Caring for caregivers

  • Published in MyView

By Bobbi Rood

November is National Family Caregivers Month, when we recognize the challenges family caregivers face when loved ones need caregiving long term and often around the clock. Family caregivers are the backbone of our nation’s long-term care system, helping thousands of older Vermonters and Vermonters with disabilities to remain living at home where they want to be.

Currently, about 12,000 Vermonters have Alzheimer’s disease or a related dementia, and approximately 30,000 Vermonters provide unpaid caregiving to family members with dementia. By 2030 nearly 25 percent of Vermont’s population will be over age 65 and the number of those living with dementia will rise to over 17,000. Research shows that family caregivers are more likely to experience emotional distress, depression, anxiety or social isolation; some also report poor physical health, often determined by both the intensity and duration of caregiving.

As a member of the Governor’s Commission on Alzheimer’s Disease and Related Disorders (ADRD), I am tasked with helping the administration and Legislature better understand the broad challenges that come with Alzheimer’s and dementia and provide recommendations to better serve this population. As a commission, we recognize that an important first step is to hear directly from caregivers themselves. We worked with Dr. Kelly Melekis, a geriatrics researcher and professor at Skidmore College, to conduct a statewide survey of ADRD family caregivers. The survey results, released this summer in the report, “Caring For ADRD Caregivers in Vermont,” highlight the many challenges family caregivers face in providing care as well as their own suggestions for improving services and supports to better meet their needs.

Top concerns shared by caregivers include preparing for their loved ones’ needs, balancing work and caregiving responsibilities, and paying for long-term care. Key challenges include dealing with behaviors related to ADRD, time and responsibility of caregiving, feelings of isolation and grief/loss. Recommendations include providing more affordable care, increasing respite (which includes increasing availability of well-trained paid caregivers, access to transportation, etc.), and streamlining access to information and assistance for family caregivers. One caregiver’s response put it well: “There isn’t any one thing – what’s needed is a whole community of support.”

As an eldercare clinician, I know how critical it is to have solid information and support when caregiving. While the state has a dedicated network of organizations making a difference for people living with Alzheimer’s and dementia, there is still so much more that we can and must do going forward, including providing the financial resources to meet the growing need for respite and building up a robust, capable caregiving workforce. This report reaffirms that we cannot ignore these issues. We must take action now.

To find out more about family caregiver support in your region, call the Vermont Senior Helpline at 1-800-642-5119. For specific questions or support around Alzheimer's and dementia, call the Alzheimer's Association Helpline at 1-800-272-3900.

Bobbi Rood lives in Warren.