Ellen K. Mahoney

Development and testing of the resistiveness to care scale

A conceptual model and objective scale for measuring resistiveness to care in individuals with advanced dementia of the Alzheimer type (DAT) were empirically generated from the perspective of nursing staff caregivers and through observation of residents with DAT. The resistiveness to care scale (RTC-DAT) was judged to have content validity and reduced to 13 items. Quantifiable scoring procedures and methods for rating videotapes and conducting clinical observations were developed. The RTC-DAT was tested with 68 subjects at three sites. The RTC has a range of 0-156. Initial testing provided reliability estimates of .82-.87 for internal consistency and good to excellent kappas. Criterion-related validity with observed discomfort and construct validity by factor analysis support the RTC-DAT. Measurement issues and recommendations for use in research are discussed.

An intervention to reduce care‐resistant behavior in persons with dementia during oral hygiene: a pilot study

The primary purpose of this pilot study was to test the feasibility of an intervention designed to reduce care-resistant behaviors (CRBs) in persons with moderate-to-severe dementia during oral hygiene activities. The intervention, Managing Oral Hygiene Using Threat Reduction (MOUTh), combined best oral hygiene practices with CRB reduction techniques. Oral health was operationalized as the total score obtained from the Oral Health Assessment Tool (OHAT). CRB was measured using a refinement of the Resistiveness to Care Scale. Seven nursing home residents with dementia received twice daily mouth care for 14 days. The baseline OHAT mean score of 7.29 (SD = 1.25) improved to 1.00 (SD = 1.26, p < .001); CRB improved from 2.43 CRBs/minute (SD = 4.26) to 1.09 CRBs/minute (SD = 1.56, t = 1.97, df 41, p= .06). The findings from this pilot study suggest that the MOUTh intervention is feasible and reduced CRBs, thus allowing more effective oral care.

Reducing care-resistant behaviors during oral hygiene in persons with dementia

BackgroundNursing home residents with dementia are often dependent on others for mouth care, yet will react with care-resistant behavior when receiving assistance. The oral health of these elders deteriorates in the absence of daily oral hygiene, predisposing them to harmful systemic problems such as pneumonia, hyperglycemia, cardiac disease, and cerebral vascular accidents. The purpose of this study is to determine whether care-resistant behaviors can be reduced, and oral health improved, through the application of an intervention based on the neurobiological principles of threat perception and fear response. The intervention, called Managing Oral Hygiene Using Threat Reduction, combines best mouth care practices with a constellation of behavioral techniques that reduce threat perception and thereby prevent or de-escalate care-resistant behaviors.Methods/DesignUsing a randomized repeated measures design, 80 elders with dementia from 5 different nursing homes will be randomized at the individual level to the experimental group, which will receive the intervention, or to the control group, which will receive standard mouth care from research team members who receive training in the proper methods for providing mouth care but no training in resistance recognition or prevention/mediation. Oral health assessments and care-resistant behavior measurements will be obtained during a 7-day observation period and a 21-day intervention period. Individual growth models using multilevel analysis will be used to estimate the efficacy of the intervention for reducing care-resistant behaviors in persons with dementia, and to estimate the overall efficacy of the intervention using oral health outcomes. Activity-based costing methods will be used to determine the cost of the proposed intervention.DiscussionAt the conclusion of this study, the research team anticipates having a proven intervention that prevents and reduces care-resistant within the context of mouth care. Long-term objectives include testing the effect of the intervention on systemic illnesses among persons with dementia; examining the transferability of this intervention to other activities of daily living; and disseminating threat reduction interventions to nursing home staff, which may radically change the manner in which care is provided to persons with dementia.Trial RegistrationClinicalTrials.gov: NCT01363258

“It just took the pressure off”: The voices of Veterans’ family caregivers in a participant-directed program

ABSTRACT The Veteran-Directed Home and Community Based Services Program (VD-HCBS) operates using a participant-direction approach, allowing Veterans to self-direct services. Only a small body of literature has explored the impact of these programs on caregivers. This study aimed to explore the experiences of caregivers in VD-HCBS. Telephone focus groups and interviews were conducted with caregivers (n = 23; 52.2% spouses; 8.7% male). Conventional content analysis revealed five categories: Coming home and staying home; Taking the pressure off; Providing security; Giving us time as a couple; and Importance of choice. Stories highlighted sources of stress and mechanisms behind stress relief and support.

