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Care to plan: an online tool that offers tailored support to dementia caregivers
- Authors:
- GAUGLER Joseph E., REESE Mark, TANLER Richard
- Journal article citation:
- Gerontologist, 56(6), 2016, pp.1161-1174.
- Publisher:
- Oxford University Press
Purpose of the Study: Even with the advent of evidence-based interventions, an ongoing concern in clinical practice is how to help dementia caregivers determine what type of support is best for them absent a laborious process of trial and error. To help address this practice gap, the present study developed and tested the feasibility of “Care to Plan” (CtP), an online resource for dementia caregivers (e.g., relatives or unpaid nonrelatives) that generates tailored support recommendations. Design and Methods: Care to Plan was developed using an iterative prototype and testing process with the assistance of a 29-member Community Advisory Board. A parallel-convergent mixed methods design (quan + QUAL) was used that included a post-CtP survey and a brief semistructured interview to capture in-depth information on the utility and feasibility of CtP. The sample included 30 caregivers of persons with dementia. Results: The integrated qualitative and quantitative data indicated that CtP was simple and easy to understand, the streamlined visual layout facilitated utility, and the individualized recommendations could meet the needs of users. Key barriers to use included the need for additional features (e.g., video introductions of caregiver support types) to further guide dementia caregivers’ potential use of tailored support. Implications: The multiple data sources underscore the high feasibility and utility of CtP. By describing, identifying, and prioritizing support, CtP could help to improve the care planning process for dementia caregivers. Future dissemination efforts should aim to demonstrate how CtP can be implemented seamlessly within current family caregiver support systems. (Publisher abstract)
Long-term adaptation to institutionalization dementia caregivers
- Authors:
- GAUGLER Joseph E., POT Anne Margriet, ZARIT Steven H.
- Journal article citation:
- Gerontologist, 47(6), December 2007, pp.721-729.
- Publisher:
- Oxford University Press
Longitudinal research in dementia has acknowledged the importance of transitions during the course of family caregiving. However, long-term adaptation to institutionalization has received little attention. This American study attempts to describe caregivers' adaptation (changes in stress, well-being, and psychosocial resources) to placement up to 4 years following institutionalization. Using data from the Caregiver Stress and Coping Study, this analysis constructed four longitudinal panels, each consisting of a pre-placement assessment and either two (n = 146), three (n = 109), four (n = 75), or five (n = 38) waves after placement. The study used growth curve models to examine longitudinal trajectories of adaptation in various measures of stress, global well-being, and psychosocial resources. The findings suggested sharper decreases in stressors (e.g., role overload) and indicators of negative mental health in the shorter term panels. However, more significant intraindividual variation existed in caregivers' adaptation to placement in the longer term panels (four and five waves of post placement). There is relative stability in caregiver long-term adaptation to institutionalization. However, the variability in adaptation emphasizes the need to target post placement clinical interventions to families most at risk for negative outcomes during the transition to institutional care.
Early community-based service utilizaton and its effects on instituionalization in dementia caregiving
- Authors:
- GAUGLER Joseph E., et al
- Journal article citation:
- Gerontologist, 45(2), April 2005, pp.177-185.
- Publisher:
- Oxford University Press
The present study attempts to determine whether utilizing community-based long-term-care services early in the dementia caregiving career delays time to nursing home placement. With a reliance on data from 4,761 dementia caregivers recruited from eight catchment areas in the United States and followed over a 3-year period, a Cox proportional hazards model was conducted that considered key components of the stress process (e.g., context of care, primary objective and subjective stressors, and resources), duration, and community-based long-term-care use. An analysis of interaction terms in the Cox regression model found that those individuals who utilized in-home help services earlier in their dementia caregiving careers were more likely to delay institutionalization. The findings suggest the practical importance and cost-effectiveness implications of early community-based service use, and they emphasize the role of timing when one is conceptualizing the proliferation of stress in the dementia caregiving career.
Dementia caregiving outcomes: the impact of caregiving onset, cognitive impairment and behavioral problems
- Authors:
- NIKZAD-TERHUNE Katherina A., GAUGLER Joseph E., JACOBS-LAWSON Joy
- Journal article citation:
- Journal of Gerontological Social Work, 62(5), 2019, pp.543-563.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
With a projected increase in the prevalence of Alzheimer’s disease (AD) and related dementias, family caregiving is steadily increasing. Caring for an individual with AD is characterized as a “career,” and within this career are a number of key transitions, including the onset of caregiving. Research reveals a number of negative emotional health outcomes for AD caregivers, including depression and role overload, but less research has examined the influence of key transitions on the emotional adaptation of caregivers. The purpose of this study is to examine how different patterns of caregiving onset (gradual and abrupt) impact emotional health outcomes for AD caregivers. This study also explores how care-recipient cognitive impairment and behavioural problems moderate these relationships. Cross-sectional, quantitative data from 100 caregivers completing self-administered surveys were used. A series of one-way ANOVAs and multiple regression analyses were conducted to address study aims. Results indicate that care-recipient cognition and behavioural problems moderated the relationship between caregiving onset and emotional health outcomes for caregivers who experienced a more abrupt entry into the caregiving role. Results suggest the importance of considering different onset transitions and moderating factors within the caregiving career to target clinical interventions. Implications for social work practice are discussed. (Edited publisher abstract)
Families and assisted living
- Authors:
- GAUGLER Joseph E., KANE Robert L.
- Journal article citation:
- Gerontologist, 47(3), December 2007, pp.83-99.
