The following organizations, groups and agencies offer caregivers a variety of resources, ranging from hotlines and support services to webinars and tip sheets, care guides and how-to videos.
AARP Family Caregiving
Find free care guides, legal checklists, care options and an online community that supports all types of family caregivers.
Information and support for people with Alzheimer’s disease and their caregivers. Operates a 24/7 helpline and offers care navigator tools.
ARCH National Respite Network and Resource Center
Find programs and services that allow caregivers to get a break from caring for a loved one.
California Advocates for Nursing Home Reform (CANHR)
Provides information about long-term care, Medi-Cal, Elderlaw attorneys, and other aspects of legal and financial planning.
Caregiver Action Network
Formerly known as the National Family Caregivers Association, it provides information and education for family caregivers, including a volunteer support network in over 40 states.
Community Resource Finder
Easy access to a comprehensive listing of Alzheimer’s and dementia resources, community programs and services.
Connects caregivers to local services and resources for older adults and adults with disabilities across the United States.
Family Caregiver Alliance
Information, education and services for family caregivers, including the Family Care Navigator, a state-by-state list of services and assistance.
Hospice Foundation of America
Provides information on issues related to hospice and end-of-life care.
Memory and Aging Center (UCSF)
Information on dementia and caregiving, along with information about clinical care and research.
National Alliance for Caregiving
A coalition of national organizations focused on family caregiving issues.
National Institute on Aging Information Center
Research leader on aging issues; information on common age-related health problems, dementia, and caregiving.
National Hospice and Palliative Care Organization
Information and resources for hospice and palliative care.
The National Clearinghouse for Long-term Care Information
Information and tools to plan for future long-term care needs.
Social Security Administration
Information on retirement and disability benefits, including how to sign up.
State Health Insurance Assistance Program
A program that offers one-on-one insurance counseling and assistance to people with Medicare and their families.
Veterans Affairs, Department of
Government agency providing resources and benefits for eligible veterans.
Well Spouse Association
Provides support for spousal caregivers.
More at aarp.org.
Help For Your Loved One
Ten tips for communicating with a person with dementia
1. Get the person’s attention. Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have your loved one’s attention; address them by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep them focused. If they are seated, get down to their level and maintain eye contact.
2. Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts more strongly than your words do. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice, and physical touch to help convey your message and show your feelings of affection.
3. State your message clearly. Use simple words and sentences. Speak slowly, distinctly, and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns (he, she, they) or abbreviations.
4. Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show your loved one the choices—visual prompts and cues also help clarify your question and can guide her response.
5. Listen with your ears, eyes, and heart. Be patient in waiting for your loved one’s reply. If they are struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
6. Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what they can, gently remind them of steps they tend to forget, and assist with steps they’re no longer able to accomplish on their own. Using visual cues, such as demonstrating to them with your hand where to place the dinner plate, can be very helpful.
7. When the going gets tough, distract and redirect. If your loved one becomes upset or agitated, try changing the subject or the environment. For example, ask them for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
8. Respond with affection and reassurance. People with dementia often feel confused, anxious, and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support, and reassurance. Sometimes holding hands, touching, hugging, and praise will get the person to respond when all else fails.
9. Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
10. Maintain your sense of humor. Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
Handling troubling behavior
Some of the greatest challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. You can best meet these challenges by using creativity, flexibility, patience, and compassion. It also helps to not take things personally and maintain your sense of humor.
To start, consider these ground rules:
We cannot change the person. The person you are caring for has a brain disorder that shapes who they have become. When you try to control or change their behavior, you’ll most likely be unsuccessful or be met with resistance. It’s important to:
Try to accommodate the behavior, not control the behavior. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable.
Remember that we can change our behavior or the physical environment. Changing our own behavior will often result in a change in our loved one’s behavior.
Check with the doctor first. Behavioral problems may have an underlying medical reason: perhaps the person is in pain or experiencing an adverse side effect from medications. In some cases, like incontinence or hallucinations, there may be some medication or treatment that can assist in managing the problem.
Behavior has a purpose. People with dementia typically cannot tell us what they want or need. They might do something, like take all the clothes out of the closet on a daily basis, and we wonder why. It is very likely that the person is fulfilling a need to be busy and productive. Always consider what need the person might be trying to meet with their behavior—and, when possible, try to accommodate them.
Behavior is triggered. It is important to understand that all behavior is triggered—it occurs for a reason. It might be something a person did or said that triggered a behavior, or it could be a change in the physical environment. The root to changing behavior is disrupting the patterns that we create. Try a different approach, or try a different consequence.
