An estimated 3.4 million Texans help a loved one with their activities of daily living like bathing, eating, dressing and hygiene. A person may need caregiver support for various reasons, including physical and behavioral health conditions and medical issues. While caregivers can be paid staff, recent studies indicate most are informal caregivers who receive no payment and are often close relatives (particularly female spouses and daughters) of the loved one receiving care.
The Texas Health and Human Services Profile of Informal Caregiving in Texas discovered the following attributes about Texas caregivers of older adults:
- The majority are the child or spouse of the person they care for
- 90% live within 10 miles of the person they care for
- 99% provide care at least once a week
- More than half are not employed
- They are likely to be between the ages of 40 and 64
Being a caregiver can be physically and emotionally demanding and may also affect the caregiver’s finances and employment status. AARP reports more than 50% of U.S. caregivers work full time and more than 60% of caregivers say their work has been affected to some extent from caregiving. One in five caregivers report experiencing high financial strain because of their caregiving role. Because of the reported physical and financial strains, about four in 10 caregivers say their situation is very stressful. Caregiver burnout is physical, emotional and mental exhaustion that can result from providing care without enough support and may manifest as a combination of fatigue, stress, depression and anxiety.
Even with the associated stresses, caregivers often feel tremendous satisfaction in providing care to their loved ones. To support caregivers, there are community-based services that provide free or low-cost services, such as respite, support groups, counseling or service coordination, that can help with the challenges associated with caregiving. Employers can support their employees by offering benefits, such as referrals to caregiver supports, flexible schedules, support groups and discounted home health services.
Resources for Caregivers and the People They Care for:
During the COVID-19 pandemic, many resources and supports caregivers normally rely on may not be available. Here are some resources for caregiving during the pandemic:
- The Centers for Disease Control and Prevention has helpful information specific to caregivers.
- The Caregiver Action Network has more helpful tips and information.
- The Alzheimer’s Association has helpful tips for providing care to a person with dementia during the pandemic.
While being a caregiver can be very rewarding, it can also be stressful and present health challenges for the caregiver. A recent survey found that about one in four caregivers say they have difficulty caring for their own health. Respite care, where someone else looks after your loved one while you take a break, is a great way for a caregiver to have some time for themselves. Respite provides caregivers with the ability to run errands and take care of other personal matters. Respite care can be provided in several different settings for a couple of hours or for a couple of days.
The HHS Take Time Texas website has several resources to help caregivers, including:
- A search function that finds respite providers in Texas
- Testimonials from families who use respite
- Links to national resources
- Resources for family caregivers
- Common myths about respite
Advance Care and End-of-Life Care Planning
Medical emergencies are often scary, but the experience may be even more stressful when someone can’t make decisions about their care and their caregiver does not know their wishes. Although difficult, planning ahead can reduce the stress experienced by loved ones while allowing a person’s wishes to be honored during a medical crisis or end-of-life. Advance care planning is the process of making decisions about the care you would like to receive in the event of medical crisis or at the end of your life. Below are some of the main elements of advanced care planning:
- Advance directives are pre-existing orders that a person creates to provide specific directions and wishes in the event they are unable to communicate those decisions themselves.
- Palliative Care and Hospice
- Palliative care: If your loved one contracts a serious illness, they may be interested in palliative care. Palliative care is intended to help people who have a serious illness feel better. It is used to treat the symptoms and side effects of a serious illness. For more information, visit the Palliative Care website.
- Hospice: Hospice is an option for people that need end-of-life care. Hospice is comprehensive care for a person with a terminal illness who is no longer receiving treatments intended to cure the illness. For more information, visit the National Hospice and Palliative Care Organization Website.
A recent report on caregiving found that 36% of caregivers feel that their situation is emotionally stressful. Community organizations can alleviate some of the stress by addressing some of the challenges that arise when caring for a person. Examples of support services include:
- Home modification
- Care coordination
- Home health and home care
- Home-delivered meals
- Benefits counseling
- Evidenced-based health and wellness classes
Aging and Disability Resource Centers serve all Texas counties to provide streamlined access to important support services. A part of the No Wrong Door system, ADRC staff can provide caregivers with referrals to national, state and community services.
