Sterven met dementie

Steeds meer mensen zijn bij overlijden dement. Toch is er tot voor kort nauwelijks onderzoek gedaan naar sterven met dementie en de zorg rondom het levenseinde. In dit overzichtsartikel wordt een stand van zaken gegeven over onderzoek op dit gebied. Er zijn vijf deelgebieden te onderscheiden: prognose, besluitvorming, behandelingen, gezondheidstoestand / lijden van de patiënt, en de situatie van de familie en diens tevredenheid met de zorg. Het meeste onderzoek vond plaats in Amerika, in verpleeghuizen. Er zijn risicoscores voor overlijden binnen een half of één jaar ontwikkeld, en in diverse settings is kwalitatief onderzoek naar besluitvorming uitgevoerd. De laatste drie gebieden zijn voornamelijk in kaart gebracht door een serie kleine, retrospectieve onderzoeken. Twee lopende prospectieve onderzoeken bij verpleeghuispatiënten volgen besluitvorming en gaan niet alleen in op de mate van lijden van de patiënt en (on)tevredenheid van familie bij het levenseinde, maar bovenal op associaties met lijden en (on)tevredenheid. Dit zijn het CASCADE project in Boston en omgeving en het Nederlandse onderzoek 'Zorg bij Dementie'. Deze onderzoeken moeten het mogelijk maken om inzicht te krijgen in de meest geschikte interventies om zorg rondom het levenseinde van patiënten met dementie in de betreffende landen en elders te verbeteren

Selection bias in family reports on end of life with dementia in nursing homes

Background: Selective participation in retrospective studies of families recruited after the patient's death may threaten generalizability of reports on end-of-life experiences. Objectives: To assess possible selection bias in retrospective study of dementia at the end of life using family reports. Methods: Two physician teams covering six nursing home facilities in the Netherlands reported on 117 of 119 consecutive decedents within two weeks after death unaware of after-death family participation in the study. They reported on characteristics; treatment and care; overall patient outcomes such as comfort, nursing care, and outcomes; and their own perspectives on the experience. We compared results between decedents with and without family participation. Results: The family response rate was 55%. There were no significant differences based on participation versus nonparticipation in demographics and other nursing home resident characteristics, treatment and care, or overall resident outcome. However, among participating families, physicians perceived higher-quality aspects of nursing care and outcome, better consensus between staff and family on treatment, and a more peaceful death. Participation was less likely with involvement of a new family member in the last month. Conclusions: Families may be more likely to participate in research with more harmonious teamwork in end-of-life caregiving. Where family participation is an enrollment criterion, comparing demographics alone may not capture possible selection bias, especially in more subjective measures. Selection bias toward more positive experiences, which may include the physician's and probably also the family's experiences, should be considered if representativeness is aimed for. Future work should address selection bias in other palliative settings and countries, and with prospective recruitment

The MDS Challenging Behavior Profile for long-term care

The objective was to construct a reliable and valid challenging behavior scale with items from the Minimum Data Set (MDS). Exploratory factor analyses of a sample of 656 nursing home residents yielded a 16-item Behavior Profile containing four internally consistent and valid subscales measuring conflict behavior, withdrawn behavior, agitation and attention seeking behavior (alpha range: 0.69–0.80). On a second dataset of 227 nursing home residents, internal consistency, inter-rater reliability and validity against the Behavior Rating Scale for Psychogeriatric Inpatients (GIP) were established. Internal consistency of the subscales ranged between 0.54 and 0.78. The overall inter-rater reliability of the items was 0.53 (kappa); of the scale it was 0.75 (ICC). TheMDSChallenging Behavior Profile could potentially be an important contribution to existing clinical MDS-scales but additional studies on reliability, validity and usefulness are needed

The effects of the implementation of snoezelen on the quality of working life in psychogeriatric care

BACKGROUND: Dementia among nursing home residents is often accompanied by high care dependency and behavioral disturbances, resulting in an increased workload for the caregivers. Snoezelen, integrated into 24-hour dementia care, is an approach that might improve the quality of working life of dementia caregivers. This study aims to investigate the effectiveness of integrated snoezelen on work-related outcomes (workload and psychological outcomes) of caregivers in psychogeriatric nursing homes. METHODS: A quasi-experimental pre- and post-test design was used, comparing six psychogeriatric wards that implemented snoezelen in 24-hour care to six control wards that continued giving usual care. One hundred and twenty-nine Certified Nursing Assistants (CNAs) were included in the pre-test and 127 CNAs in the post-test. The six intervention wards received a 4-day in-house training program. The intervention further consisted of implementation activities on the ward (e.g. stimulus preference screening, workgroup), three in-house follow-up meetings and two general meetings. Measurements on workload, perceived problems, stress reactions, job satisfaction and burnout were performed at baseline and after 18 months. RESULTS: A significant treatment effect in favor of the experimental group was found for time pressure, perceived problems, stress reactions and emotional exhaustion. CNAs of the experimental group also improved on their overall job satisfaction score. In particular, they were more satisfied with the quality of care and with their contact with residents. CONCLUSION: The implementation of snoezelen improved the quality of the working life of dementia caregiver

