Families Caring for an Aging America (2016) / Chapter Skim
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3 Family Caregiving Roles and Impacts
3 Family Caregiving Roles and Impacts
Pages 73-122
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From page 73... ...
It describes the trajectory and dynamic nature of caregiving over time, the increasing complexity and scope of caregiver responsibilities including the issues involved in family caregivers' role as surrogate decision makers, and 73
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From page 74... ...
The committee distinguished between two subgroups of NSOC family careivers: those who help an older adult because of health or g functioning reasons and those caregivers who help "high-need" older adults. "High-need" refers to family caregivers of individuals who have probable dementia or who need help with at least two self-care activities (i.e., bathing, dressing, eating, toileting, or getting in and out of bed)
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From page 75... ...
Appendixes F and G relate the experiences of several family caregivers: a husband, daughter, and family caring for older adults with advanced Alzheimer's disease and a wife helping to provide complex cancer treatment to her husband in a rural area. 1 See Chapter 2, Table 2-3.
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From page 76... ...
Rapid transitions in the caregiving role may occur in the context of advanced cancer as well, as the care recipient moves from management of advanced cancer symptoms (e.g., pain, sleep disturbance, and lack of appetite) through a succession of changes in functional status and self-care ability, leading ultimately to end-of-life care and bereavement.
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FIGURE 3-1 An example of a dementia care trajectory. NOTE: CG = caregiving.
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How much family involvement will be necessary and how will caregiving roles within the family or broader social network be negotiated? What are the risks, costs, and benefits to whom over time?
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For example, there is considerable variability in conceptions of dementia depending on the culture and educational level and socioeconomic status of the family caregivers (Hinton, 2002)
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Reassessment is especially important during transitional periods. ROLES OF FAMILY CAREGIVERS Despite the unique nature of any given caregiver's role over time, broad domains of activity characterize family caregiving.
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• Help getting around inside or outside Emotional and social support • Provide companionship • Discuss ongoing life challenges with care recipient • Facilitate and participate in leisure activities • Help care recipient manage emotional responses • Manage family conflict • Troubleshoot problems Health and medical care • Encourage healthy lifestyle • Encourage self-care • Encourage treatment adherence • Manage and give medications, pills, or injections • Operate medical equipment • Prepare food for special diets • Respond to acute needs and emergencies • Provide wound care Advocacy and care coordination • Seek information • Facilitate person and family understanding • Communicate with doctors, nurses, social workers, pharmacists, and other health care and long-term services and supports (LTSS) providers • Facilitate provider understanding • Locate, arrange, and supervise nurses, social workers, home care aides, home-delivered meals, and other LTSS (e.g., adult day services)
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From page 82... ...
. For example, cancer caregivers were more likely than dementia caregivers to provide help in getting in and out of bed, whereas dementia caregivers were more likely to deal with incontinence.
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. Help with self-care tasks is a frequent and sometimes daily role for some caregivers; 17.9 percent of caregivers reported helping with self-care every day or most days.
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Keep track of meds 61.2 57.4 65.4 36.8 Care recipient take 6.3 13.3 12.0 5.3 shots or injections Manage medical tasks 9.2 17.2 20.5 6.0 With special diet 25.8 40.5 30.9 22.9 With skin care 17.0 34.0 35.2 18.2 wounds Make medical 74.6 59.1 75.0 52.0 appointments Speak to medical 65.9 52.1 71.6 47.2 provider Add/change health 29.3 24.1 30.9 22.5 insurance With other insurance 37.7 35.5 47.0 27.6 matters Population represented 2,931 2,745 2,828 9,190 (in 1,000s) NOTES: Includes family caregivers of Medicare beneficiaries age 65 and older in the continental United States who resided in community or residential care settings (other than nursing homes)
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From page 85... ...
Older adults' homes have become de facto clinical care settings where caregivers are performing an array of nursing or medical tasks once provided only by licensed or certified professionals in hospitals and nursing homes (Reinhard and Feinberg, 2015; Reinhard et al., 2012)
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. Advocacy and Care Coordination Family caregivers often serve as advocates and care coordinators.
