The Twelve Steps were originally developed as the heart of the Alcoholics Anonymous Program in order to provide persons with a unity of purpose and guidance for individual growth . . .

In our research with caregivers of persons with dementia, one caregiver wife reported that she was applying the Alcoholics Anonymous Twelve Steps in her caregiving experiences.

(The authors use the Twelve Steps for Caregivers in their eight week intervention program and have recorded caregiver responses to them. The following are the Twelve Steps as developed by Farran and Keane-Hagerty and their discussions of each step.)

Step 1: I can control how the disease affects me and my relative.

Once the diagnosis of an irreversible dementia has been made, caregivers soon learn that modern medicine knows very little about the cause, treatment and prevention of the disease. It is important that caregivers understand that Alzheimer's is a chronic and ultimately terminal disease. And while caregivers may learn about caring for persons with dementia from numerous books and articles, it is important that they realize which aspects of caregiving they can control and acknowledge aspects over which they have no control. Ultimately, no matter what the caregiver does, the disease process will not change. However, caregivers can learn to control such things as disruptive behaviors and their attitude toward these behaviors. Some caregivers have reported that the Alcoholics Anonymous' Serenity Prayer has been helpful to them. It is as follows: "God Grant me the serenity to accept the things I cannot change, courage to change things I can and wisdom to know the difference."

Step 2: I need to take care of myself.

For most caregivers, this is a difficult lesson to learn. Some caregivers feel that they must "always" put other persons first and that it is selfish to think of doing things for themselves. They must learn that in order to continue providing care for their family members, they must first take care of themselves. Therefore, caregivers need to give themselves permission to "indulge" in such things as obtaining relief by using sources of respite and by involvement in outside activities that they both need and enjoy. Oftentimes professionals or other persons play an important role by giving caregivers permission to take care of themselves.

For some caregivers, self-care becomes a real issue when they can no longer assume full-time care and need to consider in-home assistance or nursing home placement. These decisions may be very difficult as caregivers may feel that they are failures, are selfish, and are not keeping a promise made to the care-receiver. Some caregivers need assistance to realize that the demands of providing care for a person with dementia may exceed individual resources. They need to see themselves as important and to acknowledge their abilities and preferences when making caregiving decisions.

Step 3: I need to simplify my lifestyle.

It is essential that caregivers be able to identify what is most important, what should be taken care of immediately and what should receive most of the attention. As caregiving responsibilities take up more and more of their daily lives other activities need to be adapted or dropped. If caregivers wish to maintain outside activities and interests, they will need to lower unrealistic expectations they may have of themselves.

Step 4: I need to allow others to help me.

This step can also be very difficult for caregivers who have lived most of their lives thinking they "should" be independent, and for those who view asking for help as a sign of weakness. Along with cultivating the gift of allowing others to help, they need to learn how to actively ask others for help. Caregivers often report that friends say, "Call me if you need help." We encourage caregivers to keep a list of activities nearby, and when this type of offer is made, the caregiver can readily say, "I need help with such and such . . ." Presenting others with a variety of specific tasks allows others to volunteer assistance and accommodate their resources.

Step 5: I need to take one day at a time.

This slogan is borrowed directly from Alcoholics Anonymous and is commonly used by family caregivers. It reinforces the importance of thinking only about the day's challenges and helps caregivers to focus their energies on what is most important in the short-term. It also lessens feelings of being overwhelmed when looking ahead to concerns which may never develop. It has been suggested that having dementia is the ultimate existential experience. Persons with dementia have a patchy memory of yesterdays and a poorly anticipated future. For the person with dementia, it is essentially the "here and now" that is significant--a reality to which caregivers must adapt.

Step 6: I need to structure my day.

Because of the memory impairment brought about by the disease, it is important that the caregiver develop a sense of structure, routine and rituals for their family member. In so doing, the care-receiver feels more of a sense of safety and security and caregivers can use their time and energy more efficiently.

Step 7: I need to have a sense of humor.

Caregivers have often reported that a sense of humor helps them through a difficult situation. One caregiver reported, "I choose to make this a humorous heartache." Another caregiver said, "You have to laugh, you can't cry all the time." Maintaining a sense of humor means that caregivers have to be objective enough to see the irony in painful situations.

Step 8: I need to remember that my relative's behavior and emotions are distorted by his or her illness.

In our research we found that while caregivers generally understand dementia as a disease process, they are more likely to take it personally and feel that the person is being "difficult" or is "getting back" at them when disruptive behaviors occur. It is important to help caregivers keep an objective viewpoint about their experiences and to be able to attribute to the disease what rightfully belongs to the disease, and not simply to the relationship.

Step 9: I need to focus on and enjoy what my relative can still do.

In the professional literature, much emphasis has been placed upon helping caregivers deal with the impaired family members' "problem behaviors." Much less emphasis has been placed on understanding who the person was and still is. Caregivers have frequently reported that what helps them through the process of caregiving is to be able to see who their relative "is" in the present, as well as appreciate who this person "was" in the past. Enjoying the good moments for what they provide is commonly seen by caregivers as a way of helping themselves through their present difficulties. Focusing on what the person can still do also maintains care-receiver independence and prevents "excess disability."

Step 10: I need to depend on other relationships for love and support.

As the dementia progresses, the care-receiver is less and less available to the caregiver as he or she has been in the past. Caregivers often report that one of the most difficult aspects of caregiving is the loss of this person who once "was." A daughter remarked, "We are losing my mother piece by piece."

As this process evolves, caregivers must increasingly look to other family members and friends for the love and support that the impaired family member once provided. Caregivers need to understand that a desire to be cared about and supported by others is a normal human response, and that it is essential to have these needs met in some way.

Step 11: I need to remind myself that I am doing the best I can at this very moment.

Caregivers must realize that they will not handle every situation "perfectly," and that at times they will become impatient and angry with the care-receiver. They will always be able to see things they may have done differently or better. However, it is important for caregivers to acknowledge their human limitations, develop a sense of acceptance of themselves, and accept how they have managed a particular situation. While "second guessing" and feelings of guilt are common with caregivers, it is important for caregivers to immerse themselves in positive reinforcement so that their precious time and energy are not siphoned off into thoughts that are self defeating.

Step 12: A Higher Power is available to me.

Many caregivers report that their sense of a Higher Spiritual Power has assisted them through many difficult situations, and that this same power has been what has helped them to find meaning through their caregiving experiences. More recently, caregivers have reported that a book of prayers specifically related to Alzheimer's disease has been a useful resource.* However, other caregivers have strongly challenged the use of a Higher Power because of their own beliefs. We draw from Alcoholics Anonymous and other approaches that suggest we are not imposing a set of beliefs on other persons, but that we do encourage caregivers to develop their own conception of this Higher Power and how this power may work in their own lives through the caregiving situation.

In conclusion, the Twelve Steps For Caregivers incorporate the coping strategies of persons in our research project who seem to meet caregiving demands with greater confidence and less stress. We share these steps with other caregivers and encourage them to develop whatever personalized statements will help increase their understanding and acceptance of caregiving challenges.

*Murphey C., Day to Day: Spiritual Help When Someone You Love Has Alzheimer's, Westminster Press, Philadelphia, 1988--available to borrow at the Caregiver's Center.

Special thanks to "The American Journal of Alzheimer's Care and Related Disorders and Research" (Vol. IV, No. 6, p.38-42) for the article.
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