Emergencies can happen at any time and planning ahead is important — especially for caregivers. Planning can help caregivers think through all the items they would need in an emergency but getting started can feel overwhelming. The good news is there are a lot of valuable resources available to help with planning.
- Administration on Community Living has compiled a list of helpful preparedness resources for older adults and their families.
- Centers for Disease Control has a list of easy-to-follow steps for older adults on making a plan and putting together an emergency kit.
- Department of Homeland Security’s Ready campaign provides families with resources to make an emergency plan.
- The Administrative for Community Living, National Alzheimer’s and Dementia Resource Center, and Research Triangle Institute collaborated on this disaster planning toolkit for people living with dementia.
Emotional and Peer Support
Support groups can provide caregivers with a community of people experiencing similar issues. For caregivers, having access to others who are also experiencing challenges and lessons creates a community and lets them know they are not alone. Support and peer groups also provide caregivers with the opportunity to learn from other’s expertise and can provide a safe environment where they can express their own caregiving challenges.
Caregiving also affects employers and communities. Six in 10 caregivers report their work is being impacted by caregiving and 50% of the workforce believes they will be caregivers within five years. Employers can support their employees by providing caregiving benefits, such as referrals to caregiver supports, flexible schedules, support groups and discounted home health services. Communities can support caregivers by making sure there are respite resources to meet their needs. To find out more about how your community can support caregivers, read this respite issue brief (PDF).
Training opportunities can provide caregivers with the tools, resources and supports they need to provide care for their loved ones.
- Caregivers providing care for a loved one with dementia could benefit from ongoing training and support. The Alzheimer’s Association is a good source for this support.
- New caregivers can connect with a supportive community and receive important resources through the Caregiver Action Network or WellMed Charitable Foundation.
- The Family Caregiver Alliance provides classes for caregivers and fact sheets on caregiving for different types of patients.
- AARP's Home Alone Alliance Initiative has compiled practical videos for caregivers on daily tasks they may complete with their care recipient.
- Next Step in Care has guides and checklists for caregivers, including guides for doctor visits, managing medications and emergency room visits.
- Supported decision-making agreements allow people who may struggle with managing their affairs to remain in control of their lives and to make their own decisions with support and assistance. Through a SDMA, a person chooses someone they trust to serve as their supporter. The supporter can help the person:
- Understand the options, responsibilities and consequences of their decisions.
- Obtain and understand information relevant to their decisions.
- Communicate their decisions to the appropriate people.
- Guardianship is a legal process to determine if, due to a physical or mental condition, a person is “incapacitated” and therefore unable to manage their affairs on their own. Under a guardianship, someone is named to make decisions on behalf of the person deemed incapacitated. In Texas, a person may designate a guardian before the need arises.
- For information about how to pre-designate a guardian, visit the guardianship and related procedures webpage.
- For general information about guardianship, visit the HHS guardianship webpage.
- Kinship custody: At times family members are called on to care for a child that is related to them when the child’s parents are no longer able to care for them. For more information, visit the Texas Department of Family and Protective Services website for more information about kindship care.
According to a 2020 Profile of Informal Caregiving in Texas compiled by HHS, more than half of caregivers are not employed and 42% of informal caregivers reported that providing care has strained their finances. The following resources are a starting place for informal caregivers looking for help with financial planning and benefits.
- The National Alliance for Caregiving is a great resource for caregivers looking for financial planning resources and benefits.
- The Consumer Financial Protection Bureau has helpful tools for caregivers who are helping to manage their care recipient’s money.
- Next Avenue has helpful information about financial assistance for family caregivers.
- There are times that informal caregivers can be paid for being a caregiver. For more information, visit the AARP website.