Caregiving

On this page, you will find information on:

• Caregiver Support
• Your Rights as a Caregiver
• Managing Caregiver Stress
• Further Information

Caregiver Support

In most cases, the primary caregiver of a person with Alzheimer’s disease will be a loved one, a spouse, adult child or close companion. Even in the early stages of the disease, caregiving is an extremely demanding, 24-hour-a-day task. Caregivers need to be flexible and understanding in dealing with changes in their loved one’s behavior and personality. They must also be able to communicate with family, friends and professionals about his or her condition. 

Spouses who are caregivers are likely to be strongly affected by a diagnosis of Alzheimer’s, as they process the profound changes their future holds. Many times spouses have their own health problems. Further, husbands and wives often are required to reverse roles and take on unfamiliar tasks. Depending on their relationship, Alzheimer's can bring couples closer together or it can alienate them. Finally, spouses need to accept that the person they have known and loved may change dramatically in personality and behavior, and there will almost without a doubt come a time when their loved one does not recognize them.

Adult children who are caregivers also need to adjust to the role reversal in caring for their parent. They may feel overwhelmed by the other responsibilities in their lives such as working within or outside the home and caring for their own children.

As distressing as an Alzheimer’s diagnosis can be, this is the time to begin to accept the future, build a support network, gather information to help alleviate fears and plan for the road ahead. Family members who do not live nearby should support the main caregiver and try to help with tasks that do not require them to be nearby.

Caregivers can greatly benefit from participation in support groups, some of which meet physically on a regular basis and others that interact virtually on the internet. Both offer advice, information, resources and comfort. Those in support groups have a common understanding of issues facing caregivers in similar situations. Many members become like family or close friends as they discuss common problems, coping strategies, and caring for oneself as well as the Alzheimer’s patient.

Or find a caregiver’s support group in your local area

The encouragement and assistance of family and friends is especially important. Caregivers may appreciate getting together to discuss their feelings and may seek offers to help with various tasks. As much as possible, family members should be supportive of one another, offer assistance and respite to the primary caregiver, and stay up to date on the physical and emotional condition of the person with Alzheimer’s. Caregiver training and support groups can also be very helpful and are recommended. In some cases, professional counseling may be needed. 

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Your Rights as a Caregiver

Caring for a person with Alzheimer's disease is often a stressful and demanding ordeal. We need to remember that caregivers have human needs and emotions, and that they must care for themselves as well as their loved one. To help cope with the strain of caregiving, it is important to allow oneself to feel varying emotions, including negative ones, express them and deal with them. 

IT IS ALL RIGHT TO:

• BE ANGRY. Turn this energy into positive action. Clean closets, take a walk or talk with someone.
• BE FRUSTRATED. Stop the present activity, take a deep breath and begin a different activity.
• TAKE TIME ALONE. Relax quietly in a favorite chair, take a trip to the store or  spend a few hours out with friends.  Do something for yourself.
• ASK FOR HELP. Seek assistance from family, friends, volunteer groups and local agencies. Most doctors' offices and clergy can make referrals, and much information can be found online.
• TRUST YOUR JUDGEMENT. Relax -- you are doing the best you can.
• RECOGNIZE YOUR LIMITS. You are a valuable person. You will not be able to do everything. If you take care of yourself you will be able to take better care of your loved one.
• MAKE MISTAKES. No one is perfect. This is how we learn.
• GRIEVE. This is a normal response to a loss. You may be sad over the loss of the way things used to be.
• LAUGH AND LOVE. It may seem out of place, but your capacity to feel is not gone and can occur unexpectedly.
• HOPE. Tomorrow, the day may go smoother, a friend may call, a cure may be found.

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Managing Caregiver Stress

Fulfilling and adapting to the changing needs of the person with Alzheimer's, and dealing with unfamiliar behavior and practical matters takes a physical and emotional toll on caregivers. If these pressures are not periodically relieved, caregivers are susceptible to exhaustion, illness and depression. To avoid this, caregivers first need to recognize the signs of stress. Some warning signs include feelings of denial, depression, irritability, anger and anxiety, as well as physical signs such as trouble sleeping, exhaustion and health problems.

For many caregivers the more they learn about Alzheimer's disease, the better they can cope. They learn to recognize the things that can be changed and accept those that cannot. They identify sources of help, let go of unrealistic expectations, adapt to their loved one’s changing needs and understand that a positive attitude can change a bad day into a better one.

There are many ways to reduce stress, some of which include: take time out to relax, engage in an enjoyable pastime, do one thing at a time, keep a list of tasks, write in a journal, maintain a sense of humor, eat right, exercise and get proper rest. Caregivers deserve to give themselves credit for doing the best they can in very trying circumstances.

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Further Information

There are many resources available to those caring for loved ones with Alzheimer’s disease. These organizations and websites offer a wide variety of advice on: health, financial and legal matters; senior services and housing; caregiving strategies and tips; and support and assistance for the caregiver. Many websites have databases to help find local services.

A full list of resources for caregiving support can be found here.

The following AHAF publications can provide you with more information:

• Care for the Caregiver: Managing Stress
• Living with Alzheimer's Disease

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Last Reviewed On: 09/26/08