How Can Caregivers Cope?
We received a question some time back that asked about caretaker coping mechanisms and resources. Some related questions were: "Are there any trends that seem to have more positive outcomes on the family?" "What support do families find helpful?" "Do men or women find it harder to deal with the problem if their spouse develops the disease?"
Good Caregiving for People with Alzheimer's Disease
I would like to address these questions by discussing caregiving in Alzheimer's disease, including the qualifications that help make a good caregiver, the potential options for whom might be a caregiver and a discussion of specific situations that may require specific caregiver approaches. Included in this we will also address the issue of what enables caregivers to maintain there own coping skills in the setting of the severe stress generated by having to care for someone.
It is important for this discussion for us to review and remember some of the important features of Alzheimer's disease. Alzheimer's disease is a progressive dementia that eventually strips a patient of all cognitive functioning. It is also progressive in that it is eventually fatal and death occurs at an average of 11 years after diagnosis. With the decline in cognition there is loss of memory and commonly presentations of disruptive behavior.
Characteristics of Good Caregivers
In approaching the task of caring for someone with this disease, there are some characteristics that have been identified as important for a caregiver to have. Given the tendency for Alzheimer's patients to have trouble understanding and to have a tendency to repeat themselves, probably the most important characteristic for a caregiver to have is patience. Without patience it is very hard for a caregiver to perform the duties necessary for helping the patient.
A second important characteristic is having an ability to communicate with the patient. Because people with Alzheimer's disease have trouble understanding, patient communication by the caregiver is absolutely necessary. Some knowledge of the disease is also important. Only with some knowledge of the disease is a caregiver able to understand the behaviors of the patient and able to anticipate potential behaviors. In this regard, realistic expectations of the patient's ability to do things are important.
Realistic expectations of what the caregiver can provide are also important. Many of these characteristics occur more often when the caregivers have positive views of the relationship between themselves and the patient. A very interesting research study showed that quality of marriage before the onset of the disease was very predictive of the quality of the caregiving by the spouse after the diagnosis. This was equally true for women and men.
The caregiver need not be a spouse. Other caregivers include other family members and non-family members, who may or may not be health care professionals. The qualifications described above would apply to any of these. The caregiving can occur at the patient's home or in a placement location, including a home of a caretaker or a location designed for caregiving, such as a nursing home. The location does not limit the type of caregiver (health care professionals can come to a private home and family can come to a designated caregiving location) nor does it change the characteristics necessary for good care giving.
As indicated above, part of being a good caregiver is knowledge. I would like to give a brief summary of some approaches that can be used in specific situations.
In my experience disruptive behaviors are the most troublesome issues. It is important to know that medications are not typically very helpful for these behaviors, and therefore behavioral approaches, especially by the caregiver are crucial.
Here is a brief summary of tips to lessen the stresses of these behaviors. It is a summary from the University of Pittburgh website upmc.com with a section titled "Health Management."
- Wandering: involve the patient in activities; limit the options for wandering (locked doors, etc); recognize that a patient may be ready to wonder by showing restlessness and a desire to "go home"
- Anger/aggression: do not take it personally; do not confront the patient; keep the patient safe (no available weapons); avoid potential triggers for anger
- Hallucinations/paranoia: do not confront the patient; increase lighting and modify aspects of the environment that are threatening or disturbing; (As a rule, it is important to maintain as familiar an environment as possible.)
- Unable to sleep: avoid caffeine and naps; emphasize physical activity; establish a bedtime routine
- Not eating: provide multiple small meals that include the patients favorite foods; provide soft foods to minimize chewing; provide finger foods to diminish complexity of eating; remove distractions; maintain a consistent environment for meals; have an alternative caregiver help the patient with eating
As is obvious, doing all or many of these things is not easy. It is not a benefit to the patient for the caregiver to "burnout" or get sick. Therefore, it is important for the caregivers to be aware of their limitations, take breaks and obtain or develop support systems to help them handle this difficult responsibility. Local Alzheimer disease support groups and the Alzheimer's disease association can provide further advice in this area.