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. Family caregivers continue to be involved with older adults who move into residential facilities (e.g., assisted living facilities and nursing homes)
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. Care recipients with cognitive impairments may require surrogate decision making, as discussed below, although individuals with mild to moderate cognitive impairment often have the ability to express preferences and make choices (Feinberg and Whitlatch, 2001; Whitlatch, 2008)
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From page 89... ...
. Multiple legal tools such as health care and financial powers of attorney, living wills, and personal care agreements can help family caregivers and their families to better outline the preferences of the care recipient and the scope of his or her caregiver's decision making authority (Sabatino, 2015)
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From page 90... ...
The scope, time commitment, and complexity of the family caregiving role make it unique in the care of older adults. No single health care or social service discipline is charged with providing assistance with self-care and household tasks, providing emotional support, and performing health and medical tasks around the clock, 7 days per week; advocating for an older adult's needs, values, and preferences in multiple health care and LTSS settings; and functioning in a legal capacity as a surrogate decision maker.
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From page 91... ...
Nevertheless, the body of evidence on negative effects is far larger than that on positive effects, as researchers have sought to assess the public health implications of caregiving and identify vulnerable at-risk caregivers. Documenting the adverse effects of family caregiving on both caregivers and care recipients is a requisite first step in developing interventions and public policy to address the needs of caregivers.
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From page 92... ...
NOTES: Includes family caregivers of Medicare beneficiaries age 65 and older in the continental United States who resided in community or residential care settings (other than nursing homes) and received help with self-care, mobility, or household activities for health or functioning reasons.
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From page 93... ...
and received help with self-care, mobility, or household activities for health or functioning reasons. SOURCES: Data from the 2011 NHATS and the companion NSOC.
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. Although differences in psychological well-being between whites and racial and ethnic subgroups are generally small, several systematic reviews report that African American caregivers tended to report lower levels of caregiver burden and depression than white, non-Hispanic caregivers while Hispanic and Asian American caregivers reported more depression than white caregivers (Nápoles et al., 2010; Pinquart and Sörensen, 2005)
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. Indeed, the greater the hands-on care provided by the family caregivers, the higher their distress, and the lower their satisfaction with care provided by the nursing home staff (Tornatore and Grant, 2004)
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. Positive psychological effects may mitigate some of the negative effects of caregiving, as several studies find that positive effects are associated with lower levels of burden and depression and better overall mental health.
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. For example, in a review of 176 studies of family caregivers of older adults assessing the physical health of caregivers, Pinquart and Sörenson (2007)
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• Metabolic measures (body mass, weight, cholesterol, insulin, glucose, transferrin) • Speed of wound healing • Telomere erosion Health Behaviors • Sleep, diet, exercise, smoking Some evidence supporting impaired health • Self-care, preventive care, medical behaviors in all domains; evidence is strongest compliance for sleep problems in dementia caregivers NOTE: ACTH = adrenocorticotropic hormone.
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From page 99... ...
The physical health status and outcomes for caregivers may be relatively independent of the caregiving role or related to individual characteristics that existed prior to assuming the caregiving role, such as socioeconomic status, health habits, and prior illness (Brown and Brown, 2014; Robison et al., 2009; Roth et al., 2015; Schulz and Sherwood, 2008)
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From page 100... ...
found increased risk of mortality (63 percent) among older spousal caregivers, but only if they reported emotional strain in the caregiving role.
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. Although reliable data on injury rates among caregivers are not available, the fact that paid home health aides as well as home care nursing and rehabilitation personnel sustain high rates of work-related musculoskeletal disorders suggests that this is likely to be a problem among family caregivers as well.
