What PBS Forgot in its Caregiver Resources Section

As many know, family caregivers of aging adults are of extra-special interest to me. I’ve been studying their needs and creating health content for them since 2008, and these days I spend over half my time working on GeriatricsForCaregivers.net and a related site.

So I was thrilled to find out that PBS was releasing a special titled “Caring for Mom & Dad,” which is premiering this month.

But then I took a look at the website, clicked “Caregiver Support,” and I was a bit dismayed. Here are the resource sections I saw listed:

• Getting Started
• Managing Finances
• Government Resources & Support
• Workplace Resources & Support
• Communicating with Family
• Technology

Plus there’s an additional truth that all seniors and family caregivers should be aware of:

It’s common for those underlying health problems to be sub-optimally managed.

That sub-optimal management is first and foremost the responsibility of the involved clinicians and health systems. But usually there are some things that family caregivers can do as well, such as bringing up a concern at a doctor’s visit and making sure the doctor addresses it. (Did you know: a study of patients with documented dementia found that over half of them had never gotten a cognitive evaluation from their usual doctor. Sad but not at all surprising!)

In fact, although virtually every family caregiver I’ve talked to is at least somewhat involved in health issues, I find that they often underestimate the impact that sub-optimal health management has on their caregiving efforts.

For instance, I’ve come across several cases of families with a memory-impaired diabetic older adult, struggling to manage a complex insulin regimen and also coping with hypoglycemia and falls.

Often, although not always, we’re able to improve things by simplifying the insulin regimen and relaxing glucose control a bit. This is something that geriatricians think to do, but endocrinologists often do not.

Another common problem: people with memory problems are often being prescribed anticholinergics or sedatives that can make thinking worse (plus these increase fall risk).

The family caregiver who doesn’t learn to be proactive about asking doctors to simplify medication regimens is at a grave disadvantage. Ditto for the family caregiver who hasn’t learned to ask the doctor to revisit medications on the Beer’s list.

Most geriatrics care has to be delivered by non-geriatricians, because there will never be enough geriatricians to go around. All doctors – unless they are peds or OB — will need to get better at providing geriatrics care, but this will take time.

So providing family caregivers with at least some preliminary resources on how to help their aging relative get better care — and avoid harmful care — is a critical part of providing education and support.

Some Medical Caregiving Resources for PBS to Consider

What is really perplexing about the PBS oversight is that health resources were addressed in a prior PBS production titled “Caring For Your Parents,” which seems to be from 2008.

(How do I know about this prior PBS special? Because they listed it under the “More from PBS” section in the website footer.)

This section is well done, subsections of the health care resources include:

• Geriatric Medical Care
• Finding a Doctor
• Visiting the Doctor
• Hospitalization & Discharge
• End-of-Life Care
• Bereavement

So if PBS wanted to improve the resource section for the current production, they could start by updating the resources for the sections above. I don’t have time to pick my very favorite resources right now, but some resources I’d list include:

• NextStepInCare, for everything related to hospital discharge and transitions
• Hospital Elder Life Program, because delirum is a huge problem and family caregivers should know how to spot it and help prevent it
• PrepareForYourCare and the Stanford Letter Project, for advance care planning
• HealthinAging and NIHSeniorHealth, for solid information on how common health problems in seniors should be addressed
• ChoosingWisely recommendations for older adults, for tips on common treatments that are inappropriate and also because I’m hoping the Choosing Wisely campaign will help the public learn the awkward truth: doctors often don’t provide ideal care unless patients and families nudge them in the right direction.

When will we get better at providing senior health resources online?

A year ago, I wrote a blog post for the #HCLDR blog (Healthcare Leader), suggesting that we

“adapt the e-patient approach to empower older patients and their families to more actively participate in obtaining better healthcare.”

PBS doesn’t have to spread the word about e-patients and how people can now take advantage of Internet resources to get better healthcare for themselves and their loved ones. (Although it would be neat if they did!)

But I do think they need to make sure health resources are included, whenever they list resources for family caregivers of aging adults.

The nice thing about webpages is that they are easy to update and modify. I hope they consider adding a little extra info to their resource list soon. The media attention associated with this documentary means they have a big opportunity to reach — and helpfully inform — millions of people struggling with aging parents.

I don’t want to see them miss this opportunity to help families. Caring for Mom & Dad means helping them with their health. The sooner we get better at doing this, the better.