Dementia & Driving: Help from the Alzheimer’s Association

(Alzheimer’s Association) Driving demands quick reaction time and fast decision making — because of this, a person with Alzheimer’s will eventually become unable to drive. Dealing with the issue early on can help ease the transition.

Having the Conversation

Losing the independence driving provides can be upsetting. It is important to acknowledge a person’s feelings and preserve his or her independence, while ensuring the person’s safety and the safety of others.

Starting the conversation

  • Initiate a dialogue to express your concerns. Stress the positive and offer alternatives.
  • Address resistance while reaffirming your unconditional love and support.
  • Appeal to the person’s sense of responsibility.
  • Reinforce medical diagnoses and directives. Ask the physician to write a letter stating that the person must not drive. Or ask the physician to write a prescription that says, “No driving.” You can then use the letter or prescription to reinforce the conversation.
  • Consider an evaluation by an objective third party.
  • Understand that this may be the first of many conversations about driving

When the conversation does not go well

Some people give up driving easily, but for others this transition can be very difficult. Be prepared for the person to become angry with you, due to the memory and insight issues that are part of Alzheimer’s.

  • Be patient and firm. Demonstrate understanding and empathy.
  • Acknowledge the pain of this change and appeal to the person’s desire to act responsibly.
  • Ask a respected family authority figure or your attorney to reinforce the message about not driving.
  • If the conversation does not go well, do not blame yourself. The disease can impair insight and judgment, making it difficult for people to understand that their driving is no longer safe. Also the disease can cause mood and personality changes that make reactions more pronounced.
  • As a last resort, take away the car keys, disable the car or remove the car completely. When you do any of these things, be sure to provide safe, reliable alternative transportation.

Planning Ahead

For people in the early stages of Alzheimer’s, it is never too soon to plan ahead for how you will get around when you can no longer drive. Putting a plan in place can be an empowering way to make your voice heard.

Tips for planning ahead

  • Remember that each situation is unique. What works for one person may be different from what works for another. You can get the information and support you need from the Alzheimer’s Association at 800.272.3900.
  • Involve family and close friends in the plan.
  • Confront resistance. Empathize with those who are uncomfortable having the conversation and stress the importance of preparing for the future.
  • Develop an agreement for all to share that includes practical safety steps, such as a periodic driving assessment, a GPS monitoring system for the car, and alternate transportation options.

Transportation Options

Driving is not the only transportation option available. There are many options people can explore that will allow them to continue to travel independently and remain in control of their mobility.

  • Transition driving responsibilities to others. Arrange for family members and friends to provide transportation.
  • Arrange a taxi service.
  • Use special transportation services for older adults. Access local resources using the Eldercare Locator at or use our Community Resource Finder to search for transportation services.
  • Reduce the need to drive by having prescription medicines, groceries or meals delivered.

Signs of Unsafe Driving

Determining when someone can no longer safely drive requires careful observation by family and caregivers. The following list provides warning signs that it’s time to stop driving:

  • Forgetting how to locate familiar places
  • Failing to observe traffic signs
  • Making slow or poor decisions in traffic
  • Driving at an inappropriate speed
  • Becoming angry or confused while driving
  • Hitting curbs
  • Using poor lane control
  • Making errors at intersections
  • Confusing the brake and gas pedals
  • Returning from a routine drive later than usual
  • Forgetting the destination you are driving to during the trip

Driving Evaluation

At the earliest stages, a person with Alzheimer’s disease may begin to have difficulty with complex tasks such as driving. Although family and caregivers can watch for signs of unsafe driving, a proactive strategy would be to get a comprehensive driving evaluation by an occupational therapy driving rehabilitation specialist. The evaluation provides a more objective understanding of the current impact of the disease on driving capacity and results in a plan of options. The goal is always to retain the highest level of independence and mobility in the community. Initial recommendations may include strategies to reduce driving risk during the early part of the disease. The occupational therapist can offer strategies specific to the individual’s goals and needs. The American Occupational Therapy Association website includes a national database of driving specialists as well as a wealth of resources for both persons with Alzheimer’s disease and their families.

We Can Help

Each situation is unique. What works for one person may be different from what works for another. You can get the information and support you need from the Alzheimer’s Association.

More Resources


Copyright © 2018  Alzheimer’s Association®. All rights reserved.


Advance Care Planning: Getting Your Affairs in Order

(National Institute on Aging)

Ben’s Story

Ben has been married for 47 years. He always managed the family’s money. But since his stroke, Ben is not able to walk or talk. His wife, Shirley, feels overwhelmed. Of course, she’s worried about Ben’s health. But, on top of that, she has no idea what bills should be paid or when they are due.

Louise’s Story

Across town, 80-year-old Louise lives alone. One night, she fell in the kitchen and broke her hip. She spent a week in the hospital and 2 months in a rehabilitation nursing home. Even though her son lives across the country, he was able to pay her bills and handle her Medicare questions right away. That’s because, several years ago, Louise and her son made a plan about what he should do in case Louise had a medical emergency.

Plan for the Future

No one ever plans to be sick or disabled. Yet, it’s this kind of planning that can make all the difference in an emergency.

Long before she fell, Louise put all her important papers in one place and told her son where to find them. She gave him the name of her lawyer, as well as a list of people he could contact at her bank, doctor’s office, insurance company, and investment firm. She made sure he had copies of her Medicare and other health insurance cards. She added her son’s name to her checking account and safe deposit box at the bank. Louise made sure Medicare and her doctor had written permission to talk with her son about her health and insurance claims.

