Caregiver decision-making concerning involuntary treatment in dementia care at home.

BACKGROUND: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. OBJECTIVE: To identify and describe family caregivers' experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. RESEARCH DESIGN: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. PARTICIPANTS AND RESEARCH CONTEXT: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. ETHICAL CONSIDERATION: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. FINDINGS: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad (persons living with dementia, professional and family caregivers) such as practical and emotional support, knowledge, and previous experiences. DISCUSSION AND CONCLUSION: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations.

Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff?

BACKGROUND: Partnerships between family and nursing staff in nursing homes are essential to address residents' needs and wishes. Collaboration is needed to create partnerships; nonetheless, challenges exist. AIM: This study aimed to gain insights into the experiences of families collaborating with staff. METHOD: Semi-structured interviews were held with 30 family caregivers of nursing home residents with dementia. FINDINGS: Data reflected three themes, which shaped collaboration with staff from families' perspective, 'communication', 'trust and dependency' and 'involvement'. DISCUSSION: Good communication appeared to be a requisite condition for having trust in staff and quality of involvement in residents' life. Good communication was described as having informal contact with staff, which enabled family and staff to build a personal connection. Consequently, this seemed to increase trust and satisfaction regarding involvement. CONCLUSION: Findings suggest that increasing informal contact and building a personal connection should be a priority for staff in order to improve collaboration and to create partnerships with families.

Working in small-scale, homelike dementia care: effects on staff burnout symptoms and job characteristics. A quasi-experimental, longitudinal study.

AIM: This paper reports on a quasi-experimental, longitudinal study on the effects of working in a new type of dementia care facility (i.e. small-scale living facilities) on staff burnout symptoms and job characteristics (job autonomy, social support, physical demands and workload). METHODS: It is hypothesised that nursing staff working in small-scale facilities experience fewer burnout symptoms, more autonomy and social support, and fewer symptoms of physical demands and workload compared with staff in regular wards. Two types of long-term institutional nursing care settings were included: 28 houses in small-scale living facilities and 21 regular psychogeriatric wards in nursing homes. At baseline and at follow-ups after 6 and 12 months nursing staff were assessed by means of self-report questionnaires. In total, 305 nursing staff members were included in the study, 114 working in small-scale living facilities (intervention group) and 191 in regular wards (control group). RESULTS: No overall effects on burnout symptoms were detected. Significantly fewer physical demands and lower workload were experienced by staff working in small-scale living facilities compared with staff in regular wards. They also experienced more job autonomy. No significant effect was found for overall social support in the total group. CONCLUSIONS: This study suggests positive effects of the work environment on several work characteristics. Organisational climate differs in the two conditions, which might account for our results. This may influence nursing staff well-being and has important implications for nursing home managers and policy makers. Future studies should enhance our understanding of the influence of job characteristics on outcomes.

Treatment of heart failure in nursing home residents.

BACKGROUND: For the treatment of chronic heart failure (HF), both pharmacological and non-pharmacological treatment should be employed in HF patients. Although HF is highly prevalent in nursing home residents, it is not clear whether the recommendations in the guidelines for pharmacological therapy also are followed in nursing home residents. The aim of this study is to investigate how HF is treated in nursing home residents and to determine to what extent the current treatment corresponds to the guidelines. METHODS: Nursing home residents of five large nursing home care organizations in the southern part of the Netherlands with a previous diagnosis of HF based on medical records irrespective of the left ventricle ejection fraction (LVEF) were included in this cross-sectional design study. Data were gathered on the (medical) records, which included clinical characteristics and pharmacological- and non-pharmacological treatment. Echocardiography was used as part of the study to determine the LVEF. RESULTS: Out of 501 residents, 112 had a diagnosis of HF at inclusion. One-third of them received an ACE-inhibitor and 40% used a ß-blocker. In 66%, there was a prescription of diuretics with a preference of a loop diuretic. Focusing on the residents with a LVEF ≤ 40%, only 46% of the 22 residents used an ACE-inhibitor and 64% a ß-blocker. The median daily doses of prescribed medication were lower than those that were recommended by the guidelines. Non-pharmacological interventions were recorded in almost none of the residents with HF. CONCLUSIONS: The recommended medical therapy of HF was often not prescribed; if prescribed, the dosage was usually far below what was recommended. In addition, non-pharmacological interventions were mostly not used at all.

