Families Caring for an Aging America (2016) / Chapter Skim
Currently Skimming:
5 Programs and Supports for Family Caregivers of Older Adults
5 Programs and Supports for Family Caregivers of Older Adults
Pages 159-210
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From page 159... ...
. Trials also suggest the potential that some caregiver interventions reduce the resource use of care recipients by delaying nursing home place ment, reducing re-hospitalizations, and shortening hospital stays.
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From page 160... ...
: the individual/social level (older adult and caregiver, family, friends) organized by the specific health conditions of the older adult care recipient; the organizational level (e.g., workplace or formal health care organization)
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, behavioral process (e.g., communication strategies, selfcare behaviors) , or set of relationships (e.g., family caregiver and health and service providers; caregiver and care recipient)
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From page 162... ...
Organizational Framework for the Interventions To organize the available literature and understand the evidence and gaps in knowledge regarding caregiver interventions, as noted, the committee adopted a framework that recognizes that caregiving occurs within a multifaceted context that encompasses the care setting (e.g., the home or residential setting of the older adult who is impaired) , the social/community networks (e.g., family members)
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The interventions encompass a broad range of strategies including but not limited to: education, skill building, social support groups, cognitive behavioral therapy, environmental modifications, mindfulness training, information provision, stress management, and edu
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From page 164... ...
Studies, which evaluate interventions directed at the older adult care recipient (e.g., cognitive training programs, prescription drugs) and for which caregiver outcomes are reported, are briefly summarized.
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. In this regard, a comprehensive inventory of caregiver assessment measures was recently compiled and is available at the website of the Family Caregiver Alliance (2012)
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From page 166... ...
of the care recipient. Irrespective of the assessment instrument, the rationale for conducting a family caregiver assessment is based on the recognition that family caregivers are highly diverse and that services and supports need to be tailored to address the unique and varying needs of caregivers (Brodaty et al., 2003)
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From page 167... ...
Similarly, the social/community context of the caregiver should be considered and would help to gain an understanding of interventions that are acceptable to and effective for caregivers that are population-specific and accommodate language or cultural caregiving norms. INDIVIDUAL-LEVEL INTERVENTIONS Interventions at the individual level employ a variety of therapeutic strategies including problem solving, skills training, information provision, support groups, counseling, and family therapy; and target various aspects of caregiver risk (e.g., symptom management, behavioral problems, lack of support and resources)
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From page 168... ...
. Outcome measures for dementia caregiver interventions are wide ranging and have primarily included caregiver knowledge, burden, self-efficacy, psychological morbidity (anxiety/depression)
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From page 169... ...
resulted in improvements in a multivariate quality of life indicator that assessed caregiver burden, depressive symptoms, self-care, social support, and care recipient problem behaviors for the intervention group compared to the control group (Belle et al., 2006)
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From page 170... ...
, funded by the National Institute on Aging and the National Institute of Nursing Research, to assess the impact of a multicomponent intervention on dementia caregivers' quality of life and depression. The trial was conducted in five U.S.
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From page 171... ...
There is also a lack of community-engaged interventions targeting ethnic/racial groups through outreach to ethnic media, churches, and community-based organizations that serve ethnic communities. The community can also play an important role in terms of providing support and services to "hard to reach" caregivers, such as those who live in rural locations, ethnic/racial minorities, or those who have no other source of support for the care recipient and are often unaware of or have difficulty accessing available resources and sources of caregiver support.
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From page 172... ...
Betsy's dementia care specialist worked closely with her to develop a safety plan and called on her adult children to be included in her plan. Betsy and her children removed all guns, knives, and ammunition from the home, cut up his credit cards, and disabled his computer.
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From page 173... ...
