Alzheimer’s Caregivers Support

The difficulties and rewards of providing Alzheimer’s care

Providing this care for a person with Alzheimer’s disease or other dementia is sometimes described as the reverse of raising a child. In the movement from infancy toward adulthood, the child keeps getting more capable and independent, mentally and physically. Caregiving can become so demanding and all-consuming that it makes caregivers vulnerable to problems of their own. As you read about them, please keep in mind that the purpose of this article is to help you prevent or minimize the problems by arranging the support you need before you get to the point of burnout or illness. The ideal support system would include a network composed of family and friends, a doctor and care manager, a support group, phone support hotline and other community services.

The difficulties in providing care to an Alzheimer’s or dementia patient

Typical problems and issues for caregivers of dementia patients are as follows:

Depression and grief

Those who were close to the patient experience grief at the loss of the person they used to know, as they witness the slow decline of their loved one into a helpless, anonymous person. As the losses continue, caregivers can become depressed.

Frustration, irritability, and anger

Because they cannot change the progression of the illness, caregivers for Alzheimer’s patients typically feel frustrated. A build up of frustration can lead to feeling irritable, angry or more depressed. Caregivers suffer more from these feelings than patients, who often have little awareness of lost capacities.

Loss of identity

The caregiver is left with a person who doesn’t recognize them and can’t remember their history together. The caregiver may lose a sense of who they are, because their loved one is no longer able to validate their shared experiences.

Social isolation and loneliness

The increasing demands of care can drain the caregiver of energy for engaging in familiar activities and social contacts. At the same time, the caregiver’s life is more and more intertwined with that of the patient. The result can be more frustration, depression, and exhaustion. The caregiver may begin wishing that the elder would die, not only to end the patient’s miserable state of life, but also to end the caregiving.

Health problems

Stress, lack of rest, depression and grief all can take their toll on the caregiver’s body and mind. Besides, the demands of caregiving can make it hard to maintain good health habits. Many of us have a hard time maintaining regular exercise and nutritious diet under normal circumstances, and some find it even harder to maintain when they need it the most.

The positive aspects of caring for an Alzheimer’s patient

We tend to emphasize problems and difficulties because there are many of them, and it’s important to know what steps you can take to alleviate them. Still, there are many rewards associated with caregiving.

Deepening emotional bonds

In the early phase of the illness, facing the diagnosis and planning the care can bring you closer to the person and you may have more time than in the past to enjoy the companionship and love between you.

Building self-esteem

You could feel a boost of self-esteem, knowing that you are the one helping to create a sense of security and well being for someone who is feeling increasingly lost and helpless. Providing care to those in need is a time-honored tradition around the world. Taking on this responsibility is seen by many as an act of unselfishness that brings out the best in the caregiver.

Unexpected rewards

You may have a sense of well-being that comes from finding inner strengths you didn’t know you had. If you are a person who has not had this kind of experience, you may enjoy learning the new skills needed.  People with strong religious or spiritual beliefs may feel rewarded as they are implementing important values by giving of their time and energy to benefit another.

Finding new friends

By reaching out for support when you need it, you will be meeting new people and making new friends. Some of those will remain when the long, sometimes dark journey of caregiving is over, and they will help you to move forward with your life, supporting you in your grief and encouraging you to move on.

Planning ahead to minimize the problems of Alzheimer’s caregiving

Though most caregivers will experience some of the upsides in the course of caregiving, there’s no denying that it’s a time of major challenges, with potential risks to your health, your sense of self and your well-being. And there are those who must be the caregiver to someone who has not treated them well, or who they were never really close to. Finding the way through the many issues that will arise requires the wisdom to recognize when you need help and the willingness to seek out that help. As we continue, we’ll explore signs of trouble and how to go about finding resources you need.

