RESPITE CARE - CHALLENGES and SOLUTIONS

An important and frequently overlooked part of the caregiving process is taking care of the caretaker.  Families, not social service agencies, nursing homes, or government programs, are the mainstay underpinning long-term care for older persons in the United States. More than 22.4 million persons are informal caregivers–providing unpaid help to older persons who live in the community and have at least one limitation on their activities of daily living.  These caregivers include spouses, adult children, and other relatives and friends.

Respite care gives caregivers a much needed break. The dictionary defines “respite” as “a delay or cessation for a time, especially of anything distressing or trying, an interval of relief.” The term “respite care,” however—within a professional acceptance—is a multi-agency response to the needs of such caregivers and typically refers to a range of interventions from sitting services, day-care services, to short-term residential and in-patient care.

Respite offers the caregiver time away from the stresses and strains of providing care and managing work, their household, and family life. Most caregivers are employed, and nearly one in five provides more than 40 hours of care per week. Respite care also allows the care recipient a break from the caregiver and exposes them to different people with varied skills.

Depending on the need and situation, respite care services can include adult day care and homecare services as well as overnight stays in a facility. They may be provided for a few hours, days, overnight, a week, or weekend.  

The Commonwealth of Virginia stands to benefit from enhanced availability and utilization of respite resources for the following five reasons:

1.   1. Respite care resources allow caregivers to continue within the taxable workforce, which increases the tax base and in turn helps pay for increased respite program investment.

Caregiving has a substantial impact on business. Absenteeism, replacing employees who quit in order to provide care and other caregiving-related activities can have serious financial consequences to employers.

Most caregivers are employed.  Based on a 2003 AARP study, among baby boomer caregivers (aged 50-64 years old), an estimated 60% are working full or part-time.  Using data from the 1998 National Survey of Families and Households (NSFH), working caregivers often suffer many work-related difficulties due to their dual caregiving roles. Among working caregivers caring for a family or friend aged 65+, two-thirds report having to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities.  Difficulties due to work and caregiving are even higher among those caring for someone with dementia.

A 1997 MetLife Mature Market Institute study reported U.S. businesses were experiencing a combined loss of $11.4 billion per year due to lost productivity created by employees providing care for their aging parents and relatives.  Ten years later—based on a study commissioned by the Alzheimer’s Association (www.alz.org)-- staggering costs of $36.7 billion are solely related to caregivers of individuals with Alzheimer’s, including lost productivity, absenteeism and worker replacement. 

By supplying the much needed respite care umbrella of options and services, caregivers may remain within the workforce pool for a longer period of time, and continue to increase the tax base.

2.  Increasing investment in respite care can create jobs, and can therefore benefit local economies.

According to estimates developed by HHS's Office of the Assistant Secretary for Planning and Evaluation (ASPE), after 2010 the demand for direct care workers will increase as the baby boomers reach age 85 (beginning in 2030). ASPE estimates project the demand for direct care workers to grow to approximately 5.7-6.6 million workers in 2050, an increase in the current demand for workers of between 3.8 million and 4.6 million (200 percent and 242 percent respectively). This increase in demand will be occurring at a time when the supply of workers who have traditionally filled these jobs is expected to increase only slightly.

By increasing investment in respite care, additional jobs can thus be created to benefit, along with a wider scale of patients and caregivers, the local and regional economies.

3.   Respite care can delay time to nursing home placement, which can reduce dependence on Medicaid subsidization of long term care and result in substantial savings to the Commonwealth.

Several studies published over the past decade indicate that people with moderate dementia have been able to defer institutionalization by nearly a year when their family members received caregiver support services, including counseling, information and ongoing support.  Effective interventions for moderately and severely impaired patients become particularly valuable if they delay institutionalization.  A 2003 HHS Report to Congress had shown that a one-month delay in placement would yield savings of $1,863 in formal services.  At current rates of nursing home admissions, a one-month delay among Alzheimer’s disease and dementia admissions could save as much as $1.12 billion annually.

4.   Respite helps preserve both the mental and physical status of caregivers, which keeps them productive in their communities and in the workforce.

While experts have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well.  A study of elderly spousal caregivers (aged 66-96) found that caregivers who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.

Psychological health appears to be the aspect of the family caregiver’s life that is most affected by providing care. Studies consistently report higher levels of depressive symptoms and mental health problems among caregivers than among their noncaregiving peers (30% to 40% of dementia caregivers suffer from depression and emotional stress).

Caregiver interventions benefit both the caregiver and the care recipient. Use of caregiver support services, and in particular respite care, has been shown to have clinically significant outcomes in improving caregiver depression, anxiety, and anger. Specific caregiver interventions which appear most beneficial include those that work with both the caregiver and the care recipient, those that emphasize behavioral skills training, and those that are both multi-component and tailored to caregivers’ specific needs.

