Sarah B. Wackerbarth

Essential information and support needs of family caregivers

The purpose of this study was to identify essential information and support needs of family caregivers for individuals with Alzheimers disease or a related dementia, and to examine the relationship between caregiver characteristics and needs. Caregivers (n=128, response rate=49.4%) returned a survey detailing information needs, support needs, and personal information. The need for information concerning diagnosis/treatment and legal/financial issues was more important than general information about the disease. Specifically, information about health plan coverage was most important. Experienced caregivers also needed legal/financial information, as well as support. Female caregivers rated needs related to support as significantly more important than male caregivers. Practitioners should realize that caregivers may have different information and support needs and these needs may change throughout the caregiving experience.

Modeling a Dynamic Decision Process: Supporting the Decisions of Caregivers of Family Members with Dementia

One contributor to caregiving burden is the stress of making decisions. Family caregivers need support to consider and implement decisions. Support is likely to result in informed decisions and decreased guilt. The purpose of the study described in this article was to understand the decision processes of family caregivers of people with dementia using a multiple case study approach that would result in a model of their decision processes, with emphasis on support needs. The proposed model, based on control theory, charts the caregiving experiences over time and documents decisions made to maintain tolerable situations. This model is the first step toward developing interventions to provide the support needed to take on the role of decision maker, plan for the future, and make informed decisions.

The carrot and the stick: Benefits and barriers in getting a diagnosis

The goals of this study were to identify the benefits and barriers perceived by family caregivers of persons who have been through a diagnostic assessment for dementia symptoms and to determine which caregivers experience more benefits and barriers associated with assessments. A survey was mailed to caregivers involved in the decision to seek a diagnostic assessment for a family member at a University of Kentucky memory disorders clinic. A total of 528 family caregivers (response rate 71.7%) returned a 4-page survey designed to elicit benefits, barriers, and demographic information. Respondents delayed the diagnostic assessment for an average of 22.4 months after noticing symptoms. Perceived benefits involved confirmation of a medical condition, access to treatment, and help preparing for the caregiving role. Barriers were both emotional and pragmatic in nature. Respondents who were younger, visited the rural assessment clinic, and had less education experienced more barriers. All groups reported receiving the same number of benefits from the assessment. By incorporating these benefits and barriers, interventions can be designed to increase the likelihood of early diagnostic assessments.

“Do We Really Need All That Equipment?“: Factors Influencing Colorectal Cancer Screening Decisions

The lifetime risk of developing colorectal cancer is 2.5 to 5% in the general population. Colorectal screening can prevent mortality, and there are a number of screening methods, ranging from noninvasive to highly invasive. Although recommendations have been widely disseminated in the media and scientific journals, screening usage is low. In this project, the authors examine the factors that influence individuals’ decisions regarding colorectal screening. They conducted semistructured interviews with 30 people (13 men and 17 women) selected to provide a maximum variation sample. They categorized factors into the following themes: concern for one’s personal well-being, competing demands, preparing for the procedure, the screening process, gender concerns, fear of having cancer, feeling healthy, cost, the experiences of others, and turning 50 years old.

Capturing the Insights of Family Caregivers: Survey Item Generation with a Coupled Interview/Focus Group Process

The usefulness of qualitative methodologies to augment and enrich quantitative studies is often overlooked. The authors’goals are to describe the qualitative process employed to generate survey items and to compare the results to those of studies that used different methodologies for item generation. The study identified barriers to and benefits of memory assessments. The survey item generation methodology, which involved 24 key informant interviews and 3 focus groups, resulted in the identification of 31 barrier and 28 benefit items. The 34 unique items were rated among the most important by survey respondents. The authors, therefore, present a strong case for generating survey items using informant interviews as groundwork for focus groups.

What decisions are made by family caregivers

Before decision support can be offered, we need to understand what decisions family caregivers face, which are considered challenging, and what causes the challenge. To address these issues, 100 caregivers were asked to: • Indicate decisions faced; • Describe challenging decisions; and • Describe specific decision making questions. Eighty surveys (80 percent) were returned and used in the analysis. The most prevalent decisions involved nursing home placement, communicating the diagnosis, and driving. The most challenging decisions involved providing care and relocation. The most prevalent question involved the timing of actions. These results will guide the design of decision aids for family caregivers.

The characteristics of dementia caregiving onset

This study examined the characteristics of entry into the caregiving role for family and friends of older adults suffering from dementia. Using data from a large community survey of informal caregivers of patients who visited the University of Kentuckys Alzheimers Disease Research Center (n = 1055), respondents were classified into one of four onset sequences: recognition-diagnosis, care provision, recognition-care, and diagnosis dependent. A multinomial logistic regression identified several characteristics (i.e., caregiver income, time since onset, care recipient gender, care recipient living status, and primary caregiver identification) that were significantly associated with various caregiving onset patterns. The findings describe the complexity of the entry process and its potential association with health-related transitions in the caregiving career.

Urban-rural differences in a memory disorders clinical population

OBJECTIVES: To compare patient characteristics and family perceptions of patient function at one urban and one rural memory disorders clinic.

Predictors of driving cessation, independent living, and power of attorney decisions by dementia patients and caregivers

This study examines factors associated with decisions made by dementia patients and their caregivers regarding whether the patient should cease driving, live alone or with their spouse, and assign a Durable Power of Attorney. Using data collected by the Alzheimers Disease Research Center (ADRC) in the Memory Disorders Clinic at the University of Kentucky Medical Center, we analyzed 827 first visits to predict patients’ and caregivers’ decisions. Caregiver relationship and patient gender and perceptions of patient abilities, as measured by Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) were more important than cognitive functioning, as measured by the MMSE, in predicting decisions made. These findings have theoretical implications for modeling the impact of the course of the disease and practical implications for interventions aimed at supporting the decision-making processes of patients and caregivers.

Modeling the decision to undergo colorectal cancer screening: insights on patient preventive decision making.

Background:Little is known about how patients decide whether or not to undergo colorectal cancer screening. Although low screening rates evidence the outcome of these decisions, the processes patients use to balance benefits, risks, and costs with their own values and preferences are unclear. To increase screening rates, and ultimately save lives, it is important for providers to be aware of how patients make screening decisions. Objectives:The purpose of this study was to identify patterns of patient colorectal cancer screening decisions that might be supported by health care providers. Population:In this study, we focused on people from Central Kentucky—a region with historically low screening rates. Method:We interviewed patients using a semi-structured format. Three members of the research team independently analyzed each interview transcript for factors that influenced the decision, and a pictorial representation of each decision process, based on Kurt Lewins theory of decision making, was constructed for each participant. The individual decision processes were compared with identify patterns. Results:Seventeen women and 13 men made up the sample. We discerned 7 decision patterns. Conclusions:This research documents 7 patterns and identifies common driving and restraining forces.