NIH Spends Millions Examining How Loved Ones of People with Bipolar Disorder Can Better Care for Themselves
It’s the golden rule in caregiving: Take care of yourself first.
Yet when it comes to caring for people with bipolar disorder, who also may be in recovery, it seems that everyone from caregivers to the medical establishment has forgotten this important rule of thumb.
The reason why caregivers must make their own health paramount? It’s simple. Just as flight attendants tell parents to put their own oxygen mask on first in the event of cabin de-pressurization before putting on your child’s mask, you can only be a good caregiver if you’re healthy and caring for yourself.
When it comes to caregivers for people with mental illness, however, often the only support they get are a couple of pamphlets when a diagnosis is first made that explains the illness in simple language. It’s a bizarre disconnect in comparison to support available for caregivers of say, the elderly or those with cancer. And it’s no secret that those groups believe they aren’t getting enough support either.
But soon, these caregivers may be in for a reprieve. The National Institutes of Health (NIH) recently funneled $2 million toward researching ways to better support caregivers of people with bipolar. The money has been granted to nurse scientists at Case Western Reserve University.
“Existing strategies for these caregivers have had little effect on improving their health,” said Jaclene A. Zauszniewski, principal investigator, in a Case Western news release.1 “If we can get to a place where family members can manage their distress and remain healthy, then they’ll be able to provide better care for their relatives.”
Caregivers of Those with Mental Illness ‘on Pins and Needles’
A 2016 report dubbed “On Pins and Needles: Caregivers of Adults with Mental Illness” detailed just how large the mental illness caregiver nation is and just how poorly they are being served. Per the report, produced by National Alliance for the Mentally Ill (NAMI), Mental Health America and National Alliance for Caregiving, more than 8 million Americans provide care to adults with emotional or mental health issues.2
“Policymakers, healthcare providers, insurers and other stakeholders in medical and behavioral health should continue to work toward a coordinated system of care that supports wellness for those managing mental illness,” the report stresses.
According to the report, which studied more than 1,600 caregivers ages 18 and up, most mental health caregivers are around 54 years old and care for a relative (88 percent), usually a son or daughter (45 percent) or a parent (14 percent). About half report that they support their loved one financially.
“Half of caregivers say it is difficult to talk to others about their loved one’s mental or emotional health issues (48 percent), pointing to the ongoing stigma that surrounds mental illness and, by extension, the unpaid caregiver,” the report states. “About half of mental health caregivers report feeling alone and 63 percent say they have less time for themselves than they would like, due to caregiving. This combination of stigma and isolation has implications on the caregiver’s well-being: 74 percent report feeling high emotional stress. This emotional burden an constant feeling of being “on pins and needles,” and yet isolated, can lead to physical health impacts for the caregiver. About four in 10 say they find it difficult to care for their own health.”
A study of mental health caregivers in Iran, published in Iranian Journal of Psychiatry, arrived at similar conclusions. Even halfway around the world, stigma is the biggest burden caregivers face. “Family members may avoid social situations and spend energy and resources on hiding the secret,” the authors wrote.3 “Besides, they may experience discrimination within employment and/or housing situations. Providing psychiatrists with skills to identify and address the impact of blame, shame and contamination on individuals with mental illness and their family members should be included as a training objective.”
So, What Should We Do About All of This?
Recommendations for solutions made in the “On Pins and Needles” report include the following:
There needs to be even more “treatment parity” for mental health issues vis a vis medical issues. “This may include providing education for providers, caregivers and patients about state and federal parity laws and what healthcare benefits should be covered under a patient’s health plan or insurance, such as clinical treatment, health care services or medications.”
Many healthcare providers of people with mental illness already have entire departments aimed at helping patients and caregivers do just that. They also can provide assistance in “navigating the mental health system,” the report added, “with active outreach to caregivers to offer information and care coordination. County or state behavioral health entities, as well as health insurers, can play a key role in providing navigation assistance to patients and their families.”
To avoid isolation, caregivers should seek out any nearby support groups for caregivers of those with bipolar or any mental illness. But more groups are desperately needed, particularly outside of urban areas. There also need to be more (and more information about, in places where they exist) respite care services, from short-term relief so caregivers can take a short vacation to adult day care programs.
Much More Work Is Needed When It Comes to Reducing Stigma
The Case Western grant is intended to help explore ways that go beyond these general recommendations. The Case Western researchers’ assignment is to find tailor-made solutions for different caregivers who experience different types of problems.
“Based on clinical and written tests, researchers will match caregivers with ways to self-manage their health that best fits their mental and physical needs,” according to the Case Western news release. “For example, caregivers with low variability in their heart rates – a sign of stress – will be taught breathing techniques designed to have calming effects.”
“Researchers may also prescribe training in specific self-help and help-seeking skills to aid caregivers in coping with the ups and downs of their family member’s bipolar disorder.”
1. Case Western Daily. (2016, Dec. 15). “NIH funds $2 million study to improve health of caregivers of relatives with bipolar disorder.” Retrieved Jan. 13, 2017, from http://thedaily.case.edu/nih-funds-2-million-study-improve-health-caregivers-relatives-bipolar-disorder/
2. National Alliance for Caregiving, National Alliance for the Mentally Ill (NAMI), Mental Health America. (2016). On Pins and Needles: Caregivers of Adults with Mental Illness. Retrieved Jan. 13, 2017, from http://www.caregiving.org/wp-content/uploads/2016/02/NAC_Mental_Illness_Study_2016_FINAL_WEB.pdf
3. Shamsaei, F. et al. (2013, Oct. 8). Family care giving in Bipolar disorder: Experiences of Stigma. Iranian Journal of Psychiatry. Retrieved Jan. 13, 2017, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281654/
Written by David Heitz