On the other hand, Ben always took care of family money matters, and he never talked about the details with Shirley. No one but Ben knew that his life insurance policy was in a box in the closet or that the car title and deed to the house were filed in his desk drawer. Ben never expected that his wife would have to take over. His lack of planning has made a tough job even tougher for Shirley.

What Exactly Is an “Important Paper”?

The answer to this question may be different for every family. Remember, this is a starting place. You may have other information to add. For example, if you have a pet, you will want to include the name and address of your veterinarian. Include complete information about:

Personal Records

  • Full legal name
  • Social Security number
  • Legal residence
  • Date and place of birth
  • Names and addresses of spouse and children
  • Location of birth and death certificates and certificates of marriage, divorce, citizenship, and adoption
  • Employers and dates of employment
  • Education and military records
  • Names and phone numbers of religious contacts
  • Memberships in groups and awards received
  • Names and phone numbers of close friends, relatives, doctors, lawyers, and financial advisors
  • Medications taken regularly (be sure to update this regularly)
  • Location of living will and other legal documents

Financial Records

  • Sources of income and assets (pension from your employer, IRAs, 401(k)s, interest, etc.)
  • Social Security and Medicare/Medicaid information
  • Insurance information (life, health, long-term care, home, car) with policy numbers and agents’ names and phone numbers
  • Names of your banks and account numbers (checking, savings, credit union)
  • Investment income (stocks, bonds, property) and stockbrokers’ names and phone numbers
  • Copy of most recent income tax return
  • Location of most up-to-date will with an original signature
  • Liabilities, including property tax—what is owed, to whom, and when payments are due
  • Mortgages and debts—how and when they are paid
  • Location of original deed of trust for home
  • Car title and registration
  • Credit and debit card names and numbers
  • Location of safe deposit box and key

Legal Documents

There are many different types of legal documents that can help you plan how your affairs will be handled in the future. Many of these documents have names that sound alike, so make sure you are getting the documents you want. Also, State laws vary, so find out about the rules, requirements, and forms used in your State.

Wills and trusts let you name the person you want your money and property to go to after you die.

Advance directives let you make arrangements for your care if you become sick. There are two ways to do this:

  • A living will gives you a say in your health care if you become too sick to make your wishes known. In a living will, you can state what kind of care you do or don’t want. This can make it easier for family members to make tough healthcare decisions for you.
  • A durable power of attorney for health care lets you name the person you want to make medical decisions for you if you can’t make them yourself. Make sure the person you name is willing to make those decisions for you.

For legal matters, there are two ways to give someone you trust the power to act in your place:

  • A general power of attorney lets you give someone else the authority to act on your behalf, but this power will end if you are unable to make your own decisions.
  • A durable power of attorney allows you to name someone to act on your behalf for any legal task, but it stays in place if you become unable to make your own decisions.

Who Can Help Me Put My Legal and Financial Affairs in Order?

You may want to talk with a lawyer about setting up a general power of attorney, durable power of attorney, joint account, trust, or advance directive. Be sure to ask about the lawyer’s fees before you make an appointment.

You should be able to find a directory of local lawyers at your library, or you can contact your local bar association for lawyers in your area. Your local bar association can also help you find what free legal aid options your State has to offer. An informed family member may be able to help you manage some of these issues.

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

For More Information About Getting Your Affairs in Order

1-888-687-2277 (toll-free)
1-877-434-7598 (TTY/toll-free)
1-877-342-2277 (español/línea gratis)
1-866-238-9488 (TTY/línea gratis)

National Hospice and Palliative Care Organization
1-800-658-8898 (toll-free)

Centers for Medicare & Medicaid Services
1-800-633-4227 (toll-free)
1-877-486-2048 (TTY/toll-free)

Eldercare Locator
1-800-677-1116 (toll-free)



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.


Why Do People Die from Alzheimer’s Disease?

( Dear Readers: I recently went out for coffee with a friend of mine. She wanted to know if people can actually die from Alzheimer’s disease. I told her that Alzheimer’s is fatal; there is no cure. In late stages of the disease, it affects many functions of the brain and body which will eventually lead to death.

Here is a definitive answer from Dr. Maurizio Grimaldi about why people die from Alzheimer’s disease. Dr. Grimaldi is the Leader of the Neuropharmacology and Neuroscience Laboratory at Southern Research Institute in Alabama and specialized in clinical pharmacology. He is a co-investigator in the NIH-NINDS Drug Screening for Neurodegenerative Diseases and Stroke.

Q: If Alzheimer’s is a disease of the memory, how do people die from it?

A: Alzheimer’s disease (AD) is very complex and always fatal.

It manifests initially with marked memory failure, but as it progresses, it also has an effect on higher brain functions. In the later stages of the disease, balance and coordination as well as autonomic functions like heart rate, breathing, digestion and sleep cycles are severely affected.

When the clinical picture of the disease is fully developed, a patient will be unable to perform the tasks that keep our bodies alive and functioning. Neurological damage causes the patient to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, maintain control of their bladder and bowels, feed themselves, chew, and swallow food without significant assistance and careful supervision. The later stages can be both emotionally and physically taxing not only for patients themselves, but also for their family caregivers. At this point, if the subject has not already been discussed, family members may wish to consider hospice care for their loved one.

This lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure and inability to receive proper nutrition and hydration are all factors in the development of other life-threatening diseases. While brain damage associated with AD is the driving force behind the patient’s decline and incapacitation, these secondary illnesses and conditions are actually responsible for causing the patient’s death and are commonly cited as such on death certificates.

The most prevalent cause is a secondary infection, commonly pneumonia. Bacterial infections could be easily remedied with a course of antibiotics in healthy individuals. However, advanced AD patients are usually too frail and immunocompromised to fight, even with the assistance of these drugs. Infections often return after treatment, and many patients or their family members make the decision to forgo aggressive treatment options and/or resuscitation efforts that may cause pain and discomfort for only a short-term benefit.

All of the below conditions can cause or contribute to multiple organ failure and death.

  • Heart attack
  • Dehydration and malnutrition, whether through a voluntary stopping of eating and drinking (VSED) health care directive or the natural dying process
  • Injuries and fractures caused by falls
  • Thromboembolisms
  • Pressure ulcers (bedsores)
  • Stroke
  • Kidney failure
  • Lung infections like aspiration pneumonia due to inhalation of food particles
  • Sepsis (if infections like UTIs and pneumonia spread)

Unfortunately, deaths with a primary cause of Alzheimer’s disease and other forms of dementia are seriously underreported. This is especially true since AD can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis.


2016 AgingCare, LLC. All rights reserved.


Helping Family and Friends Understand Alzheimer’s Disease

(National Institutes of Health) When you learn that someone has Alzheimer’s disease, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. Realize that family and friends often sense that something is wrong before they are told. Alzheimer’s disease is hard to keep secret.

There’s no single right way to tell others about Alzheimer’s disease. When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s. You can:

  • Tell friends and family about Alzheimer’s disease and its effects.
  • Share articles, websites, and other information about the disease.
  • Tell them what they can do to help. Let them know you need breaks.

Tips for Communicating

You can help family and friends understand how to interact with the person with Alzheimer’s disease. Here are some tips:

  • Help family and friends realize what the person can still do and how much he or she still can understand.
  • Give visitors suggestions about how to start talking with the person. For example, make eye contact and say, “Hello George, I’m John. We used to work together.”
  • Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something. Instead, ask visitors to respond to the feelings expressed or talk about something different.
  • Help family and friends plan fun activities with the person, such as going to family reunions or visiting old friends. A photo album or other activity can help if the person is bored or confused and needs to be distracted.

Remind visitors to:

  • Visit at times of day when the person with Alzheimer’s is at his or her best.
  • Be calm and quiet. Don’t use a loud voice or talk to the person as if he or she were a child.
  • Respect the person’s personal space, and don’t get too close.
  • Not take it personally if the person does not recognize you, is unkind, or gets angry.

When You’re Out in Public

Some caregivers carry a card that explains why the person with Alzheimer’s might say or do odd things. For example, the card could read,

“My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for your understanding.”

The card allows you to let others know about the person’s Alzheimer’s disease without the person hearing you. It also means you don’t have to keep explaining things.

Helping Children Understand AD

When a family member has AD, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. How much and what kind of information you share depends on the child’s age. It also depends on his or her relationship to the person with AD.

Give children information about AD that they can understand. There are good books about AD for children of all ages. Some are listed on the Alzheimer’s Disease Education and Referral (ADEAR) Center website,

Here are some other suggestions to help children understand what is happening:

  • Answer their questions simply and honestly. For example, you might tell a young child, “Grandma has an illness that makes it hard for her to remember things.”
  • Help them know that their feelings of sadness and anger are normal.
  • Comfort them. Tell them no one caused the disease. Young children may think they did something to hurt their grandparent.

If the child lives in the same house as someone with AD:

  • Don’t expect a young child to help take care of or “babysit” the person with AD.
  • Make sure the child has time for his or her own interests and needs, such as playing with friends, going to school activities, or doing homework.
  • Make sure you spend time with your child, so he or she doesn’t feel that all your attention is on the person with AD.
  • Help the child understand your feelings. Be honest about your feelings when you talk with a child, but don’t overwhelm him or her.

Many younger children will look to you to see how to act around the person with AD. Show children they can still talk with the person, and help them enjoy things each day. Doing fun things together can help both the child and the person with AD.

Here are some things they might do:

  • Do simple arts and crafts.
  • Play music.
  • Sing.
  • Look through photo albums.
  • Read stories out loud.

Some children may not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be a sign that they are upset. You may want to ask a school counselor or a social worker to help your child understand what is happening and learn how to cope. Be sure to check with your child often to see how he or she is feeling.

A teenager might find it very hard to accept how the person with AD has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. It’s a good idea to talk with teenagers about their concerns and feelings. Don’t force them to spend time with the person who has AD. This could make things worse.

Respite Care

If the stress of living with someone who has AD becomes too great for a child, think about placing the person with AD into a respite care facility. Then, both you and your child can get a much-needed break. See “Respite Services” for more information about respite care.

Other Resources

For more caregiving tips and other resources:


National Institute on Aging


Caregiver Training: What You Need to Know

(BrightFocus Foundation)  Family caregivers often ask how to find training to properly care for someone with Alzheimer’s or other forms of dementia. This article summarizes what you need to know and where to obtain this information.

