Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

Correlates of caregiving satisfaction: prerequisites to elder home care

In this comparative study, a path analytic model was used to identify variables predictive of satisfaction in providing care to elderly family members, and to determine differences in the predictor variables between past and present caregivers as potential precipitators of institutionalization. Nineteen current caregivers and 29 past caregivers were recruited from health agencies in a rural area. Demographic predictors of caregiving satisfaction included age and sex of the client and age of the caregiver; psychological problems of the client influenced caregiver satisfaction. Measures of situational stress (medical, psychological, environmental) revealed that the past caregivers had higher psychological and environmental stress and less life satisfaction than current caregivers. Additional analysis revealed that the most common pattern of nursing home admission was hospitalization of the client for physical illness, with subsequent physician-recommended nursing home placement. Areas of identified need for preventing premature relinquishing of the caregiving role are discussed.     

Wholism for aging families: meeting needs of caregivers

Family caregiving of a frail older person is an increasingly common phenomenon. Caregivers are confronted with new roles and responsibilities that provide both challenges and opportunities. Family issues that require expert nursing attention include role reversal, unresolved conflicts, caregiver immersion, elder mistreatment, and caregiving from a distance. Comprehensive geriatric assessment provides a foundation for intervening with families. Nurses are instrumental in providing a family perspective that meets the needs of frail older persons and their caregivers thus providing wholistic care.     

Nurses as caregivers of elderly relatives: negotiating personal and professional boundaries.

Recent changes in patterns of care provision for the elderly have led to an increasing reliance on family care. Although caring has been found to be a central and common feature of the personal and professional lives of many women, this paper discusses the challenges faced by women who provide care in both their work and their family lives ("double-duty caregivers"). The author argues that the separation of paid caregiving and unpaid family caregiving in the conceptualization of elder care is problematic, particularly for health-care professionals. Findings from a qualitative study with registered nurses providing care to elderly relatives revealed that these women are located at the juncture of public and private domains of caregiving, where they must constantly negotiate the boundaries between their professional and personal caregiving roles. The findings highlight the need to explore the interface between women's family and work lives and the need for policies that promote the health of double-duty caregivers.     

Exploration of factors related to direct care and outcomes of caregiving. Caregivers of terminally ill older persons.

The purpose of this study was to explore factors related to the amount of direct care and outcomes of caregiving experienced by family members of terminally ill older persons using secondary analysis. A total of 55 caregivers whose care receivers were aged greater than or equal to 65 years were selected from Kirschling's (1988) hospice sample. The majority of caregivers were female (75%) and the spouse of the care receiver (66%). The duration of caregiving ranged from 1 to 180 months. Most care receivers were diagnosed with cancer (84%) and had been ill for 2-360 months (mean = 30.2). The mean length of time in hospice for care receivers was 2.4 months. Caregivers most frequently provided little extra tasks that were least difficult, least upsetting, and easier to provide. Behavioral problem tasks were least frequently provided but were reported as the most difficult, tiring, upsetting, and hardest to provide. Caregivers whose care receivers had been in hospice for greater than 34 days reported having to provide more communication tasks than caregivers whose ill older family members had been in hospice less than 34 days. Long-term caregivers (providing care for greater than 9 months) whose care receivers had been in hospice for greater than 34 days provided significantly fewer personal care tasks than short-term caregivers. Finally, there were no significant effects for duration of caregiving and length of time in hospice on outcomes of caregiving.     

Loneliness as a predictor of quality of life among older caregivers

AIM: This paper reports a study investigating quality of life in relation to loneliness, caregiving, social network, gender, age and economic status among caregiving men and women in a population-based sample aged 75 years or older. BACKGROUND: Because of demographic changes, in the future more care for older people will be given by informal caregivers who are themselves older. Being old and caring for another older person may affect various aspects of life, such as physical and emotional health and decreased time for respite, which may affect social life and quality of life. METHOD: A postal questionnaire including the Short Form Health Survey was used. The sample consisted of 4278 people, aged 75 years and over, living in Sweden. Of these, 783 (18%) were caregivers. FINDINGS: Caregivers had a larger social network and reported feelings of loneliness less often than non-caregivers. Forty per cent of caregivers helped every day. There were gender differences in experiences of loneliness during the last year, with the frequency of intense feelings of loneliness being higher among women. Loneliness and a small or non-existent network were significantly associated with low quality of life among caregivers, as well as in the total sample. The results showed significant association between loneliness, weak social network and low mental quality of life. CONCLUSIONS: The fact that loneliness was the most important factor predicting low quality of life among caregivers, as well as older people in general, indicates that it is crucial in the care of older people. From a nursing perspective, the findings indicate the advantage of helping older people to keep up and develop their social networks. Nursing care should involve steps to maintain the social network before an older person becomes too weak, since decreased health status makes social contacts more difficult.     