ADDITIONAL RESOURCES:

"Connections: A Complete Activities Guide" for Respite Providers.  Made possible by funding from VDA and ARDRAF.  Available at www.alz.org/cwva

 

LIVE DISCUSSION

 

Title:   Respite Care - Challenges and Solutions for the Caregiver Date:   Wednesday, December 2, 2009 Time:   12:00 PM - 1:00 PM EST Recording:   Click on the image above to launch the player.   Slides (PDF): (click on the image to download slides)     Ellen Nau: Respite - Programs Martha Watkins: A Personal Reflection Pam Dodge: Community Model Panelists:   MARTHA WATKINS has been involved with the Alzheimer’s Association since 1996 due to her father being diagnosed with Alzheimer’s Disease. Her involvement has included service as a Board Member, volunteer and trainer for Person Centered Care:  Skill Building for Caregivers of People with Dementia. She is currently a member of the Alzheimer’s Disease and Related Disorder Commission.  Additionally, she serves as a Retired Senior and Volunteer Advisory Board Member for the Shenandoah Agency on Aging.  Her present volunteer assignment is delivering Meals on Wheels for Page County, Virginia.   In 2007, she was awarded the Page County Senior Center Outstanding Volunteer.  Her career included 20 years as a Social Worker and 5 years as co-owner of Assisted Living Facilities specializing in Alzheimer’s Care.  Martha received her undergraduate degree from James Madison University and a Graduate Certificate in Aging Studies from Virginia Commonwealth University. ELLEN NAU - Ellen Nau is a Human Services Program Coordinator at the Virginia Department for the Aging.  Her primary areas of responsibility include: Caregiving, In-Home Services, Adult Day Care, Care Coordination, the Virginia Respite Care Initiative, Kinship Care and the Money Follows the Person Demonstration Project.  She is the organizer and facilitator of the Virginia Caregiver Coalition, a nationally recognized coalition dedicated to improving the caregiving experience through education, advocacy and resource accessibility so that Virginia’s caregivers are valued and supported.  Composed of a dedicated volunteer membership of professional and informal caregivers, the Coalition meets bi-monthly to discuss a variety of caregiving issues and advocacy strategies.  Ms. Nau participates as a caregiver advocate on a national level through the National Alliance for Caregiving. Ms. Nau currently serves on the Virginia Child Day Care Council and has served two terms on the Radford University Board of Visitors.  She received a B.S. degree from Radford University and a M.A. degree from George Mason University.  Ms. Nau is the mother of three grown children and a grandmother of two. PAMELA J. DODGE - Pamela J. Dodge is Director of Community Care Coordination with the Shenandoah Area Agency on Aging (SAAA) in Front Royal, VA.  Ms. Dodge is a member of the Virginia Caregiver Coalition and the Winchester-Frederick County Community Services Council.  Ms. Dodge serves on the Board of Directors for FREE (Foundation for Rehabilitation Equipment Endowment.)  Twice she has been a presenter at the National Respite Training Conference (Brookdale Foundation.)    Ms. Dodge has been instrumental in establishing three social model group respite centers for individuals with early to mid-stage memory loss.  A fourth center will open in Luray, VA sometime in February, 2010.  Under her leadership, Our Place-Shenandoah received the 2008 Anne McKinley Excellence in Rural Aging Award, the National Association of Area Agencies on Aging Achievement Award for  improving the lives of older adults and caregivers, as well as the National Association of Area Agencies on Aging Achievement Award and the Commonwealth Council on Aging Award for SAAA’s Students and Seniors Program.  Ms. Dodge joined SAAA in 2000.  Dr. AYN WELLEFORD is Chair, VCU Department of Gerontology, Associate Professor,VCU Department of Gerontology, and Associate Director, Virginia Geriatric Education Center. Dr. Welleford received her B.A. in Management/ Psychology from Averett College, M.S. from the Department of Gerontology and Ph.D. in Developmental Psychology from VCU. She has taught extensively in the areas of Lifespan Development, and Adult Development and Aging. As an educator, researcher, and previously as a practitioner she has worked with a broad spectrum of individuals across the caregiving continuum. As a gerontologist she currently works extensively with formal and informal caregivers to improve elder care through education. Outside of the classroom and working with various community agencies, Dr. Welleford provides community education on a variety of topics, including: Steps to Aging Well, Building Successful Mother-Daughter Relationships, Intergenerational Programs, and Family Caregiving.  Dr. Welleford conducts research, through mixed methodology, in the areas of caregiver burden, coping with distress, adult mother-daughter relationships, successful aging, and geriatric education. Other questions posed:   What measures or tests are used by physicians to identify stressed caregivers? Ellen Nau: The AMA has a caregiver stress measurement tool. Review this at http://www.ama-assn.org/ama/upload/mm/36/caregivertooleng.pdf   How do we get family caregivers to not only find out about respite resources but also to actually use them? Caregivers' lack of awareness of and resistance to respite is such a challenge! Ellen Nau: I have given speeches or presentations in localities where no one even knew there was a VDA.  I think in your locality, you might consider working with radio stations and local TV stations to do some public announcements.  In my county, they will sometimes send out information pieces with the water bill.  Posting your information at public libraries is a possibility.  In your area, you may want to contact the family counselors or social workers at the military bases, too.

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