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NLM Director’s Comments Transcript
Caregiver Assistance & Better Communication: 09/30/2013

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Greetings from the National Library of Medicine and MedlinePlus.gov

Regards to all our listeners!

I'm Rob Logan, Ph.D. senior staff National Library of Medicine for Donald Lindberg, M.D, the Director of the U.S. National Library of Medicine.

Here is what's new this week in MedlinePlus.listen

The extent of caregivers’ assistance to patients — and suggested strategies for physicians to assist caregivers — are detailed in an interesting commentary recently published in the Journal of the American Medical Association.

The commentary’s author (who is a professor at Harvard Medical School) explains about 42 million Americans are caregivers and they assist patients for an average of 20 hours a week. Muriel Gillick M.D. reports the majority of caregivers are middle-aged women caring for aging parents.

Dr. Gillick notes caregivers often assist patients with daily living activities, such as shopping, cooking, bathing, and dressing. However, Dr. Gillick writes (and we quote) “Nearly half of all caregivers report responsibility for complex medical tasks that often are the province of a professional nurse or trained technician’ (end of quote).

Dr. Gillick finds caregivers report they are responsible for clinical activities including: diet adherence, wound care, treating pressure ulcers, providing medications and intravenous fluids, as well as operating medical equipment.

Dr. Gillick notes the recipients of caregiving are likely to be seniors in the last stages of their life. In the year before death, Dr. Gillick explains only 17 percent of Americans are without a disability while about 22 percent have a persistent severe disability. She reports the largest groups of caregiver-dependent adults include seniors who are frail or have advanced dementia. Dr. Gillick notes about 28 percent of Americans are frail and 14 percent have advanced dementia in their last year of life.

Dr. Gillick adds patients who are frail or have dementia often cannot participate in the management of their care, which necessitates a caregiver’s involvement. Dr. Gillick writes (and we quote): ‘If (end of life) medical care is to be patient centered, reflecting the values (patients) no longer have the cognitive capacity to articulate, clinicians must rely on surrogates to guide them. Yet, few programs caring for patients with dementia (or frailty) regularly incorporate caregivers in every phase of care’ (end of quote).

To improve assistance to caregivers, Dr. Gillick suggests physicians need to better explain a patient’s underlying health condition as well as work with caregivers to prioritize a patient’s health care goals.

Dr. Gillick adds caregivers should be encouraged to provide input about a patient’s surroundings as well as more fully participate in health care planning in a partnership with attending physicians.

Dr. Gillick notes caregivers are especially helpful in creating a continuity of patient care within different settings. She writes (and we quote): ‘In the complex US health care system, in which patients are cared for in the home, the physician’s office, the hospital, and the skilled nursing facility, the most carefully thought-out plan of care will prove useless unless its details can be transmitted across sites’ (end of quote).

Dr. Gillick concludes physicians as well as health care organizations need to provide more educational support to help caregivers.

Meanwhile, MedlinePlus.gov’s caregivers health topic page provides comprehensive information about caregiving’s medical and emotional challenges. For example, a helpful website from the American Academy of Family Physicians (available in the ‘start here’ section) helps caregivers maintain their health and wellness.

A similar website that addresses overcoming caregiver burnout (from the American Heart Association) can be found in the ‘coping’ section of MedlinePlus.gov’s caregivers health topic page.

In addition, there are special sections loaded with tips to provide caregiving to seniors as well as women and children within MedlinePlus.gov’s caregivers health topic page.

MedlinePlus.gov’s caregivers health topic page also provides links to the latest pertinent journal research articles, which are available in the ‘journal articles’ section. Links to clinical trials that may be occurring in your area are available in the ‘clinical trials’ section. You can sign up to receive updates about caregiving as they become available on MedlinePlus.gov.

To find MedlinePlus.gov’s caregivers health topic page, type ‘caregiver’ in the search box on MedlinePlus.gov’s home page. Then, click on ‘caregivers (National Library of Medicine).’ MedlinePlus.gov additionally features health topic pages on Alzheimer’s caregivers, child care, and home care services.    

It is helpful to see JAMA address some caregiving issues. Let’s hope other medical journals will help educate caregivers and encourage more physician-caregiver communication.

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Please email Dr. Lindberg anytime at: NLMDirector@nlm.nih.gov

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A written transcript of recent podcasts is available by typing 'Director's comments' in the search box on MedlinePlus.gov's home page.

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A disclaimer — the information presented in this program should not replace the medical advice of your physician. You should not use this information to diagnose or treat any disease without first consulting with your physician or other health care provider.

It was nice to be with you. I look forward to meeting you here next week.