Development and usability of a decision support App for nurses to facilitate aging in place of people with dementia.

AIM: The aim of this study was to develop a decision support tool for nurses to facilitate aging in place of people with dementia and to test its usability. BACKGROUND: Nurses play an important role in detecting practical problems preventing persons with dementia (PwD) from aging in place and advising them on possible solutions. These are complex and challenging tasks for nurses. METHODS: A mixed methods study was conducted. The content development of the App comprised a literature and internet search, and individual and group interviews with professionals (n = 8) and researchers (n = 5). The technical development was an iterative process in which usability was tested by the project team (n = 4), experts (n = 6), and end-users (n = 9), using heuristic evaluation, a think-aloud approach, and a questionnaire (PSSUQ). RESULTS: The App contains a structured problem assessment for three problem domains-self-reliance, safety, and informal care-based on validated questionnaires and self-formulated questions. The problem assessment is linked to an overview of possible solutions for the problems detected. Three prototypes have been developed. The users of the third prototype were overall satisfied with the App as they scored on average 1.7 on the PSSUQ (range 1-7 and lower scores indicating higher satisfaction). CONCLUSIONS: A user-friendly prototype of the decision support App is now available. Users indicated to be very willing to use to App in daily practice. However, besides further technical development, implementation of the App into practice requires evidence supporting its efficacy, feasibility and effectiveness.

Daily lives of residents with dementia in nursing homes: development of the Maastricht electronic daily life observation tool.

BACKGROUND: Daily life is a dynamic and multidimensional concept, for which appropriate assessment tools are lacking. This study describes the development of the Maastricht Electronic Daily Life Observation tool (MEDLO-tool), a freely accessible, easy to use, electronic observation tool to assess relevant daily life aspects for nursing home residents with dementia. METHODS: (1) Determining relevant aspects of daily life for nursing home residents with dementia based on a literature search and expert interviews; (2) pilot testing observation procedures and operationalizations of the aspects of daily life; and (3) exploring inter-rater reliability and feasibility of the tool in a nursing home facility with 16 residents (56% female, mean age: 77). RESULTS: The following aspects of daily life are assessed with the MEDLO-tool: (1) activity (activity performed by resident, engagement in this activity, and the degree of physical effort); (2) physical environment (location of the resident and interaction with the physical environment); (3) social interaction (the level and type of social interaction, and with whom this social interaction took place); and (4) emotional well-being (mood and agitation). Each aspect of daily life is observed and scored using standardized scoring options. Agreement on the aspects is high with an average absolute agreement of 86%. Users of the MEDLO-tool indicated that it was feasible in practice and contained clear operationalization of the aspects of daily life. CONCLUSIONS: The MEDLO-tool is a promising tool to gain real time insight into the aspects of the daily lives of nursing home residents with dementia.

Living at the farm, innovative nursing home care for people with dementia - study protocol of an observational longitudinal study.

BACKGROUND: In nursing home care, new care environments directed towards small-scale and homelike environments are developing. The green care farm, which provides 24-h nursing home care for people with dementia, is one such new care environment. Knowledge is needed on the relation between environmental features of green care farms such as nature, domesticity and offering care in small groups and the influence on the daily lives of residents. The aim of this study is to explore (1) the daily lives of residents, (2) the quality of care and (3) the experiences of caregivers on green care farms compared with other nursing home care environments. METHODS/DESIGN: An observational longitudinal study including a baseline and a six-month follow-up measurement is carried out. Four types of nursing home care environments are included: (1) large scale nursing home ward, (2) small scale living facility on the terrain of a larger nursing home (3) stand-alone small scale living facility and (4) green care farm. Quality of care is examined through structure, process and outcome indicators. The primary outcome measure is the daily life of residents, assessed by ecological momentary assessments. Aspects of daily life include (1) activity (activity performed by the resident, the engagement in this activity and the degree of physical effort); (2) physical environment (the location of the resident and the interaction with the physical environment); (3) social environment (the level and type of social interaction, and with whom this social interaction took place) and (4) psychological well-being (mood and agitation). In addition, social engagement, quality of life, behavioral symptoms and agitation are evaluated through questionnaires. Furthermore, demographics, cognitive impairment, functional dependence and the severity of dementia are assessed. Semi-structured interviews are performed with caregivers regarding their experiences with the different nursing home care environments. DISCUSSION: This is the first study investigating green care farms providing 24-h nursing home care for people with dementia. The study provides valuable insight into the daily lives of residents, the quality of care, and the experiences of caregivers at green care farms in comparison with other nursing home care environments including small-scale care environments and large scale nursing home wards.

