Creating a Community that Cares for Caregivers

 Northern Nevada is coming of age. Our state, county, and city governments, companies, and philanthropic foundations are identifying and developing services and solutions to meet the tremendous needs that our elders have. The Community Foundation of Northern Nevada has dedicated a major imitative to serve our elders and their families – The Caregiver Support Initiative.

The Community Foundation in collaboration with many organizations throughout Washoe County have conducted community focus groups and many discussion groups around elder caregiving. They found that one of the major issues with caregivers serving their elders is lack of information and knowledge of resources within the community. So the Community Foundation is producing a guidebook for the basics of beginning care for seniors and a web site that will enable caregivers to access information about services throughout the community. This is a great beginning step and will provide tremendous help to those caregivers. What we need next is to create a community that cares for caregivers.

In general family caregivers view their work as a small thing within the larger world.  But the reality is that roughly 80% of all caregiving to elders is done by families and friends. So without family caregivers we would have no real long-term care system in the United States.  Family caregivers play perhaps the most critical role in the well-being of elders with care needs.  Literally – just as, or even more, important than doctors and nurses.

An impactful family caregiver support system offers a “no wrong door” approach to assisting caregivers.  Such an approach seeks out existing community assets and knits them together to develop a comprehensive system of care.  We can think of the approaches in buckets: community partnerships, supportive services, and education.

Community Partnerships: No one organization can provide all the services necessary to support caregivers.  Recent studies have found that there are at least 12 services that form the key to a successful caregiver network.  These include:

  • Caregiver assessments to determine care needs
  • Case management ensuring comprehensive and coordinated services
  • Homecare by volunteers and paid home care aides
  • Respite care
  • Home modification
  • Transportation
  • Meal preparation
  • Shopping
  • Care consultation (including on-the-spot expert advice to address specific issues such a behavioral problems)
  • Support groups led by professionals and experienced caregivers
  • Face-to-face as well as telephone evidence-based caregiver training sessions
  • Legal and financial planning

The essence of an effective caregiver support system is a partnership with organizations already providing valuable services to caregivers and their loved ones. Providers can be divided into eight different provider categories:

  • Caregiver Education and Training
  • Counseling and Support Groups
  • Food and Nutrition
  • Home Modification and Housing
  • Legal Services
  • Long-term and Respite Care Services
  • Transportation
  • Organizations such as communities of faith which have frequent contact with caregivers and older adults

Supportive Services: These services include ways to help caregivers themselves avoid isolation, anxiety, and depression such as:

  • Caregiver Cafés. Caregiver Cafés are “pop-up” support programs and information centers for caregivers. Cafés provide a warm environment for caregivers to relieve stress, have informal conversations with health care providers and other caregivers, and obtain helpful resources. Cafes can happen in libraries, coffee shops, churches, synagogues or any place accessible to the public.
  • Caregiver Salons, a periodic gathering of current caregivers in the home of an experienced, and perhaps now “unemployed” caregiver, where they can share their concerns with others and have access to information and training.

Education: Basic and simple information about how to caregive, use of community resources via the new guidebook and website of the Community Foundation, and how to take care of yourself.

Caregiving 101: Is a program that brings caregivers and health care professionals together in a relaxed setting to discuss common issues, share ideas and gain a better understanding of each other’s perspectives on caregiving.

There are many such courses for example the program offered by Johns Hopkins Bayview Medical Center, using the name Caregiving 101 which covers the following topics:

  • Accessing and Developing Resources
  • Building Cooperative Relationships
  • Home Safety and Fall Prevention
  • Long-term Care Planning
  • Preventing and Solving Problems
  • Taking Care of Yourself
  • What it Means to be a Caregiver

Respite Care Training: Respite care allows caregivers to take a break from caring for their loved one and take time for themselves. Well organized Respite Care Training includes at least five general topics:

  • The important role of the family caregiver
  • Responsibilities and best practices for respite care volunteers
  • Home health and safety, including CPR
  • Recreational activities to engage older adults, including those with dementia
  • Community resources for older adults

Providers such as Johns Hopkins Bayview, Parker Geriatric Services of New York, Wellmed Foundation of San Antonio, REAL Services of South Bend Indiana, and many others offer replicatable programs. So let’s pool together our resources and develop a community that cares for caregivers. What better way to “add life to years” for our elders and their caregivers.

Lawrence J. Weiss, Ph.D. is Founder and CEO of the Center for Healthy Aging. Dr. Weiss welcomes your comments on this column. Write to him at larry@addinglifetoyears.com or c/o Center for Healthy Aging, 11 Fillmore Way, Reno, NV 89519.

