Senate (Special Committee on) Aging Committee Hearing
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"Sandwich Generation Squeeze: Confronting the Middle Class Struggle to Raise Kids, Care for Aging Parents, and Scrape Together Enough for Retirement in Today's Economy."
Senator Casey: thank you for the work you do on behalf of seniors and their caregivers, both in
In
Family caregivers are the backbone of the long-term care system, providing millions of hours of care every year for no compensation and frequently at great cost to their own emotional health. They're burned out and exhausted from juggling work, family responsibilities, and care giving. In addition, many caregivers have to reduce their work hours or quit their jobs to care for a loved one. Additionally, American businesses lose
At the same time, and for a variety of reasons, the overall availability of "informal" caregivers (especially those in the sandwich generation) is decreasing. The factors behind this trend include: (1) the entry of more women into the workforce (increasing the number of other obligations they face); (2) decreased birthrates (resulting in fewer children to provide care); and (3) the geographic dispersion of families (stemming from job migration and increased divorce and marriage rates).
AgingCare.com explains some of the particular issues faced by ""sandwiched" caregivers as illustrated by Mary and her daughter: Mary, a 74-year old
As you know, the journey of care giving is long and arduous, often spanning a decade or longer. The journey covers the "territory" of occasional sporadic care (appointments to physicians, light errands, checking in and monitoring), progresses to care in the instrumental activities of daily living (cooking, cleaning, shopping, managing finances and household tasks, coordinating care, monitoring symptoms and meds, and providing emotional support), and expands to care in the highly personal activities of daily living (bathing, dressing, toileting, monitoring behavior and location, dealing with insurance issues, providing acute care and managing symptoms). As the burden of heavy-duty caregiving increases on this journey, additional issues of long-term care placement (advance care planning, personal care, emotional support) are confronted, and may or may not end in death (depending upon the duration and complexity of grief). Becoming a heavy-duty caregiver is associated with increased depression, poor health, poor self-care, loss of weight, and increased chronic illness. Over time, heavy-duty caregivers decline more rapidly than non-caregivers. Care giving is a risk factor for mortality.
We understand the problem, but what can we do about it?
Recommendation: disseminate information about the 10 characteristics of caregivers (especially in the sandwich generation) at highest risk. They (1) provide high levels of care, (2) have lower income (<
Recommendation: incentivize clinicians and health care agencies to tailor interventions to the journey of caregiving, intervening early if possible to prevent the adverse health effects of caregiving: (1) address safety issues with home assessments and alterations, patient monitoring devices, and removing access to guns; (2) address self-care and preventive health behaviors via "health passports", education, monitoring, and facilitating access; (3) provide informational, instrumental, and emotional support through assistance in navigating to needed resources and to support groups; (4) help with depression and distress by facilitating relaxation/pleasant events training/respite, assistance with care coordination, counseling, treatment for prolonged grief, and coaching to resume previous and new roles.
Since, informal caregivers have a profound effect on long-term care processes and outcomes, what policies will support the engagement of families in patient care to improve outcomes, especially in dementia, and to postpone institutionalization?
Recommendation: "Federal agencies (including the
Recommendation: "Public, private, and community organizations should provide funding and ensure that adequate training opportunities are available in the community for informal caregivers." (Recommendation 6-2, "Retooling for an Aging America")
These initiatives may be modeled after those provided by the
Some states, including
More general flexibility in HCBS waivers as we move toward managed long-term care and the integration of
In summary, these policy recommendations recognize that family members and other unpaid caregivers provide the backbone for much of the care that is received by older adults in the US. And, although informal caregivers are vital members of the healthcare team, little has been done to impart the necessary knowledge or skills to these team members. The type of education and training needed is not currently reimbursable under most insurance plans, including
Read this original document at: http://www.aging.senate.gov/download/?id=77c1a9bf-7499-4aed-ae4b-b5e2ab36457d&download=1
Copyright: | (c) 2010 Federal Information & News Dispatch, Inc. |
Wordcount: | 1460 |
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