[Small-scale, homelike care environments for people with dementia: effects on residents, family caregivers and nursing staff]. / Kleinschalig wonen voor ouderen met dementie: de invloed op bewoners, mantelzorgers en medewerkers.

Institutional dementia care is increasingly directed towards small-scale and homelike care environments, in The Netherlands as well as abroad. In these facilities, a small number of residents, usually six to eight, live together, and normal daily household activities and social participation are emphasized. In a quasi-experimental study, we studied the effects of small-scale, homelike care environments on residents (n = 259), family caregivers (n = 206) and nursing staff (n = 305). We compared two types of institutional nursing care during a 1 year period (baseline assessment and follow-up measurements at 6 and 12 months): (28) small-scale, homelike care environments and (21) psychogeriatric wards in traditional nursing homes. A matching procedure was applied to increase comparability of residents at baseline regarding functional status and cognition. This study was unable to demonstrate convincing overall effects of small-scale, homelike care facilities. On our primary outcome measures, such as quality of life and behaviour of residents and job satisfaction and motivation of nursing staff, no differences were found with traditional nursing homes. We conclude that small-scale, homelike care environments are not necessarily a better care environment than regular nursing homes and other types of living arrangements should be considered carefully. This provides opportunities for residents and their family caregivers to make a choice which care facility suits their wishes and beliefs best.

[A Dutch roadmap for care without belts usage]. / De weg naar een bandenloze zorg in Nederland.

The use of physical restraints still is highly prevalent in institutional long term care settings for older people. We know that the use of restrictive measures, such as belt restraints, do have many negative consequences for residents, and even can be harmful to their health. However, this knowledge does not result in a reduction of physical restraints. This paper describes the search for an intervention (EXBELT) aiming to safely reduce and prevent the use of belt restraints in nursing homes. EXBELT consists of a promotion of institutional policy change that discourages use of belt restraints, nursing home staff education, availability of alternative interventions, and consultation by a nurse specialist. Effect evaluations show that EXBELT is effective on the short and long term. According to a process evaluation, EXBELT was largely performed according to protocol and very well received by nursing home staff and resident's relatives. However, concurrently it is stated that the reduction of physical restraints in Dutch nursing home care runs slowly. The conclusion is that continuing focus is needed to reduce physical restraints in nursing homes and to prevent its use in home care.

Assessment of pain in sedated and mechanically ventilated patients: an observational study.

BACKGROUND: Critically ill patients often undergo unpleasant procedures. We quantified the effects of an unpleasant stimulus on physiological and behavioral parameters and evaluated how they are modified by sedation and analgesia. METHODS: A 6-month study in the 30-bed intensive care unit (ICU) of a university hospital examined 21 sedated patients from various diagnostic groups. Hemodynamic and respiratory parameters, pupil size, facial expression, muscle tone, body movement, and the Richmond Agitation-Sedation Scale (RASS) score were measured before and during intratracheal suctioning, first in sedated patients, after sedation was stopped, and after an opioid bolus. RESULTS: Before intratracheal suctioning, patients had RASS scores of -1.8 ± 1.2 (mean ± standard deviation; sedation), -0.6 ± 1.7 (sedation stop), and -0.9 ± 1.4 (analgesia) (P = 0.014). Intratracheal suctioning significantly increased RASS during both sedation (to -0.6 ± 1.7) and sedation stop (to 1.0 ± 1.5) (both P < 0.01), but not during analgesia. Systolic blood pressure increased during sedation (by 9 ± 10 mmHg), during sedation stop (by 15 ± 17 mmHg) and during analgesia (by 9 ± 4 mmHg; all P < 0.01), but diastolic pressure only during sedation and sedation stop (both P < 0.01). Facial expression, body movement, and muscle tone changed significantly during the episodes of intratracheal suctioning. Heart rate, tidal volume, and pupil size remained stable under all conditions. CONCLUSIONS: Intratracheal suctioning evoked significant changes in some physiological and behavioral parameters. Some physiological changes were suppressed by analgesia, but at our ICU's standard doses, neither analgesia nor sedation attenuated changes in behavioral parameters at the intensity tested.