Beverly initially wanted to work on his bathing difficulties and lack of activity in the COPE intervention. COPE Intervention: In general, COPE participants received up to 10 sessions with occupational therapists (OTs)
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Box 5-4 briefly describes one such intervention -- In it Together: Learning to COPE with Dementia -- designed to improve the well-being of both the person with dementia and the family caregiver. The few cost studies that have been conducted suggest that interventions directed at the individual level can be low cost and result in cost savings to the caregiver in terms of reductions in time spent in caregiving, a highly valuable resource for caregivers (Gitlin et al., 2010a; Jutkowitz et al., 2010; Nichols et al., 2008)
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; reduced Licensees have diverse missions, (CGs) and their care recipients hospital readmissions and return locations, and target populations.
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occupied. Skills2Care For CGs of persons with Improved CG knowledge 20 home care agencies; AAAs dementia.
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Care of Older Persons in the For CGs of persons with Improved CGs sense of well- Being tested in Medicaid home and Home Environment (COPE) dementia.
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From page 178... ...
codes to recognize the services rendered. One exception to this model is the REACH I Skills2Care intervention, which was structured for implementation in home care delivery by occupational therapists and is reimbursed through Medicare Part A and B as long as the caregiver training is linked to the health and functional goals of the care recipient with dementia (Gitlin et al., 2015)
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From page 179... ...
Funding • Existing funding sources have limited resources for translation efforts • Administration for Community Living Alzheimer's Disease Supportive Services Program • NIA/AoA research grant program (Translational Research to Help Older Adults Maintain Health and Independence in the Community)
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From page 180... ...
• Development of bundled or reimbursement payment mechanisms for providers to use proven caregiver interventions. • Expansion of funding for purposeful adoption of existing evidence-based programs for delivery to diverse family caregivers.
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The major findings of this review include significant improvement in cognitive function for the care recipients, delays in nursing home placement, as well as modest evidence for improvements in caregiving burden and time use. Generally, given the critical role of care givers in providing support to older adults with ADRD, caregiver outcomes such as burden, quality of life, and time spent on caregiving should be included in any evaluation examining the effectiveness of ChEIs.
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From page 182... ...
Family caregivers of care recipients with cancer are often introduced into situations that require a working knowledge of complex medical procedures and medication regimens in the context of a life-threatening diagnosis to a member of the family. When the individual is in remission, the possibility of cancer recurrence is a concern.
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From page 183... ...
Some interventions, such as interpersonal therapy and family/couples therapy, also resulted in better relationship quality between the caregiver and care recipient and for the care recipient's emotional well-being. Caregiving for Adults with Other Conditions The empirical literature on interventions is much less robust for family caregivers of older adults with other conditions such as adults with persistent mental illness (e.g., schizophrenia, major depression)
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From page 184... ...
Similar to caregivers of individuals after a stroke, they also have to cope with being suddenly thrust into the caregiving role and the need to provide emotional support to the person with the spinal cord injury who is confronting living with disabilities. With respect to interventions for these caregivers, the literature generally suggests that psychosocial interventions such as problem-solving therapy, family psychoeducational and dyadic multicomponent psychosocial interventions (e.g., those that combine skills training, stress management techniques)
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From page 185... ...
Generally, the psychosocial interventions for family caregivers of older adults with chronic conditions such as persistent mental illness and spinal cord injury are similar to those targeting caregivers of adults with dementia and cancer and involve strategies such as psychoeducational programs, support groups, problem-solving training, skills training, and stress management techniques. The results are promising with respect to showing positive benefits of these interventions for caregivers and in some cases care recipients.
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From page 186... ...
ORGANIZATIONAL LEVEL Interventions at the organizational level include those targeting care ivers g of older adults but which are embedded in or delivered through a formal organizational structure such as the workplace, primary care or other health care delivery settings, and/or community agencies such as Area Agencies on Aging or adult day services. The implementation of a caregiver program in an organizational structure typically requires adjustments to a workflow of the setting and/or connecting various service delivery and/or community agencies in a coordinated fashion to address family caregiver needs.
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From page 187... ...
