Focusing on the Caregiver: Seeing the Invisible Patient

Very few caregivers are ever asked by their loved one’s doctors or other professionals how they are coping with the care of another. Questions like whether the caregiver is eating properly, exercising, sleeping enough, become depressed, or getting any free time is often overlooked. Thankfully, some physicians and other healthcare professionals have noticed the lack of care given to the actual caregivers, and they are doing something about it.

The Invisible Patient

Dr. Ronald D. Adelman, co-chief of geriatrics and palliative medicine at Weill Cornell Medical College recently gave a talk in addition to publishing an article about “the invisible patient,” the caregivers of the elderly. He contends that doctors should be assessing caregivers when they check on their elderly patients.

The invisible patient refers specifically to a person supporting an elderly family member with dementia, heart disease, diabetes, or all of the above. Currently in the United States there are over 43.5 million people providing this type of care to a loved one over the age of fifty.

Recommendations for Caregiver Assessment

Dr. Adelman recently published an article in the Journal of the American Medical Association discussing the burden of caregivers with the objectives of providing strategies to diagnose, assess, and intervene for caregiver burden in clinical practice as well as evaluating evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress. He found that physicians have a responsibility to recognize caregiver burden. In addition, caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.

Some of the risk factors for the invisible patient that should trigger assessment by doctors include:

Being a woman The number of hours of care provided The complexity of medical tasks such as dealing with wounds, catheters and complex medication routines Transitions from one kind and location of care to another, like from home to hospital, to rehab, to skilled nursing care or to hospice Financial distress Level of cognitive impairment in the patient A less educated caregiver A caregiver who lives with the patient A lack of choice in assuming the caregiving role
The recommendations given in the article for treating physicians are fairly straightforward. It includes asking a caregiver a simple question like how they are doing, to more complex questions about making other arrangements for care if something were to happen to the caregiver. The article also encourages doctors to use a toolkit to assess the needs of the caregivers provided by the Family Caregiver Alliance.

Resources for Caregivers

In larger teaching hospitals, there are usually social workers and other professionals on staff to assess caregivers when their loved ones are brought in for treatment. Some hospitals are requiring that all medical students spend at least one rotation on the geriatric floor, regardless of their career aspirations, in order to understand and appreciate the warning signs for caregivers.

Doctors in the private practice are already used to making referrals to medical specialists, but this recent study encourages the development of a network for nonmedical referrals, too. Community agencies, visiting nurse services, geriatric care managers, elder care lawyers, and the like can all be utilized to help the invisible patients care for their loved ones.

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