Coming Out of the Closet with Caregiving

They invited 10 authors who have written about the challenges of family caregiving to participate in an AARP Solutions Forum on the issue. Here are some of the highlights.
In many respects the conclusions are not much different than the National Alzheimer‰Ûªs plan. It calls for:
  • Greater public education and awareness
  • More financial relief
  • Better communication, coordination, and collaboration with health care professionals
  • Heightened recognition of and support for family caregivers in policy initiatives
Ten areas of focus were put forth:
  1. Caregiving Is a Role and a Relationship – Caregiving is based on a relationship, but caregiving is an additional role that requires preparation, acceptance, support, and resources.
  2. Families Benefit from Discussing Preferences and Decision Making with Each Other and with Health Care Professionals.
  3. Long-Term Services and Supports Are Expensive.
  4. Communication, Coordination, and Collaboration Are Fundamental to Good Care.
  5. The Most Vulnerable and Traumatic Points in Health Care and LTSS Are Transitions from One Setting to Another.
  6. Some Help and Support to Care for the Caregiver Is Available if It Can Be Found.
  7. Being ‰ÛÏProactive‰Û Is the Key.
  8. Public Policy Solutions Are Crucial.
  9. Advocacy, at Both the Individual and System Levels, Is a Fundamental Part of Caregiving in Today‰Ûªs World.
  10. Culture Change Is Needed – Caregiving is now a normal part of life, yet family caregivers remain invisible, isolated, coping stoically, getting random advice. Caregiving families need public acknowledgment, family-friendly workplace environments, and affordable services and supports to assist them in their caregiving role and to help them maintain their own health and well-being.
In addition, lengthy discussions produced these observations, which I share randomly:
  • Family caregivers are thrust into this role without preparation, training, or support.
  • Older people are marginalized by society. Family caregivers must understand and speak their loved one‰Ûªs language once a person suffering from dementia looses the ability to use words.
  • It is critical for caregivers to take breaks and get out of the house.
  • Caregivers should focus on maximizing what their loved one can do‰ÛÓ but accept what the person can no longer do.
  • People need to anticipate that they will become caregivers; educate themselves that there will be physical, emotional, family, and financial issues; and talk to others.
  • An isolated army of caregivers‰ÛÓeach operating as a force of one with little social infrastructure and cultural support needs to coalesce in a caregiver social movement similar to what occurred with the feminist and gay rights movements.
  • Look for a doctor or nurse who can serve as your health care ‰ÛÏquarterback.‰Û
  • Engage communities and faith-based institutions as a way of supporting caregivers.
  • Improve transitions from one setting to another, and train all health professionals to communicate better with the individual and family.
  • Incentivize health care workers to include family caregivers as partners in care.
  • Educate Americans about what Medicare does‰ÛÓand does not‰ÛÓcover.
  • Promote ways that people can talk to each other and share their stories.
  • Urge a national discussion about how Americans approach advance care planning.
  • Have the option of putting pretax dollars into flexible spending accounts to help pay out-of-pocket costs for eldercare expenses irrespective of whether or not the older adult is a legal dependent of the caregiver.
  • Encourage primary care clinicians and other health care professionals to routinely ask every Medicare beneficiary if he or she is a family caregiver.
  • Pursue the adoption of electronic health records that include a line designating the primary family caregiver.
  • Educate health care professionals and family caregivers about caregivers‰Ûª rights to receive health care information about their loved one when they are directly involved with the individual‰Ûªs care.
  • Create a national council of family caregivers and advocates, including celebrities, to heighten attention to family caregiving issues, to protect the well-being and vital interests of families, and to identify potential solutions to meet the growing needs.
If you scour this blog and my other blog, you will find hundreds of posts on caregiving covering many of these issues. My platform of ‰ÛÏEducated Aging‰Û is meant to help not just caregivers and those for whom they care. It is about helping all of us prepare for aging so that it does not always become a crisis situation. Physical aging, emotional aging, financial aging ‰ÛÒ these are all issues that will affect quality of life as we age.
I encourage more discussion around this. In fact your input is vital to a survey I am conducting in anticipation of developing a smart phone application for caregivers. We initiated this survey last year but frankly have not acted on the development of the app. These insights from the AARP discussion really help to hone in on what might be important in an app. But you the end user are best to share that. Can you help? Click here to take survey.