Family Caregiver Guide  

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We are pleased to offer the final of four installments of the Family Caregiver Guide (FCG), which is made possible by a generous grant from Forest Laboratories, Inc. with additional support from the Rowland & Sylvia Schaefer Family Foundation, Inc. The goals of the FCG are to provide caregivers unable to attend training sessions in our office with an improved understanding of the disease; effective communication strategies that improve interactions between the caregiver and the person with dementia; a deeper awareness of and ability to cope with challenging behaviors demonstrated by persons with dementia; and knowledge about safety measures and engaging activities.
Caring for the Caregiver

A family member attending the Family Caregiver Workshop at the Chapter recently remarked, “There is no roadmap for this disease, I wish there was a how-to guide.” Another agonized over every decision she had to make regarding her husband’s care, fearing she would make the wrong choices. She eventually became mired in research, unable to accomplish any task or place a plan of action in gear. A third caregiver reluctantly confided, “I wish my husband had any other disease, even cancer. At least there might be some chance he would go into remission and I could gauge how he was doing day-to-day. A diagnosis of dementia does not afford me that possibility.”

Caregivers of persons with dementia (PWD) often feel their lives are spinning out of control. It is no wonder. According to the National Institutes of Health, caregivers, especially those caring for a PWD, are significantly more likely to experience depression than noncaregivers. What factors contribute to the emotional roller coaster ride so many caregivers experience? Could it be…
  • The innate unpredictability of the disease? Never knowing what symptom or new and unusual behavior will surface from one day to the next.
  • Fear? Wondering whether you will have the energy or strength to face the increasing decline of the PWD.
  • The constant shifting? Of your relationship with the PWD, of daily responsibilities and roles (i.e., paying bills, food shopping, scheduling doctor’s appointments, taking care of legal matters, arranging for repairs around the home), or of your own emotions.
  • Complicated feelings? The future is not what you anticipated, family members you thought would help shoulder some responsibilities are not as helpful or not helpful at all. Perhaps you miss the relationship you used to have with the PWD, the intellectual stimulation, the companionship, the security.
  • Loneliness/Depression? As the PWD’s condition deteriorates, friends and family often withdraw. People are sometimes scared to see the PWD, unsure of how to communicate, and often retreat, leaving the caregivers to fend for themselves.
Given the enormity of the task of caring for a PWD and the emotional toll exacted, is it possible to reduce the caregiver’s burden? No simple answer exists for this question, but a good place to start is with yourself.

Know yourself. Step back for a moment and think about your personality. What kind of caregiver are you and what impact might this have on the way you provide care?
  • The Caregiver in Denial — Do you adopt the attitude everything is fine until a crisis forces you to confront the reality of the situation?
  • The Expert Researcher — Always needing to master each new issue you face. Gathering tons of information about dementia, medications, home health care vs. nursing home placement, etc., constantly weighing pros and cons.
  • The “It is all about me” Caregiver — Unable to make decisions because you are so focused on how the disease is impacting you and not the PWD.
  • The “I am in Charge” Caregiver— All family members need to follow your lead, including the PWD. You must always be “in control.”
  • The Self Sacrificing Caregiver— The caregiver who is unable to hold a job or maintain friendships or relationships because your entire life (24/7) is devoted to caregiving. Unable to set boundaries.
  • The Paralyzed Caregiver — Unable to reach decisions in a timely fashion.
  • The Reluctant Caregiver — Trying to reconcile long-standing feelings of guilt or anger.
  • The Hero/Heroine — You can handle all of this by yourself and refuse to get any help.
  • The Mother — Perpetual caregiver.
  • The “I am in the here and now” Caregiver — Able to accept the situation as it is.
Most caregivers can identify with at least one of these types, if not more than one. It is important to step back and examine who you are: how your personality impacts your caregiving, your sense of burden, your ability to solve problems, and your own health. Knowing yourself — your unique caregiver perspective — will enable you to get in your own way less often.

Know your boundaries. It is not only okay to draw lines—what you will and will not do, can and cannot do—but having appropriate boundaries is essential to ensuring your own well being throughout your caregiving journey.

Know your hot buttons. Understand what sets you off. Caring for someone with dementia can be very frustrating. Being able to catch yourself before you reach the end of your rope should help in reducing your burden and improve both your quality of life and that of the PWD for whom you care.

