A New Stage of the Caregiving Career: Informal Caregiving After Long-term Institutionalization.

BACKGROUND AND OBJECTIVES: The "unexpected career" of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. RESEARCH DESIGN AND METHODS: Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. RESULTS: Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. DISCUSSION AND IMPLICATIONS: By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving.

Challenges to community transitions through Money Follows the Person.

OBJECTIVE: To examine the effects of transition challenges on the success and timeliness of transitions from institutions to community living for long-stay participants in the Money Follows the Person (MFP) Rebalancing Demonstration and determine whether outcomes vary by age and disability. DATA SOURCE: Secondary data on transition challenges for individuals enrolled in Connecticut's MFP program between December 2008 and December 2017. STUDY DESIGN: Challenges were analyzed for older adults, people with mental health disability, and people with physical disability. Bivariate and multivariate analyses investigated which transition challenges and selected demographic variables predict transition versus closure and length of transition period for each group. DATA EXTRACTION METHODS: The sample includes 3506 persons who attempted transition from institutions to community living and whose case concluded with transition or closure from 2015 to 2017. PRINCIPAL FINDINGS: The association between most transition challenges and the ability of long-stay institutional residents to return to the community, and to do so in a timely manner, varies significantly among older adults and younger persons with physical or mental health disabilities. For all groups, however, consumer engagement challenges predicted closure without transition (OR: 1.3-3.9) and housing challenges predicted longer transition periods (84-132 days). Length of institutional stay was associated with both outcomes for older adults and persons with physical disability. Other challenges, such as issues with services and supports, differed among the three groups on both outcomes. CONCLUSIONS: Knowledge of the effects of transition challenges on success and timeliness of transition for each group allows program managers and health and service providers to focus resources on addressing the most serious challenges. Particular emphasis should be placed on consumer engagement and housing challenges, and on targeting persons for transition early in their institutional stay. Federal and state transition programs can benefit by individualizing supports for residents to yield successful outcomes.

Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration.

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver's perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.

Connecticut's 'Money Follows The Person' Yields Positive Results For Transitioning People Out Of Institutions.

A centerpiece of federal and state efforts to rebalance long-term services and supports to enhance consumer choice and contain costs, the federal Money Follows the Person Rebalancing Demonstration helps qualified individuals living in institutions make the transition to life in the community. The Connecticut Money Follows the Person program is an unusually rich source of data, with information on the 2,262 people who transitioned to the community under that state's program during 2008-14. Responses to participant surveys completed before and six, twelve, and twenty-four months after transition indicate that, for the majority of respondents who remained in the community, quality of life and life satisfaction improved significantly after transition, and they stayed high. About half of the participants visited hospitals or emergency departments after transition; however, only 14 percent had returned to an institution one year after transition. Predictors of reinstitutionalization included some not previously observed: mental health disability, difficulties with family members before transition, and not exercising choice and control in daily life. These and other findings suggest multiple ways in which policy makers can target efforts to strengthen transition programs that can meaningfully improve people's lives while containing costs.

Transition from home care to nursing home: unmet needs in a home- and community-based program for older adults.

A major effort is under way nationally to shift long-term care services from institutional to home- and community-based settings. This article employs quantitative and qualitative methods to identify unmet needs of consumers who transition from a statewide home- and community-based service program for older adults to long-term nursing home residence. Administrative data, care manager notes, and focus group discussions identified program service gaps that inadequately accommodated acute health problems, mental health issues, and stressed family caregivers; additional unmet needs highlighted an inadequate workforce, transportation barriers, and limited supportive housing options. National and state-level policy implications are considered.

A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation.

OBJECTIVES: Informal caregivers provide the majority of long-term care. This study examined six health and psychosocial outcomes of caregiving, in the context of multiple characteristics of the caregiving situation, in a representative, statewide sample. METHODS: Data came from 4,041 respondents to the 2007 Connecticut Long-Term Care Needs Assessment. Analyses investigated whether caregiving negatively affects depressive symptoms, health, missing work, and social isolation. Logistic regressions tested the independent effects of caregiver characteristics and conditions of the caregiving situation on these health and psychosocial outcomes. RESULTS: Caregivers rate their health better than noncaregivers and do not report more depressive symptoms or social isolation. Living with the care receiver, inadequate income, and care receivers' unmet need for community-based long-term care services relate to multiple negative outcomes. Care receiver memory problems and caregiver/care receiver relationship do not relate to health or psychosocial outcomes when these other factors are considered. DISCUSSION: Caregiving per se does not lead to symptoms of depression, poor health, or social isolation. Many caregivers do need supports in training and education, respite, and physical and mental health care. Such programs should provide outreach to caregivers facing specific stressful conditions, as not all caregivers experience negative consequences.

Partners in caregiving in a special care environment: cooperative communication between staff and families on dementia units.

PURPOSE: This article reports the results of a randomized, controlled evaluation of Partners in Caregiving in a Special Care Environment, an intervention designed to improve communication and cooperation between staff and families of residents in nursing home dementia programs. DESIGN AND METHODS: Participants included 388 family members and 384 nursing staff members recruited from 20 nursing homes, randomly assigned to treatment and control conditions. Project staff conducted training sessions on communication and conflict-resolution techniques with two groups at the intervention sites: staff and residents' family members, followed by a joint meeting with facility administrators. RESULTS: Families, staff, residents, and facility programs in the intervention facilities all demonstrated positive outcomes from program participation. Families experienced significant improvement in communicating with staff and in staff behaviors toward them, and spouses of residents increased their care involvement. Staff reported reduced conflict with families and reduced depression; burnout for nurses increased for individuals in the control group but not those in the treatment group. Behavioral symptoms decreased for residents, and facilities implemented more family-focused programs. IMPLICATIONS: Effective staff and family partnerships are critical in caring for residents with dementia. The Partners in Caregiving in a Special Care Environment program is an evidence-based intervention that enables these partnerships to develop and thrive, translating into improved experiences for residents, families, and staff.