption
  • Increased smoking
  • Lack of patience
  • Desire to strike out

Calming Down Physically

When you become aware of the warning signs of frustration, you can intervene with an immediate activity to help you calm down. This gives you time to look at the situation more objectively and to choose how to respond in a more controlled way.

When you feel yourself becoming frustrated, try counting from one to ten slowly and taking a few deep breaths. If you are able, take a brief walk or go to another room and collect your thoughts. It is better to leave the situation, even for a moment, than to lose control or react in a way you will regret.

If you think someone may be offended when you leave the room, you can tell that person you need to go to the restroom. You can also try calling a friend, praying, meditating, singing, listening to music, or taking a bath. Try experimenting with different responses to find out what works best for you and the person you care for.

The regular practice of relaxation techniques can also help prepare you for frustrating circumstances. If possible, try the following relaxation exercise for at least ten minutes each day:

Sit in a comfortable position in a quiet place. Take slow, deep breaths and relax the tension in your body. While you continue to take slow, deep breaths, you may want to imagine a safe and restful place and repeat a calming word or phrase.

Modifying Your Thoughts

As you take time out to collect your thoughts, try rethinking your situation in ways that reduce frustration. How you think often affects how you feel. Of course, feelings of frustration arise from difficult circumstances. If, however, you analyze your response to a frustrating situation, you will usually find some form of maladaptive—or negative—thinking that has the effect of increasing your frustration, preventing you from looking at your situation objectively, or finding a better way to deal with it.

Below are six major types of unhelpful thought patterns common among caregivers. Following each unhelpful thought pattern is an example of an adaptive—or more helpful—thought that can be used as self-defense against frustration. Familiarizing yourself with the unhelpful thought patterns and the adaptive responses can help you control your frustration.


You take one negative situation or characteristic and multiply it. For example, youʼre getting ready to take the person in your care to a doctorʼs appointment when you discover the car battery has died. You then conclude, “This always happens; something always goes wrong.”

Adaptive response: “This does not happen all the time. Usually my car is working just fine. At times things donʼt happen the way I would like, but sometimes they do.”

Discounting the Positive

You overlook the good things about your circumstances and yourself. For example, you might not allow yourself to feel good about caregiving by thinking, “I could do more” or “anyone could do what I do.”

Adaptive response: “Caregiving is not easy. It takes courage, strength, and compassion to do what I do. I am not always perfect, but I do a lot and I am trying to be helpful.”

Jumping to Conclusions

You reach a conclusion without having all the facts. You might do this in two ways:

  1. Mindreading: We assume that others are thinking negative thoughts about us. For example, a friend doesnʼt return a phone call, and we assume that he or she is ignoring us or doesnʼt want to talk to us.Adaptive response: “I donʼt know what my friend is thinking. For all I know, she didnʼt get the message. Maybe she is busy or just forgot. If I want to know what she is thinking, I will have to ask her.”
  2. Fortune-telling: You predict a negative outcome in the future. For example, you will not try adult day care because you assume the person in your care will not enjoy it. You think, “He will never do that. Not a chance!”Adaptive response: “I cannot predict the future. I donʼt think he is going to like it, but I wonʼt know for sure unless I try.”

“Should” Statements

You try to motivate yourself using statements such as “I should call Mother more often” or “I shouldnʼt go to a movie because Mom might need me.” What you think you “should” do is in conflict with what you want to do. You end up feeling guilty, depressed, or frustrated.

Adaptive response: “I would like to go to a movie. Itʼs okay for me to take a break from caregiving and enjoy myself. I will ask a friend or neighbor to check in on Mom.”


You identify yourself or other people with one characteristic or action. For example, you put off doing the laundry and think, “I am lazy.”

Adaptive response: “I am not lazy. Sometimes I donʼt do as much as I could, but that doesn’t mean I am lazy. I often work hard and do the best that I can. Even I need a break sometimes.”


You take responsibility for a negative occurrence that is beyond your control. For example, you might blame yourself when the person in your care requires hospitalization or placement in a facility.

Adaptive response: “Momʼs condition has gotten to the point where I can no longer take care of her myself. It is her condition and not my shortcomings that require her to be in a nursing home.”

Using the “Triple-Column Technique”
Unhelpful thought patterns are usually ingrained reactions or habits. To modify your negative thoughts, you will have to learn to recognize them, know why they are false, and talk back to them.

One helpful way to practice using more adaptive thinking processes is to use the “triple-column technique.” Draw two lines down the center of a piece of paper to divide the paper into thirds. When you are feeling frustrated, take a personal “time out” and write your negative thoughts in the first column.

In the second column, try to identify the type of unhelpful pattern from the six examples above. In the third column, talk back to your negative thoughts with a more positive point of view. See below for examples.

Negative Thoughts
Thought Patterns
Adaptive Thoughts
(Caregiver burns dinner.) “I canʼt do anything right!” Overgeneralization Iʼm not perfect, but nobody is perfect. Sometimes I make mistakes, and sometimes I do things well.
(Caregiver has coffee with a friend and spouse has accident at home.) “Iʼm selfish and rotten! If I had been home, he wouldnʼt have fallen.” Labeling; personalizing Iʼm not selfish or rotten. I do a lot to take care of my husband, but I need to take care of myself as well. He might have fallen even if I had been home.
(Brother does not show up to take your Dad to the doctor.) “I knew I couldnʼt trust him. I should just do it myself next time.” Jumping to conclusions; should statements I donʼt know why he didn’t come, but I need his help, so weʼll have to find ways for him to share the burden of Dadʼs care.