Research shows that caregivers who seek out support and relief have less depression and physical illness. Taking good care of yourself while in the role of caregiver is the key to minimizing the problems that can develop. In addition, good planning is a key part of successful caregiving. Because so many professionals and lay people have provided Alzheimer’s care before you, a great deal is known about what you can anticipate. You and the patient will benefit if you’ve taken the time to make some decisions and plans regarding:

• Financial and legal issues
• Patient wishes for end of life care
• Home safety and socializing
• Symptom management by a doctor
• Tapping sources of support with help of a care manager
• Personal care needs and problem behaviors

As the patient’s condition changes and demands of caregiving increase, it will be important to adjust your plan of care accordingly. For example, if you started out doing all the care yourself, that might work fine initially, but eventually you’ll need to explore ways to get respite for yourself.

Help and support for caregivers of Alzheimer’s or dementia patients

You will probably have educated yourself about Alzheimer’s disease as you prepared for your caregiving role. When you see any major changes in the patient’s symptoms or behavior, you will know what to do, or you will know what expert to call. For some of us, it’s more difficult to recognize major changes in ourselves--signs that the stress of providing the care is getting too high and there is danger of burnout. Caregivers must be watchful for a range of emotional and physical problems that they may develop:

Ideally, a caregiver will have set up a good support system well in advance that prevents problems getting out of hand; but in reality, sometimes the demands of care get in the way of tapping sources of support when we most need them. Try to keep the danger signals in mind, and reach out for help as soon as you see signs of trouble.

Planning for support and relief

This can take many forms but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself. Learn about the various options and plan ahead as best you can.

Enlist family and friends

Have other family members or friends provide care while you take a break. Spend time with a supportive friend or family member who is a good listener and who cares about you and what you are going through.

Have a professional network accessible to you

Keep in touch with the doctor and know when to report problems. Get medical help for management of symptoms.

If you are working with a care manager, this person should be able to help you find an affordable hired caregiver for some hours each day or each week, or a senior day care program that is suitable for the patient’s needs. This can allow you a much-needed break. And, if home care becomes unmanageable, doctors and care managers can guide you towards an appropriate facility.

You may also want to get professional psychotherapy or counseling. This can greatly relieve the strain of caring for the Alzheimer’s patient and help you to cope on an everyday basis.

Find peer support

Look for a caregiver support group in your community. It’s important that the group members are people you are comfortable with and can relate to. If you are unable to find a local group, or you have difficulty leaving the house because of your continuous caregiving duties, join an online support network. Communicating with other caregivers online can reduce your stress.

Share caring for a couple of Alzheimer’s patients at a time, or trade other services. This coping idea works well in a rural community. One adult can handle two or three Alzheimer’s patients, giving other caregivers some respite.

Tips for maintaining the caregiver’s own mental and physical health

The following are suggestions for staying mentally and physically healthy:

Ways Caregivers Can Protect Their Own Health and Well-Being
Commit to a healthy lifestyle	Eat a balanced diet, get enough sleep, and exercise regularly - particularly to combat depression.
Maintain a positive attitude	Do whatever you need to do to maintain a positive attitude. Focus on any rewards of caring for the patient and on the remaining positive aspects of their personality.
Stay in contact with friends, relatives, and the outer world	You may be able to bring the Alzheimer’s patient to social gatherings with you and show your friends and family how to interact with your patient. The patient will enjoy the socializing, and you can spend time with other people besides the Alzheimer’s patient.
Keep your mind stimulated	Keep boredom at bay with activities you enjoy—anything from reading, watching a movie, or music listening to working crossword puzzles, jigsaw puzzles, playing online games, solitaire card games and more.
Maintain a life of your own	It’s possible to become almost obsessed with being the caregiver twenty-four hours a day, seven days a week. Acknowledge your co-existence with the Alzheimer’s patient, but break out of it every so often.