Predicting the need for end-of-life care for elderly cancer patients: findings from a Dutch regional cancer registry database.

Over 80% of all deaths in the Netherlands concern people aged 65 years and older. Elderly patients who have been diagnosed with a life-limiting illness have many unmet healthcare needs in the last phase of their life. For this exploratory population-based study, data from the Eindhoven Cancer Registry were retrospectively analysed to determine possible trends in the number, patient characteristics, treatment and survival of patients aged 65 years and older newly diagnosed with stage IV cancer (n= 9028), a group of elderly in the palliative phase of cancer. During 1996-2006 a substantial increase of 81% in the number of elderly patients newly diagnosed with cancer stage IV was found. Over 70% of these patients received primary cancer treatment, irrespective of serious comorbidity (in 61% of them) and a short life expectancy (most died within 12 months except for those with cancer of the prostate). The vast increase in the number of the elderly who need palliative care contributes to awareness among healthcare professionals about future demand. They enable anticipation and planning sufficient end-of-life care capacity, but also to develop care planning programmes for these older palliative cancer patients. Research needs to be done on aspects of the symptom burden, role of palliative treatment, psychological, social and spiritual needs and end-of-life decision-making. Registration of additional data on these aspects of (palliative) care is suggested.

Interventies bij het signaleren van pijn bij verpleeghuisbewoners met dementie: de pilot implementatie van een pijnbeoordelingsinstrument (PACSLAC-D).

INTERVENTIONS AFTER DIAGNOSING PAIN IN NURSING HOME RESIDENTS WITH DEMENTIA: THE PILOT IMPLEMENTATION OF AN OBSERVATIONAL PAIN SCALE (PACSLAC-D): Pain occurs regularly among nursing home residents with dementia. There are indications that appliance of structural pain assessment can contribute to the adequate diagnosis of pain. The aim of this study is to gain insight into applied interventions after diagnosing pain with an observational pain scale (PACSLAC-D) among nursing home resident with dementia.During a six week period pain was measured twice a week, among 22 residents of a psychogeriatric nursing home ward, using the PACSLAC-D. Interventions undertaken as a result of a pain score were inventoried on a datasheet. After the third and sixth week implementation of pain assessment was evaluated.In total 264 pain assessments using the PACSLAC-D were conducted. Of all scheduled standardized measurements 90% was completed. Sixty observations resulted in a pain score. Completed datasheets (N=39) showed that a pain score often (N=17) did not result in any intervention. The majority of interventions that were undertaken consisted of a non pharmacological approach (N=19). Evaluation meetings indicated that the PACSLAC-D was considered useful, though the chosen procedure of standardized measurements twice a week was not yet ideal.This study demonstrates that although there was a high compliance rate, pain relieving interventions were not frequently applied.Tijdschr Gerontol Geriatr 2011; 42: 67-78.

[Interventions after diagnosing pain in nursing home residents with dementia: the pilot implementation of an observational pain scale (PACSLAC-D)]. / Interventies bij het signaleren van pijn bij verpleeghuisbewoners met dementie: de pilot implementatie van een pijnbeoordelingsinstrument (PACSLAC-D).

Pain occurs regularly among nursing home residents with dementia. There are indications that appliance of structural pain assessment can contribute to the adequate diagnosis of pain. The aim of this study is to gain insight into applied interventions after diagnosing pain with an observational pain scale (PACSLAC-D) among nursing home resident with dementia. During a six week period pain was measured twice a week, among 22 residents of a psychogeriatric nursing home ward, using the PACSLAC-D. Interventions undertaken as a result of a pain score were inventoried on a data-sheet. After the third and sixth week implementation of pain assessment was evaluated. In total 264 pain assessments using the PACSLAC-D were conducted. Of all scheduled standardized measurements 90% was completed. Sixty observations resulted in a pain score. Completed datasheets (N=39) showed that a pain score often (N=17) did not result in any intervention. The majority of interventions that were undertaken consisted of a non pharmacological approach (N=19). Evaluation meetings indicated that the PACSLAC-D was considered useful, though the chosen procedure of standardized measurements twice a week was not yet ideal. This study demonstrates that although there was a high compliance rate, pain relieving interventions were not frequently applied.