Unmet needs in self-directed HCBS programs

ABSTRACT Unmet need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of a budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment (CCDE) documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper reanalyzes 76 case studies from the CCDE to, for the first time gain an understanding of what those unmet needs are, who sees them, and what participants, caregivers and support brokers think might reduce this problem. Using a collective or multiple case study approach to understand this phenomenon, unmet needs were sorted into five categories using real life experiences of respondents. Unmet needs for assistance in managing the employer and budget tasks of self-direction were also captured.This paper discusses situations where the clinician researchers documented needs that were not expressed by the care recipients and provides a picture of where and why unmet needs remain.The paper concludes with strategies for reducing unmet needs and training future social workers.

Preparedness of representatives for people with dementia in a self-directed program

ABSTRACT Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities. They represented participants with moderate to advanced dementia and ≥ two additional chronic illnesses. Overall preparedness scores were in the pretty well to very well prepared range, with variation across dimensions and between individuals. Preparedness varied according to what has to be done day-to-day in dynamic or unpredictable situations, gauging decisional capacity, anticipating changing needs, ensuring safety, supporting a dementia-capable care team and negotiation. Stress was related to having a safety net of capable back-up supports and dementia care literacy. Areas of strength, individual variation and particular challenges along the trajectory of representing can guide development of support counselor interventions to provide representatives with tailored training and resources as they enable the benefits of PD for persons with dementia.

Revising the Resistiveness to Care Scale.

BACKGROUND AND PURPOSE The Resistiveness to Care Scale for Dementia of the Alzheimers Type was developed to quantify care-resistant behavior. The purpose of this article is to explain how the instrument was modified and tested in two clinical studies that examined interventions to improve the oral hygiene of persons with dementia who resist care. METHODS After pilot testing, the revised instrument (RTC-r) was used in 7 facilities (N = 83 residents). Systematic training procedures were implemented to preserve reliability. RESULTS Clinical validity was confirmed throughout the pilot and interventional studies. Reliability was assessed using inter-rater reliability, which ranged from 0.87 (p < .001) to 1.0 (p < .001) across 2,328 mouth care observations. CONCLUSIONS The RTC-r validly and reliably measures care-resistant behavior in persons with dementia.

“It’s Changed Everything”: Voices of Veterans in the Veteran-Directed Home and Community Based Services Program

ABSTRACT The purpose of this study was to understand the value and impact of the Veteran-Directed Home and Community Based Services program (VD-HCBS) on Veterans’ lives in their own voices. Focus groups and individual interviews by telephone were conducted to elicit participant perspectives on what was most meaningful, and what difference VD-HCBS made in their lives. Transcripts were analyzed using content analysis. The sample included 21 Veterans, with a mean age of 66±14, enrolled in VD-HCBS an average of 20.8 months. All were at risk of institutional placement based on their level of disability. Five major categories captured the information provided by participants: What a Difference Choice Makes; I’m a Person!; It’s a Home-Saver; Coming Back to Life; and Keeping Me Healthy & Safe. Participants described the program as life changing. This study is the first time that Veterans themselves have identified the ways in which VD-HCBS impacted their lives, uncovering the mechanisms underlying positive outcomes. These categories revealed new ways of understanding VD-HCBS as an innovative approach to meeting the person-centered needs of Veterans wishing to remain at home, while experiencing quality care and leading meaningful lives, areas identified as priorities for improving long term services and supports.

“I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs

ABSTRACT Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34–78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver’s own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

The Long-Term Effects of Participant Direction of Supports and Services for People With Disabilities.

Numerous studies have demonstrated the short-term effectiveness of the Cash and Counseling model option of participant-directed home and community-based personal care service programs for Medicaideligible recipients with disabilities requiring long-term care. However, long-term experiences with participant-directed services have yet to be examined for these individuals. We addressed this gap in the literature through participatory action research and qualitative content analysis. Working together as coresearchers with members of the National Participant Network, a peer organization for people interested in or enrolled in participant-directed services, we interviewed 17 adults enrolled in one state’s Cash and Counseling-based program. Participants’ ages ranged from 40 to 83 years, had been enrolled for at least 5 years, and acted as their own representative within the program. Our major findings show (a) the program’s flexibility allowed for adaptation to meet participants’ changing needs over time and (b) that program attendants helped connect participants with community in multiple ways. In this article, we provide important policy and practice implications for participant-directed programs for people with disabilities.