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From page 102... ...
suggested that healthpromoting and self-care behaviors may be neglected by caregivers due to their caregiving duties, lack of time and energy to take care of themselves, or breakdown of social networks; health risk behaviors also may be triggered by care recipient behaviors or by coping mechanisms induced by the stress of caregiving. For example, in a study of dementia caregivers, nearly one-third frequently or occasionally missed medication doses and nearly a half did not keep their own health care appointments (Wang et al., 2015)
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From page 103... ...
found that dementia caregivers reported more risky health behaviors than non-caregivers. Although caregivers may have had poor health habits before caregiving (Vitaliano et al., 2003)
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Family caregivers who help with self-care tasks and/or care for persons with dementia report more limitations in their ability to spend time for themselves when compared to caregivers with less intense care responsibilities. As shown in Table 3-5, high-need caregivers who care for someone with probable dementia and with self-care needs report the highest level of restriction in their ability to visit with friends and family, to attend religious services, to go out for dinner or movies, or to do volunteer work.
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Doing volunteer work 8.5 5.8 15.1 4.8 Population represented (in 2,931 2,745 2,828 9,190 1000s) NOTES: Includes family caregivers of Medicare beneficiaries age 65 and older in the continental United States who resided in community or residential care settings (other than nursing homes)
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. Anecdotal evidence in clinical and research contexts suggests that a small percentage of family caregivers experience severe conflict related to caregiving, resulting in abusive interactions with other family members and even divorce or other legal actions.
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The extent to which family caregivers experience abuse, by the older adults they care for, is not known. More research is needed on the prevalence of elder mistreatment among caregivers, the type of mistreatment they commit, the circumstances under which it occurs, and the factors that mitigate mistreatment or neglect.
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From page 108... ...
, living with the care recipient, and challenging behavioral symptoms in the care recipient are relatively robust predictors of negative psychological effects. The intensity of caregiving has been found to be a consistent predictor of negative psychological effects in population-based studies.
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From page 109... ...
• Coordinating care (appointments, interacting with providers, dealing with health insurance) Caregiver's perceptions of the care recipient's physical, psychological, and existential suffering • Lack of choice in taking on the caregiving role Caregiver's health and physical functioning • Poor/fair self-rated health • Feeling stressed • Having three or more medical conditions • Sleep problems • Difficulty breathing • Pain • Limited leg/arm strength • Unwanted weight lost Caregiver's social and professional supports • No one to help with caregiving • No one to talk to • No time to socialize with others • No access or use of professional support/care services Care recipient's home physical environment • Lacks appropriate home modifications • Stairs, clutter SOURCES: Adelman et al., 2014; Pinquart and Sörensen, 2003; Zarit et al., 2010.
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From page 110... ...
Whether an individual has a choice in taking on the caregiving role may also make a difference. Nearly half of all caregivers report that they had no choice in taking on the caregiving role and lack of perceived choice is associated with increased levels of burden and depression (Reinhard et al., 2012; Schulz et al., 2012)
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From page 111... ...
In today's health care and social service systems, providers expect family caregivers -- with little or no training -- to handle daunting technical procedures and equipment for seriously ill care recipients at home. Some family caregivers express concerns about making a life-threatening mistake.
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From page 112... ...
It can instill con C fidence, provide meaning and purpose, enhance skills, and bring the caregiver closer to the older adult. • owever, compared to non-caregivers, family caregivers of older adults H are more likely to experience emotional distress, depression, anxiety, or social isolation; report that they are in poor physical health; and have elevated levels of stress hormones and higher rates of chronic disease.
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2004. Time and diffi culty of tasks provided by family caregivers of stroke survivors.
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2005. Risk factors for potentially harmful informal caregiver behavior.
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2014. Does becom ing an ADL spousal caregiver increase the caregiver's depressive symptoms?
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2009. Problems and benefits reported by stroke family caregivers: Results from a prospective epidemio logical study.
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2002. Improving care for ethnic minority elderly and their family caregivers across the spectrum of dementia severity.
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2014. Task difficulty and life changes among stroke family caregivers relationship to depressive symptoms.
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2012. Home alone: Family caregivers providing complex chronic care.
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2010. Measures of psychologi cal stress and physical health in family caregivers of stroke survivors: A literature review.
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2004. Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving.
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2010. The structure of risk factors and outcomes for family caregivers: Implications for assessment and treatment.
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