Whether from a family caregiver who is new to caregiving, or from one who has been caring for someone further into their disease process, geriatric professionals are frequently asked for advice by family caregivers. New caregivers may want to understand what they are getting into, and more experienced caregivers may have realized there is more to it than they had first expected.

Regardless of the timing, seeking out additional education and training is a smart step to take as a family caregiver. With Alzheimer’s and related dementias having unique characteristics, specific education and training, including how to help someone with their activities of daily living—i.e. feeding, bathing, dressing, etc, will help you prepare for the many challenges of these diseases.

Building Your Alzheimer’s and Dementia Caregiver Knowledge—What You Need to Know and Where You Can Find It

A good starting place is to build a fundamental knowledge of Alzheimer’s and related dementias. Doing so will build the foundation for an effective caregiver. To start, your learning should include the following:

Where Can I Get Answers to My Questions?

  • Your loved one’s physician: the medical professional who manages the medical care and/or their Alzheimer’s or dementia is your partner in this caregiving journey. As the loved one’s physician, they can help you understand the illness, and be a guide through the specific challenges you may encounter.
  • Independent study: work independently to seek knowledge of the illness. Read books, research online information, and seek out local resources such as caregiver support groups. Each has a place in your education and support as an Alzheimer’s and dementia caregiver.

Learning Online

The internet abounds with information, and finding online information about Alzheimer’s and other forms of dementia may be the easier part of one’s caregiving education. Some credible online resources include:

  • the BrightFocus Foundation’s mission is to drive innovative research worldwide and promote awareness of Alzheimer’s disease, macular degeneration, and glaucoma
  • this is the federal government’s website about Alzheimer’s and related dementias.
  • the National Institute on Aging is the aging research arm of the National Institute of Health.

Local and Community Resources

Your local Area Agency on Aging or the Aging and Adult Services in your city or county are the go-to resources at the local level. These agencies have knowledge of local public and private resources, and of training that may be available to caregivers.

Connecting to local resources will also give you the chance to connect with other local caregivers. You can learn from one another, and create a support system for yourselves and others. Caregiving is easier when we give each other support.

Eldercare Locator:

Honing Your Caregiving Skills with Hands-on Training

Once you’ve got the knowledge, and you know where to go for additional help and support, how do you develop the skills to care for someone with Alzheimer’s or a related dementia?

Knowledge of Alzheimer’s and other dementias is fundamental, but learning and practicing the skills you need in the daily course of caregiving will help you in the actual moments as a caregiver.  Practice will help you build skills and competence. Some resources for caregiver training follow below.

Keep Your Knowledge, Skills and Training Growing

Alzheimer’s and dementia research is an area of medicine that is constantly evolving. There is always new information, new research findings, and new training opportunities. One way to keep your knowledge fresh and current is to subscribe to any of the many newsletters that are available from online sources, such as those above, and at



Kathleen Allen, LCSW, C-ASWCM, Senior Care Management Services, LLC

Copyright 2017 BrightFocus Foundation. All rights reserved.


Women at Risk for Alzheimer’s Disease May Face Critical Window

(HealthDay News) Women genetically predisposed for Alzheimer’s face a 10-year window when they have a greater chance of developing the disease than men with similar genetic risks, new research suggests. According to the study, “genetically vulnerable” white men and white women aged 55 to 85 have similar odds for developing Alzheimer’s except from 65 to 75 years old, when the risk appears to jump for women. The study was the first to derive its population and data primarily from the Global Alzheimer’s Association Interactive Network (GAAIN), made possible by the Alzheimer’s Association through a $5 million investment to advance and accelerate understanding of the disease and to drive important discoveries.

Women with a genetic predisposition for Alzheimer’s disease face a 10-year window when they have far greater chances of developing the disease than men with similar genetic risks, a new analysis suggests.

That window seems to occur between ages 65 and 75 — more than 10 years after the start of menopause, say University of Southern California researchers who reviewed 27 prior studies.

“Menopause and plummeting estrogen levels, which on average begins at 51, may account for the difference,” said study co-author Judy Pa. She is an assistant professor of neurology at the USC Neuroimaging and Informatics Institute.

“However, scientists still don’t know what is responsible. Researchers need to study women 10, 15 or even 20 years before their most vulnerable period to see if there are any detectable signals to suggest increased risk for Alzheimer’s in 15 years,” Pa said in a university news release.

According to the study, “genetically vulnerable” white men and white women aged 55 to 85 have similar odds for developing the disease except during those 10 years, when the risk appears to jump for women.

But more research is needed to prove the study’s assumptions, the study authors acknowledged.

The study challenges long-held beliefs about Alzheimer’s risk. It also may have significant implications for women, since nearly two-thirds of the more than 5 million Americans now living with Alzheimer’s disease are female.

“Our discovery is important because it highlights how clinical trials could be weighted toward women — a susceptible part of the population — to help scientists more rapidly identify effective drug interventions to slow or cure Alzheimer’s,” said Arthur Toga, director of the Neuroimaging and Informatics Institute.

The analysis focused on more than 31,000 white North Americans and Europeans in the Global Alzheimer’s Association Interactive Network. All were diagnosed with Alzheimer’s between the ages of 55 and 85.

The researchers honed in on a gene variant linked to Alzheimer’s, known as ApoE4.

The researchers noted that it’s commonly assumed that women are at higher risk for Alzheimer’s because they tend to live longer than men. This is likely an oversimplification.

