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CEO Blog: Care Partners

By Orion Bell   |       |   11/21/2019

Benjamin Rose Institute on Aging held its annual Caregiving Conference earlier this month. This year’s theme was Supporting Families Impacted by Dementia. We had a full house in the conference center: caregivers, service providers, researchers and health care professionals coming together to discuss the importance of informal caregivers, the challenges many of them face in meeting the needs of their loved ones, and strategies on how to better support them.

Our keynote speakers for the conference were The Very Reverend Tracey Lind and Emily Ingalls, her care partner. They shared the story of Tracey’s dementia diagnosis and the paths their lives have taken as they learned to live with the disease. Tracey and Emily’s story is one of hope and empowerment, as they share their lives’ journey to raise awareness of living with dementia. During Emily’s remarks she made a comment about her role as a care partner in the relationship. “I am not her caregiver; we are each other’s care partner.” Emily reminded us that the relationship of care partners involves both the giver and the recipient of care.

Family caregivers have been part of the conversation at Benjamin Rose Institute on Aging since the very beginning. Benjamin Rose, in establishing the institute that bears his name, intended to provide relief and assistance to older adults who may rely on “charity or family” in order to live with dignity. Caregivers have been a focus of BRIA research for fifty years. When we speak of family caregivers at BRIA, we refer to those uncompensated care providers, the loved ones, relatives and friends that provide support and care. An estimated 43.5 million Americans provide informal care for a loved one. The value of that care is estimated at nearly half a trillion dollars. This informal support is critical to a successful plan for long-term care, but it is often ignored or undervalued.

Dr. Carol Whitlatch and other researchers at Benjamin Rose have developed an evidence-based model to support caregivers who care for a loved one with dementia: SHARE for dementia. SHARE is based on more than two decades of research in caregiving. It builds upon the concept of care partners and provides a means for the care giver and the care recipient to have conversations about their needs and wants, and for both to participate in developing a plan of care. SHARE helps develop the dyad, the relationship, between care giver and recipient. Through this process they are better able to discuss their needs and concerns, explore options and become true care partners.

SHARE helps increase communication, develop better care plans and improve satisfaction for both care provider and recipient alike. It also demonstrates the value and importance of including the person with dementia in the conversations about his or her care. It is the right thing to do, because it works.

Read more about the statistics on caregiving: https://www.caregiver.org/caregiver-statistics-demographics

Learn more about SHARE: https://www.benrose.org/-/share