The impact of dementia caregiving on self-care management of caregivers and facilitators: a qualitative study.

BACKGROUND: Caregivers of patients with dementia or Alzheimer's disease (AD) face special health challenges due to the progressive nature of the disease. Self-care has crucial importance on individuals' management of life, health, and well-being. However, limited evidence is available on self-care management of dementia and AD caregivers. This study aimed to investigate the influence of caregiving on the self-care management of dementia and AD caregivers based on the caregivers' experience. In addition, the facilitators of caregivers' self-care management were assessed. METHODS: A sample of 45 caregivers of patients with dementia or AD was recruited from a local community in the south-eastern USA. Semi-structured interviews were conducted. Data were transcribed verbatim and analyzed by the method of cross-case thematic analysis of qualitative data. RESULTS: As reported by the caregivers, caregiving negatively influenced their self-care management, including physical self-care and mental and social self-care. Both internal and external facilitators were found that can assist caregivers' self-care. Caregivers differ considerably in their demographic characteristics, caregiving tasks, and self needs. CONCLUSION: Self-care management of dementia and AD caregivers can be largely affected by caregiving. Awareness, motivation, and knowledge of self-care, as well as knowledge of health-care resources, are important prerequisites for caregivers to achieve self-care management. Given the massive differences in caregiving situations, future intervention studies based on the specific needs of individual caregivers are warranted.

Survivors speak: a qualitative analysis of motivational factors influencing breast cancer survivors' participation in a sprint distance triathlon.

AIMS AND OBJECTIVES: To examine motivational factors influencing breast cancer survivors to participate in triathlon training, complete a triathlon and maintain an exercise thereafter. BACKGROUND: Routine exercise has been shown to improve quality of life and reduce recurrence for breast cancer survivors. Yet physical and psychological factors present barriers for initiating and maintaining an exercise routine. Research is limited in exploring factors of exercise motivation from the survivor's perspective. DESIGN: Qualitative design using focus groups and individual follow-up phone interviews to explore motivation for exercise initiation and maintenance. METHODS: One to two weeks after completing a triathlon, 11 breast cancer survivors who trained together participated in one of three focus groups to discuss their experience. Five months post triathlon 6 of the 11 participants were successfully contacted and phone interviews were conducted to explore exercise maintenance. Focus groups and interviews were analysed using content and thematic analysis. RESULTS: Five themes emerged (1) Champion for Exercise, (2) Part of a Team, (3) Everyone Had a Story, (4) Not Really Exercise and (5) What Do We Do Now? Overall, survivors recognised their need for lifestyle change (e.g. moving from a sedentary lifestyle to a more active one). More importantly, they identified the team approach to exercise initiation was crucial in their success in sustaining a behavioural change. CONCLUSIONS: Emphasis needed on developing team exercise training programmes for survivors. Nurses can play a critical role in discussing with survivors, the benefits of exercise initiation and maintenance. RELEVANCE TO CLINICAL PRACTICE: Breast cancer survivors are hesitant to initiate routine exercise. Training with women who share a common lived experience increases the likelihood of success. Nurses are in a position to encourage breast cancer survivors to participate in group exercise programmes as a way to improve quality of life.

Prevalence of chronic illnesses and characteristics of chronically ill informal caregivers of persons with dementia.

OBJECTIVES: to examine the prevalence of and the link of chronic illnesses (CIs) to informal caregivers of persons with dementia (PWDs), as well as to identify characteristics of caregivers with CIs. METHODS: the sample included 124 caregivers of PWDs from a caregiver programme of research. Sociodemographic information and caregivers CIs were collected by an in-person interview. Descriptive statistics, t-tests, chi-square analysis and binary logistic regressions were performed for data analysis. RESULTS: approximately 81.5% (n = 101) of caregivers reported having at least one CI, 60.5% (n = 75) reported two or more CIs. Caregivers with CIs were more likely to be older and unemployed; advanced age and female gender were risk factors for CIs. The link of CIs to caregivers was stronger in younger caregivers but weaker in older caregivers when compared with the general population. CONCLUSION: targeted interventions based on this study need to be developed to improve the health of caregivers of PWDs.

Implementation and evaluation of the chronic-disease self-management program among Chinese immigrant older adults in the U.S.

This article describes the implementation and evaluation of the chronic-disease self-management (CDSM) program, developed by Stanford University, among Chinese older adults in a metro area of a large Southeastern City of the U.S. The method of Practical Participatory Evaluation through an academic-community partnership between university researchers and local Chinese communities was used to develop the program and assess its applicability in the population. Results suggested that language proficiency, communication, social network and culture of the population were the most influential factors for U.S. Chinese immigrants to attend the CDSM program. The program increased participants' knowledge, skills and confidence in CDSM, whereas its capability in addressing culture differences needed improvement. Knowledge learned in this project was instrumental in implementing similar projects among immigrants.