The researchers pointed out that higher rates of heart disease and stroke among men could mean that men who survive into older age are healthier than their female peers and at lower risk for Alzheimer’s.

The study authors suggested that some day doctors attempting to prevent the memory-robbing disease might treat men and women at different ages.

Not all women in their mid-60s or mid-70s are more likely than men to develop Alzheimer’s, however. The ApoE4 gene is a risk factor for the illness, but screening for it doesn’t provide conclusive answers about what the future will hold, the researchers cautioned.

“There is controversy in terms of whether people should know their ApoE status because it is just a risk factor,” Pa said. “It doesn’t mean you’re going to get Alzheimer’s disease.”

The researchers said larger and diverse studies that involve more women and minorities are needed to confirm their findings.


The study was published Aug. 28 in Journal of the American Medical Association Neurology.

SOURCE: Keck School of Medicine, University of Southern California, news release, Aug. 28, 2017

Mary Elizabeth Dallas

Copyright © 2017 HealthDay. All rights reserved.



Home Away from Home: Relocating Your Parents

(Family Caregiver Alliance) As you’ve watched your parents get older, perhaps you have struggled with situations such as these:

  • You’ve travelled to visit your mother for the holidays, and found her refrigerator nearly empty, her bills unpaid and her house in disarray.
  • A neighbor has called you to report that your father was wandering in the street, unable to find the home he’s lived in for 30 years.
  • Your mother has neglected to take her diabetes medications, severely compromising her health.
  • Your very independent father fell and broke his hip, making it impossible to navigate the stairs in his home.

If there is a decline in cognitive abilities as a result of Alzheimer’s disease or a related dementia, or a shift in a medical condition that requires increased care, there is clear cause to be concerned about your parent’s welfare. It may be time to consider a move to a safer environment.

But where should he or she live? Often your first inclination is to move Mom or Dad into your home—but this major life change deserves thoughtful examination, and there are many alternatives to explore. This Fact Sheet offers advice and summarizes the issues to consider before making the important and challenging decisions regarding relocating your parent.

First Step: Open Discussions

Open and honest discussion with your parent and other family members becomes an essential first step when you are trying to decide if moving your parent to a new living situation is the right thing to do. Family meetings with your parent, spouse, children, siblings and other key people will help everyone share their views and will help you decide how best to proceed. Active communication among all family members is the building block to a strong support system for an older parent and all family members involved.

Although some of these discussions may be very difficult and emotional, several topics require attention. Together, the family—including your parent—will need to talk about:

  • all possible residential options
  • the type of care needed
  • finances
  • each person’s role in the transition
  • changes in lifestyle
  • the location of the new home

Expectations must be defined and clear to everyone involved. The following can help guide your discussions.

The Level of Care Needed

As your parent gets older, his/her care needs will change, and in most cases become more challenging. It’s essential to develop a strategy for providing care, and this requires both practicality and planning. Consulting with a Geriatric Care Manager or social worker may be beneficial as you consider your options and what you will and will not be able to do for your parent.

  • Evaluate whether your parent needs constant supervision or assistance throughout the day and how this might be provided.
  • Determine which activities of daily living (such as eating, bathing, toileting) your parent can do independently.
  • Determine your comfort level for providing personal care such as bathing or changing an adult incontinence pad.
  • Evaluate your own health and physical abilities to help decide if you are able to provide care for your parent.
  • Explore the availability of services such as in-home care, adult day services, meal delivery, a friendly visitor program,
  • Investigate long-term arrangements and options if living with your parent will not work or is not your choice.
  • Determine the type of medical care that will be needed by your parent, and whether appropriate physicians and services—including transportation services—are available in your community.
  • As time goes by, expect changes in your parent’s medical or cognitive condition.

Family Dynamics

Families are rich in historical experiences, and many of your positive and negative feelings about your parents and other family members will play a role in your decision to relocate or live with a parent. Be honest with yourself and do not allow unresolved conflicts or feelings of guilt or obligation pressure you into taking on more than you can manage.

  • Be realistic about the significant life changes that relocating your parent will mean for you, your parent, your siblings, your spouse and children.
  • Try to come to terms with past disagreements between you and your parent.
  • When deciding whether to relocate or move your parent into your home, consider the opinions of your spouse, children, siblings and other family members.
  • Come to an agreement with your siblings regarding how much and what kind of help you can expect to receive from them.
  • Recognize that, despite possible cognitive or physical limitations, that your parent is an adult, is entitled to maintain as much autonomy and dignity as possible, and should be at the center of any decision-making.

Family Caregiver Alliance offers helpful Fact Sheets, Holding a Family Meeting and Caregiving with Your Siblings, providing more in-depth information (see the Resources section at the end of this Fact Sheet).

Living Arrangements and Housing Options

Moving your parent into your home is certainly one option, but you and your family should take some time to consider other living arrangements as well. The type of housing you choose will largely depend on three important factors: your parent’s care needs, finances, and the service and supportive options available in your parent’s or your community.

When deciding where a parent should live, family members need to discuss, understand and accept the benefits and drawbacks of living close to one relative versus another. Often, the choice of location can cause conflict between family members because those living near the parent often bear most of the responsibility for the parent’s care, and may feel that those living further away do not help enough. On the other hand, family members who live far away can feel frustrated that they do not have the opportunity to participate more in providing care. An open dialogue and an agreement on how to share local and long-distance caregiving are essential.

