Caring for the caregiver

Posted by Reeve Staff in Daily Dose on November 06, 2019 # Caregiving

By guest writer Deborah Allen

No longer are the shortages of direct care staff and others in long term care a subject of the future. The crisis is looming and is serious. The number of Americans 65 and older is projected to grow to 98 million by 2060, more than double the number than in 2016. According to the Population Reference Bureau, between 2020 – 2030, the number of older adults in America will grow by 18 million as the youngest baby boomers hit 65.

The baby boomers that are now asking ourselves, “Who will take care of me?” While families have and will be forced to take on the caregiving tasks for their loved ones. Whether it be an aging parent taking care of their child or grandchild, it simply is not the answer or reality for many Americans. Boomers and GenXers (like myself) are working, families are not geographically close enough to take on the role of primary caregivers, the numbers of widows and widowers are growing. According to Government statisticians, home care is one of the nation’s fastest-growing occupations, with an additional million workers needed by 2026. That is an increase of 50% from 2014.

So what are the solutions? There are not any easy ones, but perhaps looking at what we can do locally to turn the tide is going to result in positive outcomes. We see PennCares (a nonprofit agency in Hanover, PA) taking Dementia Live simulation training to nursing schools, high school students, and even out into communities who are embracing Dementia Friendly initiatives. Raising awareness of the growing elderly population and their needs is huge. Intergeneration programs among schools and churches and the elderly are setting an early example with children that respecting and taking care of our older adults is our duty.

Building awareness is a grass-roots and home-grown effort. Creating awareness means taking creative efforts to work with others that include public entities, community-based organizations, political leaders, and the private sector. Let’s elevate the professional standards for those who choose careers in aging.

Now, on the flip side of matters. There are over 44 million caregivers in the U.S. The role of caregiver impacts every aspect of family life. It creates emotional, financial, time, and workplace productivity challenges. Many of these challenges are unavoidable whether someone is a new or experienced caregiver, a sister taking care of a brother, a child taking care of a parent, or an aging parent taking care of a grandchild. Resources are available to provide support and guidance every step of the way. The Family Caregiver Council has taken the initiative to identify issues that demand attention and support. It has also developed concepts, tools, and services addressing the needs of family caregivers. The Council consists of national caregiving organization leaders, innovative companies in active aging, and aging experts. It aims to help family caregivers self-identify. Most see themselves as daughters, wives, sons, friends, and neighbors, not necessarily as caregivers. Their website contains issues and provides vetted resources in six key areas of caregiving: technology, transportation, hiring help, housing, financial issues, and the caregiver. Another good resource is the Family Caregiver Alliance (FCA), which has supported and sustained the important work of families and friends nationwide who care for adult loved ones with chronic, disabling health conditions. ( They have been in operation for over 40 years, and their work intersects three key areas: caregiver services, policy, and research. But across all agency programs, the services and products developed and delivered are based on real needs of real caregivers — those families we hear from and work with every day.

Significant life changes occur when a grandparent or relative assumes care of a child. It can be challenging emotionally, legally, and financially. Children may also experience emotional or behavioral issues and require additional support. Connecting with related caregivers of children in similar situations often offers support.

Contact your local Area Agency on Aging (AAA) to find out if any support groups for grandparents or relatives raising children are available in your area. Some additional resources are provided below.

  • Your particular state issues birth certificates. A birth certificate costs approximately $20 and can be obtained online, through the mail, or at your state’s Department of Health locations.
  • The Social Security website provides information about obtaining Social Security cards. You will need the child’s birth certificate and additional documentation, such as school or daycare records. Any child age 12 and older must appear in person to apply for a Social Security card
  • Your state’s Department of Human Services website provides information about Temporary Assistance for Needy Families (TANF) Benefits. You can also contact your local county assistance office. You may be eligible for cash assistance, the Supplemental Nutrition Assistance Program (SNAP), help with childcare, health care coverage for your grandchildren, home heating assistance (LIHEAP), school meals, and more.
  • The Educational Law Center ensures equal access to education for all children and has free services and publications which may help resolve issues, including School Enrollment Guide for a child living with someone other than their parent. The Educational Law Center can also be contacted at 215-238-6970.
  • Head Start is a program for eligible low-income children, age birth through five years. Head Start provides children with a developmentally appropriate early childhood education, ensures that young children get health checkups and treatment, oral health screenings, and ensures that children are fed a nutritious, hot meal every day.
  • The Boys and Girls Clubs of America offer recreation in addition to multiple other programs that help children and youth build character and leadership, ensure graduation from high school and prepare for college, and develop life skills. They also offer resources for parents and caregivers, from homework tips to bullying information.
  • Big Brothers Big Sisters of America offers a one-to-one supportive relationship, pairing an adult with a child or youth. Big Brother Big Sister relationships positively impact relationships, lifestyles, and schoolwork.

Deborah Allen received her BS in Rehab Services from East Stroudsburg University, her MSW from Temple University and is a Certified Dementia Practitioner. She currently works for PennCares in Hanover, PA, as their Executive Director. PennCares is a community-based organization that provides children’s early intervention services, employment services (PennWorks), in-home care services for individuals who are elderly and people with physical and intellectual disabilities, as well as educational trainings. Deborah ensures that PennCares addresses the full continuum of care with dedication, skill, and a commitment to quality support, individual empowerment, and promoting independence. She has over 18 years’ experience in the development and administration of human services and rehabilitative support programs and has been conducting various educational trainings for over 15 years. She is a Certified Master Trainer for AGE u Cate Training Institute and conducts Compassionate Touch and Dementia Live trainings monthly to audiences of caregivers, professionals, AAA’s, and family members. Previously she was PA Behavioral Health & Aging Coalition’s Executive Director. She has worked in the aging field for over 16 years. She resides in rural Perry County in PA and enjoys boating, playing softball, and traveling. She can be reached at [email protected]

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.