Examining the perspectives of family members involved in the delivery of palliative care at home

This ethnographic study examined the social context of home-based palliative caregiving. Data were composed of observation field notes, interviews, and textual documents, and were analyzed using constant comparative methods. Findings show that home-based palliative caregiving resulted in life-enriching experiences for many caregivers. However, assumptions about dying at home and health care reforms resulted in some caregivers feeling "pressured" to provide home care, and consequently, left them feeling their obligations to care were exploited by the health care system. Shifts toward providing care closer to home not only changed caregivers, but also changed the home setting where palliative care was provided. Findings indicate a need for interventions designed to improve support for caregivers at home, and to explore how assumptions influence and sometimes drive the provision of home health care.     

The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers’ level of collaboration with nurses was significantly associated with their preparedness for caregiving.     

Identification of a Cluster of Nursing Diagnoses for a Caregiver Support Group

Caregivers providing home care for the elderly are an "at-risk" population because of the multitude of demands placed on them. A cluster of nursing diagnoses, thought to be representative of problems and needs encountered by the community of caregivers, is identified. The diagnoses were developed from the perspective of a community (the support group), yet with recognition of the uniqueness of each caregiving relationship within the group. This cluster of diagnoses has provided the focus for program planning for the support group. Group facilitators became more aware of the range of diffi-culties encountered by the caregivers and gained insight that helped in selecting topics of interest for the informational suggeslions provided at the monthly group meetings. Heightened awareness of this cluster of diagnoses can enable healthcare providers to belter assist caregivers in assuming or continuing in that role. Accurate diagnosis and appropriate intervention relative to the needs of this group may enhance their quality of life and enable them to better fulfill their caregiving responsibilities.     

Identification of a cluster of nursing diagnoses for a caregiver support group.

Caregivers providing home care for the elderly are an "at-risk" population because of the multitude of demands placed on them. A cluster of nursing diagnoses, thought to be representative of problems and needs encountered by the community of caregivers, is identified. The diagnoses were developed from the perspective of a community (the support group), yet with recognition of the uniqueness of each caregiving relationship within the group. This cluster of diagnoses has provided the focus for program planning for the support group. Group facilitators became more aware of the range of difficulties encountered by the caregivers and gained insight that helped in selecting topics of interest for the informational suggestions provided at the monthly group meetings. Heightened awareness of this cluster of diagnoses can enable healthcare providers to better assist caregivers in assuming or continuing in that role. Accurate diagnosis and appropriate intervention relative to the needs of this group may enhance their quality of life and enable them to better fulfill their caregiving responsibilities.     

Creating a conceptual model for family caregivers of older adults intervention research: A narrative review of learned resourcefulness,resourcefulness, and the transtheoretical model

Providing and maintaining optimal care is challenging for older family caregivers who are caring for disabled older adults. Learned Resourcefulness can facilitate family caregivers' self-help strategies, and Resourcefulness can facilitate help-seeking from others. However, little is known about how older family caregivers can effectively maintain and adapt self-help and help-seeking strategies over time, especially as the dynamic nature of caregiving for disabled older adults demands change. To this end, the Transtheoretical model (TTM) provides useful constructs that address family caregivers' readiness to change their self-help and help-seeking behaviors. This paper reviews relevant literature regarding Learned Resourcefulness, Resourcefulness, and the TTM. The proposed conceptual model incorporates constructs from the TTM integrated with Learned Resourcefulness and Resourcefulness strategies to aid in the development and testing of interventions that are designed to promote the quality of life and health of older family caregivers while they are providing care to disabled older adults.     

The effect of role-taking ability on caregiver-resident mealtime interaction.

In this qualitative study of mealtime in a nursing home, data were collected on the verbal and nonverbal interaction between certified nursing assistants (CNAs) and completely eating-dependent residents. Although some caregivers were seen to give care in a creative, empathetic manner, others were task-driven and mechanistic. The difference in caregiving was, in part, accounted for by the degree to which individual caregivers were able to engage in role taking, that is, the ability to see the world from the resident's perspective. Recommendations for enhancing role-taking ability include (a) asking caregivers to reflect on their own mealtime experiences, (b) encouraging staff to eat with residents, (c) having staff practice feeding one another, and (d) providing role modeling and supervision by professional nursing staff at mealtime.     

Social support and strain of family caregivers of older adults

To assess the direct effects and interactive models of social support, caregivers to functionally impaired older adults were identified by hospital personnel. Within a week of referral, family caregivers were interviewed in the home about strain, depressive symptomatology, caregiving appraisal, informal social support, and coping. Caregiving appraisal significantly explained strain and depressive symptomatology. The interaction of social support with strain did not moderate or lessen depressive symptomatology. These findings suggest that nursing continue to examine the effect of home health care on strain and depressive symptomatology of caregivers of older adults.     

Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC)

The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N = 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CG groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups.