A new GUIDE for Caregivers
The Centers for Medicare & Medicaid Services (CMS) estimates that dementia affects more than 6.7 million Americans. Many of those people have multiple chronic conditions, such as diabetes, heart disease or Parkinson’s. This may mean increased rates of hospitalization and fragmented care. Caring for a loved one can become complex and exhausting for the caregiver.
Caregivers share a story that can be summarized as “diagnose and adios.” Diagnoses of dementia or other neurological conditions may not have obvious or complete options for treatment. Patients and families are often left to fend for themselves. I have heard variations of this story at family support group meetings, adult day programs and memory cafes. Recently, new medications, improved diagnostic tools and greater awareness of ways to support brain health have improved the outlook for individuals living with dementia, and this in turn gives health care professionals greater confidence in offering options for care. But Alzheimer’s Disease and other dementias remain a frightening prospect for those diagnosed with it, and a great source of anxiety and stress for the patient and their family and friend caregivers.
Caregiver Burden
Family members and friends provide an average of 80 percent of the help needed by older adults who are unable to independently complete all their daily activities due to an illness or disability (Feinberg L, Reinhard SC, Houser A, Choula R. National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press). While assistance from professionals or paid helpers may also be beneficial, family members and friends are the main source of support, with one or more assisting and serving in the role of caregiver. This may include direct care for a loved one, (such as bathing, dressing, feeding), as well as help with household tasks, such as shopping, paying bills or arranging health appointments and services. Informal (and uncompensated) caregivers also provide emotional support. They are the advocate, interpreter and navigator for their loved ones. A study by AARP estimates the value of uncompensated care provided by family and friends is more than $600 billion annually. This exceeds payments made by Medicare, Medicaid, private health insurance, charitable organizations and out-of-pocket purchases combined.
Caregivers take on these responsibilities in addition to those an individual may have as an employee, a parent or a spouse. Caregivers may experience stress, anxiety and chronic health conditions related to their responsibilities. This may result in caregiver burnout, the state of physical, emotional and mental exhaustion that happens while you’re taking care of someone else. Stressed caregivers may experience fatigue, anxiety and depression. And this impacts their ability to care for their loved one.
Home and Community-Based Services
One of the success stories of modern healthcare is greater utilization of home and community-based services (HCBS) in addressing the long-term social and medical supports of individuals living with chronic health conditions, including Alzheimer’s and related dementias. Put simply, people respond better to care provided in familiar settings. The State Long-Term Services and Supports (LTSS) Scorecard produced by AARP illustrates the dramatic shift from institutional placement and in-patient care to providing more services in the home. In 2011, one-third of persons requiring long-term services and supports received care at home. In the 2023 survey, 53 percent of individuals received care in a community setting. Shorter hospital stays and increased use of in-home rehab services have helped improve recovery from illnesses and injuries, reduced rates of infection and lowered the risks of rehospitalization. “Hospital at home” programs, which provide acute care services, have demonstrated the value of home-based care. Chronic disease management and treatment services (i.e. kidney dialysis) also strive for more home care options. HCBS are effective in improving health outcomes, increasing patient satisfaction and reducing the costs of care.
All of which requires the presence of family and friend caregivers.
The informal (and uncompensated) support of friends and family is critical to the success of home and community-based long-term care. But far too often caregivers are an afterthought, if they are thought of at all. A friend described the moment that she heard the dementia diagnosis for her mother. “Her doctor suggested we get her affairs in order, and then left the room.” It is often left to the caregiver to explore diagnosis and the care that will be needed. Resources for caregivers exist, but that does not mean that the caregiver knows about them, or how to access them. It is important for healthcare professionals and healthcare systems to understand that dementia, or any other chronic health condition, is far more than the diagnosis and treatment of disease. It is a journey that will take the rest of people’s lives to complete: a journey for both the caregiver and the person in their care.
The GUIDE Model
On July 8, the Centers for Medicare & Medicaid Services (CMS) announced the launch of the Guiding an Improved Dementia Experience (GUIDE) Model, with almost 400 participating organizations building Dementia Care Programs (DCPs) serving hundreds of thousands of Medicare beneficiaries nationwide. The GUIDE Model aims to improve the quality of life for people living with dementia, reduce strain on unpaid caregivers, and help people remain in their homes and communities through a package of care coordination and management, caregiver education and support, and respite services.