Many residential communities for seniors are owned and operated by faith-based or other organizations with which your parent may feel an affiliation or interest. Ask your parent if they know of any friends who have moved to these new communities, and find out if your parent would be interested in being in the same community. Before any decision is made, visit more than one community with your parent, ask to join the community for lunch and get a facility tour, view the activities schedule and menu, and take particular note of how the staff interacts with the residents. Ask the community employees how they might accommodate your parent’s interests, hobbies and transportation needs. If the community under consideration is a category of licensed facility, ask to view the facility’s compliance history with minimum standards, and the number and types of complaints that may have been filed against the facility.

The following list outlines different types of living arrangements that may be appropriate for your parent. Each community offers different choices. Remember, Medicare does not usually cover these expenses.

Other options . . .

  • Living Independently: Most people prefer to remain in their own homes if possible. Sometimes resources in the community such as meal delivery service, “friendly visitors,” housekeeping, transportation or other in-home assistance provide enough support so your parent can remain at home, in familiar surroundings. Keep in mind, though, that it can be a hard sell for your parent to accept this kind of help if he or she feels you are meddling and the assistance is unneeded. These issues must be addressed in a family meeting. A small apartment, condominium or one-story house in their community or close to you might also be feasible, with help and check-ins from family. Sharing an apartment or house with a friend or relative could be another possibility. There are agencies in some cities that help arrange shared living situations. A newer option, called Naturally Occurring Retirement Communities (NORCs) or Villages, offers members—generally a group of older people whose homes are in close proximity—vetted services such as home repair, transportation and social/educational activities. There is a fee to join and the organization is directed by volunteers and/or paid staff. This is a growing movement across the country, and for some people, this is enough support to allow them to remain in their homes.
  • Retirement Community: Independent retirement communities usually offer individual apartments in a multi-unit setting, with group meals, transportation, housekeeping services and numerous organized social and enrichment activities. Residents are free to come and go as they please and still retain their privacy, yet have the benefits of a larger group setting. Amenities and prices vary from place to place. Some offer access to a nurse or nurse practitioner. As care needs increase, additional services (e.g., help with dressing) often can be added for a fee. Some communities require that new residents be ambulatory (not in a wheelchair) at admission. Some places offer subsidized housing for low-income individuals, with stringent limitations.
  • Residential Care Facility (RCF): These facilities are small group homes (sometimes called board and care homes or adult foster home) that provide supervision, meals and care for people who cannot be left alone but do not require skilled nursing care. Residential care facilities provide assistance with bathing, grooming, eating, using the toilet, and walking, and they also provide socialization and recreational activities. Rooms may be private or shared.
  • Assisted Living Facility (ALF): Individuals who are somewhat independent but require daily oversight and assistance with housekeeping, medication management and personal care will want to consider an assisted living facility. Assisted living facilities offer rooms or apartment-style accommodations and, often, social activities. Meals are provided in a shared dining room. Staff is available to assist with care needs such as bathing, grooming, eating or using the toilet, and care is arranged as needed by the individual. Medical staff may be on-site or on call. The monthly charge for assisted living is determined by how much care a person requires and varies widely throughout the US. Some assisted living facilities are dedicated to—or include a separate wing for—those with Alzheimer’s disease or other memory impairments. These “dementia care” or “memory care” units offer a special security-protected environment, and social and other activities designed for the abilities of the residents.
  • Intermediate Care Facility (ICF): This type of facility provides ’round-the-clock care for those who require help with bathing, grooming, going to the toilet and walking. Individuals in these facilities cannot live independently and require nursing care, although the nursing care is not offered 24 hours a day. Residents generally require a lower level of care than is offered in skilled nursing facilities.
  • Skilled Nursing Facility (SNF): Commonly called nursing homes, these facilities provide nursing services 24 hours a day and are designed to provide high levels of personal and medical care, such as administration of injections, monitoring of blood pressure, managing ventilators and intravenous feedings to individuals who cannot function independently. People living in skilled nursing facilities usually require help with the majority of their self-care needs; it would be very difficult to provide this level of care in a home environment. Medicaid (Medi-Cal in California) may help cover the costs if residents meet specific financial and medical requirements. Medicare may pay for a time-limited stay after hospital discharge, on a doctor’s orders.
  • The Eden (or Greenhouse) Alternative is a program in certain nursing facilities around the country to make the environment more elder-centered and less institutional. These are set up to encourage as much independence and interaction as possible for the residents, and to be more home-like. Contact with plants, animals and children is encouraged.
  • The Program for All Inclusive Care (PACE) is designed for people 55 years or older certified by the state where they reside to be nursing-home-eligible, but who can remain at home with a complement of health and supportive services. Sometimes referred to as a “nursing home without walls” this growing care option is available in many, but not all, parts of the country. Most participants are Medicaid-eligible.
  • Continuing Care Retirement Communities (CCRCs) (sometimes called “Life Care”) offer independent, assisted and skilled nursing facilities all in one location. If a person’s health deteriorates, a disruptive move to a new community is not necessary. These communities often can be quite large and generally require a substantial entrance fee.
  • Veteran’s Communities may be available in your state, and offer multiple levels of care. From independent living with supportive health and social services, to skilled nursing facilities, these communities permit a veteran (or their spouse) to live in the same community.