Seniors Need to Stand Up and Be Heard

February 2017 marks the time where the Nevada State Legislature convenes. According to Governor Sandoval’s state of the state address on January 17th, Nevada is setting very well financially. He even mentioned seniors in his address and included enhancing nutrition by $1.5 million, home and community based waiver services by $11.5 million across the state for needed seniors, and $43 million for building the Veteran’s home in Reno.  This budget enhancement request is reflective of the awareness that our elective officials at all levels of government (state, county, and city) have of the elder care needs. So it is time to stand up and be heard.

I have a couple of roles that expose me to having an impact on identifying and promoting elder issues. The first is as chair of the Washoe County Senior Services Advisory Board. The Advisory Board welcomes input from the community as to what is needed and we help guide the county senior services administrators to helping those seniors in most need. In addition, I serve on the Governor’s Commission on Aging Subcommittee Concerning Legislative Issues. The subcommittee consists of five members – Jeff Klein, Chair, Diane Ross, Co-Chair, Sally Ramm, Mary Liveratti, and myself. This subcommittee also welcomes help from the community in promoting and improving elder programs throughout the state.

The Nevada Commission on Aging Subcommittee Concerning Legislative Issues recognizes that Nevada’s aging population is one of the fastest growing 65+ populations in the country. At all public and private levels we have not been able to keep up with needed services with this explosion. Given that most of us want to remain in the community and independent, we need to provide affordable home and community based services.  We need services that meet the needs of those that develop chronic illnesses and limit independence, and also services that help to prevent institutionalization. Therefore, the subcommittee has developed five area issues that address these concerns: Access to Services; Behavioral, Cognitive, and Mental Health; Family Caregivers; Legal Rights; and Medicaid Managed Long Term Services and Supports.

The first elder issue addresses Access to Services. Two areas are recommended by the subcommittee to be addressed – Increase reimbursement rates for Medicaid providers of community based long term care services, which have not seen increases in fifteen years, and increase the numbers of frail elders who can receive home and community based services and supports.

The second issue addresses Behavioral, Cognitive and Mental Health. The incidence of mental health disorders among 65+ elders has been estimated at 20-25% and about 11% have a cognitive disorder, and 50% of the 85+ elders. Nevada does not have an adequate mental health care system to effectively meet the needs of elders. We do not have trained providers or caregivers that can effectively treat or manage behavior or mental health issues of elders, nor do we have the evidence based programs that can treat them. Therefore, we have to develop and fund evidence based behavioral, cognitive, and mental health demonstration programs that can serve elders.

The third issue area addresses Family Caregivers. Approximately one-half million Nevadans provide about 400 million of hours of unpaid caregiving services.  Those unpaid caregivers save about $4 billion for Nevadan tax payers. Most of these caregivers are women and are employed with significant stress. What is needed is more home and community based services that support the caregivers, training and education for the family caregivers that empower them to make good decisions, and respite services to give them a break.

The fourth issue addresses Legal Rights. There are too many elders that are being maltreated, neglected, and abused. The penalties for neglecting an elder, causing physical or mental harm or even death are too lenient. The subcommittee makes several specific recommendations to strengthen the laws.

The fifth issue area addresses Medicaid Managed Long Term Services and Supports. Individuals need to have a choice of plan and providers, requiring person-centered processes, requiring state planning processes, creating an independent beneficiary support system that helps elders navigate the service delivery system, and payment methods that improve the health of populations.

The detail of these issues that need legislative attention are addressed in “Elder Issues in Nevada” by the Commission on Aging Subcommittee Concerning Legislative Issues 2017 and can be found on the website for the Nevada Aging and Disability Services Division (http://adsd.nv.gov/). Please educate yourself and advocate for our elders that are in need at all levels. On February 23, 2017 there is a very special event – “Nevada Senior Issues Day” – at the Nevada Legislature building – Room 3100 from 7:30am to 3:00. For information contact Susan Hirsch (702)333-1549. What better way to stand up and be heard and add life to years for yourself and our elders.

Lawrence J. Weiss, Ph.D. is CEO of the Center for Healthy Aging. Dr. Weiss welcomes your comments on this column. Write to him at larry@addinglifetoyears.com or c/o Center for Healthy Aging, 11 Fillmore Way, Reno, NV 89519.

Eldercare in the Workforce

“There are four kinds of people in this world: Those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”- Former first lady Rosalynn Carter

Clearly caregiving impacts the majority of Americans today. According to the National Alliance on Caregiving, there are an estimated 67 million caregivers in the United States. Of this number, 4 million care for children, while 50 million care for adults, and 13 million care both children and adults. Caregivers tend to be mainly women (66%), with an average age of 48. About one third of caregivers take care of more than two people, and 86% care for a family member.