Differences between dementia caregivers who are users and nonusers of community services.

OBJECTIVES: To examine differences between users and non-users of community services in caregivers of persons with dementia (PWD). A profile of who used services versus did not use services was developed. DESIGN AND SAMPLE: Existing cross-sectional data from the NINR funded National Caregiver Training Project (data collected 1995-1997) were used. The sample (N = 241) of caucasian, well-educated caregivers reflected a mix of spouse and adult caregivers with a mean age of 64.8 years. MEASURES: Variables measured included caregiver social support, burden, and depression as well as problem behavior of PWD. RESULTS: The majority of caregivers did not attend support groups (73%) or use respite services (79%). Among caregivers who did not use services, 78% lived with the recipient and 77% were spouses. The profile of non-users compared to users revealed that non-users were significantly older, more depressed, and received less social support. On the other hand, non-users provided fewer hours of care per week to recipients who had less cognitive and functional deterioration and fewer behavior problems. CONCLUSIONS: These findings provide public health nurses with knowledge about service use in caregivers of PWD. Recommendations regarding caregiver needs for assistance and increased use of services before a crisis ensues are presented.

Development of integrated mental health care: critical workforce competencies.

In integrated care, a person will have his or her medical and behavioral health needs addressed within one health care system. Support for integrated models has grown with the increasing awareness of how the medical comorbidities of individuals with serious mental illness contribute to their morbidity and mortality, the prevalence of mental health problems in the general population, and the mental health issues among those with chronic medical problems. The enactment of effective integrated care will demand developing clinicians who are trained to work with mental health needs at various levels of intensity, who are capable of addressing complex comorbidities, and who operate from a person-centered approach to care. In this light we argue that given their unique skill set and clinical training, Psychiatric-Mental Health Advanced Practice Nurses could play a critical role in integrated care and present policy recommendations which support the development of the Psychiatric-Mental Health Advanced Practice Nurses role in such models.

Influence of cognitive decline on sexuality in individuals with dementia and their caregivers.

Sexuality is an important element of human life that is strongly influenced by the social environment. People assess themselves and relate their roles to one another in terms of sexuality. More attention must be directed at the sexual needs of individuals with dementia and their caregivers. A myth believed by society is that individuals with dementia are asexual and that sexual desires and needs for connection will wane over time; whereas in reality many couples living with dementia remain sexually active as the disease progresses. The sexual needs of individuals with dementia are similar to those of younger people but might vary in occurrence and expression. An increase or decline in sexual desire is dependent on the level of cognitive impairment. Sexuality in individuals with dementia may be expressed as inappropriate or hypersexual behavior due to disinhibition and forgetting social cues. Although hypersexuality is often less common than other challenging behaviors that can occur in dementia, it affects both the health of the individual with dementia and the health of his or her caregiver.

African American women's infant feeding choices: prenatal breast-feeding self-efficacy and narratives from a black feminist perspective.

PURPOSE: Examining prenatal breast-feeding self-efficacy and infant feeding decisions among African American women using a mixed-method approach. A black feminist philosophy was used to keep women's experiences as the central research focus. METHOD: The Prenatal Breast-feeding Self-efficacy Scale was used to determine differences between intended breast-feeders and formula users among 59 women. Seventeen narrative interviews were conducted to analyze postpartum accounts of actual feeding practices. RESULTS: Both groups (intended breast- or formula-feeders) demonstrated confidence in their ability to breast-feed. Women planning to breast-feed (M = 82.59, SD = 12.53) scored significantly higher than anticipated formula users (M = 70, SD = 15.45), P = .001 (2-tailed). Four of the six themes emerging from narrative analysis were similar to categories of self-efficacy: performance accomplishments, vicarious experiences, verbal persuasions, and physiological reactions. In addition, themes of social embarrassment and feelings of regret were identified. CONCLUSION: Although African American women in this study rated themselves overall as confident with breast-feeding, several narratives about actual feeding choices indicated ambivalence. Women planning to breast-feed need continued support from their healthcare providers throughout the childbearing year. Furthermore, prenatal and immediate postpartum opportunities may exist for nurses to encourage breast-feeding among individuals who initially plan formula use.

Care coordination: a priority for health reform.

Care coordination is one of the priorities to transform the health care system (Institute of Medicine). Nurses have taken on the central role in care coordination for decades, and are now being recognized for expertise in care coordination. Attention has focused on nursing models that use care coordination and report outcomes. Nursing care coordination models emphasize patient education, engagement of patients and families in prevention, self-care, and adoption of health information technology to improve access to information. Policy recommendations needed to enhance care coordination include the following: (a) facilitate better information transfer with wider use of information technology, (b) include Nurse Practitioners (NPs) as equal practitioners in reimbursement, (c) create incentives to improve coordination of care, (d) reward the use of evidence-based practices, and (e) advocate for better care coordination models that include interdisciplinary teams and greater health system integration.

An integrated mental health clinical rotation.

The most common site for accessing mental health care is the primary care setting. Yet, primary care nurses are not adequately prepared to treat the complex mental health needs of these patients. Similarly, providers in segregated mental health sites do not adequately address physical health needs. New educational models are needed to better prepare nursing graduates to provide holistic care. The integrated mental health model, which colocates mental health specialists in primary care sites, is designed to do this. This article describes key curricular elements of a successful interprofessional clinical rotation within an integrated mental health team that included the use of case studies, a standardized mental health screening instrument, a quality improvement process, and a patient satisfaction questionnaire. Family nurse practitioner and psychiatric mental health nurse practitioner students learned to collaborate with each other and with other members of the interprofessional team to provide holistic care.

Community perceptions of mental health needs in an underserved minority neighborhood.

Accurate information is needed to facilitate health equity in underserved communities. This community-based participatory study asked residents about the meaning of mental health, their perceptions of community mental health needs, barriers to accessing mental health care, and acceptability of mental health services that are integrated in primary health clinics. Forty-five primarily African-American residents from urban communities participated in focus groups. Findings revealed high prevalence of substance abuse, depression, crime, and stigma about mental illness, with multiple access barriers. Participants were receptive to mental health care integrated in primary care, if others did not know they were receiving mental health care.

Policy recommendations on the prevention of violence in long-term care facilities.

Violence in long-term care facilities is not well understood and remains unaddressed by policy makers and administrators. Underlying factors contributing to violence are discussed and preventive strategies are offered as potential solutions to reduce aggressive behavior. Knowledge of the incidence of violence and the conditions and factors contributing to violence can help nurses protect both staff and residents and achieve better resident outcomes. Potential solutions and policy recommendations for the prevention of violence, including improvement of staffing in long-term care facilities, are offered.

Outcomes of a Two-Component Intervention on Behavioral Symptoms in Persons With Dementia and Symptom Response in Their Caregivers.

PURPOSE: This study evaluated the longitudinal influence of an individualized evidence-based psychoeducational intervention for caregivers on frequency of behavioral symptoms in persons with dementia (PWD) and caregiver reaction to these symptoms. The intervention included information about the disease process using Progressively Lowered Stress Threshold (PLST) content and a family meeting based on Mittelman's New York University Intervention. METHOD: A quasi-experimental study design was implemented. The Revised Memory and Behavior Problems Checklist was administered to N = 127 caregiver/care recipient dyads at baseline, 6, 12, and 18 months follow-up. All caregivers were enrolled in the intervention at baseline and followed over 18 months. Linear mixed models were developed to evaluate effects on frequency of behavioral symptoms in PWD and caregiver response. RESULTS: The most frequently occurring behavior was memory problems, although depressive behaviors produced the most negative caregiver responses. Between baseline and 6-month follow-up, there was a significant decrease in frequency of behavioral symptoms. Overall, there was a significant decrease in caregiver's reaction to behavioral symptoms from baseline to 18-month follow-up.

Promoting Team-Based Exercise Among African American Breast Cancer Survivors.

Physical activity benefits the health and well-being of breast cancer survivors (BCS). Yet, many African American survivors do not routinely exercise and have increased risk of poor outcomes. The purpose of this mixed-method study was to identify motivational factors compelling African American BCS to participate in a 14-week team walking program and to intend to continue exercise after the intervention concluded. Focus groups were held with participants ( n = 12) before and after training. Content analysis discovered themes before the intervention: Not wanting to go at it alone, exercise not a life or treatment priority, cancer treatment affected activity, advocates to exercise, and can exercise really help? Four themes postintervention themes included: In the same boat, changed mind-set, improved weight and activity, and overcoming barriers. Physical data verified improvements. Results suggest that a team-based exercise training program may assist in overcoming a sedentary behavior tendency and subsequently improve health among survivors.

Replication-independent assembly of nucleosome arrays in a novel yeast chromatin reconstitution system involves antisilencing factor Asf1p and chromodomain protein Chd1p.