Regardless of the type of facility you choose, be sure to visit each one. Don’t be shy about asking a lot of questions. A preliminary visit should reveal a facility that is clean, smells pleasant, has staff actively but gently interacting with residents, and in which the residents are satisfied with their “home.”

When Your Parent Moves in with You

Change of Family Roles. If you and your parent decide the best place for your parent is in your home, understand that living with a parent most likely will lead to a shift in family roles. A once-authoritative parent may become more dependent—you may become the guardian who gives direction and controls many aspects of your parent’s life, while trying to preserve as much autonomy as possible for your parent. You may have less time for your spouse and for yourself. You may need your children to help with more household responsibilities including care of their grandparent. These role changes can be hard adjustments for everyone.

  • Determine your ease with becoming the decision-maker and the person with authority.
  • Be prepared for resistance from your parent if they feel that they can no longer set the rules, control their situation or fear losing independence, but make sure your parent is involved in the decision-making process and that their perspectives and preferences are heard.
  • When possible, allow for negotiation in decision-making activities offering a greater chance for a win-win situation.
  • Consider how your parent can contribute to the household, such as babysitting, doing light chores or making financial contributions.
  • Think about your spouse’s and children’s readiness to help with caregiving, and their comfort level with having a grandparent in the home—particularly if he or she suffers from dementia.
  • Think about ways in which your parent’s traditional interests, routines and food preferences can be accommodated, without unnecessarily disrupting your own lives.
  • Agree upon financial arrangements up front. Given available resources, will your parent be able to contribute towards food and utilities?
  • If you have siblings or other family members with whom your parent is comfortable, can you agree in advance that they can stay with your parent, or accommodate your parent temporarily in their home so you are able to get a break from caregiving or take a vacation?

Lifestyle Changes. You and your parent probably have very different lifestyles. Sleeping cycles, eating patterns and preferences, social calendars, interests, and daily activities may need adjustments in order to guarantee a smooth transition.

  • Talk about and plan how to accommodate bedtimes, nap schedules and sleeping habits of all family members in the house.
  • Discuss what types of food you eat, when meals are prepared, and if special diets are required and how they will be accommodated.
  • Assess whether smoking/nonsmoking or drinking/nondrinking practices are compatible.
  • Consider how you can support your parent’s continued participation in social networks such as visiting friends and attending a place of worship and how transportation to these and other activities will be managed.
  • Encourage your parent to keep enjoyable and safe hobbies.
  • Consider whether your parent will be fully integrated into your family’s activities or whether he/she will maintain an independent social life.
  • Consider how the household noise level and general activity pattern will affect your parent.

The Loss of Your Time. Caregiving requires a significant amount of time and is very likely to impact your work, family time, personal time and sleep.

  • Determine the amount of time you can devote to your parent’s care needs. When will you make phone calls for appointments or to set up needed services? When will you be able to take your parent to medical appointments?
  • Evaluate whether you will need to make adjustments to your current work schedule and if your employer is willing to accommodate those adjustments.
  • If you will reduce your work hours, determine the implications for your financial picture, career advancement, health insurance and Social Security and retirement benefits.
  • Consider whether you will have time for your spouse, children and friends.
  • If your parent requires full-time supervision, who will provide it while you are at work or attending your children’s activities?
  • Consider the reduced private time you will have to pursue your own friendships, hobbies or exercise, and your need for some time alone on a daily basis.
  • Expect that you will, at times, feel your energy is spent and will need to find a way to rest.
  • Investigate how to arrange for some time off from caregiving duties (“respite”) and enlist the help of your family members, friends, a paid aide or a home care agency.

Your Home. Physical living arrangements must be adequate if your parent is to move in. There must be enough room and a layout that is adaptable to an older adult who may have mobility or vision problems. A home may require special adaptations to make it safe. Many of these changes are inexpensive but need time and planning to implement. Some families consider an addition to their home or the use of an “accessory apartment” (or “accessory dwelling unit”)—a fully equipped modular unit that may be temporarily or permanently set up in the yard or elsewhere on a lot. Home health agencies and/or area agencies on aging may have the resources to do a home assessment in terms of home modifications, and safe lift/transfer techniques that are recommended to better assist your parent.

  • Evaluate the amount of available space and whether there is enough privacy.
  • Think about where your parent will sleep. How will a child feel if he or she has to give up a room for a grandparent?
  • If possible, locate your parent on the first floor in order to avoid stairs.
  • Consider major changes that may be needed in order to accommodate any disabilities or mobility problems, for example wheelchair-accessible bathroom and shower, different door handles, lower light switches.
  • Determine what assistive devices may be needed such as grab bars in the bathroom, raised toilet seats, handrails and a ramp.
  • If your parent wanders and is at risk for becoming lost, consider special locks, door chimes and other devices that will help keep doors and windows safely secured.
  • Look through your home for hazards such as dangling cords, toxins, slippery surfaces, unsteady chairs, throw rugs. Consider installing a stove-top shut-off device.
  • Install bright non-glare lights above all walkways, and low-cost adhesive strips on steps and other potentially slippery areas such as bathrooms and showers.
  • Adjust temperature controls so that the house is not too hot or too cold. Be aware that older people often like their environment warmer and this may affect both your comfort and your utility bills.
  • Discuss how you might incorporate your parent’s furniture into your home.
  • Review how existing or new pets will be integrated into the new home situation.
  • Think about having a system or alarm set up so you can be alerted when your parent needs help.