[Physical restraints in hospital. A systematic overview]. / Mechanische freiheitsentziehende Maßnahmen im Krankenhaus. Ein systematischer Literaturüberblick.

Physical restraints have been subject of extensive public debate during recent years. Reliable epidemiological data demonstrate that these devices are used as routine measures in nursing homes. However, less is known about the frequency of physical restraint use in hospitals. This overview aims to identify and critically appraise prevalence and incidence studies on physical restraints in hospitals. A systematic literature search covering CINAHL, Embase, and Medline revealed 72 references. Eight studies met the inclusion criteria. Only 4 studies present a precise definition of physical restraint measures, and these definitions vary. Bedrails are included in only 2 studies. Data collection methods cover interviews with nurses, analysis of patients' records, and direct observations. Only 4 studies mention the rationale for the chosen sample size. Two out of 8 studies mention valid steps to avoid bias. Overall, the methodological quality of the studies was limited. Only one small study presents data from German hospitals. Future epidemiological studies should adapt internationally consented quality criteria.

The Living Lab In Ageing and Long-Term Care: A Sustainable Model for Translational Research Improving Quality of Life, Quality of Care and Quality of Work.

There is a strong need in long-term care for scientific research, so older people and their families, health care professionals, policy makers, and educators can benefit from new advancements and best available evidence in every day care practice. This paper presents the model of a sustainable and successful interdisciplinary collaboration between scientists, care providers and educators in long-term care: the "Living Lab in Ageing and Long-Term Care" by Maastricht University in the Netherlands. Its mission is to contribute with scientific research to improving i) quality of life of older people and their families; ii) quality of care and iii) quality of work of those working in long-term care. Key working mechanisms are the Linking Pins and interdisciplinary partnership using a team science approach, with great scientific and societal impact. A blueprint for the model is discussed, describing its business model and challenges in getting the model operational and sustainable are discussed.

Neonatal procedural pain exposure and pain management in ventilated preterm infants during the first 14 days of life.

OBJECTIVES: Ventilated preterm infants are at high risk for procedural pain exposure. In Switzerland there is a lack of knowledge about the pain management in this highly vulnerable patient population. The aims of this study were to describe the type and frequency of procedures and to determine the amount of analgesia given to this patient group in two Swiss neonatal intensive care units. METHOD: A retrospective cohort study was performed examining procedural exposure and pain management of a convenience sample of 120 ventilated preterm infants (mean age = 29.7 weeks of gestation) during the first 14 days of life after delivery and born between May 1st 2004 and March 31st 2006. RESULTS: The total number of procedures all the infants underwent was 38,626 indicating a mean of 22.9 general procedures performed per child and day. Overall, 75.6% of these procedures are considered to be painful. The most frequently performed procedure is manipulation on the CPAP prongs. Pain measurements were performed four to seven times per day. In all, 99.2% of the infants received either non-pharmacological and/or pharmacological agents and 70.8% received orally administered glucose as pre-emptive analgesia. Morphine was the most commonly used pharmacological agent. DISCUSSION: The number of procedures ventilated preterm infants are exposed to is disconcerting. Iatrogenic pain is a serious problem, particularly in preterm infants of low gestational age. The fact that nurses assessed pain on average four to seven times daily per infant indicates a commitment to exploring a painful state in a highly vulnerable patient population. In general, pharmacological pain management and the administration of oral glucose as a non-pharmacological pain relieving intervention appear to be adequate, but there may be deficiencies, particularly for extremely low birth weight infants born <28 weeks of gestation.

[Pain and physical (in)activity in relation to cognition and behaviour in dementia]. / Pijn en bewegen in relatie tot cognitie en gedrag bij dementie.