Communicating Assertively

Good communication can reduce frustration by allowing you to express yourself while helping others to understand your limits and needs. Assertive communication is different from passive or aggressive communication. When you communicate passively, you may be keeping your own needs and desires inside to avoid conflict with others. While this may seem easier on the surface, the long-term result may be that others feel they can push you around to get their way.

When you communicate aggressively, you may be forcing your needs and desires onto others. While this allows you to express your feelings, aggressive communication generally makes others more defensive and less cooperative.

When you communicate assertively, you express your own needs and desires while respecting the needs and desires of others. Assertive communication allows both parties to engage in a dignified discussion about the issue at hand.

Keys to assertive communication are:

  • Respecting your own feelings, needs, and desires.
  • Standing up for your feelings without shaming, degrading, or humiliating the other person.
  • Using “I” statements rather than “you” statements. For example, say, “I need a break” or “I would like to talk to you and work this out” instead of “You are irresponsible” or “You never help out!”
  • Not using “should” statements. For example, say, “Itʼs important to me that promises be kept,” instead of “You should keep your promise.”

The Critical Step: Asking for Help

You cannot take on all the responsibilities of caregiving by yourself. It is essential that you ask for and accept help. Discuss your needs with family members and friends who might be willing to share caregiving responsibilities. People will not realize you need help if you do not explain your situation and ask for assistance. Remember, you have the right to ask for help and express your needs.

When to say Yes

Donʼt be afraid to say “Yes” if someone offers to help. Say “Yes” at the moment a person offers to help rather than saying “Maybe” and waiting until you are in a fix. Have a list handy of errands or tasks you need help with. Keep in mind that people feel useful and gratified when they are able to help others.

When to say No

Often, caregivers are pulled in multiple directions. In addition to the demands of caregiving, you may feel compelled to meet the demands of your immediate and extended family, your friends, and your employer. Learn how to say “No” to the demands of others when you are overwhelmed or need a break. It is your right to say “No” to extra demands on your time without feeling guilty.

Learning Effective Communication Techniques for Dementia Caregiving

Many families find it frustrating to communicate with a loved one who has dementia. The person with dementia may repeat questions over and over or mistake you for someone else. It is important to remember that the person with dementia cannot control behavior caused by their disease. They do not need to be corrected or grounded in “reality.” You can distract them or just agree with them as a way to reduce your frustration.

It can be helpful, however, to learn more about dementia and effective communication techniques which will ease your frustration. For example, use simple, direct statements, and place yourself close when speaking to a person with a cognitive disorder. Try not to argue about unimportant things such as what the date is. Allow extra time to accomplish tasks such as dressing. Remember, people with dementia often react more to our feelings than to our words. Finding ways to be calm can help you to gain cooperation. See FCAʼs fact sheet Caregiver’s Guide to Understanding Dementia Behaviors for more helpful strategies.

Self-Care to Prevent Frustration

Caregiving can be tiring and stressful. When youʼre caring for others, itʼs easy to forget to care for yourself. While it may be difficult to find time to focus on yourself and your needs, it is very important that you do so to prevent frustration and burnout. FCAʼs Fact Sheet: Taking Care of YOU: Self-Care for Caregivers offers additional information.

Here are three steps to taking better care of YOU:

Make Time for Yourself

You may feel guilty about needing or wanting time out for rest, socialization, and fun. However, everyone deserves regular and ongoing breaks from work, including caregivers. “Respite” providers can give you the opportunity to take the breaks you need. Respite breaks may be provided by in-home help, adult day care, “friendly visitor” programs, friends and neighbors, or other means. The important point is to allow yourself to take a break from caregiving. See Resources at the end of this fact sheet for organizations that might help you give yourself time off from caregiving.

Take Care of Yourself

Although caregiving may make it difficult to find time for yourself, it is important to eat well, exercise, get a good nightʼs sleep, and attend to your own medical needs.

When you do not take care of yourself, you are prone to increased anxiety, depression, frustration, and physical distress that will make it more difficult to continue providing care.

Seek Outside Support

Sharing your feelings with a counselor, pastor, a support group, or with another caregiver in a similar situation can be a great way to release stress and get helpful advice. You may want to contact the organizations under Resources at the end of this fact sheet, or look in the community services section at the front of the Yellow Pages, under Counseling or Senior Services, to find services to help you get some caregiver support. The FCA fact sheet on Community Care Options also offers information.


Family Caregiver Alliance  
National Center on Caregiving
(415) 434-3388 (800) 445-8106
Email: (link sends e-mail)
FCA CareJourney:
Family Care Navigator:

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimerʼs disease, stroke, traumatic brain injury, Parkinsonʼs, and other debilitating disorders that strike adults.

FCA Fact and Tip Sheets

A listing of all facts and tips is available online at

Caregiver’s Guide to Understanding Dementia Behaviors
Hiring In-Home Help
Taking Care of YOU: Self-Care for Family Caregivers
Caregiving at Home: A Guide to Community Resources

Other Organizations and Links

Alzheimer’s Association (link is external)

National Volunteer Caregiving Network (link is external)
Visit website to find volunteer caregiving assistance.

ARCH National Respite Network and Resource Center (link is external)
Visit website to find local respite providers.

Eldercare Locator (link is external)
Visit website or call to find your local Area Agency on Aging and services for the elderly and caregivers, including respite care providers.


Copyright © 1996–2017 Family Caregiver Alliance.