Chromatin assembly in a crude DEAE (CD) fraction from budding yeast is ATP dependent and generates arrays of physiologically spaced nucleosomes which significantly protect constituent DNA from restriction endonuclease digestion. The CD fractions from mutants harboring deletions of the genes encoding histone-binding factors (NAP1, ASF1, and a subunit of CAF-I) and SNF2-like DEAD/H ATPases (SNF2, ISW1, ISW2, CHD1, SWR1, YFR038w, and SPT20) were screened for activity in this replication-independent system. ASF1 deletion substantially inhibits assembly, a finding consistent with published evidence that Asf1p is a chromatin assembly factor. Surprisingly, a strong assembly defect is also associated with deletion of CHD1, suggesting that like other SNF2-related groups of nucleic acid-stimulated ATPases, the chromodomain (CHD) group may contain a member involved in chromatin reconstitution. In contrast to the effects of disrupting ASF1 and CHD1, deletion of SNF2 is associated with increased resistance of chromatin to digestion by micrococcal nuclease. We discuss the possible implications of these findings for current understanding of the diversity of mechanisms by which chromatin reconstitution and remodeling can be achieved in vivo.

Global control of histone modification by the anaphase-promoting complex.

Acetylation and phosphorylation of the amino-terminal tails of the core histones fluctuate on a global scale in concert with other major events in chromosome metabolism. A ubiquitin ligase, the anaphase-promoting complex (APC), controls events in chromosome metabolism such as sister chromatid cohesion and may regulate H3 phosphorylation by targeting Aurora A, one of several S10-directed H3 kinases in vertebrate cells, for destruction by the proteasome. Our analysis of apc10Delta and apc11(ts) loss-of-function mutants reveals that the APC controls the global level of H3 S10 phosphorylation in cycling yeast cells. Surprisingly, it also regulates dephosphorylation of H3 and global deacetylation of H2B, H3, and H4 during exit from the cell cycle into G(0). Genetic, biochemical, and microarray analyses suggest that APC-dependent cell cycle control of H3 phosphorylation is exerted at the level of an Aurora H3 kinase, Ipl1p, while APC-dependent transcriptional induction of GLC7, an essential H3 phosphatase, contributes to sustained H3 dephosphorylation upon cell cycle withdrawal. Collectively, our results establish that core histone acetylation state and H3 phosphorylation are physiologically regulated by the APC and suggest a model in which global reconfiguration of H3 phosphorylation state involves APC-dependent control of both an H3 kinase and a conserved phosphatase.

Chromatin assembly in a crude fraction from yeast cells.

The mechanisms of biological chromatin assembly and their regulation have been studied intensively using cellular extracts, particularly those from the embryonic cells of various metazoans. Here we describe how to prepare and use a crude chromatographic fraction from budding yeast, which also supports biological chromatin assembly. In this system, nucleosomes are assembled by a replication-independent mechanism into physiologically spaced arrays that significantly protect underlying DNA from restriction endonuclease digestion. The formation of correctly spaced nucleosome arrays absolutely requires ATP and exogenous core histones of yeast or Drosophila. We have explored how cell cycle and DNA damage signals affect assembly activity in this system.

Predictors of use of services among dementia caregivers.

Caregivers of persons with dementia do not use community resources until late in the disease process, despite the fact that judicious use of community resources can delay nursing home admission. Data from the National Caregiver Training Project, based on Hall and Buckwalter's (1987) progressively lowered stress threshold (PLST) model, were used to examine variables related to use of community resources. Spouse and adult child caregivers were divided into two groups based on amount of community resources used per week. Within this geographically diverse sample of caregivers, 64% did not use professional services, 79% did not use respite services, and 65% did not use other services. Being a spouse decreased the odds that the caregiver would use community resources. Resource use was also related to the care recipient's problems with activities of daily living and the increase in frequency of memory and behavioral problems.

The Impact of Caregiving on Caregivers' Medication Adherence and Appointment Keeping.

The purpose of this study was to examine the relationships between care demands and caregivers' medication adherence and health appointment keeping. A cross-sectional correlational design was used to survey a convenience sample of 45 informal caregivers of persons with dementia. Pearson product-moment correlations and hierarchical multiple regressions were used to examine the relationships among study variables. Nearly one third of caregivers reported frequently or occasionally missing medication doses and nearly a half reported not being able to fully keep appointments with health care providers. Female gender, care duration, and care-recipient activities of daily living were significant predictors for medication adherence and appointment keeping. Caregivers' education and weekly caregiving hours contributed significantly to their medication adherence. Interventions are needed to help caregivers keep health appointments and adhere to their medications.