Joan Griffiths Vega, a local instructor in Mindfulness Based Stress Reduction (MBSR), a program developed by Dr. Jon Kabat-Zinn and faculty at the Center for Mindfulness at the University of Massachusetts Medical School, suggests caregivers use the following MBSR acronym to ease stress and improve mood:

    S (Stop)
    T (Take a breath)
    O (Observe)
    P (Proceed
In other words, try not to immediately react to a situation. Hold your breath or curb your tongue and observe what is going on before proceeding. If you can just slow your words and actions down a bit, anger will likely diminish. This can be very difficult, and as with any new skill it will require time and practice, but if you are capable of making some progress, even a little bit, you should feel your sense of burden begin to ease.

Give yourself permission to care for yourself. You may experience grief, anger, sadness, frustration, and many other feelings. These are all normal. You are not alone. Keep reading to learn about additional ways to support yourself.

1.Educate yourself and others. Learn new techniques and strategies to help improve your quality of life and help sustain your relationship with the PWD throughout the course of the disease. Learn about the education programs offered by the Alzheimer’s Association, NYC Chapter, enroll in the Family Caregiver Workshop, attend our education meetings.

Visit the Chapter’s website for information about the latest research studies, advocacy efforts, support groups, arts and cultural programs, MedicAlert® + Alzheimer’s Association Safe Return® program, Care Consultation, Early Stage Services, medication trials, residential care options, pharmacy discount programs, the NYC Chapter’s quarterly newsletter, special events, community resources, and volumes of information about Alzheimer’s disease and related dementias.

For more information, call our 24-hour Helpline at 800-272-3900. These and all of our programs and services are available free of charge.

Subscribe to the Alzheimer’s Daily News online, a publication of the Ageless Design Research Foundation, by visiting

2. Develop creative problem solving skills to address challenging behaviors demonstrated by the PWD. When caring for a PWD it is important to consider what is truly important and let the other things go. Avoid arguing with the PWD — you probably will not win. Develop the art of being wrong — saying you are sorry often ends any argument. Begin trying to accept the situation, diminish negative self-talk, and release any anger you may be feeling. Step into the PWD’s reality, understand their underlying emotional needs (inclusion, a sense of identity, attachment, love, comfort, and occupation [Kitwood]), and provide validation. Think outside the box and avoid reverting to reality and facts.

Consider joining a support group to explore your feelings and form connections with others caring for a PWD. The NYC Chapter has more than 140 groups (with trained group leaders), which meet during the day as well as in the evening. Held throughout the NYC metropolitan area, we offer groups for many different types of situations including groups for spouses, adult children, daughters, caregivers of a PWD in the late stage, caregivers of PWD with Frontotemporal dementia (FTD), LGBT caregivers, etc.

You might also consider meeting individually with Chapter staff for Care Consultation services, or seeking individual counseling. For more information about these options and more, visit the Chapter’s website or contact our 24- hour Helpline at 800-272-3900.

3. Consider your relationship with the PWD. Has it historically been loving or contentious? Do they push your buttons? Do you have a strong attachment to your partner, parent, or other relative? All relationships are complicated and dementia further complicates things in the way it impacts not only the person with the disease but everyone involved.

Dr. Roberta Satow, in her book Doing the Right Thing (2005), writes: “There is no one day after which we no longer have to contend with the compulsion to repeat old patterns that keep us stuck and unhappy. . . old patterns and conflicts that remain either unresolved or incompletely resolved reemerge throughout our lives — especially during stressful times such as caregiving. If we do not resolve them, the best we can do is reach a point where we are more conscious of the telltale signs that presage their reemergence. We can get to a point at which we can realize the meaning of what we just said or did and not let our lives or our selves get out of control. Or we can do even better than that. We can resolve the underlying conflicts that cause us to repeat painful experiences.”

4. Understand there are no perfect solutions. The following passage from Pauline Boss’s book, Ambiguous Loss — Learning to Live with Unresolved Grief (1999), is especially poignant for caregivers of people with dementia. It perfectly describes the universal dilemma faced by many caregivers of a PWD— the desire to master a situation, where mastery is impossible:
“If we are to turn the corner and cope with uncertain losses, we must first temper our hunger for mastery. This is the paradox. To regain a sense of mastery when there is ambiguity about a loved one’s absence or presence, we must give up trying to find the perfect solution. We must redefine our relationship to the missing person. Most important, we must realize that the confusion we are experiencing is attributable to the ambiguity rather than to something we did — or neglected to do. Once we know the source of our helplessness, we are free to begin the coping process. We assess the situation, begin revising our perceptions of who is in the family and on what basis, and gradually reconstruct family roles, rules, and rituals. We feel even more in charge even though the ambiguity persists.”