Dealing with the frustration, anger or resentment common in Alzheimer’s caregiving

Acknowledge any anger or resentment you feel about the caregiving. Not everyone is happy with the caregiving role. Perhaps your relationship with the person was unsatisfactory to begin with, and the new roles of patient and caregiver, could make it worse! Even if you basically enjoy being a caregiver, there will be times where it becomes frustrating and irritating. Most caregivers cannot help but express their frustration or anger toward the patient at times. Try to be easy on yourself, and give yourself adequate breaks from caregiving to prevent the build-up of resentment. If you find yourself getting angry frequently, vent your emotions with people you trust--a friend, a therapist, or support group. Talking about your negative feelings can be restorative, helping you remain positive when with the patient.

Caring for a loved one who can’t give feedback

A patient with Alzheimer’s or other dementia is usually unable to communicate with anyone at the end of their life, so their responses to care are unknown. The person will not respond to touch, heat, light, or sounds, and you will not know if something makes them feel uncomfortable or comfortable. Because you may have spent a lifetime pleasing the person you are now caring for, it will be particularly difficult now for you not to know how to keep them comfortable. Alzheimer’s hotlines and local support organizations can offer the support you need when you do not know if you are doing the right things for the patient. (See the References section below for locating this kind of help.) You will need to trust your own instincts and perceptions. Don’t blame yourself for what you cannot know about the patient’s feelings or for what you needed time to learn.

Related links for Alzheimer’s caregiver support

Hotlines

Make a phone call and receive advice, support, information, and referrals:

The Alzheimer's Foundation of America: 1-866-232-8484 (toll-free) Staffed Mon. – Fri. 9am to 5pm, EST. At other times, leave a voicemail for return call during business hours.

The Alzheimer's Association: 1-800-272-3900 (toll-free) Available at any time of the day or night, any day of the year.

Chat rooms

Empowering Caregivers – Provides an online chat room for caregivers, with specific hours for talking online together. (Care-Givers.com)

Elder Caregiving Chatroom – Provides a chat room for caregivers. (ElderCare Online)

The Gathering Place – Provides a chat room for caregivers of people who have Alzheimer’s or another dementia. (The Ribbon Online)

General self-care strategies for caregivers

Caregiving: Maintain Your Support Network – Suggestions on how to engage family and friends in helping out with patient care. (Mayo Clinic)

12 Ways to Boost Caregiver Success – Provides a list of tips for how caregivers can educate themselves about Alzheimer’s disease, seek support, and better manage the stresses of caregiving. (Alzheimer’s Foundation of America)

Caring for Someone with Alzheimer’s: Caregiver Support – Suggests that caregivers take care of two aspects of their own welfare: maintaining good health and getting outside relief. Several video clips explain the concepts. (The National Institutes of Health and the National Institute on Aging)

Caregivers and mental health

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

Caring for Someone With Alzheimer Disease? Take Care of Yourself Too! – 10 signs of caregiver stress and tips for stress reduction with links to resources. (Alzheimer Society of Canada)

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

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

Easing the Transition – Tips to help patients and caregivers manage the transition from home life to assisted living or another type of facility. (Alzheimer's Foundation of America)

Delving deeper into support for caregivers

The Ribbon Newsletter – A free newsletter for caregivers of people with Alzheimer’s Disease or another dementia. (The Ribbon Online)

The “A Little Help For The Caregiver” Index – Numerous articles detailing ways for the caregiver to take care of their own needs as they take care of someone with dementia. (Alzheimer’s Outreach)

The Forgetting: Coping – A site with many links and suggestions to help caregivers, often illustrated with brief stories of actual experiences of caregivers and patients. The PBS show on Alzheimer’s was based on the book The Forgetting: Alzheimer’s: Portrait of an Epidemic, by David Shenk. (PBS)

Sexuality and Dementia – Addresses a subject that is often overlooked: the changed nature of physical intimacy between dementia patients and their spouses or partners. (Caregiver.org)

Doug Russell, L.C.S.W., Tina de Benedictis, Ph.D., and Jeanne Segal, Ph.D., contributed to this article. Last modified on: 12/2o/07.