Eldercare: A Family Caregiver Role

I have written a lot about eldercare, but it is so prevalent today, where the estimates are that about 50 million care for elders in the US and this number is growing phenomenally. We need to know what it entails, plan for it, and balance it with our other roles, while maintaining our own health.

According to AARP and the National Alliance on Caregiving, the state of Nevada has more than one-half million informal caregivers, and the value of informal caregiving in Nevada is said to be roughly $4 billion annually. In addition, nearly half of family caregivers are caring for someone who lives in his or her own home, while an additional one-third are sharing a home with the loved one. Some are caring for a spouse or partner, many for a parent — all working to help that person stay at home for as long and as comfortably as possible. The caregiving role may be simply checking in on the elder to assisting them with everything from bathing and meal prep to medication management.

It’s important to think both short term tasks and needs and long term issues that require planning. You can not anticipate everything, but being forward-thinking now will help you respond more quickly and effectively in an emergency. We cannot do this caregiving role alone. Reach out to form a team of family, friends and others who can help you and the care recipient.

So, in forming a team what needs to be done. First, identify who can participate. Second, be open and honest with yourself. If you are uncomfortable with hands-on caregiving tasks, such as helping a loved one bathe, ask if another team member can step in. Or discuss whether there is money available to hire assistance. Really think about what you can and cannot do. Talk to the team members about tasks and find consensus. Third, communicate with the team members and determine what they’re willing to do to contribute to the care. Even if they live out of town, they can handle jobs like paying bills, ordering prescriptions and scheduling medical appointments. Fourth, work with the team on a plan, and if possible always include the care recipient. The plan needs to be agreed upon by all parties and if valuable, put in writing. Be aware that it will constantly change, so review the plan regularly.

Caregivers may need help with basic care.  The areas in which caregivers most frequently seek information include keeping their loved one safe at home, 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 among many other areas. Many services in the community can help with obtaining information. For example, the Center for Healthy Aging collaborated with the Reno Senior Citizens Advisory Committee, Washoe County, Truckee Meadows Parks Foundation, AmeriCorps VISTA, and No NV Building and Construction Trades Department to create the 2017 Reno, Sparks, Washoe County Elder Services Guides and Resources. This is one of many guides available. The important thing is to ask the questions and seek information, because there are many resources out there that can help with the care. One invaluable new resource available to Washoe County created by the Community Foundation of Western Nevada is the Washoe Caregivers Guidebook. Go to www.WashoeCaregivers.org or call the Foundation for a printed copy.

In addition to becoming aware of the information and resources in the community to help with caregiving, there are specific fixes that can help with maintaining a safe home environment. Some basic, low-cost changes for home safety and fall prevention include removing trip hazards such as throw rugs, making sure the home is well lit (use automatic night-lights) and installing things like handrails, grab bars and adjustable shower seats. Lifeline has amazing technology to provide notice of falls, in the house or community, to provide peace of mind to the caregiver.

Those caregivers who have a loved one with dementia or Alzheimer’s brings with it particular worries about safety and self-injury. Some preventive measures include installing remote door locks, using GPS devices, disabling the stove and lowering the water heater temperature to 120 F or less. Cognitive confusion can occur due to a variety of reasons. One such area is mis-management of medications. One preventive technique is to create and maintain an updated medication list, with the name, dosage, prescribing doctor and other relevant information to bring to medical appointments and hospitals. Lifeline also has a Personal Medication Dispenser that handles the complication of taking many medications. In addition, when I was at UNR’s Sanford Center for Aging, we established a medication review program that is staffed by a Certified Geriatric Pharmacist. Note that mis-management of medications account for many elder hospitalizations and deaths. Take advantage of this low to no cost medication therapy management program.

Historically hospitals have discharged Medicare patients more abruptly to cut costs, tasks once reserved for nurses are now often handed off to caregivers, who sometimes get little or no training or instruction. However, since 2015 NV legislative session, the CARE Act was passed mandating the hospital educates the caregiver on the discharge plan. Make sure you identify yourself as the caregiver and then demand that you be educated by the hospital when your loved one is being discharged. It is the law!

There are many more areas to cover with caregiving of elders that I will cover in future articles, but please be aware that caregiving can become all-consuming. You may find yourself playing nurse, coach, nutritionist and social director. All of these roles are important for maintaining your loved ones mental and physical health. Just don’t neglect your own well-being and other roles you play in your life. Make sure you establish boundaries. Especially if you and your spouse/partner are living with the person you’re caring for; it’s important that everyone has a level of privacy. Ideally there is some separation between living areas and you can manage some time together as a couple. Clearly caregiving can be all inclusive, but very rewarding. So make sure you take care of yourself so you can “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.

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.