Caring for Caregivers - An Overview and Introduction
by Alan Kronhaus, M.D., Health and Welllness Editor

Family caregiving is at the core of what sustains people who are seriously ill, especially near the end of life – even those receiving intensive medical care. Family caregivers contribute in many important ways to the practical and emotional aspects of care, but by doing so, they put themselves in harm’s way.

Caregiving may take only a few hours a week, but commonly becomes a full-time job. Approximately 20% of caregivers provide full-time or constant care. The trajectory of a person’s functional decline towards the end of life can be difficult to predict, as can the corresponding need for care. Predictions are especially difficult in noncancer conditions such as dementia. And it’s not necessarily the care itself that’s so consuming, it’s the entire commitment. It just never goes away.

According to a recent article by Rabow and others in the Journal of the American Medical Association, caregiving responsibilities can be divided into five categories, which we can call the “five burdens.” They are time and logistics, physical tasks, financial costs, emotional burdens, and physical health risks.

The time and logistical requirements of caregiving typically revolve around coordinating numerous medications, doctor and hospital visits, social and medical services, as well as the needs of multiple family members. Caregivers who must juggle the schedule of young children as well as elderly parents can start to feel more like “soccer moms on steroids” than mere mortals. Caregivers who are themselves elderly, ill, and cognitively impaired or physically disabled face an even more desperate situation, especially if they are not able to drive.

Caregiving creates an uncompensated financial burden that can be enormous, both in terms of out-of-pocket expenses, as well as opportunity costs like lost time from work and vacation. Family members often have to quit work as a result of caregiving, and the family could lose most or all of its savings. The person being cared for may fear being a burden to his family, despite the family’s willingness to bear the costs of care, and these feelings may be associated with a preference for comfort-only care over life-extending measures.

Family caregivers tend to put the needs of the ill person ahead of their own. They often bear an incalculable emotional burden for their work. Although many derive deep satisfaction from their role, sadness, guilt, anger, resentment, and feeling of inadequacy are also common and understandable reactions. Anxiety and depression are common problems, and several studies have documented significant depression in as many as half of all caregivers.

Physical health risks are also significant among caregivers, especially older individuals with poor baseline health, who are called upon to perform strenuous physical tasks, like moving seriously ill adults, for which they have no training, and which put them at serious risk of injury. Those who lose social contacts and leisure time because of caregiving responsibilities are at even greater health risk. In a four-year study of caregivers over age 65, those who experienced stress had a significantly higher mortality than a control group of people who were not caregivers.

Providing care for people with Alzheimer’s disease is especially challenging because in the later stages of the disease, Alzheimer’s patients exhibit behavior, such as verbal and physical aggression, combativeness, and wandering, that is unusual, unpredictable and often dangerous.

In summary, the rewards of caring for a seriously ill family member may be great, but the risks and burdens of caregiving can be much greater. Caring, empathetic physicians, particularly those who see patients at home, can be a major source of strength and guidance for caregivers, validating their role as members of the healthcare team. Adult day care, respite care, and social and psychological support services can also significantly reduce the burden on caregivers, and demonstrably improve their quality of life.
We hope this month’s health and wellness section provides guidance and information to caregivers seeking such sources of support, and helps make their lives less difficult and their contributions more gratifying.

Caring for the Caregiver is edited by Alan Kronhaus, MD, owner of Doctors Making Housecalls. The number is 919.932.5700 or visit www.doctorsmakinghousecalls.com

Coping With Caregiving in the Context of Dementia

Caring for someone with dementia can be one of the most stressful situations imaginable. Several studies demonstrate that it is more stressful than caring for someone with any other terminal disease. Dementia steals a person’s entire life, but slowly. The process can progress over 10-15 years and can affect every aspect of the caregiver’s life.

A person with dementia often does not appreciate the problems they are experiencing, or understand why they are no longer able to live without “interference” and “help” that they believe is not needed. They increasingly resent and resist efforts to help and protect them as the disease progresses. The caregiver gradually loses the vital, independent “person” he or she knew.

Caregivers of people with dementia are far more likely than other caregivers to become depressed. They are much more prone to all kinds of illness, and have a much higher mortality risk than their peers. It is unique and troubling that such caregivers often experience more guilt, depression and burden after they place the person they’ve been caring for in an institution than they did before.

The severity of stress experienced by the caregivers of people with dementia is closely related to the behaviors the person with dementia is having, the amount of support the caregivers feel they have, the amount of depression or apathy the person with dementia has, and skill of the caregiver, and the caregiver’s knowledge about the disease and how it progresses.

Common changes and symptoms
The symptoms and behavior of the person with dementia are all based on the changes that take place in that person’s brain. Although many abilities are lost, some skills and functions are well preserved. People with dementia tend to develop typical patterns of speech, behavior, and routines.

For example, immediate recall and short term memory can be nearly wiped out, while long-term and emotional memories remain relatively well preserved. Concrete meaning is much better understood than abstract meaning. The ability to use hands or actions to communicate lasts longer than verbal communication skills.

The loss of skills and abilities results in “challenging” behaviors. The person with dementia will ask the same question over and over, for example, and have no idea that they’re repeating the question or that it’s already been answered several times. It’s incredibly frustrating for caregivers. People with dementia commonly employ confabulation when confronted with a situation like being caught driving without a license. The person forgets that his driving ability had been evaluated and his license revoked, so when he’s caught driving and can’t produce the license, he insists he left it in his other billfold. Such behavior can easily be viewed as lying, when it’s really the brain struggling to come up with a rational explanation for facts it has forgotten and circumstances it is not able to understand.
The vast majority of problematic behaviors that frustrate caregivers typically represent the person’s attempts to deal with the world around them in the face of deteriorating abilities and brain functions. The person with dementia is “doing the best he can,” and as difficult as it may be, caregivers must recognize that when their approach is not working, they need to stop the interaction, and step back and consider alternative approaches with some modification in words, actions, cues or context.

The key message of this article, however, is that caregivers need to know that there are resources in the area that are knowledgeable about dementia and its symptoms, and available to provide training, guidance, assistance, or just plain understanding and support. Local agencies use state of the art techniques and strategies to teach and support caregivers, from the beginning of their journey to the end.

Becoming more knowledgeable about dementia will change the caregiving experience. Caregivers should rely on local resources to become more skilled in their role, and learn to take better care of themselves. Doing so will reduce their stress and improve the interactions and outcomes of their caregiving experience.

Submitted by Teepa Snow, Director for Educational Programs, Eastern NC Chapter, Alzheimer's Association.

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