5. Be three steps ahead of a crisis instead of responding to one. While it is not always possible to avoid crises, taking certain steps can help keep them at bay.
  • Take care of legal and financial matters. Complete a living will, Health Care Proxy and Durable Power of Attorney. Attend one of our Legal and Financial Seminars to learn more about transferring assets, supplemental needs trusts, Medicaid, and Medicare.
  • Remove environmental hazards from the home that could result in harm to the PWD (falls, burns, etc.). Visit for a list of tools and tips for safety, or contact our 24-hour Helpline for guidance.
  • Remove anything that could be used as a weapon.
  • Remove valuables from the home. If you do not want jewelry, important papers such as birth certificates, or family heirlooms to disappear, place them somewhere safe. Give the PWD a laminated copy of a birth certificate, social security card, insurance card, etc. or a less expensive, less sentimental piece of jewelry to wear.
  • If your family member is responding to telephone calls requesting money or donating money to charities, remove the credit card and checkbooks from the home, place a block on the phone or stop telemarketers from calling by registering with the National Do Not Call Registry. Consider having mail sent to a forwarding address or P.O. Box. Call our 24-hour Helpline for specific strategies which can reduce the PWD’s anger (i.e., giving them something else to do to refocus their attention and keep them busy).
6. Get help in the home or consider nursing home placement. If the PWD refuses help but needs it, get it anyway. Our 24-hour Helpline can provide you with information about agencies and how to successfully introduce help in the home. It is a transition for both the caregiver and the PWD, but it is worth it. Ask Helpline staff for a copy of “Making Home Care Work For You,” a valuable guide which addresses a wide array of relevant topics.

Realize sometimes nursing home placement is the best option for the PWD and also for the caregiver. Get past the negative connotation and at least obtain good information about all options, even if you are not actively considering them or are ambivalent. The Chapter’s Residential Care Specialist can be reached through our 24-hour Helpline. e

7. Connect to your community and its resources. Find out about programs in your area including overnight respite programs, day programs, programs at local museums to explore art and art making with the PWD, ballroom dancing for caregivers and the PWD, music and singing events for caregivers and people with dementia, meal delivery programs, bill payer programs, visiting nurse services, and visiting doctors of a variety of disciplines.

8. Give yourself permission to take time off and enjoy life. You deserve it! You need to take care of yourself first and then you will be able to better care for the PWD. If you are happier, the PWD will also surely benefit. What makes you feel good? When was the last time you had a good hearty laugh? Take time to:
  • Take your dog for a walk
  • Meet a friend for lunch
  • Sing songs (at the top of your lungs!)
  • Go to a movie
  • Take a class
  • Visit a museum
  • Go on a vacation
  • Garden
  • Cook
  • Read a book
  • Sit quietly by yourself
  • Meditate
  • Exercis
  • Attend a support group
Don’t let guilt stop you. Guilt is an emotion that is real but can have severe negative consequences. Talk with someone to help you reconcile your feelings. Schedule time each day or each week to enjoy yourself. Allow yourself to feel guilty but don’t let it interfere with your taking time for yourself. If you feel this is impossible, have the PWD join you in an activity so you can do it together. Even if the PWD is confined to a wheelchair or is nonverbal, they will appreciate being out and about and in the presence of others.

9. Strike a healthy balance. While you may have been thrust into the role of caregiver, not everyone has the ability or desire to be a caregiver. Olivia Ames Hoblitzelle, author of Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s (2010), quotes a Tibetan Nun who is discussing balance:

“Maybe you’re already aware of this,” she replied, “but in Buddhism we talk about the principle of the two benefits. The idea is very simple. For anything to be of benefit to another person, it must also be balanced with benefit to oneself. We can get all trapped into giving too much of ourselves and lose the balance in relationships. That’s where this idea of two benefits can be a helpful reminder.”

10. Take advantage of the New York City Chapter’s programs and services, all of which are offered free of charge. Our 24-hour Helpline is available around the clock, 365 days a year, and is the best place to start. Call us anytime at 800-272-3900.

— Amy Trommer
Dementia Care Trainer

All four segments of the Family Caregiver Guide were written by
Amy Trommer, MSW, Dementia Care Trainer.