What works today, may not tomorrow. The multiple factors that influence troubling behaviors, and the natural progression of the disease process, mean that solutions that are effective today may need to be modified tomorrow—or may no longer work at all. The key to managing difficult behaviors is being creative and flexible in your strategies to address a given issue.
Get support from others. You are not alone—there are many others caring for someone with dementia. Locate your nearest Area Agency on Aging, the local chapter of the Alzheimer’s Association, a California Caregiver Resource Center, or visit the Family Care Navigator www.caregiver.org/family-care-navigator to find support groups, organizations, and services that can help you. Expect that, like the loved one you are caring for, you will have good days and bad days. Develop strategies for coping with the bad days.
People with dementia walk seemingly aimlessly, for a variety of reasons, such as boredom, medication side effects, or to look for “something” or someone. They also may be trying to fulfill a physical need—thirst, hunger, a need to use the toilet, or exercise. Discovering the triggers for wandering are not always easy, but they can provide insights to dealing with the behavior.
Make time for regular exercise to minimize restlessness.
Consider installing new locks that require a key. Position locks high or low on the door; many people with dementia will not think to look beyond eye level. Keep in mind fire and safety concerns for all family members; the lock(s) must be accessible to others and not take more than a few seconds to open.
Try a barrier like a curtain or colored streamer to mask the door. A “stop” sign or “do not enter” sign also may help.
Place a black mat or paint a black space on your front porch; this may appear to be an impassable hole to the person with dementia.
Add “child-safe” plastic covers to doorknobs.
The Presence Care system can help you keep watch over someone with dementia. Check out the “midnight snack” and “wandering” toggles in the app to be notified when these instances occur.
Put away essential items such as the confused person’s coat, purse, or glasses. Some individuals will not go out without certain articles.
Have your relative wear an ID bracelet and sew ID labels in their clothes. Always have a current photo available should you need to report your loved one missing. Consider leaving a copy on file at the police department or registering the person with the Alzheimer’s Association Safe Return program or other emergency tracking service.
Tell neighbors about your relative’s wandering behavior, and make sure they have your phone number.
Help For You
Whether you are just beginning the caregiving journey or have stepped into a full-time caregiving role, it is critical that you don’t neglect your own needs. The resources and support you will need may vary based on your situation, but finding great strategies and making them habits will lead to providing quality care for your loved one while also caring for yourself.
No matter how long or how often you are called upon to help, you’ll likely find that caregiving has ups and downs.
Keep in mind:
Taking care of someone can be physically and emotionally exhausting. It can impact your time, energy and financial resources. It can drastically change your lifestyle and your home environment—especially if you are providing care in your home.
Dealing with Frustration and Stress
You might think that caregivers are asked how they feel about taking on the job of caregiving, but many are not asked; it’s just assumed they will take on the job. That carefree approach can be fraught with stress not only for the caregiver, but also for the patient and other family members who may have to step in quickly and take over.
Gail Hunt, president/CEO of National Alliance for Caregiving, Bethesda, Maryland, adds “Not everyone takes time to ask if a family member is willing to perform necessary tasks like moving a spouse in and out of the bathtub or the car or even if they can carry out a daily caregiving routine because of their own health issues.”
Understanding the risks of caregiving can help minimize stress and maximize the rewards associated with your job.
A caregiver risks:
Feeling lonely and isolated
Feeling worried about your own health
Feeling stressed about losing your ‘day-job’ and personal relationships
Feeling resentful because you didn’t choose to be a caregiver
Hunt said 60 percent of family caregivers also work full-time. “They may have to pass up promotions at work, face lost wages and Social Security benefits, take a leave from their job and pay for things the patient needs out of their own pocket.”
Surprisingly, research has shown that caregivers tend to feel positive about the experience and in fact, they say it helps them feel closer to the person in their care.
But Hunt added, “If a person feels they didn’t have a choice about being a caregiver, they are more at risk for feeling anxious and stressed.”
If you find the stress of caregiving is having a negative impact on your life, you’ll find ideas for reducing stress at: www.helpguide.org/topics/stress.htm
You can also read more about other people’s experience with caregiving at Today’s Caregiver www.caregiving.com.
