Caregiver Burden
Jerry L. Old, MD
Consulting Chief Medical Officer Hospice Care of Kansas,
and Geriatric Clerkship Director/Associate Professor KU School of Medicine-Wichita
The next time you are in a physician’s office, take a good look at the caregiver family members and spouses that are accompanying the “patients” who are there to be seen. Statistics indicate that those people may actually be at a higher health risk than the ailing patient they are bringing in to see the doctor! Particularly, elderly spouses acting as caregivers have a mortality risk that is 63% higher than others. Elderly caregivers often die before the person they are caring for!
At any given time, 25% (1 in 4) of the adults in the United States report providing caregiving for an older adult. As our population ages, this number is likely to increase. Obviously, family caregivers perform an important service for our society, but they do so at a considerable cost to themselves.
What does caregiving encompass—just about everything! The list is endless: transportation, shopping, housekeeping, emotional support, hugs, sharing memories, cooking, feeding, giving medications, nursing care, personal care, hygiene, financial management, to just name a few. Hence the term “Caregiver Burden”—caregiving is exhausting work.
But the “burden” is a subjective measurement. Studies suggest that the degree of functional (physical) impairment does not correlate with caregiver burden. That is, caregiving to someone who is totally debilitated physically may not be a tremendous yoke. As a matter of fact, many caregivers find rewards in caring for this type of appreciative individual.
However, the degree of behavioral dysfunction does correlate with the extent of caregiver burden. The dementia diagnosis provides the greatest burden on the caregiver. Unfortunately dementia is increasing as we live longer. It is present in 10 percent of individuals over 65, but jumps to 47% in persons older than 85 years. The point is that most of these persons are cared for at home—often by an elderly spouse who is the least likely qualified person to do the caregiving.
In these situations, the caregiver tends to put the needs of the ill person ahead of their own. They often deny their own healthcare, while taking the person they are caring for to the doctor. They have no time for self care or exercise, and sleep quality and nutrition are often poor. Medical studies have shown that the immune function of such caregivers may decrease making them more susceptible to viral illnesses, other infections, depression and anxiety. Even an increased risk of cancer has been observed.
Memory loss itself is not that limiting—we can get by pretty well in our society if we can’t remember things, but behavioral issues are extremely frustrating and hard to deal with. For example, the person you are caring for may not know you anymore—they are not the same person. Behavioral issues, such as yelling, hitting, wandering, and incontinence make caregiving in the dementia patient very difficult. The caregiver may not get any thanks (they may get only rejection) from the person that is being cared for, which adds to the frustration.
Ironically, what family members and physicians often recommend—nursing home placement—may not solve the problem. Even after institutionalization, many elderly spouses continue to be directly involved in caregiving. They still get up early and arrive at the nursing home to help their loved one get ready for breakfast. They often spend the day at their bedside, continuing to give care and support. They still don’t sleep well at night either worrying about their loved one, or feeling guilty for not being there. They still don’t have time for themselves, and now have the additional stress of being in a strange place, learning new routines, having other people around, and dealing with the financial burden.
Therefore, interventions that better prepare the caregiver—not just the patient—for a placement transition is essential!
It is important for caregivers to recognize the stress they are under. Help is needed when the caregiver begins to feel overwhelmed—low energy level, no time for themselves, trouble sleeping, no time for relatives or friends, trouble eating (too much or too little), loss of interest, anger, or a feeling of “why me!”
What kind of help is available? Community agencies can be found through “Eldercare Locator” (Telephone 1-800-677-1116). This is a nationwide service on aging that can help locate services such as adult day care, home aids and social workers in the given area.
If the diagnosis is appropriate, and aggressive cure is not possible, Hospice is another organization that has also proven to be of benefit. Anyone on Medicare has a hospice benefit that requires no co-payment. Studies show that a patient being on Hospice is associated with a significant reduction in the risk of death of the hospice patient’s caregiving spouse.
When a patient’s symptoms--especially pain--are relieved, the caregiver burden is relaxed. If financial restraints are present, the hospice Medicare Benefit also includes payment for all medications related to the diagnosis and all medical equipment. This includes oxygen supplies, assistive devices, wheelchairs, hospital beds, low air-loss mattresses (to prevent skin break down), and other supplies.
Another enormous benefit to family caregivers from Hospice is “Respite.” Respite means a break for the caregivers—usually 5 days. Hospice can pay for short term placement of the patient allowing the caregivers a much needed rest. This is available every 60 or 90 days depending upon how long the patient has been on hospice services.
Small interventions can make a big difference in a caregiver’s life. Just having an hour a day, while the hospice employee is there, to sit on the front porch in the sun may cure the mental status changes that come from depression. Simple listening, by the hospice professional or the volunteer often validates the caregiver’s position and makes them feel not alone. Finally, just the caring presence of another human can prove to be invaluable.
I learned a little rhyme somewhere—“You can pretend to know, you can pretend to care, but you cannot pretend to be there.” A visit or the simplest word of encouragement to a caregiver might just make their day!