Across all cultures and many generations, caregivers have long served as a pillar of support within the health care system. Part of an invisible workforce, they juggle many roles as they fulfill patients’ physical, psychological, financial, and social needs. As caregiving is usually unpaid, some do it out of love; others do it because they have no other choice. Caregiving can be incredibly rewarding, but it is also a tough job that can result in high levels of burnout.
Nowhere is the role of caregiver more complex than when caring for patients with comorbid physical and mental illnesses. Physicians may tackle the challenges of physical health care, but what if the patient has additional mental health diagnoses such as depression, substance use disorder, paranoid schizophrenia, and/or autism? Suddenly, caregivers must also take on the role of crisis preventer.
Suddenly finding themselves in charge of another’s care is a common experience among caregivers. More than half say they came into it unexpectedly.1 As a result, there are many steep learning curves and sacrifices to overcome. Caregivers must quickly learn the ropes of the health care system, juggle appointments and medications, and decipher insurance policies. Then there are the bills that must be paid; funding for these bills often comes from caregivers’ pockets. Those caring for children and spouses have the added pressure of always being on call. Over time, the lack of personal time can be draining.
Those caring for patients with mental health comorbidities must prepare for even more challenges. These can include ensuring patients do not wander off, making sure they take their medication as directed, and keeping them physically safe. Many caregivers have the added risk of fending off verbal and physical abuse from their patients.
Caregivers, especially those with comorbid patients, are in dire need of roadmaps to prepare them for their new and changing roles. While the onus is on them to learn the ropes, the medical community has valuable experience and guidance to share. Some advice, a kind word, or just listening can go a long way toward empowering caregivers with information and reminding them to breathe.
It was not too long ago that many patients suffering from mental illness lived fulltime in state-run psychiatric hospitals. By the 1970s, these facilities started to close as reports of poor living conditions and civil rights violations increased. At their height, more than 337,000 mentally ill patients lived in psychiatric hospitals. By 1992, that number had dropped to 101,000.2 Many of these patients were diverted to smaller group homes or received outpatient treatment and other services. Others were looked after at home by family caregivers. Still others fell through the cracks and did not receive any treatment. Many became homeless.
Today, more than 21% of the United States population serve as caregivers. Most are unpaid.1 If this work were replaced with paid services, the national cost would be $470 billion annually.3 About 72% care for their spouse, 21% care for a child, and 7% care for both.4 Every day, they provide physical assistance, manage medications, pay bills, provide emotional support, and advocate for patients’ needs.
Caregivers to comorbid patients often have added challenges. They must ensure medications are regularly taken as directed to prevent relapses and hospitalizations. Studies indicate that medication compliance is generally lower among patients with psychiatric disorders than those with physical disorders.5 That means caregivers often resort to bargaining with patients or becoming strict to ensure they follow directions. Caregivers must also remain extra vigilant to protect the safety of comorbid patients when they venture out. People with mental disabilities like autism are between 4 and 10 times more likely to be victims of crime and 10 times more likely to suffer sexual assault and robbery.6
As a result, burnout—a state of physical, mental, and emotional exhaustion—is common among caregivers. About 75% describe their work as stressful. More than half say it is overwhelming. Caring for a patient with comorbid mental health illnesses only increases this stress.7 About 53% of caregivers have experienced a decline in their own physical health, and 70% struggle with their mental health.8 Although 90% of caregivers say they still value the experience, this work often takes a high degree of personal sacrifice.9
Parents and others caring for patients with long-term illnesses have the added worry of wondering who will provide care when they die. Losing a parent is a devastating experience for anyone, but comorbid patients with mental illnesses may suffer more intensely. In 1 grief study, 11% of physically disabled and nondisabled adults experienced severe grief for 10 months or longer after the death of a loved one. A third of psychiatric outpatients reported intense grief lasting an average of 10 years.10
Resources to Guide Caregivers
Planned Lifetime Assistance Network: a nonprofit that helps families create and manage long-term care plans for adult children with lifelong disabilities
AARP: caregiving guides, financial tools, and resources for a wide variety of caregiving situations
National Alliance for Caregiving: provides news, events, resources, and research related to caregiving
National Family Caregivers Association: a nonprofit that supports, empowers, educates, and advocates for more than 50 million caregivers across the country
National Institute on Aging: provides resources and tips to caregivers of patients with Alzheimer disease or dementia
Next Step in Care: helps family caregivers and health care providers transition patient care to other facilities
Paying for Senior Care: provides calculators, financial assistance resources, and product reviews for those looking to pay for long-term care
National Respite Network: helps families find respite and crisis care services within their local communities
Developing a Plan B
To prepare for any number of possible outcomes, all caregivers should create a plan to address the logistical, communicative, financial, and legal situations associated with care. Here are just a few to consider:
Build Relationships: Whether it is a physician or a pharmacist, now is the time to collaborate with all the parties involved with the care of a patient. Early engagement with local law enforcement can reduce incarceration and other legal risks. Open communication, strong relationships, and mutual respect will only benefit the overall health of a patient.