Older persons with dementia may become confronted with a decline in the level of physical activity. Indeed, a positive relationship between physical activity and cognition has been demonstrated. Although the causality of this relationship needs to be confirmed in advanced dementia, particularly animal experimental studies show the possible negative influence of restrained physical activity on behavior of patients with dementia. Patients with dementia, who get immobilized because of agitation and restlessness, may show an increase in these two symptoms. Another cause for reduced physical activity or inactivity may be the experience of pain. Pain experience may even increase in dementia by neuropathological changes in the central nervous system. There is an increasing (inter)national interest for the development of a more reliable assessment and treatment of pain, for the causality of the relationship between pain and physical (in)activity, and for the causality of the relationship between physical (in)activity and cognition in dementia. In the present paper, the various topics will be addressed in this order.

The use of community-based social services by elderly people at risk of institutionalization: an evaluation.

OBJECTIVE: To examine the use of community-based social services by elderly people at risk of institutionalization, who prefer to remain at home. METHODS: A study with a longitudinal design (measurements at two points in time) was conducted. RESULTS: One hundred and thirty-four elderly people (mean age=82 years) were interviewed twice. At baseline, 81 respondents indicated that they made use of at least one social service (60.4%). After 1 year the use of these services did not increase significantly (64.2%, p=0.53). Only two services (socio-cultural activities and restaurant facility) out of five services were used frequently. The respondents reported more autonomy and fewer feelings of loneliness after 1 year. These positive changes cannot be related to an increased use of services. DISCUSSION: Overall, the use of social services remained moderate. This raises questions about the need for these services, the possible barriers and the ability of these social services to contribute to de-institutionalization.

Prevalence of urinary incontinence among community-dwelling adults receiving home care.

We conducted a cross-sectional survey in 2005 to determine the prevalence of and factors associated with urinary incontinence (UI) in adults receiving home care. Of the 2,866 patients surveyed, 46% suffered from UI; 6.5% had stress, 16.6% had urge, 9% had mixed, and 17.6% had functional incontinence. No diagnosis regarding type of UI had been established in 50.2%. Factors associated with UI were advanced age, higher body mass index, and impaired mobility. UI is prevalent in older persons receiving home care, but the lack of diagnosis of type of UI in half of the participants surveyed impedes management of UI.

Demand of elderly people for residential care: an exploratory study.

BACKGROUND: Because of the rapid aging population, the demand for residential care exceeds availability. This paper presents the results of a study that focuses on the demand of elderly people for residential care and determinants (elderly people's personal characteristics, needs and resources) that are associated with this demand. Furthermore, the accuracy of the waiting list as a reflection of this demand has been examined. METHODS: 67 elderly people waiting for admission into a home for the elderly, are subjected to semi-structured interviews. The data are analyzed by using multivariate statistics. RESULTS: Elderly people who indicate that they would refuse an offer of admission into a home for the elderly feel healthier (p = 0.02), have greater self-care agency (p = 0.02) and perceive less necessity of admission (p < 0.01), compared to those who would accept such an offer. Especially the inability to manage everyday activities and the lack of a social network are highly associated with the elderly people's demand for residential care. Furthermore, it is evident that waiting lists for homes for the elderly do not accurately reflect the demand for residential care, since 35% of the elderly people on a waiting list did not actually experience an immediate demand for residential care and stated that they would not accept an offer of admission. Quite a lot of respondents just registered out of a sense of precaution; a strategic decision dictated by current shortages in care provision and a vulnerable health status. CONCLUSION: The results contribute to the understanding of waiting lists and the demand for residential care. It became apparent that not everybody who asks for admission into a home for the elderly, really needed it. The importance of elderly people's resources like social networks and the ability to manage everyday activities in relation to the demand for care became clear. These findings are important because they indicate that resources also play a role in predicting elderly people's demand and as a result can guide the development and the (re)design of adequate health care services.

[Heart failure in nursing home residents]. / Hartfalen bij verpleeghuisbewoners.

