Informal or non-professional caregivers, such as family members, provide vital support to the people they care for and are integral components of Texas’ long- term services and supports (LTSS) system.
These caregivers fill gaps in the professional field by providing care many older Texans would not be able to afford or access otherwise. They help older adults remain independent and often provide complex chronic care such as nursing and medical tasks. Informal caregivers enable many older adults to age in place and remain active and connected to their communities. Because of their large role in the lives of older Texans and their impact on the LTSS system, it is imperative their needs and concerns are addressed.
Aging Well Texas, a group who acts as a guide for the Texas Health and Human Services Commission (HHSC) and other state agencies to support strategic planning to serve older Texans, recently conducted a statewide survey to identify the current and future needs and priorities of older adults, informal caregivers of older adults, and social service providers supporting older adults. See our post titled: Physical Health Ranked #1 Concern of Older Texans
Informal caregivers that responded to the survey were given a selection of topics. They were asked to think about the care they provided over the past three years and choose the topics that related to their needs or concerns. The top selected needs/concerns by respondents were:
The roles and responsibilities of informal caregivers can be overwhelming. Along with the physical impacts associated with supporting their loved one with activities of daily living, caregiving can have financial impacts and stress family relationships. All of this can contribute to informal caregiver burnout from stress.
Mental Health Concerns
While informal caregivers often feel tremendous satisfaction in providing their loved ones with support, their care responsibilities can also have negative impacts on their mental health. According to AARP, 21 percent of caregivers nationwide report feeling alone. This feeling of isolation can make providing quality care to loved ones more difficult. Add to that the stress many informal caregivers experience, and it becomes clear why mental health support for informal caregivers is so important.
A recent HHSC report on Texas’ informal caregivers found similar impacts. According to the report, 65.7 percent of informal caregivers indicated that providing care while meeting other family and work responsibilities was stressful. Furthermore, an informal caregiver respondent to the survey noted this:
“I work full-time. Then come home and help [care recipient] with chores, meds, PT, etc. The stress of this is taking a toll on MY health.”
Providing resources to support informal caregivers’ mental health helps both the informal caregiver and older adults care recipient. Preliminary strategies identified by HHSC and other state agencies to address this priority include promoting awareness of informal caregiver support services, education focused on specific conditions, such as Alzheimer’s, and efforts to expand informal caregiver support.
Physical Health Concerns
Informal caregivers often put their loved ones’ needs ahead of their own, which can affect their physical health. Additionally, the act of caregiving can be physically demanding. According to AARP, 23 percent of caregivers in the US find it difficult to take care of their own health. A similar number of caregivers report that caregiving has “made their own health worse.” According to the 2020 HHSC report on informal caregiving, over half of caregivers noted their health affects their ability to provide care.
National and state data illustrate caregivers need the time and support to take care of their own health. Respite care, or temporary care provided by an in- home attendant, long-term care facility, or other service provider, is one such service that can provide informal caregivers with much-needed breaks to take care of their own needs. When given the opportunity to take a break from their caregiving responsibilities, informal caregivers come back refreshed, recharged, and recommitted. It also provides time for self-care and reflection which are important to a person’s overall health. However, respite care is often expensive, and there is limited free respite care available.
An informal caregiver in poor physical health can negatively impact both the caregiver and care recipient, and it is clear that for informal Texas caregivers their physical health is a significant concern. Preliminary strategies identified by HHSC and other state agencies to address this priority include promoting education and awareness of physical health resources for informal caregivers and efforts to expand informal caregiver support.
Work Strains and Issues
According to AARP, 61 percent of caregivers nationwide are employed. The majority report they have experienced at least one impact to their employment as a result of their caregiving responsibilities. These impacts including arriving to work late, leaving early, or taking time off to provide care. Ten percent note they have had to give up work entirely or retire early to provide care for their loved one.
In addition to helping with homemaking and activities of daily living, many informal caregivers financially support their care recipients; 42 percent of Texas informal caregivers indicated providing care has strained their finances. One respondent noted their care recipient:
“lives on a limited income and at times I have to help her financially because she doesn’t have enough money to get through the month.”
Balancing work and caregiving responsibilities is challenging and can have significant impacts to employment and finances. It is important that employers are aware of these challenges and consider methods to support the informal caregivers they employ. Some options include allowing for flexing of schedules for employees who provide care and arranging for support groups. It is also critically important that informal caregivers receive support in their communities, from increased respite options to more flexible work policies to compensation for their informal caregiver services. Preliminary strategies identified by HHSC and other state agencies to address this priority include efforts to expand local informal caregiver support and promoting awareness of informal caregiver challenges through education and training resources.
We hope this information is helpful to you in the important work you do as a family caregiver.
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