As former first lady Rosalynn Carter once put it, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
With an aging population, all of those categories are growing. According to a 2020 report from AARP and the National Alliance for Caregiving, nearly one-fifth of Americans are caring for an adult with health needs or functional difficulties. In comparison with data from a similar report from 2015, more Americans are caring for more than one person, more family caregivers have difficulty coordinating care, more Americans are caring for someone with Alzheimer’s disease or dementia, and more Americans say caregiving has made their own health worse.
What’s more, the capacity of the professional care system is continually getting stretched thinner. The Kaiser Family Foundation reports that a shortage of home health aides is leaving some older adults without the care they need. Institutional settings such as nursing homes are facing the same problem with finding enough staff. This means even more caregiving will fall to what are referred to as “informal caregivers,” mostly family members.
This pressing but often under-the-radar issue of caregiving for an aging population is the focal point for news coverage by the New York & Michigan Solutions Journalism Collaborative, a group of more than two dozen news, academic and community organizations that pool their time, talent and resources to cover the topic with a solutions lens. The NYMI SoJo Collaborative was established in 2021 with the assistance of the Solutions Journalism Network and became affiliated with the Local Media Foundation in January 2022. Major funding for the collaborative’s work comes from The Ralph C. Wilson, Jr. Foundation, Health Foundation for Western & Central New York, and the Greater Rochester Health Foundation.
In the roughly year and a half of its existence, NYMI SoJo has produced approximately 50 news stories on the topic of caregiving. It also has experimented with innovative ways to engage with caregivers and meet their information needs, such as setting up a What’s App-based service to connect Spanish-speaking caregivers around Detroit.
Another experimental information tool from NYMI SoJo is a Caregiving Resource Guide. This is a set of online resources to help current and prospective caregivers of older adults find information and resources they need to provide the best possible care for loved ones, and for themselves. It refers users to more than 100 sources of online information, mostly away from the site, with links to offerings from government and nonprofit agencies with expertise about caregiving and older adults.
The need for such a resource became apparent when we reviewed material collected for another one of the collaborative’s projects: an in-depth collection of data (such as statistics and reports from government and non-government agencies) meant to help the collaborative’s news partners report on caregiving topics. Among the insights gained from reviewing information assembled in the data center were the following:
- Taking on the task of caring for an older adult who is no longer fully independent changes the caregiver’s life dramatically. Impacts of caregiving on family members who take on that responsibility are significant, especially in psychological impacts (time, stress) and financial costs. This in turn creates a need for various kinds of support and assistance.
- Aging-at-home when possible is far preferred by most aging adults, but can create new demands on caregivers (especially family).
- Uncertainty about what to do, as well as concerns over whether they are doing things correctly, are also sources of stress for family caregivers. It also can be challenging and stressful to interface with the formal medical system
- Resources are out there, however, especially online. Key resource providers are government sources (e.g. the federal Administration for Community Living); nonprofit organizations (e.g. AARP, Family Caregiver Alliance); and some commercial ones (e.g., A Place for Mom). Training and support/empowerment programs for paid caregivers and support for family caregivers can make a difference in both the quality of care and the quality of life for the caregiver.
- Activities that provide social and emotional support, and ones that meet information needs, are especially productive in this regard. Some academic articles collected for the data center describe in detail exactly how a particular innovation or intervention can accomplish this.
Put all of these needs together, and the justification for an all-in-one-place package of resources that address caregivers’ informational needs becomes clear. The collaborative’s reporting and research offers evidence that having information about topics such as agencies and programs that can provide support goes a long way toward easing these caregivers’ burdens if they are aware of their options.
That is why the resource guide includes, for example, information about how to find caregiver support groups, respite and adult day care programs, legal help, and other services for older adults and caregivers. Separate sets of resources discuss issues around home care, assisted living and skilled nursing care – including ideas for finding providers of each care format. Another set of resources has guidance for those with the especially challenging task of caring for a loved one with dementia. A separate page has information for those new to the task of caregiving, and another section of the guide is devoted to Spanish language resources.
NYMI SoJo’s community engagement efforts also played a role in development of the Resource Guide. When a draft was shown to the collaborative’s Caregiver Advisory Council, the council members had many insightful comments about the content and organization of the online site – especially organization. Those comments led to a streamlined, and much improved, final version that was rolled out to the public. This experience shows the value of journalists listening to and taking guidance from those who need and benefit from their coverage.
The New York & Michigan Solutions Journalism Collaborative has a special mission to serve the Buffalo, New York; Rochester, New York; and Detroit, Michigan areas, therefore many of the links and resources are to organizations in those areas. But others come from such nationally known and well-respected organizations as:
- AARP, whose Family Caregiving Guides collection has downloadable PDF booklets, including ones in Spanish and Chinese. These are part of a general set of family caregiving resources offered by AARP.
- Family Caregiver Alliance, which provides links to more than 500 entries that can be sorted and filtered by topic, resource type, and other criteria. It also has some resources available in languages other than English, including Spanish, Chinese, Korean, Vietnamese, and Tagalog.
- United Hospital Fund’s Next Step in Care program, with three dozen downloadable PDF guides on various topics, also available in multiple languages.
- The federal Medicare program, which offers ZIP code-based searches for various types of health providers for older adults, including doctors, hospitals, nursing homes, home health services, hospice, rehab facilities, and others.
Overall, this adds up to a rich body of information to assist people who find themselves in caregiver roles. Research has documented that a need for reliable information about what to do as a caregiver, plus tools for finding assistance for the cared-for person, are two of the main support needs caregivers face. The New York & Michigan Solutions Journalism Collaborative intends for this resource guide to provide that support and meet those needs.