OBJECTIVE: To determine the prevalence of heart failure (HF) in nursing home residents and to gain insight into the clinical characteristics of residents with heart failure. DESIGN: Multi-centre, observational, cross-sectional study. METHOD: 501 nursing home residents aged 65 years and over, in a department for chronic somatic diseases or a psychogeriatric department, participated in this study. The diagnosis of HF and the related characteristics were based on data collected from clinical examinations for heart failure (including history, physical examination, ECG, cardiac markers and echocardiography), patient records and questionnaires. A panel of two cardiologists and an internist-geriatrician made the final diagnosis of HF. RESULTS: The prevalence of HF in nursing home residents was 33%. Dyspnoea, oedema and a history of cardiac disease were more common in residents with heart failure. Diabetes mellitus and chronic obstructive pulmonary disease also appeared to be more prevalent in this group. In 54% of the residents with HF, the diagnosis had not previously been made. Diagnosis of HF was not confirmed by the expert panel in 31% of residents with a history of HF. CONCLUSION: Heart failure does indeed appear to be very prevalent in nursing home residents. Heart failure had not been previously diagnosed in many cases but also a previous diagnosis of heart failure could be disproved in many participants. It is therefore important that the diagnostic process for heart failure in nursing home residents be improved.

The role of the nurse in community continence care: a systematic review.

Urinary incontinence (UI) is a condition that is associated with decreased quality of life. Apart from this impact on quality of life, UI is also a very costly problem. It is recognised that 'usual care' for patients suffering from UI is not optimal. Specialised nurses can play an important role in the care for community-dwelling incontinent patients, as they have the appropriate interpersonal and technical skills to provide patient-tailored care. This systematic review analyses the effect of treatment by nurses on clinical and economic outcomes. A total of 12 randomised controlled trials (RCTs) were found, varying in terms of population, setting, outcome measurement and control/intervention. There is limited evidence that treatment by nurses results in a decrease in incontinence. No evidence was found for cost reduction. Recommendations are made for future studies.

Thallium-201 accumulation in myositis ossificans and in juxta-articular ossification.

We present the findings on 201Tl and 99mTc-MDP scintigraphy in three patients suffering from heterotopic ossification (two patients presenting with myositis ossificans and one patient presenting with juxta-articular ossification in combination with myositis ossificans). Since resection of the lesions has to be delayed until stabilization, 99mTc-MDP is often used as a parameter of lesional activity, although it is not optimal. For this clinical problem, we evaluated 201Tl scintigraphy as a marker of metabolic activity. In addition to the well-documented uptake of 99mTc-MDP, marked accumulation of 201Tl was observed in all heterotopic ossification sites. Hence, our results support the use of 201Tl scintigraphy in the therapeutic management and monitoring of conditions associated with ectopic ossification. On the other hand, although myositis ossificans is sometimes clinically, radiographically and even histologically confused with extraosseous osteogenic sarcoma, 201Tl accumulation may not be a helpful factor in the differential diagnosis due to the presence of tracer accumulation in both disorders.

The volume effect in radiation-related late small bowel complications: results of a clinical study of the EORTC Radiotherapy Cooperative Group in patients treated for rectal carcinoma.

PURPOSE: The purpose of this study was to quantify the correlation between irradiated small bowel volume and late occurring small bowel complications. METHODS: Small bowel volumes in the high-dose region were measured using orthogonal barium films for 203 patients treated for rectal carcinoma with pelvic postoperative radiotherapy to 50 Gy in an EORTC multicentric study. RESULTS: The 5-year estimate of late pelvic small bowel obstruction requiring surgery was 11%. No correlation between the irradiated small bowel volume and obstruction was detected. The actuarial 5-year estimate of chronic diarrhea varied from 31% in patients with irradiated small bowel volumes below 77 cm3 to 42% in patients with volumes over 328 cm3. This correlation was significant in the univariate and multivariate analysis (p = 0.025). The type of rectal surgery significantly influenced the incidence of chronic diarrhea and malabsorption, the actuarial 5-year estimate being 49% and 26% after low anterior resection and abdominoperineal resection, respectively (p = 0.04). CONCLUSIONS: This study demonstrated that there is a volume-effect in radiation-induced diarrhea at a dose of 50 Gy in 25 fractions. No volume-effect for small bowel obstruction was detected at this dose-level in pelvic postoperative radiotherapy. A review of the literature data on small bowel obstruction indicates that the volume effect at this dose level can only be demonstrated in patients who were treated with extended field radiotherapy (estimated small bowel volume 800 cm3) after intra-abdominal surgery.