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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Policy issues in mental health among the elderly.

Americans are living longer than ever before in history. With age comes an increased risk for chronic mental health disorders. About 1 in 8 baby boomers is expected to be diagnosed with Alzheimer disease, which will amount to some ten million members of this age cohort. The prevalence of mental health disorders among the elderly is often unrecognized. One in four older adults lives with depression, anxiety disorders, or other significant psychiatric disorders. Mental health disorders are frequently comorbid in older adults, occurring with a number of common chronic illnesses such as in diabetes, cardiac disease, and arthritis. The public is becoming more aware of the aging of the population and the difficulties that are exacerbated by unmet services and limited access to mental health services. This article describes policy issues related to chronic mental health disorders and the older population. Mental health parity, a recent policy issue occurring at the national level, is discussed first followed by workforce issues specific to the discipline of nursing.

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.

Looking ahead in long-term care: the next 50 years.

During the next 50 years, demographic aging-including graying of the baby boomers, increased longevity, and lower fertility rates-will change the needs for long-term care in the United States. These trends will have a great impact on the federal budget related to spending for Social Security, Medicare, and Medicaid. Future years will see a more diverse population with increased aggressive treatment of chronic illness. Consumers of health care and their family caregivers will take more active steps to manage and coordinate their own care. Housing trends that produce more senior-friendly communities will encourage independent living rather than seniors' having to move into institutions; increased incentives for use of home- and community community-based care will allow people to stay longer in their own homes in the community. Technological advances, such as the use of robots who serve as companions and assistants around the house, will also decrease the need for institutional living.

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.

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.

Gal4-VP16 directs ATP-independent chromatin reorganization in a yeast chromatin assembly system.

Major insights into the regulation of chromatin organization have stemmed from biochemical studies using Gal4-VP16, a chimeric transcriptional activator in which the DNA binding domain of Gal4p is fused to the activation domain of viral protein VP16. Unexpectedly, given previous intensive efforts to understand how Gal4-VP16 functions in the context of chromatin, we have uncovered a new mode of chromatin reorganization that is dependent on Gal4-VP16. This reorganization is performed by an activity in a crude DEAE (CD) fraction from budding yeast which also supports ATP-dependent assembly of physiologically spaced nucleosome arrays. Biochemical analysis reveals that the activity tightly associates with chromatin and reorganizes nucleosome arrays by a mechanism which is insensitive to ATP depletion after nucleosome assembly. It generates a chromatin organization in which a nucleosome is stably positioned immediately adjacent to Gal4p binding sites in the template DNA. Individual deletion of genes previously implicated in chromatin assembly and remodeling, namely, the histone chaperones NAP1, ASF1, and CAC1 and the SNF2-like DEAD/H ATPases SNF2, ISW1, ISW2, CHD1, SWR1, YFR038w, and SPT20, does not significantly perturb reorganization. Therefore, Gal4-VP16-directed chromatin reorganization in yeast can occur by an ATP-independent mechanism that does not require SAGA, SWI/SNF, Isw1, or Isw2 chromatin remodeling complexes.