AD Caregiver Research Part 2 - Hope, Hopelessness and Coping
Caregiver coping is another area of Dr. Farran's research at the Rush ADC. In many ways, hope and finding meaning are closely intertwined. Included among her publications on this topic are her Twelve Steps for Caregivers. The orignial Twelve Steps, developed by Alcoholics Anonymous, provided people with a guided purpose and a direction for spiritual growth. Since then, addiction professionals and self-help groups have used or adapted the 12 steps for various purposes in three key areas. First, members acknowledge that human resources such as intelligence, knowledge, and strength are not enough to help people solve their life problems. Second, they focus on the need to accept the help of their Higher Power to guide them through each difficult situation and help them take action. Finally, they find ways to bring their Higher Power into the conduct of daily life, to ensure considered action.
Motivated by the comments of the wife of a man suffering with dementia, Dr. Farran and her colleagues incorporated ideas from the following Twelve Steps into an intervention program for caregivers.
The Twelve Steps for Caregivers:
> Step 1 : I can control how the disease affects me and my relative.
Once the diagnosis of AD is made, caregivers find that modern medicine will do little to treat or prevent progression of the disease. Caregivers soon realize which aspects of care they can control and where they have no control. While the disease process will not change, caregivers become skilled at reducing disruptive behavior and controlling their own attitude toward that behavior.
> Step 2 : I need to take care of myself.
A more difficult lesson to learn is that in order to continue effectively providing care for your loved one, you must take care of yourself. Often, health professionals or others play important roles, giving caregivers permission to take care of themselves first.
> Step 3 : I need to simplify my lifestyle
Caregivers learn to identify what is most important, what they should take care of immediately, and what must receive most of their attention. As the time needed for caregiving increases, other activities are adapted or dropped.
> Step 4 : I need to allow others to help me.
Caregivers who have lived most of their lives thinking they are, and should be, independent, may view asking for help as a sign of weakness. Along with allowing others to help, you need to learn to ask for help.
> Step 5 : I need to take one day at a time.
This step reinforces the importance of thinking only as far ahead as today'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 by events that may never happen.
> Step 6 : I need to structure my day.
The memory impairment brought on by AD requires structure, routine, and ritual for the affected family member. By providing these, the caregiver brings a sense of safety and security to their loved one's daily life. Then the caregiver can use limited time and energy more efficiently.
> Step 7 : I need to have a sense of humor.
A sense of humor helps caregivers through difficult situations. Maintaining a sense of humor means being objective enough to see comedy as well as irony in embarrassing or otherwise painful situations.
> Step 8 : I need to remember that my family member's behavior and emotions are distored by his/her illness.
Caregivers generally understand the disease process of dementia, but they may take disruptive behavior personally. If caregivers are able to keep an objective viewpoint about their experiences, they can better separate the disease from the person.
> Step 9 : I need to focus on and enjoy what my family member can still do.
Caregivers report that what helps them through the process of caregiving is to be able to see who their family member is in the present, as well as recall and appreciate who this person was in the past. Enjoying good moments is a way caregivers can help themselves through current difficulties.
> Step 10 : I need to depend on other relationships for love and support.
As AD progresses, the person with AD becomes less and less available to the caregiver. Caregivers increasingly must look to other family members and friends for the love and support that the impaired family member once provided.
> Step 11 : I need to remind myself that I am doing the best I can at this very moment.
Once caregivers realize that they will not handle every situation perfectly, they can acknowledge their human limitations, develop a sense of self-acceptance, and feel satisfied with how they managed a particular event or responded to a disruptive behavior.
> Step 12 : A Higher Power is available to me.
Many caregivers believe that their Higher Power has assisted them through difficult situations, and that this same power has helped them find meaning through their caregiving experiences. Some caregivers have found a book of prayers specifically related to AD to be a useful resource.
Coupling hope with coping may help caregivers adapt to their situations, find meaning in caretaking, and adapt mentally and physically to the very real stress of day-to-day life with and AD patient.
For more information on caregiver assistance and programs, please contact the Alzheimer's Association at (716) 626-0600.
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