National Plan to Address Alzheimer's Disease: 2016 Update. Strategy 3.B: Enable Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being

08/01/2016

Economic Impacts of Programs to Support Unpaid Caregivers. ASPE has begun a study on the economic impacts of programs to support informal caregivers. Informal caregiving is likely to grow in the next decades as the baby boomer cohort ages. Not only will there likely be an increased need for caregiving, as disability increases with age, but the ratio of individuals potentially available for caregiving will decrease. For some caregivers of persons with disabilities, providing care may make it difficult or impossible to have paid employment, or if they do have employment, may make it difficult to advance their career. If they take time out of the labor force, they may face obstacles to returning to employment at all, or at a similar level of responsibility and pay than when they left. Both the direct costs in lost wages of not working, as well as the loss of seniority and retirement benefits may leave some caregivers economically vulnerable when they themselves age. In addition to the costs and benefits to caregivers, there are costs and benefits to the nation of informal caregiving. Inasmuch as informal caregiving replaces formal caregiving, informal caregivers may provide a net benefit to the country, reducing caregiving expenditures. However, increased informal caregiving may also lead to reduced labor force participation, resulting in lower national economic growth as the number of individuals performing informal caregiving increases. Lack of support for informal caregivers may also lead to burnout and placement in a facility that is more costly to the government than earlier support services may have been.

This research aims to provide a framework for policy makers to begin to estimate costs and benefits of policies and programs aimed to help caregivers, including, for example, respite care, paid family leave, workplace flexibility policies and social security credits for caregivers. While researchers have established a number of relationships that can help inform government policies that impact informal caregiving, there are both gaps in knowledge, and lack of a consistent consideration of policies from an economic perspective. This project will organize existing information around caregiving to better understand the economic impacts of caregiving.

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Lifespan Respite. ACL continues to support the expansion and enhancement of state Lifespan Respite Care programs which are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs, to give them a break from the demands of caregiving. These programs are designed to reduce duplication of effort and assist in the development of respite care infrastructures at the state and local levels. Lifespan Respite Care programs work to improve the delivery and quality of respite services available to families across the age and disability spectrum, including those with dementia. Lifespan Respite Care programs advance the following objectives:

  1. Expand and enhance respite services in the states.
  2. Improve coordination and dissemination of respite services.
  3. Streamline access to programs.
  4. Fill gaps in service where necessary.
  5. Improve the overall quality of the respite services currently available.

 

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Adult Day Care and Residential Care State Policy Compendia. ASPE recently updated two policy compendia examining state approaches to regulation of long-term care settings. The first compendium examines state regulation around adult day services (ADS) -- a non-residential service that provides services outside of an individual's home for less than a full day to older adults and younger adults with physical disabilities. These services also meet unpaid caregivers' need for respite in order to work, fulfill other obligations, and recover from the demands of continuous caregiving. Many caregivers who use ADS are providing care to family members with dementia who need constant supervision to ensure their safety. The second compendium examines state approaches to residential care, including assisted living. Residential care provides 24-hour supervision, meals, and assistance with ADLs. States vary in their approaches to licensure for residential care facilities.

For more information, see:

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Effect of Dementia on Hospitalization and Emergency Department Use in Residential Care Facilities. ASPE recently released a report examining the experiences of individuals living in residential care facilities (including assisted living) who have dementia. Understanding the availability and adequacy of these services is critical to understanding the range of options available to individuals with functional and cognitive limitations. These papers examine dementia care in residential care facilities based on analysis from the National Center for Health Statistics (NCHS)-ASPE National Survey of Residential Care Facilities. The analysis finds that:

  • Half of residential care facility residents aged 65+ had severe cognitive impairment.
  • Nearly one-quarter of all residential care facility residents had at least one hospitalization and more than one-third had at least one emergency department visit in the past 12 months.
  • Among residential care facility residents, living in a special care unit for dementia or a facility that only serves individuals with AD/ADRD decreases the risk of hospitalization.

     

For more information, see:

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Caregiver Workgroup. This workgroup is an ongoing joint effort between CMS and its partner organizations (non-profit organizations, federal partners, and others). Held quarterly in Washington, DC; the agenda topics are open for partners to present and give updates.

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Improvements in Hospice Care. Hospices serving Medicare beneficiaries now provide for two routine home care rates to provide separate, budget-neutral payments for the first 60 days of hospice care, and care beyond 60 days. In addition to the two routine rates, CMS provides for a service intensity "add-on" payment that will promote and compensate for the provision of skilled visits at the very end of a person's life.

