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.

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.

[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.

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.

[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.

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.

The use of social services by community-dwelling older persons who are at risk of institutionalization: a survey.

The use of community-based social services additionally to regular home help services to support older persons at risk of institutionalization was studied. Structured interviews were held with 292 persons, who specifically pointed out that they prefer to remain independently at home. Bivariate and multivariate logistic regression models were developed to study the association between social service use and personal, health-related and wellbeing characteristics. 195 respondents indicated that they made use of at least one social service (68%). Only three services (individual care, social-cultural activities and restaurant facilities), out of nine, were used regularly. Those who lived in a sheltered environment or were supported by informal caregivers or who visited day care had a significantly higher probability of using these services. More attention should be given to the nature and accessibility of community-based social services in order to have distinctive added value in enabling older persons to age in place.

[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.

Quality systems to improve care in older patients with urinary incontinence receiving home care: do they work?

OBJECTIVE: To gain insight into the use of quality systems to improve urinary incontinence (UI) care in older adults receiving home care and to assess the associations between these quality systems and UI-related process and patient outcomes. DESIGN: Cross-sectional survey. SETTING: 19 home care agencies in the Netherlands comprising 155 home care teams. SAMPLE: 3480 adults aged 65 years and older, screened for UI. MAIN OUTCOME MEASURES: Percentage of patients with UI, percentage of patients with a diagnosis regarding type of UI, mean amount of urine loss and mean frequency of urine loss. RESULTS: The quality systems most commonly used included appointing a continence nurse (at the home care agency level) and documenting UI-related actions in the patient's record (home care teams). Mixed model analyses revealed no associations between the quality systems and the UI process or patient outcomes. CONCLUSION: Most home care agencies and home care teams claim that they adopt quality systems to improve UI care for older adults. However, no associations were found between these quality systems and the UI process or patient outcomes. More research with a precise monitoring of implemented systems is therefore needed to gain insight into the effectiveness of quality systems and their applicability in the home care setting.

Reliability study in five languages of the translation of the pain behavioural scale Doloplus.

Non-verbal pain assessment scales are useful tools for pain evaluation in persons with communication disorders and moderate-severe dementia. The Doloplus was one of the first scales to be developed and validated as a pain assessment tool in older adults with dementia. This study aims at evaluating the translation of the Doloplus scale in five languages, as regards test-retest and inter-rater reliability. Results show that both tests are good or excellent for the English, Italian, Portuguese and Spanish versions and moderate for the Dutch version. These results bring a unique opportunity to include the translated Doloplus scale in daily assessment of elderly persons with communication disorders, and future studies should focus on enriching the validation of the scale in each language.

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.

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.

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.