Caregivers provide assistance with a whole variety of activities of daily living and
instrumental activities of daily living. Fifty-six percent of caregivers report assisting with activities of daily living such as getting in and out of bed and chairs, getting dressed,
bathing and showering, getting to and from the toilet, feeding and dealing with incontinence. Assistance with instrumental activities include providing transportation, helping with housework, grocery shopping, preparing meals, managing finances, managing medications, and arranging or supervising paid services or paying for them.

According to AARP and the National Alliance on Caregiving, the state of Nevada has more than 532,000 informal caregivers, and the value of informal caregiving in Nevada is said to be roughly $4 billion. Approximately one in five caregivers say they have obtained formal caregiver training (19%), and more than 78% of informal caregivers feel they need more help or information about caregiving. The areas in which caregivers most frequently seek training and information include keeping their loved one safe at home, finding appropriate services, managing their own stress, identifying easy activities to do with care recipients, finding time for themselves, balancing work and family, talking to doctors and other healthcare professionals, making end-of life decisions, and managing challenging behaviors, especially dealing with dementia.

Family caregivers can face financial hardships if they must leave the labor force due to caregiving demands. Not only may they lose earnings and Social Security benefits, but they also can lose job security and career mobility, and employment benefits such as health insurance and retirement savings. There is evidence that midlife working women who begin caring for aging parents reduce paid work hours or leave the workplace entirely. An analysis a couple of years ago estimates that the lifetime income-related losses sustained by family caregivers age 50 and over who leave the workforce to care for a parent are about $116,000 in wages, $138,000 in Social Security benefits, and conservatively $50,000 in pension benefits. These estimates range from a total of $283,716 for men to $324,044 for women, or $303,880 on average, in lost income and benefits over a caregiver’s lifetime. Evidence suggests that assuming the role of caregiver for aging parents in midlife not only has a greater economic impact on female caregivers’ retirement years but also may substantially increase women’s risks of living in poverty and receiving public assistance in old age.

Caregiving has economic consequences not only for the caregiver but also for employers, especially in lost productivity and higher health care costs. About 42% of U.S. workers have provided elder care in the past five years, and nearly one in five (17%) is estimated to currently be providing care and assistance for older relatives or friends. It has been estimated that U.S. businesses lose up to $34 billion per year in lost productivity from full-time employees  who have caregiving responsibilities outside of work. These costs include those associated with replacing employees, absenteeism, workday distractions, supervisory time, and reductions in hours from full-time to part-time.

Recent research shows a link between employed family caregivers of older relatives and their health care costs. Employers were found to be paying about 8% more for the health care of employees with eldercare responsibilities compared to non-caregiving employees, potentially costing U.S. businesses an additional estimated $13 billion per year. Both younger employees (age 18 to 39) and older employees (age 50+) providing care for an older relative were more likely to report fair or poor health in general, and they were significantly more likely to report depression, diabetes, hypertension, or pulmonary disease than non-caregivers of the same age. This finding suggests that the challenge of having employees with eldercare responsibilities outside of work is an important factor in the health care costs of businesses.

The work of caregiving has a substantial impact on health and well-being. An extensive body of research finds that providing care to a chronically ill family member or close friend can have profound negative effects on the caregiver’s own physical and psychological health, increase social isolation, and adversely impact quality of life and well-being.  Caregivers commonly experience emotional strain and mental health problems, especially depression. A review of studies suggests that between 40% and 70% of family caregivers of older adults have clinically significant symptoms of depression, with about one-fourth to one-half of these caregivers meeting the diagnostic criteria for major depression.

Research has shown that caregivers have poorer physical health than non-caregivers, with an estimated 17% to 35% of family caregivers perceiving their health as fair to poor. Family caregivers face chronic health problems of their own, such as heart disease, hypertension, stroke, poorer immune function, sleep problems and fatigue, increased use of psychotropic drugs, and even death among highly stressed spouse caregivers. Caring for a spouse with a dementing illness like Alzheimer’s disease is particularly stressful and is associated with depression, physical health problems, sleep problems, social isolation, mortality, and a greater risk of the caregiver’s developing dementia.

Clearly the impact of caregiving is enormous for both the caregiver themselves and for their employer. As a result, we first need to identify and acknowledge the caregivers in the workplace. Then we need to provide better support systems and services to both the caregiver and the employer through acknowledgement, information, workplace flexibility, ensuring safety of the loved ones, managing stress, and balancing work and family so it is a win-win for both the caregiver and the employer. What better way to “add life to years.”

Lawrence J. Weiss, Ph.D. is CEO of the Center for Healthy Aging. Dr. Weiss welcomes your comments on this column. Write to him at larry@addinglifetoyears.com or c/o Center for Healthy Aging, 11 Fillmore Way, Reno, NV 89519.

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