Financial Arrangements

Individual financial information may not typically be shared among your family members. However, if you are caring for a parent it may become necessary for you to become more involved in his/her personal finances, including paying bills, monitoring accounts and managing retirement accounts or investments. This can create problems with your parent or siblings who may question your access to and how you are handling your parent’s money.

  • Agree upon how much, if any, financial payment your parent will provide towards their living expenses. Will they pay for rent, food and other costs?
  • Your siblings may be resentful of any money you might receive. Openly discuss financial arrangements with siblings to keep them updated on new expenditures and apprised of accounts.
  • Come to an agreement between your parent and siblings regarding out-of-pocket expenses.
  • Consider a preparing a formal legal document called a Personal Care Agreement describing any payment to you from your parent for accommodations or your caregiving services.
  • To save time, investigate the option of automatic payment of recurring bills.
  • Look into free or low-cost services that assist with Medicare paperwork for older adults.
  • Be sure such legal documents are in place such as Durable Power of Attorney, Representative Payee, Advanced Directives, (See Resources section for the Fact Sheet Legal Planning for Incapacity.

Managing the Move

It is likely that your parent has lived in his or her current home for many years and has developed strong ties to community, family, friends, healthcare providers, social life and daily routine. Packing and moving out of a house is a significant chore for anybody, but for the older adult who has decades’ worth of memories and possessions, moving can represent a tremendous emotional challenge. Moving away from this familiar and comfortable setting is difficult and can cause great sadness. Furthermore, leaving one’s own house represents a decrease in independence and signals a new life stage. Often the thought of packing and sorting decades of history, memories and possessions is daunting enough to delay even considering the difficult decision to relocate. But there are some resources to help.

In some communities, there are specialized companies that will, for a fee, help organize a senior’s move to a new location and arrange to sell or give away unneeded furniture and possessions. They will also help pack and unpack. Regardless of services used, in most families the adult children still play key roles in this task. Open communication will help ease the way through these challenges.

While you help your parent pack, talk through the difficult feelings, acknowledge the loss that your parent is experiencing and reassure him/her that you are all making the best decision possible. Allow time and opportunity to reminisce. Reassure your parent that you will still be involved in their life regardless of their living arrangements—even in a new community you will want to ensure that the quality of care are services meet your parent’s needs.

If your parent owns the home, consider renting it to tenants. The rental income can help defray extra costs that the family may incur, or help pay for the care provided in other community settings, and offer certain tax benefits. In addition, renting the home, rather than selling, can also give your parent a longer transitional period to adjust to new living arrangements. Selling a long-time residence can seem very final, and can add an extra dimension of anxiety to the transition.

Your parent will need time to adjust to his/her new living environment and role with your family. Your patience and support will help make this transition smoother. An outside counselor may also be helpful. For additional advice on moving your parent to a new living situation, see the FCA Fact Sheet Downsizing Your Home: A Checklist for Caregivers.


Despite the challenges, many adult children find that providing support and care for their parents is one of the most rewarding experiences they have ever had. Parents can contribute to the family through sharing their past and become an integral part of your household. Grandchildren have the unique opportunity to learn and absorb family history. Caregiving carries with it the extraordinary opportunity to give back what your parent once provided to you.

Recommended Reading

Elder Care Made Easier. Somers, M., 2006, Addicus Books.

How to Care for Aging Parents: A Complete Guide, Morris, V., 2004, Workman Publishing.

Moving for Seniors: A Step-by-Step Workbook, Morris, B., 2001, Smooth Transitions.

The Essential Guide to Caring for Aging Parents, Rhodes, L., 2012. Alpha Books (Penguin Group).


Family Caregiver Alliance
National Center on Caregiving

785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
E-mail: (link sends e-mail)
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 Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s, and other debilitating health conditions that strike adults.


All FCA Fact Sheets are available online at Print versions are available to purchase online by visiting

Caregiving With Your Siblings
Community Care Options
Downsizing a Home: A Checklist for Caregivers
Hiring In-Home Help
Holding a Family Meeting
Legal Planning for Incapacity
Personal Care Agreements


601 E St., NW
Washington DC 20049
(888) 687-2277

Administration for Community Living
U.S. Department of Health & Human Services
330 C St., SW
Washington, DC 20201
(202) 401-4634

Aging Life Care Association (formerly the National Association of Professional Geriatric
Care Managers)

Alzheimer’s Association
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
(800) 272-3900

Eden Alternative
P.O. Box 18369
Rochester, NY 14618
(585) 461-3951

Eldercare Locator
Locate Area Agencies on Aging and other resources
(800) 677-1116
Online tool to help you “Find your path forward.”

Medicare and Medicaid

National Center for Assisted Living
Offers Choosing an Assisted Living Residence: A Consumer’s Guide

U.S. Department of Housing and Urban Development
Housing Counseling Agency
451 7th St., SW
Washington, DC 20410
(202) 708-1112

Village to Village Network


Prepared by Family Caregiver Alliance. Reviewed by Brenda Klutz,B & R Klutz Consulting, LLC, formerly Deputy Director, Licensing and Certification, California Department of Health Care Services. Funding for this fact sheet update provided by Genentech. Last updated in 2012. © 2003, 2012 Family Caregiver Alliance. All rights reserved.

Copyright © 1996–2017 Family Caregiver Alliance. All rights reserved.