Mental Health Challenges: Help for Caregivers

Published In Caregiver Advice and Resources

Here’s yet another myth buster about growing older: Mental health disorders are not a normal part of aging.

In fact, there are three “patterns” of mental health disorders commonly seen across the lifespan, including individuals who:

  • Develop some disorder early and maintain it into later life; 90% of lifetime cases start by age 42
  • Experience some mental disorder for the first time in later life, and
  • Come to later life with a “liability” such as a genetic condition aggravated in later life that produces a mental disorder.

Recent research underscores stressors that older adults commonly face that may make them more prone to developing or triggering some types of mental disorders, such as depression, schizophrenia, and anxiety and bipolar disorders. Seniors’ common stresses include concerns over money for care and living expenses, conflicts among family members, and worries about their own health and well-being.

Many seniors are also fairly familiar with physical disorders they’ve experienced over time, but are far less comfortable admitting to a mental disorder—fearing that will stigmatize them. And that feat makes many of them far less likely to seek out mental health services. And even those open to such help may come up against other barriers, such as the shortage of geriatric mental health providers, high expense of the services, or transportation problems.

Challenges for Caregivers

While these facts sketch a somewhat bleak picture for some struggling seniors, there are also unique challenges for the estimated 8.4 million Americans currently acting as caregivers for adults with mental or emotional health conditions.

Those challenges were catalogued in a recent study of more than 1,600 mental health caregivers titled “On Pins and Needles: Caregivers of Adults with Mental Illness.” A snapshot of those surveyed, responsible for providing more intense care for longer periods than other caregivers, also gave tangibility to the unique strains many of them experience. These caregivers reported:

  • Being financially responsible for their care recipient 49%
  • Experiencing a negative effect on their own health 62%
  • Having difficulty talking with others about their issues 48%
  • Being subject to a high level of emotional stress 74%
  • Feeling excluded from communicating with mental health providers 55%

Another complication: They are alone in those difficult trenches. Only about a third of them said there was a possible successor caregiver available if they became unable to do the job.

Just after “On Pins and Needles” was published, C. Grace Whiting, president and CEO of the National Alliance for Caregiving said she realized that mental illness was “not a casserole disease.” She was particularly moved by one of the caregivers in the report, who was quoted as saying: “I would really like someone to bring me a casserole. Casseroles seem to be reserved for people with heart problems, cancer, and accidents, yet these problems are either resolved or the person dies, bringing closure to the medical crisis. With mental illness, it never goes away—and in our case, has never gotten any better.”

Sound Advice in ‘A Circle of Care’

Whiting says the report and the casserole quote in particular inspired her organization to take action and produce tangible results: Circle of Care: A Guidebook for Mental Health Caregivers.”  The publication is a compendium of fact sheets on what Whiting says are “twelve different domains” designed to guide unpaid friends, family, and neighbors who care for someone with a mental health condition.

The topics covered, of particular concern to this audience, include:

  1. About Mental Health Caregiving
  2. Economic Impact of Mental Health Caregiving
  3. Finding the Right Provider
  4. Communicating with Health Professionals
  5. Getting an Accurate Diagnosis
  6. Hospital Discharge Planning
  7. Health Insurance
  8. Community Services
  9. Dealing with the Criminal Justice System
  10. Planning for the Future
  11. Confidentiality and Family Involvement, and
  12. Taking Care of Yourself.

Whiting points with particular pride to the segment in the guide on communicating with health professionals—as noted, a topic that’s been of particular concern to the caregiving crowd. The majority mentioned they felt out of the loop in discussions with health care providers. And a deeper dive revealed an unsettling reality: Most caregivers (71%) said they turned to a health care professional for help or information about how to provide the proper care, but more than half (54%) said they had been told the provider could not speak with them directly.

The fact sheet begins with a brief explanation of Health Insurance Portability and Accountability Act (HIPAA), the federal law designed to help safeguard the privacy of medical information, but too often misunderstood and misused by providers to prevent needed exchanges. It also gives practical advice about how to help break down this information barrier, beginning by having frank and open discussions with the person in need of care. And finally, it includes pointers on keeping health information updated and organized.

Additional Resources for Help

While the going may often feel tough, there are now a number of information sources and tools for caregivers dealing with those who have mental health issues.

Organizations include:

National Alliance on Mental Illness (NAMI)

Mental Health America (MHA)

MentalHeath.Gov, and

Family Caregiver Alliance

Relevant online publications are:

American Association for Geriatric Psychiatry’s “Find a Geriatric Psychiatrist.

American Psychological Association’s “Caregiver Briefcase,” and

U.S. Department of Health & Human Services’ “Supporting a Friend or Family Member with Mental Health Problems.

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