“Caregiver Burnout” – Facts, Questions, Resources

Late last year, I asked if any of the caregiver members of our local support group could help with some activities.  Group member Denise Dagan volunteered her time.  She has been reviewing a stack of books, DVDs, newsletters, etc. that I haven’t had time to review over the last several years.

One of those items is the “Second Opinion for Caregivers” video series produced by PBS.  Back in October 2010, I emailed the support group a transcript of and resource list associated with their episode on “Caregiver Burnout.”

Denise reports that the webpage for the “Caregiver Burnout” episode now includes the full, 27-minute video, which is worth watching:


Also, Denise reports that the terrific resource list has been given its own webpage:


Denise watched three of the eight “Second Opinion for Caregivers” episodes.  She provided a summary below of what she learned that you may find valuable.  In particular, I draw your attention to these statements:  “One concept doctors need to embrace and communicate is that when a patient is diagnosed with a long term illness, there are actually two patients’ health needs to consider. If the patient is to be properly cared for, the health of the primary caregiver is of equal importance.”

Along those lines, one of the key points made by the “Caregiver Burnout” episode is that “Being a caregiver puts your physical and emotional well-being at risk.  If you are caring for a loved one, let your doctor know.  It can be important to the healthcare you receive.”

A big “thanks” to Denise, with more to come!



Denise’s Report on
“Second Opinion for Caregivers”
PBS video series

Since 2004, the PBS video series, Second Opinion, has been improving the nation’s health literacy in an entertaining format.  Host, Dr. Peter Salgo, engages a panel of medical professionals and patients in an in-depth discussion about life-changing medical decisions.  Using real-life cases, the specialists grapple with diagnosis and treatment options to give viewers the most up-to-date medical information available at the time of filming.

As a National Public Education Campaign on Caregiving, series producers assembled eight of these episodes into Second Opinion for Caregivers.  Most are available free online at


I viewed three of the caregiving episodes, Alzheimer’s Disease: A Caregiver’s Journey, Kidney Disease: Caring for a Chronic Illness, and Caregiver Burnout.  Here’s a link to the Caregiver Burnout episode:


One concept doctors need to embrace and communicate is that when a patient is diagnosed with a long term illness, there are actually two patients’ health needs to consider. If the patient is to be properly cared for, the health of the primary caregiver is of equal importance.

Typically, it takes some time for a newly diagnosed ‘team’ of patient and caregiver to come to terms with what it means to live with a long term illness. Doctors commonly plan a series of appointments to follow up on treatments and provide information. IF those appointments consider the caregiver’s needs it is usually a cursory reminder to take care of themselves, too.

Consequently, doctors often see patients with symptoms like: being run down, poor sleep, changes in weight or appetite, irritability, lack of interest in family or previously enjoyed activities. They try to determine the cause from a medical standpoint, testing for chronic fatigue, thyroid problems, or treat for depression without asking the single question that may explain the root of the problem, “Are you a primary caregiver?”  If you are a primary caregiver TELL your doctor so he or she can factor that into their recommendations for your best health.

The doctor that asks the question may need to overcome resistance to the suggestion that the stress of the situation could be what is making the caregiver sick.  To some, that implies they have failed as a caregiver. They may need to hear the list of hats they are wearing to see how much they’ve taken on and why it is too much for a single person.

Many people don’t know what questions to ask when they return to the doctor for follow up. They don’t realize doctors can request community health agencies assess the need for: home health aids, nursing services, social workers, occupational therapists, dietitians, even hospice. They should have spelled out for them what each of those people can do to help both the patient and caregiver.

Doctors need to promote the idea of team caregiving on two fronts:

*The medical team, which consists of the primary care physician and specialist(s), and may include nursing, occupational, physical and/or speech therapists, dietitians, etc.

*The caregiving team, which consists of the primary caregiver, respite caregivers, home health aides, social workers, clergy, hospice, gardeners, handymen, house cleaners, family, neighbors and volunteers.

Once those teams are in place, paying for ALL the help is not factored into our current healthcare system. Because for so much of medical history there were no therapies for many of the illnesses we can treat today, long term care is a relatively new concept. Our medical treatment and payment system is set up for acute care. Doctors are presented with a problem, they fix it, send you on your way, and bill your insurance.

Being an assemblage of medical and caregiving professionals, this panel did not address how to pay for services, but did acknowledge financial concerns contribute to caregiver stress. They recommended primary caregivers be open to whatever assistance is offered, rather than turning away siblings, neighbors, etc. because of dissimilar caregiving practices or not wanting to be a bother. They suggest reaching out to find services and spread the burden of caregiving from a single person to a team.

In response to that, Second Opinion for Caregivers has assembled a very impressive list of organizations providing useful services including access to respite, adult day care, legal services, financial assistance, prescription coverage, hospice information, meals and nutrition programs, housing options, in home and elder care locators, benefits check ups, volunteer coordination, geriatric case managers, and more.  It can be accessed at