Looking Back to Look Ahead: A Comparison of the 2015 and 2020 Caregiving in the US Reports

Background

We looked at the new report, Caregiving in the US 2020, from The National Alliance for Caregiving (NAC) and the American Association for Retired Persons (AARP) to see how caregiving situations, needs, and experiences have changed since the last report in 2015.

Caregivers need training and information, but often do not receive it from healthcare providers

The 2020 report identifies a vast need for information and training for caregivers. The majority of caregivers, especially those who devote more hours, live with the care recipient (CR), and provide specialized care reported wanting more information on at least one topic of caregiving, such as keeping a CR safe at home and managing physical/emotional stress. Despite this need, the 2020 report found that fewer caregivers are having conversations with a healthcare provider (HCP, Fig 1). As such, caregivers are reaching out to other sources for information, such as friends or family, government agencies, online or social media, and organizations or nonprofits.

FIG 1. Prevalence of caregivers who have had conversations with healthcare providers around care recipient and caregiver needs.

Caregivers are utilizing more online and technological resources

The use of technology and online solutions is a crucial aspect of the 2020 report, as this topic was not explored at all in 2015. The proportion of caregivers using technological and online solutions for various purposes is outlined in Fig 2. Higher-hour caregivers, primary caregivers, those with financial strain, and those caring for individuals with emotional or mental health issues use online resources more often. Younger caregivers are more comfortable with online tasks, particularly learning from online educational videos. With increasing reliance on the internet for many everyday tasks, more and more caregivers will lean on technological and online solutions for their caregiving concerns. Online platforms that provide information, training, self-care resources, and other supports have an important role to play in meeting this demand.

FIG 2. Prevalence of caregivers using technology to manage different caregiving activities.

Caregiver well-being is worsening 

Self-rated well-being of caregivers has declined in the past 5 years, with concerning reports in physical health and strain, emotional stress, and mental health. Fewer caregivers rate their health as very good or excellent, and more rate it as poor or fair (Fig 3). Those in intense care situations, primary caregivers, and those with no additional help experienced the greatest decline. The 2020 report also identified that 1 in 5 caregivers feel alone, and a similar proportion face physical strain, while 2 in 5 report emotional strain. Although these numbers have remained steady since 2015, the proportion of caregivers under strain is alarming nonetheless. As caregiving responsibilities often leave little time for much else, these caregivers would benefit greatly from resources that educate about balancing caregiving duties with self-care and wellness activities, as well as resources that provide temporary relief.

FIG 3. Caregivers’ self-assessment of their own health.

Caregivers are providing more specialized care, with increasing concerns related to Alzheimer’s and dementia 

Caregivers today report more complex and specialized health and functional needs of CRs. There are now more CRs with long-term physical conditions and co-morbidities (1.7 from 1.5 conditions), memory problems, and emotional or mental health problems. Of note is the increased number of individuals with Alzheimer’s or dementia as their main concern (8% to 11%), as well as one of the concerns (22% to 26%). The upward trend in these categories can be seen in Fig 4. More than ever before, these numbers reflect the dire need for caregivers of adults above the age of 50 to be knowledgeable and skilled in managing memory problems, behavioral issues, and emotional and mental health needs.

FIG 4: Increase in the prevalence of conditions requiring specialized care in individuals above the age of 65.

Caregivers to those with memory, emotional, and mental health problems are finding it harder to provide care

The nature and frequency of assisting CRs with activities of daily living (ADLs) have largely remained unchanged in the last 5 years. In fact, less caregivers overall report finding it difficult (21% from 23%).

FIG 5. Prevalence of caregivers experiencing difficulty in helping with activities of daily living.

However, some subgroups report higher difficulty, namely the higher-hour caregivers and those providing care to someone with memory, emotional, or mental health issues are more likely to report that caregiving has made their health worse. The burden of assisting with a higher number of ADLs/Instrumental ADLs as well as performing medical/nursing duties may be the cause of higher physical and emotional strain in this group. Because they manage a significantly greater volume of tasks, these caregivers would benefit from information and strategies for managing these tasks more easily.

Conclusion

Caregiving in the U.S. 2020 draws special attention to the need for resources that assist caregivers by providing training for caregiving duties and educating about condition-specific challenges. It highlights caregiver well-being needs, especially of those higher-hours caregivers in complex care situations without adequate support who are experiencing more stress and declining health. Finally, the report underscores the trend of increased reliance on technological and online solutions for caregiving. Despite this topic being absent from the 2015 report, online resources are already working hard to meet the gaps existent in caregiver training, information, and wellbeing, and it is becoming increasingly clear that this modality is here to stay.

Citations

AARP and National Alliance for Caregiving (2020). Caregiving in the United States 2020. Washington, DC: AARP. https://doi.org/10.26419/ppi.00103.001

AARP and National Alliance for Caregiving (2015). Caregiving in the United States 2015. Washington, DC: AARP. Retrieved from: https://www.aarp.org/ppi/info-2015/caregiving-in-the-united-states-2015/?cmp=CRGVNUSA_MAY21_015&migration=rdrct