GUIDE is intended for community-dwelling individuals who are covered by traditional Medicare (Parts A and B) who have diagnoses of dementia. This includes people with caregiver support at home, as well as those who do not. (According to the National Alzheimer’s Project, 81 percent of people with a dementia diagnosis in the US live in community settings, and one person in four with dementia lives alone.)
GUIDE programs in the pilot must include:
- Comprehensive Assessments to determine dementia stage and caregiver needs;
- Tiered Care with tailored support and contact frequency, based on the dementia stage and caregiver situation;
- Care Navigators to guide patients and caregivers through the care process;
- 24/7 Support with a helpline for emergencies or urgent questions;
- Respite Services toalleviate caregiver burden with meaningful respite from caregiver responsibilities.
Read more about GUIDE in this blog post from CMS
GUIDE acknowledges the role of informal caregivers in the care and treatment of dementia. It goes beyond patient education and care training (teaching someone to provide care) to include counseling, support and respite for the caregiver. This will help reduce caregiver burden and burnout and support healthy relationships among care partners. And that in turn, will help improve health outcomes, patient satisfaction and the quality of care.
Throughout our history, Benjamin Rose has focused on the role of family and friend caregivers and worked to develop and implement meaningful, evidence-based approaches to support them. We advocate for recognition and support of the critical roles that family and friends play in the meeting needs of persons living with dementia. We are encouraged by the inclusion of caregiver support and respite in the standardized package of GUIDE Care Delivery Services. It is an important step forward in engaging caregivers, and recognizing the critical roles they play.
Caregiver Support at Benjamin Rose
The GUIDE Model builds upon prior experience of collaboration among health care and social services providers, including the recently completed D-CARE Study that piloted evidence-based caregiver supports among more than 2,000 participants in four clinical trial sites, including programs developed by Benjamin Rose. A number of GUIDE pilot sites are incorporating our caregiver support programs into their service delivery models, and our staff is providing technical assistance and support for additional sites as they develop their programs.
Benjamin Rose addresses the needs of caregivers in other ways.
Best Programs for Caregiving is a partnership of Benjamin Rose and the Family Caregiver Alliance. BPC is a free online database of proven dementia programs for family caregivers. It offers a searchable, interactive, national database of vetted, effective programs that offer much-needed information and support. The database is an invaluable tool for healthcare and community-based organizations, as well as funders and policy makers to discover and share high quality programs for caregivers. This year, we launched a new consumer portal, that helps individuals and families find evidence-based caregiver programs available in their communities.
BRI Care Consultation™ is a proven care-coaching solution delivered by telephone and email to adults with health conditions and their family or friend caregivers, empowering both to more effectively manage short- and long-term needs.
BRI Care Consultation uses a combination of ongoing assessment, action planning and follow-up support to create real and lasting changes in the caregiving situation, resulting in a decrease in unmet needs, stress and strain, and symptoms of depression for both caregivers and the person receiving care. Licensed sites offer the program in communities across the US. When delivered as a service of Benjamin Rose, BRI Care Consultation is known as WeCare…because you do.
SHARE for Dementiais an evidence-based care-planning program that empowers adults with early-stage dementia and their families to get the most out of today while planning for tomorrow. SHARE involves the person living with early-stage dementia visually as well as verbally, enabling them to participate in making decisions about how to best handle their daily activities should the time come that they need assistance with things such as managing finances, food shopping and preparation, personal hygiene or other tasks. Read more on the SHARE Fact Sheet.
You can reduce your risk of burnout by participating in respite care, joining a support group or talking with a mental health professional. Learn more about resources available from Benjamin Rose for caregivers on our website or by calling us at 216-791-8000.
For further reading on the GUIDE Model:
LeadingAge: GUIDE Model: Aid for People Living with Dementia, Unpaid Caregivers
The John A. Hartford Foundation Statement on CMS ‘GUIDE’ Model for Comprehensive Dementia Care
Guiding an Improved Dementia Experience (GUIDE) Model Overview Factsheet