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Honoring and Supporting Family Caregivers
November is National Family Caregiver Support Month. We are grateful to Seattle Mayor Bruce Harrell and members of the Seattle City Council for proclaiming November 2023 as Family Caregiver Month in Seattle. Click on the image below to open the document.
You’ll find a lot of information about caregiving and caregiver support, including support for dementia caregivers, in this month’s issue of AgeWise King County. If you are not a caregiver at this time but you know someone who is, please forward a link to this issue so they can access resources.
Click on the image above to open the PDF flyer.
On Saturday, November 4, caregivers can attend the 2023 Legacy of Love African American Caregivers Forum coordinated by Aging and Disability Services staff. It’s a wonderful regional event, free of charge, open to all, and full of information about services and resources. It’s also full of stories about the various twists and turns that a caregiver’s life can take that can help you know that you are not alone.
Recently, caregiver support specialists on staff at Aging and Disability Services provided their thoughts on advocacy. I appreciate their input immensely.
“We often speak of the ‘journey’ that family caregivers experience. Often their journey begins in the medical provider’s office. So, it’s essential that providers are armed with information about the support available to caregivers at that moment—NOT when they reach a crisis situation or are in a state of burnout. If we reach family caregivers early, it is likely that they can continue to care for their loved one longer.”
“Medical providers and social workers need to be better educated about available supports for family caregivers. I see situations where couples/individuals have been leading a relatively stable life, physical and cognitive health wise, and then there is a life-altering diagnosis or occurrence (e.g., dementia, a stroke, a Parkinson’s diagnosis). A greater effort should be made to reach out to the established industry groups such as the American Medical Association, Washington State Medical Providers, and others. Widespread distribution of the Family Caregiver Support Program pamphlet in medical settings could occur, or even the PDF of our pamphlet.”
“Being a family caregiver causes serious disruption in a person’s work history. I am thinking of working-age caregivers (often daughters and granddaughters) who have to leave the workforce and wind up getting a smaller Social Security benefit later in life, based on the established way the Social Security Administration calculates their monthly benefit. This is also true for women who leave the workforce to care for children and then re-enter the workforce. I think it’s important to advocate for unpaid family caregivers as it relates to their Social Security payments—that they not be penalized because of the period in which they served as an unpaid family caregiver. We need that advocacy at the federal level.”
“It would be helpful if systematic outreach existed to encourage and assist eligible retired veterans to apply for VA medical benefits. One-on-one assistance navigating the application process would be very helpful. It can be a daunting task for an already overwhelmed caregiver. My dad didn’t apply for VA medical benefits until he was in his early 80’s, when my sister and I helped him do it. Once he was in the system, he received a wealth of benefits—hearing aids, a motorized wheelchair, physical therapist, occupational therapist, pacemaker monitoring, and more. And our family was extremely grateful for the care and benefits he was provided.”
Click on the image above to open and download the Dementia Action Collaborative’s Dementia Road Map—A Guide for Family and Care Partners.
“Continue to support and fund the Washington State Dementia Action Collaborative. Their booklet is an outstanding and invaluable tool for family caregivers as it describes and provides information and education regarding the stages of dementia. The resource pages and action steps summary at the end of this booklet are extremely impressive and precisely what a family caregiver needs. This effort has fully embraced and recognizes that those caring for someone with dementia face day-to-day challenges, questions, concerns, and require specific information and education to feel fully supported in their role. The benefits and impact of this effort have been felt statewide—improved quality of life for family caregivers and their care receivers, forever impacted by a diagnosis of dementia.”
“The pandemic really made it even more apparent to me the benefits of Adult Day Health programs and the huge gap and need that subsequently played out in the lives of family caregivers when they closed. I always tell caregivers that Adult Day Health is a win-win—you get a substantial break in caring for your loved one and they benefit from socialization and engagement in structured activities. Plus, there is monitoring and oversight by caring Adult Day Health staff. Not to mention the cost effectiveness! The cost of one day of Adult Day Health is about the same as two hours of in-home care respite care. Unfortunately, at least in King County, such programs are not back to full strength. For too many of my clients, having their care receiver travel to these programs is not feasible. Again, this is a huge gap on so many levels! There must be a robust availability of Adult Day Health programs, the benefits of such programs are long established and vital to the well-being of caregivers and care receivers.”
“One topic that seems to fly under the radar, despite its significance in the lives of family caregivers, is incontinence. We need to destigmatize and frame incontinence as a reality in the lives of family caregivers. The purchase of incontinence underwear, bed pads, wipes, gloves, etc. is a significant financial burden for many unpaid family caregivers. We need to develop some kind of statewide workgroup to connect with, work with nonprofits, senior centers, and community centers to develop a discreet “supply bank,” similar to what is done for people with babies and toddlers and their needs in this area. This is an important and pervasive care supply need for unpaid family caregivers.”
“There needs to be continued advocacy for higher pay and better benefits for agency caregivers. There are systemic reasons for the detrimental and challenging agency caregiver shortage that is being experienced, and there are work groups that have been formed to address this. And, of course, we continue to advocate for the Family Caregiver Support Program funding, and all of the benefits it provides to a family caregiver.”
Many thanks to long-time family caregiver specialists Kristine Broome and Carole Bourree for their dedication to their profession and their clientele.
To access caregiver support services in Seattle-King County, contact Community Living Connections (call toll-free 844-348-5464 or visit CommunityLivingConnections.org/caregivers/). Your call and consultation will be professional, confidential, and free of charge, as this is a service that Aging and Disability Services coordinates and funds.
Contributor Joe Hailey chairs the Seattle-King County Advisory Council on Aging & Disability Services. He welcomes input from readers via e-mail (advisorychair@agewisekingcounty.org).
Photo at top by Kampus Production.
This article appeared in the November 2023 issue of AgeWise King County.