Respite Care: This provides caregivers with short-term relief from their duties for anywhere from a few hours to several weeks. Options allow for care to be provided at home, at a health care facility, or at an adult day center.
Emergency Backup Plan: Whether temporary or permanent, family members should make a plan to provide care to patients in the unlikely event the caregiver suffers a medical emergency.
Crisis Plan: Establish a plan of action before an emergency occurs. This can make decision-making easier when the stress of a situation challenges a person’s ability to think logically. A crisis plan can include a list of resources, information, and directions for any number of scenarios.
Secure Information: Keep all medical, legal, and financial information in a safe place. This can include medication lists and instructions, a copy of a crisis plan, contacts for doctors, and information on financial accounts. Caregivers should also designate a third party who can access this information in case of an emergency.
Long-Term Care: About 60% of people will need some assistance with things like getting dressed, preparing food, and attending appointments.10 Whether for the caregiver or the patient, everyone should be aware of their options and how to pay for it.
Informed Consent: This is an agreement between an individual and a health care provider that the patient will have ample information about medical care, treatment, and services to make free and informed decisions.
Guardianship: Also known as a conservatorship, this is a legal process in which a court gives custody of a child to someone other than the parents. Guardians may or may not have the added duty of managing a child’s estate and other responsibilities.
Financial Power of Attorney: This is a legal document that grants a trusted agent the power to make financial and property decisions on behalf of another person.
Health Care Power of Attorney: This is a legal document that allows an individual to make medical decisions on behalf of another person.
Living Will: This is a type of advance directive that details instructions on the specific types of medical care an individual wishes to receive if he or she is no longer capable of making medical decisions.
Caregivers’ Final Needs: Only 36% of individuals have discussed their plans for their funeral with their family members.11 Less than half have a will to detail how their finances and estate will be managed after their death.12 Having a clearly defined plan will alleviate the stress with which family members may already be struggling.
Preparing the Patient: Preparing a patient early for a transition of care to someone else can help lessen the disruption when the time comes. An early introduction will allow ample time for relationship-building.
Grief Counseling: Help the patient grieve the loss of their caregiver by providing a plan for counseling.
Dr Jonnalagadda is a psychiatrist with Mindpath Health.
1. Research Report: Caregiving in the U.S. AARP Family Caregiving; National Alliance for Caregiving. May 2020.
2. Wolfe K. Who will care for their children? aging parents worry about mentally ill sons and daughters whom they leave behind. The Carter Center. October 26, 1999. Accessed January 5, 2022.
3. RAISE Family Caregiving Advisory Council delivers report; recommendations for improving support to family caregivers. Administration for Community Living. News Release. September 22, 2021. Accessed January 5, 2022.
4. The Impact of Caregiving on Mental and Physical Health. BlueCross BlueShield. September 9, 2020.
5. Cramer JA, Rosenheck R. Compliance with medication regimens for mental and physical disorders. Psychiatr Serv. 1998;49(2):196-201.
6. Chown N. ‘Do you have any difficulties that I may not be aware of?’ a study of autism awareness and understanding in the UK police service. International Journal of Police Science & Management. 2010;12(2):256-273.
7. Caregiver burnout. Aging in Place. Accessed January 5, 2022.
8. ARCHANGELS data. ARCHANGELS. Accessed January 5, 2022.
9. Jones D, Harvey J, Giza D, et al. Parental death in the lives of people with serious mental illness. J Loss Trauma. 2003;8(4):307-322.
10. What is long-term care (LTC) and who needs it? LongTermCare.gov. Accessed January 5, 2022.
11. Potts L. 8 tips for funeral planning. AARP. Updated December 1, 2021. Accessed January 5, 2022.
12. Jones JM. How many Americans have a will? Gallup. June 23, 2021. Accessed January 5, 2022.