Changes in health-related quality of life in older patients one year after an intensive care unit stay.

AIMS AND OBJECTIVES: This study investigates health-related quality of life in older patients, over one year following an intensive care unit stay. BACKGROUND: Health-related quality of life is an important outcome when assessing long-term effectiveness of intensive care treatment, and to assist patients, their relatives and healthcare professionals in making treatment decisions. DESIGN: Prospective non-randomised longitudinal study. METHODS: The Short Form Health Survey 36 was administered 1 week after an intensive care stay (retrospective baseline), and after six months and 12 months to the study population and to an age-matched comparison group at recruitment (baseline), and after six months and 12 months. Demographic data, admission diagnosis, length of stay, severity of illness, pain, anxiety, agitation, and intratracheal suctioning, turning and intubation were recorded. Recruitment period: December 2008 to April 2011. RESULTS: Health-related quality of life of the older patients was significantly lower than the comparison group, both before and after the intensive care unit stay, and showed great individual variability. Within group scores, however, were stable over the year. Both physical and mental health scores were lower for the older patients. Renal failure, cardiac surgery and illness severity were associated with lower physical health scores. Cardiovascular illness, intratracheal suctioning and turning were associated with lower mental health scores. CONCLUSIONS: Health-related quality of life was lower in older patients than in the age-matched group but remained stable over one year. RELEVANCE TO CLINICAL PRACTICE: Older patients with severe illnesses, acute renal failure or who have had cardiac surgery, need additional support after hospital discharge due to functional restrictions. Discharge planning should ensure that this support would be provided. Special attention should be given to develop and use methods to reduce distress during routine intensive care interventions such as intratracheal suctioning or turning.

Healthcare resource utilisation by critically ill older patients following an intensive care unit stay.

AIMS AND OBJECTIVES: This study examines the utilisation of healthcare resources by critically ill older patients over one year following an intensive care unit stay. BACKGROUND: Information on healthcare resource utilisation following intensive care unit treatment is essential during times of limited financial resources. DESIGN: Prospective longitudinal nonrandomised study. METHODS: Healthcare resource utilisation by critically ill older patients (≥65 years) was recorded during one year following treatment in a medical-surgical intensive care unit. Age-matched community-based participants served as comparison group. Data were collected at one-week following intensive care unit discharge/study recruitment and after 6 and 12 months. Recorded were length of stay, (re)admission to hospital or intensive care unit, general practitioner and medical specialist visits, rehabilitation program participation, medication use, discharge destination, home health care service use and level of dependence for activities of daily living. RESULTS: One hundred and forty-five critically ill older patients and 146 age-matched participants were recruited into the study. Overall, critically ill older patients utilised more healthcare resources. After 6 and 12 months, they visited general practitioners six times more frequently, twice as many older patients took medications and only the intensive care unit group patients participated in rehabilitation programs (n = 99, 76%). The older patients were less likely to be hospitalised, very few transferred to nursing homes (n = 3, 2%), and only 7 (6%) continued to use home healthcare services 12 months following the intensive care unit stay. CONCLUSIONS: Critically ill older patients utilise more healthcare resources following an intensive care unit stay, however, most are able to live at home with no or minimal assistance after one year. RELEVANCE TO CLINICAL PRACTICE: Adequate healthcare resources, such as facilitated access to medical follow-up care, rehabilitation programs and home healthcare services, must be easily accessible for older patients following hospital discharge. Nurses need to be aware of the healthcare services available and advise patients accordingly.