Reducing the Impact of Dementia in America A Decadal Survey of the Behavioral and Social Sciences (2021) / Chapter Skim
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4 Caregivers: Diversity in Demographics, Capacities, and Needs
4 Caregivers: Diversity in Demographics, Capacities, and Needs
Pages 109-136
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From page 109... ...
The term "family caregivers" is used here to include the potentially large network of those who provide support and to distinguish them from those who are connected to the person with dementia through the formal health and direct care systems. The chapter provides an overview of the crucial work that family caregivers provide and their diverse demographics, experiences, and needs for support and training.
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From page 110... ...
In the United States, and indeed globally, there is a societal expectation that family members will provide care to their loved ones with dementia if they can, although cultural expectations and resources affect these decisions. In short, family caregivers fill a very substantial gap in care.
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From page 111... ...
. Results of the companion National Study on Caregiving indicate that in 2011, an estimated 17.7 million individuals were caregivers for an older adult who resided at home, in the community, or in a residential care setting (other than a nursing home)
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From page 112... ...
As discussed in Chapter 1, available data show that members of minority populations are more likely to develop dementia relative to their non-Hispanic White counterparts. Rates of family caregiving vary modestly across racial/ ethnic groups, according to survey data, with caregiving being most common among Hispanic populations (Family Caregiver Alliance, 2019)
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From page 113... ...
. For a person living with early-stage dementia, assistance may include organizing medical referrals to clarify diagnosis and prognosis, financial planning, help in identifying work and disability options for those still working, and emotional support with such challenges as declines in function or the stigma of dementia.
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From page 114... ...
. Like the people living with dementia who responded to this call, caregivers reported frustration with delays in obtaining a diagnosis for their loved ones, and
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From page 115... ...
Nonetheless, many reported experiencing stress related to managing conflicts with their work schedules and demands. Like persons with dementia (see Chapter 3)
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From page 116... ...
The focus here is on evidence about the caregiving experience and support and interventions for caregivers. The Caregiving Experience A substantial body of evidence documents both positive and detrimental effects of providing care for a person living with dementia (Gitlin et al., 2020; NASEM, 2016)
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From page 117... ...
For instance, spouses providing care report greater stress levels relative to adult child caregivers (Gaugler et al., 2015) , while caregivers who believe the care recipient is suffering physically or psychologically are more likely to experience depression (Schulz et al., 2008)
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From page 118... ...
Caregivers have been called upon to devise new ways of acquiring food and medicine and monitoring the health of family members with dementia without putting them at risk through normal human contact. Crucial services caregivers have provided for nursing home residents, including advocating for services, helping with feeding, organizing medical care, monitoring quality of care, and providing crucial human contact and affection, have all been compromised by COVID-based restrictions on visitation that have radically increased the isolation of people living in nursing homes (see Chapter 6)
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From page 119... ...
. However, researchers find the study of family caregivers challenging for reasons that include limitations of the available data, wide variation in the nature of family caregiving and the kinds of supports needed, and the multiple ways of defining people who provide care outside of institutional settings.
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From page 120... ...
These groups offer on line educational resources on such topics as the warning signs of dementia, stages of dementia, legal and financial planning, and when and how to intervene in response to dementia-related behavior. One example is the Family Caregiver Alliance, a national nonprofit network that offers guidance on physical care (e.g., bathing, dental care, dressing and grooming)
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From page 121... ...
Nevertheless, various types of supports have been developed. This section reviews the status of research on interventions to support caregivers and considers promising directions for future development addressing three key issues: care transitions, the use of technology to support caregiving, and approaches for addressing behavioral and psychological symptoms of dementia.
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From page 122... ...
assessed research reviews published between 2000 and 2019 and identified 4,112 articles that met their inclusion criteria.3 The authors found that there is evidence for the efficacy of many different types of interventions designed to support family caregivers, including psychoeducation, counseling, problem solving, skill building, social support, and respite. These interventions demonstrate benefits for caregivers' own health behaviors, depressive symptoms, self-confidence, well-being, and perception of burden.
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From page 123... ...
Few of the studies shed light on the mechanisms by which the interventions may yield benefits or on factors that may moderate their results, particularly how effects may vary across groups and circumstances. Gitlin and colleagues also found a paucity of caregiver intervention studies assessing caregivers' experiences with dementia stages other than the moderate, middle stage of clinical dementia symptoms or addressing longer-term effects on caregivers' health or well-being.
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From page 124... ...
systematic review of randomized controlled trial evidence on care interventions for persons living with dementia and their caregivers, as well as other evidence. The report notes positive developments in intervention research for dementia caregivers, and specifically the start of a crucial shift from focusing on the mere prevention of harm to the promotion of well-being and inclusion.
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From page 125... ...
The two options were hiring supplementary care or moving him to a nursing home. Need ing immediate coverage while we arranged ongoing 24-hour care (a substantial cost beyond the monthly charges for the memory care floor)
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From page 126... ...
These include multiple smartphone apps, including those designed to provide assistance in tracking medications, appointments, and documents, as well as supports for community building and encouragement for stressed individuals (American Seniors Housing Association, 2021)
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From page 127... ...
Mr. M returned home unharmed, but the family caregivers now wonder whether he should move to a skilled nursing facility.
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From page 128... ...
Even as the use of technology to support people living with dementia is increasing, some worry that its use may create other risks, such as by reducing human touch -- an important component of providing care for which technology cannot substitute (Prescott and Robillard, 2020)
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From page 129... ...
A significant portion of the available studies lack the methodological rigor that would support wide dissemination. There are also important aspects of the caregiving experience and its effects on both caregivers and people living with dementia that have not yet been documented and studied.
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From page 130... ...
• Training for physicians, nurses, direct care providers, and other team members in identifying caregiver stresses and providing information about relevant resources to assist them. • Examination of systemic barriers to communication between providers and caregivers and navigation of the health care system.
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From page 131... ...
• Improved understanding of care coordination, reduction of poorly managed care transitions, and identification of appropriate placements. • Development and evaluation of strategies for fostering supportive contact between family caregivers and nursing home residents.
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From page 132... ...
. The potential of wash-and-dry toilets to improve the toileting experience of nursing home residents.
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From page 133... ...
. Dementia Caregiver Intervention Research Now and into the Future: Review and Recommendations.
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From page 134... ...
. Improving caregiver well-be ing delays nursing home placement of patients with Alzheimer disease. Neurology, 67(9)
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From page 135... ...
. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: A systematic review.
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From page 136... ...
. Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers.
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