For more information, see:

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Understanding Caregiver Stress. NIH-funded research is deepening our understanding of the mental and physical health consequences of caring for people with AD/ADRD. For example, in 2015, an NIH-funded study explored whether use of ADS, an intervention which lowers caregivers' daily exposure to stressors, might lead to improved regulation of cortisol, a stress hormone. Using saliva tests to measure cortisol levels over 8 days among 158 caregivers of people with dementia, the researchers found that cortisol levels improved on ADS days compared to days when the participants provided care. This suggests use of ADS may enhance the long-term health of caregivers, and points to the importance of respite care.

NIH also launched a number of research efforts aimed at defining the unique needs of caregivers, to include:

  • The Improved Measures of Caregiving Intensity to Predict Health Outcomes study will develop and validate a tool for measuring the emotional and physical intensity of caregiving for people caring for relatives with Alzheimer's, Parkinson's, or other chronic conditions. This study will not only shed light on the health effects of caregiving intensity for families living with dementia, but also inform assessments of caregivers for other chronic diseases.
  • The Long-Distance Caregiving: Unique Challenges and Service Needs study will begin to close a major knowledge gap in caregiving research by providing an in-depth examination of long-distance caregiving. Researchers will follow 300 caregivers, including those from minority populations, over 2 years to explore the unique stressors they experience; the factors that promote or hinder distance caregiving and influence caregiver well-being; and the communication and coordination challenges between formal care providers and long-distance caregivers. The findings will inform the development of tailored interventions and policies supporting long-distance caregivers and the recipients of their care.

     

For more information, see:

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Maintaining Caregiver Health and Well-Being. The State of Minnesota received an ACL ADSSP expansion grant in 2015 to pilot a collaboration between a medical center and an aging services provider to identify caregivers of people with AD/ADRD and connect them to an aging service provider for dementia-capable caregiver consultation including individualized dementia education, care planning and support services. A short screen included in the rooming process identifies patients who are caregivers and their level of stress. A positive screen initiates a caregiver protocol embedded in the electronic medical record. The caregiver is linked to the aging service provider (caregiver consultant) via the clinic's care coordinator. The clinic and aging service provider share information regarding the health of the caregiver and supports received through a shared release of information. After pilot completion, the goal is to roll out this protocol to the medical center's remaining clinics and showcase the project for other health care systems.

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Dementia: Awareness, Screening Testing and Support of Caregivers. In 2015, the Minnesota State Legislature appropriated funds to the Minnesota Board on Aging for a competitive grant program focusing on dementia and its impact on caregivers. The goals of the grants are to increase awareness of AD/ADRD, increase the rate of cognitive testing, promote the benefits of early diagnosis of dementias, and/or connect caregivers of persons with dementia to education and resources. Twenty grantees were selected, including aging service providers, community health boards, a hospital and a major university. Fourteen of the grantees have some component of their project focused on ethnic and cultural communities including Latino/Hispanic, Somali, African American, American Indian, Lao, Korean, LGBT and Holocaust survivors. The projects include innovative ideas such as: using an online App to reach and support caregivers in an ethnic community; identifying and supporting female employees who are caregivers and work in a supermarket chain; and training staff of fitness centers about how to recognize symptoms of dementia and offer fitness services.

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Testing and Scaling up the New Ways for Better Days: Tailoring Activities for Persons with Dementia and Caregivers Program. TAP is an intervention that provides activities tailored to abilities of persons with dementia and trains caregivers in their use. Pilot randomized clinical trial data suggest its efficacy in reducing behavioral symptoms and improving caregiver abilities and time spent in providing care. This approach has been tested in the home and also in hospital settings with occupational therapists as interventionists.

Activities include:

  • NIA-funded trial that is ongoing in Baltimore to test efficacy.
  • Australia-funded a trial in Sydney, Australia with individuals with FTD.
  • The program is currently being used in Scotland (it will be part of their dementia care approach), Australia, England, Brazil, various U.S. states. ACL has funded several sites using the program.

     

Access to the training program is in the form of online training modules. A face-to-face and virtual launch party was held May 26, 2016 to showcase the program. The initial training target is occupational therapists nationally and internationally. Modifications to the program are underway so that other professionals are able to use this approach.

