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Invisible Caregivers: New Report Sheds Light on Family Needs

In the United States today, there are approximately 40 million family members who provide care for disabled or elderly adult loved ones.If you have ever been a family caregiver, you know about both the burden and the rewards of caregiving. Two organizations, the AARP Public Policy Institute and the National Alliance for Caregiving, are casting a brighter light on the nature of caregiving in the U.S. today.

Two recently issued reports paint a profile of family caregivers and address the financial, emotional, and physical burdens with which they often struggle. The AARP published Valuing the Invaluable, which follows up on the groundwork laid in another report, Caregiving in the U.S., that was completed jointly with the National Alliance for Caregiving.

One striking finding: only one in three caregivers stated that a nurse, doctor, or social worker had ever asked for their advice regarding care for a loved one. From the standpoint of continuity of care, family caregivers are insufficiently involved in discharge planning, nor do they serve as “equal” members of the care management team. As the critical role family caregivers play receives greater acknowledgement, it is likely that they will be better integrated into care planning.

Another startling revelation: only one in six family caregivers reported that a medical provider ever questioned them about their own needs for assistance. Leaving aside the real burdens placed upon family members, the loss of their sustained caregiving places greater burdens on already understaffed system and raises long-term healthcare costs. The AARP found that the replacement cost of family caregivers with paid care is approximately $470 billion per year!

Progress is noted, however, in acknowledging caregiver roles and needs, at both state and federal levels:

  • A total of 13 states have now enacted the Caregiver Advise, Record, Enable (CARE) Act, requiring hospitals to better involve family caregivers at both admission and discharge.

  • A formal assessment of family caregivers for long-term care Medicaid recipients has now been implemented in 15 states.

  • The bipartisan Assisting Caregivers Today (ACT) Congressional Caucus was established this past March and plans to bring more attention to family caregiving and to educate Congress on caregiving issues.

  • The federal Commission on Long-Term Care was created two years ago and called for a better system to support both long-term care recipients and their family members. It called for family caregiving to be viewed as a public issue and asked that national policies be developed to support family caregivers, as well as a broad national strategy for caregiver support.

It is encouraging to see the increasing recognition that long-term care must include a partnership among medical providers, care recipients, and both professional and family caregivers.

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