- Publisher:
- Oxford University Press
Despite growing research on assisted living (AL) as a residential care option for older adults, the social ramifications of residents' transitions to AL are relatively unexplored. This article examines family involvement in AL, including family structures of residents, types of involvement from family members living outside the AL facility, and outcomes for these family members. The authors reviewed current literature utilizing the MEDLINE, PsycINFO, and CINAHL databases to identify AL studies that examined issues pertaining to families or informal care. Following the screening of abstracts, 180 reports were retrieved for further review and 62 studies selected for inclusion. Families visit residents frequently and provide a wide range of instrumental assistance but provide only minimal personal care. Studies of family outcomes indicated relatively high satisfaction but potential care burden as well. How family care and involvement occurs in AL in relation to formal care provision and whether various types of formal/informal care integration influence family outcomes remains unclear. The authors suggest a research agenda that attempts to tease out causal relationships for family involvement, differentiate family roles, and implement longitudinal analyses for a range of family outcomes.
The effects of duration of caregiving on institutionalization
- Authors:
- GAUGLER Joseph E., et al
- Journal article citation:
- Gerontologist, 45(1), February 2005, pp.78-89.
- Publisher:
- Oxford University Press
The objective in this analysis was to determine how the duration of caregiving interacts with key care demands (i.e., severity of problem behaviors) to influence the institutionalization of individuals suffering from dementia. The authors utilized multiregional data from 4,761 caregivers of individuals with dementia over a 3-year period. We conducted multinomial logistic and Cox proportional hazards analyses to determine the moderating effects of duration on behavior problems when institutionalization was predicted. Baseline covariates included the context of care, primary objective stressors, primary subjective stressors, resources, and global outcomes. The Duration of care x Behavior problems interaction term was not significant in the multinomial regression or Cox hazards models. However, main effects models demonstrated that more recent caregivers were more likely to institutionalize individuals with dementia than respondents in different stages of the caregiving career. The results emphasize the need to (a) broaden scientific conceptualizations to consider duration of care as integral; (b) refine targeting when interventions are administered early in the dementia caregiving process; and (c) understand patterns of attrition when caregiver adaptation is modeled over time.
Adult day service use and reductions in caregiving hours: effects on stress and psychological well-being for dementia caregivers
- Authors:
- GAUGLER Joseph E., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(1), January 2003, pp.55-62.
- Publisher:
- Wiley
The objective of this study was to determine whether adult day service use interacts with decreases in primary caregiving hours (i.e. the time caregivers spent on activities of daily living/instrumental activities of daily living, memory problems, and behavior problems for patients) to alleviate caregiver stress and negative mental health over time. The findings suggest that adult day services are potentially effective in restructuring caregiving time and providing respite to family members.
The effectiveness of adult day services for disabled older people
- Authors:
- GAUGLER Joseph E., ZARIT Steven H.
- Journal article citation:
- Journal of Aging and Social Policy, 12(2), 2001, pp.23-47.
- Publisher:
- Routledge
- Place of publication:
- Philadelphia, USA
Adult day care has attracted a considerable amount of attention among researchers, practitioners, and policy makers in the US. Reviews research that determines the effectiveness of adult day services in improving clients' functioning, alleviating care giver stress, and delaying nursing home placement. The strengths and limitations of the research are considered. Concludes with a discussion of policy-relevant issues that must be addressed when determining the effectiveness of adult day services.
Six-month effectiveness of remote activity monitoring for persons living with dementia and their family caregivers: an experimental mixed methods study
- Authors:
- GAUGLER Joseph E., et al
- Journal article citation:
- Gerontologist, 59(1), 2019, pp.78-89.
- Publisher:
- Oxford University Press
Background and Objectives: This study aimed to evaluate if and how remote activity monitoring (RAM) improves caregiver outcomes for family members providing care for persons living with Alzheimer’s disease or a related dementia (ADRD). Research Design and Methods: an embedded experimental mixed methods study of 132 persons living with ADRD and their family caregivers (n = 64 randomly assigned to RAM treatment condition). In addition to baseline and 6-month quantitative survey data on context of care, primary objective stressors, resources, self-efficacy/competence, and distress collected from caregivers, 6-month RAM review checklists contained open-ended, qualitative information on perceived acceptability of the technology. Results: The RAM system did not exert statistically significant effects on caregiving outcomes over a 6-month period. However, qualitative analyses identified several potential moderators of RAM technology effectiveness that were subsequently tested in post-hoc repeated measures analyses of variance. Caregivers who utilized RAM technology and cared for relatives with: (a) less severe cognitive impairment; and (b) difficulty navigating around the home were more likely to indicate statistically significant increases in competence and self-efficacy, respectively. Discussion and Implications: This study found that the early months spent calibrating and modifying RAM are potentially challenging for families, which may prevent this technology from improving caregiving outcomes during initial months of use. Remote activity monitoring may work optimally for caregivers of persons living with ADRD in specific situations (e.g., earlier stages of dementia; wandering risk), which suggests the need for appropriate needs assessments that can better target such innovations. (Edited publisher abstract)
Useful services for families: research findings and directions
- Authors:
- ZARIT Steven H., GAUGLER Joseph E., JARROTT Shannon E.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 14(3), March 1999, pp.165-181.
- Publisher:
- Wiley
A major principle of gerontological practice and policy has been that community-based services relieve stress on family caregivers and delay or prevent institutionalisation of frail elders. Examines the benefits of community-based services from four perspectives: relief for family care-givers; benefits to older clients; delay or prevention of institutionalisation; and cost-effectiveness or cost-benefits of a service. Results found the studies in which clients and/or their families received adequate amounts of help showed more consistently positive outcomes. There is little evidence, however, to suggest that community services delay placement.