The concept of quality of life in dementia in the different stages of the disease

In order to conceptually define quality of life (QOL) in dementia, the literature on QOL in the elderly population, in chronic disease and in dementia was studied. Dementia is a progressive, age-related, chronic condition and to avoid omissions within the dementia-specific concept of QOL, a broad orientation was the preferred approach in this literature study. Adaptation is a major outcome in studies investigating interventions aimed at improving QOL in chronic conditions, but to date, it has not been used in the definition of QOL. It is argued that adaptation is an important indication of QOL in people with chronic diseases and therefore also in dementia. Some crucial issues in assessing dementia-related QOL that are relevant to clarify the continuing debate on whether QOL, particularly in dementia, can be measured at all, are discussed. Then the following conceptual definition is offered: dementia-specific QOL is the multidimensional evaluation of the person-environment system of the individual, in terms of adaptation to the perceived consequences of the dementi

Construction and validation of a patient- and user-friendly nursing home version of the Geriatric Depression Scale.

Objective To construct a patient- and user-friendly shortened version of the Geriatric Depression Scale (GDS) that is especially suitable for nursing home patients. Methods The study was carried out on two different data bases including 23 Dutch nursing homes. Data on the GDS (n¼410), the Mini Mental State Examination (n¼410) and a diagnostic interview (SCAN; n¼333), were collected by trained clinicians. Firstly, the items of the GDS-15 were judged on their clinical applicability by three clinical experts. Subsequently, items that were identified as unsuitable were removed using the data of the Assess project (n¼77), and internal consistency was calculated. Secondly, with respect to criterion validity (sensitivity, specitivity, area under ROC and positive and negative predictive values), the newly constructed shortened GDS was validated in the AGED data set (n¼333), using DSM-IV diagnosis for depression as measured by the SCAN as ‘gold standard’. Results The eight-item GDS that resulted from stage 1 showed good internal consistency in both the Assess data set (a¼0.86) and the AGED dataset (a¼0.80). In the AGED dataset, high sensitivity rates of 96.3% for major depression and 83.0% for minor depression were found, with a specificity rate of 71.7% at a cut-off point of 2/3. Conclusion The GDS-8 has good psychometric properties. Given that the GDS-8 is less burdening for the patient, more comfortable to use and less time consuming, it may be a more feasible screening test for the frail nursing home population

Palliatieve zorg en de geneeskunde voor ouderen

"Concentrating on diagnosing the disease for which often little can be done, can lead to ignoring or underplaying symptoms or disabilities for which often much can be done." Deze uitspraak van Mary Tinetti geeft treffend weer hoezeer geriatrie en palliatieve zorg eigenlijk onderling verwant zijn in focus en oriëntatie. Beide keren zich af van een louter ziektegericht medisch handelen en beide opteren in plaats daarvan voor een brede benadering, waarin de patiënt met zijn of haar problemen, mogelijkheden en beperkingen, maar ook met zijn of haar waarden en relaties centraal staat

Het vóórkomen van ulcera in verpleeghuizen

Inleiding Vanuit de landelijke prevalentiemetingen is bekend dat een op de drie patiënten in het verpleeghuis decubitus heeft. Het is niet bekend hoe vaak andere ulcera vóórkomen. Methode In totaal zijn er 2295 patiënten uit acht verpleeghuizen beoordeeld met de Minimum Data Set (MDS). Ruim 70% was vrouw en de gemiddelde leeftijd was 82,9 (SD 7,4). Een derde deel was ernstig cognitief beperkt, en slechts 17% had geen of weinig beperkingen in de ADL. Resultaten De decubitus prevalentie voor de verschillende stadia was als volgt: stadium 1: 3,6%; stadium 2: 2,5%; stadium 3: 1,2%; stadium 4: 0,8%. Het hebben van decubitus was sterk gerelateerd met ADL afhankelijkheid: Odds Ratio (OR) 8,4 voor matige ADL-afhankelijkheid, en OR 35,4 voor sterke ADL-afhankelijkheid. Patiënten met decubitus hadden vaker pijn (OR 2,7) en depressieve symptomen (OR 2,1). Faeces-incontinentie was significant gecorreleerd (OR 2,6) met decubitus, net als het gebruik van een katheter (OR 3,2) en incontinentiemateriaal (OR 2,2), urine-incontinentie was niet gecorreleerd met decubitus. De prevalentie van veneus ulcus was 2,6% en 1,7% had een veneus ulcus hoger dan stadium 1. Bij 1,2% was sprake van een voet ulcus bij diabetes mellitus. Bij 0,7% was sprake van een ulcus bij een perifere vaatziekte. Het gebruik van drukontlastende maatregelen voor decubitus nam toe met ADL afhankelijkheid, desondanks gebruikte slechts 44% van de sterk ADLafhankelijke patiënten deze maatregelen