For more information, see:

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WeCareAdvisorTM. WeCareAdvisorTM is a web-based program based on an evidence-informed algorithmic approach, to help families prevent, assess, and manage neuropsychiatric symptoms (NPS), such as agitation, aggression, depression, irritability, and apathy in persons with dementia. Developed by Drs. Kales, Gitlin and Lyketsos, WeCareAdvisorTM is currently being tested in the home environment and has potential to be used across multiple environments and by both paid and unpaid caregivers. WeCareAdvisorTM has three components: the Caregiver Survival Guide which provides comprehensive education about dementia in easy-to-read language; daily/weekly caregiving tips sent to a user's email; and a published, evidence-informed algorithm (Describe, Investigate, Create and Evaluate -- or DICE) that moves users through a series of questions about behavioral occurrences from which a prescription for managing such behaviors is generated. The prescription provides tips that are tailored to the information provided by a caregiver about the behavior and which address four areas: (1) actions the caregiver can take, such as simplifying communication; (2) considerations related to the person with dementia, such as unmet needs (dehydration, fear, lack of sleep); (3) modifications to the physical environment or where the person with dementia lives or the context in which the behavior occurs; and (4) health and safety issues that may be of immediate concern (medications, underlying infection) and need attention from a health care professional. WeCareAdvisorTM is currently in beta testing. [More information is available by contacting: lgitlin@jhu.edu; kales@med.umich.edu; or kostas@jhmi.edu.]

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Translation and Evaluation of the Adult Day Service Plus Program. Adult Day Service Plus (ADS Plus) augments ADS with a systematic approach to supporting families. Staff of ADS (e.g., social worker, care manager, intake specialist, occupational therapist, nurse) can be trained to provide ADS Plus. Pilot data in three centers showed that ADS Plus increased number of days using ADS, decreased nursing home placement, improved caregiver well-being including decreasing depressive symptoms, upset with behaviors, and also enhanced sense of self-efficacy.

Activities include:

  • Through funding from ACL, ADS sites in Maine are using ADS Plus combined with elements from TAP and COPE.
  • NIA-funded study to test ADS Plus in 30 sites across the country.
  • Plan to add sites and also develop an online program to train ADS staff nationally (Principal Investigators: Dr. Laura Gitlin and Dr. Joseph Gaugler).

     

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New York State Alzheimer's Disease Regional Caregiver Support Initiative. New York State is providing a total amount of $15 million to offer a wide range of caregiver support and respite services. Ten regional contractors, reaching every county in the state and funded at $1.5 million each, provide support services to promote the mental and physical well-being of caregivers. Services include support groups, respite services, care consultation, family consultation, and education for caregivers. Additional offerings consist of caregiver wellness programs, joint enrichment opportunities to include the person with dementia and their caregiver, and technology-based services. Contractors utilize strong community relationships and have a robust media presence to promote and connect caregivers with services.

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NAS Study on Family Caregiving for Older Adults. A study is being conducted by NAS's HMD. The study will analyze the prevalence of family caregiving and the demographic, societal, and technological trends that influence it. It will also examine caregivers' roles and responsibilities, both current and expected in the future, and the impact of the caregiver role on individual health, employment, and well-being. Caregivers' unmet needs and the gap between the projected demand for caregivers and the population available to serve as caregivers will be assessed and differences associated with race and ethnicity, culture, rural residence, and geography will be examined. The study will also review the evidence of the effectiveness of potential supports for family caregivers and care recipients across a range of settings including, for example, in medical homes and other primary care settings, HCBS settings, acute care hospitals, and residential facilities. These might include, for example, models of team-based care that include the family caregiver as member; approaches to training providers regarding the caregiver role; and models for training caregivers for their various roles. Public hearings occurred in January 2015 and April 2015, and the study's report is expected in 2016.

For more information, see:

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Geriatric Psychiatrist as Family Caregiver. The 2015 American Association for Geriatric Psychiatry Annual Meeting included a session entitled, "The Geriatric Psychiatrist as Family Caregiver." At this session, geriatric psychiatrists described the challenges of dealing with late-life issues in family members. Topics included balancing autonomy and independence with safety and care needs can present dilemmas, issues around when someone should stop driving, where they should live, how to provide or arrange for additional care. Drs. Benjamin Liptzin, Christopher C. Colenda and Gary Epstein-Lubow presented.

For more information, see:

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