Avoid Feeling “Home-Alone”
To caregiving resources so you can alleviate stress and gain valuable insight and support
To friends who can help you feel refreshed and connected to the world around you
To new ideas and possibilities for making caregiving less overwhelming
To opportunities for making new friends
Reach out and learn from other caregivers. This website features caregivers asking questions and helping each other. www.caregiving.com/learn/faqs/
Modifying Your Home
If you live with the people you are caring for, you may have to modify your home to fit their health and mobility needs.
One caregiver built an apartment in her garage with an oversized bath so the space could accommodate her mother. She converted her dining room into a hospital room with a hospital bed and oxygen for her uncle. Insurance covered some costs but not all. Check with your loved ones’ insurance provider for more information about coverage for home health materials.
Time Out from Caregiving
Many people find that they need to hire an individual or a community resource to come in and give the caregiver relief.
Caregiving support groups can teach you:
How to slow down and stop trying so hard to be “everything to everyone.”
How to take good care of yourself
How to set limits and ask for help
How to overcome feeling anxious, scared, overwhelmed and feeling all alone.
The AARP provides information about finding caregiving support: www.aarphealthcare.com/choosing-caregiving.html and a free caregiving support hotline at 1-877-333-5885.
Follow a Plan of Care
If your loved one is in the hospital, you’ll benefit from putting your caregiver’s hat on right away by being present for all discussions about discharge and follow-up care. The Centers for Medicare and Medicaid Services also has planning practices in place at hospitals to help families when a loved one is being discharged.
Even though caregivers implement many family planning decisions, it’s not uncommon for physicians to just talk to the patient about key issues. Family caregivers are often excluded from the conversation, but they absolutely need to be included. They are on the front line of what is expected at home.
A Balanced Life
How do you take better care of yourself while caregiving?
Balance the demands of caregiving with reading, exercise and taking breaks.
Set a timer for blocks of time like 30-minute intervals to read, take a walk, journal, and poke around your garden or sit on the porch and do nothing.
Go easy on overindulging in food or Internet shopping and stay socially engaged. Don’t cut yourself off from social activities. Perhaps the best skill a caregiver can learn is how to let friends help you. When someone says they wish they could help, be specific. Tell them you need to run an errand and would like them to come by and stay with your loved one for a short time. Maintain a healthy lifestyle.
Tell friends when you’re available for a chat. “Put your phone number in your notes and make specific suggestions,” said Clohan. “You might say the nights are quiet now that your loved one rests so much and you’d love to chat if they could call you after 8 p.m. It’s amazing how simple, specific suggestions can help keep personal communications going.”
More at www.cfah.org.
Here are eight things every caregiver should remember for themselves:
Find emotional support
Joining a support group can help you meet people who truly understand the difficult situation you’re facing. If leaving home is too difficult, there’s also plenty of support online.
It’s true that you are not as effective in any role when you are running on empty. Stick to your exercise routine, maintain good eating habits and get your 7-8 hours of sleep a night. The only way to maintain your health is to prioritize these habits, put them in your schedule and maintain consistency.
Ask for and accept help
Family and friends want to help, but they usually don’t know how or what to do. Next time someone offers support, be prepared with a few ideas; such as dropping off dinner, running to the pharmacy or even watering the flowers. Taking these simple tasks off your to-do list relieves pressure for you and provides fulfillment to the helper.
Get formal training
Educational support can better equip a person for the role. There are in-person sessions, workshops and even online training options. For example, at HelpforAlzheimersFamilies.com there are a series of classes that walk through the basics of Alzheimer’s disease as well as tips and techniques for minimizing symptoms and creating meaningful days at home.
We all have emotions, it’s normal; but what we do with those emotions is where we can impact others and ourselves. Next time you are feeling those emotions, stop and ask yourself what’s causing them and if there is anything you can do. A lot of the time we don’t have control of situations, but when we recognize this, it’s easier to let it go.
Take a break
There will be a time when you will feel overwhelmed; it is natural. Whether it’s a 15-minute power nap, reading the next chapter in your book, journaling or even a week vacation, take breaks. Even go a step further and indulge yourself in a spa treatment or play another round of golf. Taking time away from this role will only make you a better caregiver and enrich the life of your loved one.
Pardon the interruption
Life may occasionally become chaotic, so be prepared for it, accept it and cherish the times of status quo. When the body and mind age, you may see physical and emotional decline in your loved one causing added stress to your life. Understand you will get back to a “new normal” but being organized and striving for the “routine” will help lead you back to your regularly scheduled life.
Share the responsibility
It is okay to maintain your current role as daughter or spouse, for example, and share the caregiving responsibilities. Enlisting professional help is a great option to maintain the current relationship with the care recipient.