One of the earliest care management programs to be tested was the Medicare Alzheimer's Disease Demonstration Project, which was designed to decrease nursing home placement by improving caregiver outcomes through case management and subsidized community services. Unfortunately, although more than 5,300 dyads participated, there were no substantial benefits to families including reductions in caregiver burden and nursing home placement (Miller et al., 1999; Newcomer et al., 1999)
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From page 188... ...
The Partners in Dementia Care (PDC) is another effective care coordination program delivered via a partnership between the U.S.
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From page 189... ...
showed that a 12-month care coordination model that linked families to needed community resources as well as to health care resulted in improved adherence to treatment guidelines, care recipient quality of life and caregiver social support, mastery of caregiving, and confidence. Similarly, Callahan and colleagues (2006)
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involves ADS staff who provide systematic care management, education, skills training, situational counseling, and ongoing support to family caregivers through faceto-face and telephone contact based on an initial needs assessment.
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showed that compared to the ADS only users, ADS Plus caregivers continued to report less depression and more confidence, used ADS for more days, and had fewer nursing home placements (Gitlin et al., 2006)
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. Overall, the evaluation of the program found beneficial effects for both care recipients and their caregivers.
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From page 193... ...
Caregivers may also use technology to monitor the functional status of a care recipient and employ telemedicine technologies to communicate with providers who can monitor the care recipient and/ or the caregiver. The Internet, videophones, videoconferencing, and other communication technologies are increasingly used to support family caregivers.
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Although limited, these studies suggest that caregiver interventions can be delivered via technology and can improve caregiver outcomes. Only a few studies have examined costs.
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From page 195... ...
Mobile health apps are also proliferating and can also provide caregivers with support and information. For example, the VA has developed a suite of mobile health apps to support family caregivers (Frisbee, 2014)
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These technologies can help caregivers track the health status and activities of the care recipient. Home monitoring systems and tracking systems are currently available and many more are emerging.
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From page 197... ...
Interventions that require extensive training of interventionists for their delivery also face challenges of scalability and delivery to reach all family caregivers in need. To move proven interventions for delivery into different health and human service settings, several actions may be required.
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From page 198... ...
As implementation science provides the theoretical foundation and the evidentiary base for the strategies most effective in moving proven interventions into care settings, there is an opportunity to more rapidly overcome the research-to-practice gap in this area. Other methodological challenges relate to understanding how interventions that primarily target older adults, such as care coordination or supportive services, impact family caregivers.
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From page 199... ...
Randomized controlled trials have demonstrated that interventions that involve caregivers may delay institutionalization, reduce re-hospitalization, and lead to shorter hospital stays: • ersonal counseling and care management programs can delay nursing P home admission for older adults with dementia when their family caregiv ers receive counseling. • ntegrating caregivers into the hospital discharge process can decrease I re-hospitalizations and shorten lengths of stay.
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From page 200... ...
Trials have also demonstrated that interventions that involve caregivers may reduce the resource use of care recipients by delaying nursing home placement, reducing rehospitalizations, and shortening hospital stays. Effective caregiver interventions tend to share several characteristics.
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2013. Caregiver outcomes of Partners in Dementia Care: Effect of a care coordination program for veterans with dementia and their fam ily members and friends.
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2008. Care coordination assisted by technology for multiethnic caregivers of persons with dementia: A pilot clinical demonstration project on caregiver burden and depres sion.
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2009. Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: A randomized controlled trial.
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From page 204... ...
2001. Dementia family caregiver training: Affecting beliefs about caregiving and caregiver outcomes.
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2011. Partners in dementia care: A care coordination intervention for individuals with dementia and their family caregivers.
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From page 206... ...
2014. The effect of psycho-educational interventions on the quality of life of the family caregivers of the patients with spinal cord injury: A randomized controlled trial.
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2014. Predictors of discrepancy between care recipients with early-stage dementia and their caregivers on perceptions of the care recipients' quality of life.
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2009. Improv ing the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial.
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2014. The effects of adult day services on family caregivers' daily stress, affect, and health: Outcomes from the Daily Stress and Health (DaSH)
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