Els Derksen

What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services

BACKGROUNDnThe aging society will bring an increase in the number of people with dementia living in the community. This will mean a greater demand on care and welfare services to deliver efficient and customized care, which requires a thorough understanding of subjective and objective care needs. This study aims to assess the needs of community-dwelling people with dementia as reported by themselves and by their informal carers. The study also aims to give insight into the service use and gaps between needs and the availability of services.nnnMETHODSn236 community-dwelling people with dementia and 322 informal carers were interviewed separately. (Un)met needs were assessed using the Camberwell Assessment of Needs for the Elderly (CANE).nnnRESULTSnMost unmet needs were experienced in the domains of memory, information, company, psychological distress and daytime activities. People with dementia reported fewer (unmet) needs than their carers. Type and severity of dementia, living situation and informal carer characteristics were related to the number of reported needs.nnnCONCLUSIONSnThis study showed a large number of unmet needs in dementia. Reasons for unmet needs are lack of knowledge about the existing service offer, a threshold to using services and insufficient services offer. These results provide a good starting point for improving community care for people with dementia.

Receiving a diagnosis of dementia: The experience over time

There are strong opinions about the advantages and disadvantages of a disclosure of dementia to the individual affected, but little is known about how they and their families understand and respond to this information. This article reports and examines the impact of receiving a diagnosis of dementia, by comparing descriptions of its impact at two weeks, with descriptions explored at 12 weeks. Interviews were undertaken on two occasions with 18 couples, one of whom had received a diagnosis of dementia, the other being a family member. The interviews revealed a gradual process of realization of what the diagnosis meant, resulting in important subtle changes in understandings of dementia and personal relationships. Disclosure of dementia occurs at one point in time, but its impact should be seen as a process. Suggestions are made on how the process of diagnosis and its sharing may enhance family partnerships and social relationships through support of both individuals with dementia and families.

Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis

Adequate diagnostic information can be considered a basic intervention in dementia care. However, clear diagnostic disclosure in dementia is not yet regular practice and the evidence regarding patients’ preferences for or against disclosure is scarce. The aim of this study was to give an in-depth description of the impact of receiving the diagnosis of dementia, both on patients and the patients’ proxies. The method used was the design of a grounded theory interview study. Analysis of the interviews revealed that disclosure had an impact on three key domains: awareness of dementia, partnership, and social relationships. Most patients and carers reported that they had experienced the disclosure of the diagnosis as a confirmation of their assumptions. A minority of patients and carers felt threatened and shocked by the diagnosis, because they did not expect it. The findings of this analysis challenge current opinions and practice about diagnostic disclosure like obstacles anticipated by clinicians such as inducing negative feelings and causing harm. Disclosure of the diagnosis of dementia can generally be carried out without introducing stress for the patient or carer and facilitates guidance. Therefore regular practice should include the careful planning and performance of diagnostic disclosure.

The impact of diagnostic disclosure in dementia: a qualitative case analysis

OBJECTIVEnThe aim of this study was to give an in-depth description of the impact of disclosure of the diagnosis of dementia on a patient and the patients partner.nnnMETHODSnGrounded theory interview study.nnnRESULTSnAnalysis of the interviews revealed that disclosure had an impact on three key domains: awareness of dementia, interpersonal relationship and social relationships. Disclosure was perceived as a confirmation of the pre-test ideas of both patient and carer. Formal disclosure of dementia was especially relevant for the carer in reconsidering her response to the patients changed behavior.nnnDISCUSSIONnReceiving the diagnosis of dementia can be considered as a crucial moment in the process of becoming aware of the changes in ones life. Moreover, disclosure marks a new phase in the process of caring by the caregiver.

Factors Related to Psychotropic Drug Prescription for Neuropsychiatric Symptoms in Nursing Home Residents With Dementia

OBJECTIVESnThe objective of this study is to explore factors that elucidate reasons for psychotropic drug (PD) prescription for neuropsychiatric symptoms (NPS) in nursing home (NH) residents with dementia.nnnDESIGNnA qualitative study using a grounded theory approach.nnnSETTINGnTwelve NHs in The Netherlands.nnnPARTICIPANTSnFifteen physicians and 14 nurses.nnnMEASUREMENTSnIndividual, face-to-face, in-depth semistructured interviews. Interviews were audio recorded, transcribed, and qualitatively analyzed using Atlas.ti.nnnRESULTSnThe qualitative analysis revealed 4 emerging themes with factors either or both enhancing or limiting PD prescription, which we used to develop a conceptual framework. First, the mindset of physicians and nurses toward NPS and PDs appeared to contribute. Second, inadequate knowledge of and experience with NPS and limited people skills of nurses may induce PD prescription. Also, knowledge of effectiveness and side effects of PDs from education, literature, and guidelines, and previous personal experiences was considered relevant. Third, effective communication and cooperation between professionals and with family may improve the appropriateness of PD prescription. Fourth, external factors including staffing issues, nursing home setting, access to consultants, national and local policies, and zeitgeist were considered to affect PD prescription.nnnCONCLUSIONnWe have developed a conceptual framework explaining how different factors influence PD prescription. This provides opportunities for improving PD prescription in NH residents with dementia.

A model for disclosure of the diagnosis of dementia

Introduction Diagnostic disclosure is considered a basic intervention in dementia care for both patient and carer (see the article by Vernooij-Dassen, Derksen, Scheltens & Moniz-Cook, this issue). Although it is standard practice in the Netherlands for clinicians to disclose a diagnosis of dementia, there are no guidelines available on the issue. In addition, medical records tend to include very little information on the reactions of patients and carers to disclosure. Previous research has shown that while people with dementia and carers appreciate disclosure, they are less satisfied with the information that they receive (van Hout, Vernooij-Dassen, Hoefnagels & Grol, 2001; Vernooij-Dassen,Van Hout, Hund, Hoefnagels & Grol, 2003), although a third of them do receive further advice in subsequent meetings (Vernooij-Dassen et al., 2003). Memory clinics connected to the three Dutch Alzheimercentra have responded to the results from this research by setting up a quality improvement process that focuses on diagnostic

Professionalisering van verpleeghuiszorg

Abstract The professionalization of nursing home careOne of the goals of the Nijmegen University Network of Nursing Homes is to develop an uniform registration system for patients’ characteristics. In a survey among eight institutions, the following results were found:n 1.the contents of the multidisciplinary care-files and careplans shows a large amount of similarity between the institutions and offers enough information to plan the primary care process. This is an important step to come to a minimal dataset;2.the institutions use a lot of assessment scales and instruments for observational and diagnostic purposes;3.registration of patient safety issues such as falls are already computerized as is prescription of medication;4.the institutions have no clear policy for developing a computerized care-file yet.SamenvattingHet UVNN werkt aan uniformering van de registratie van cliëntgegevens. Uit inventarisatie onder de acht verpleeghuisinstellingen blijkt dat:n 1.de inhoud van zorgdossiers en zorgplannen een grote mate van overeenstemming kent en een antwoord biedt op de vraag welke informatie nodig is voor het primaire proces. De eerste stap om te komen tot een minimale dataset is daarmee gezet;2.de instellingen ter observatie en diagnostiek een grote hoeveelheid en diversiteit aan meetschalen en instrumenten gebruiken;3.de Meldingen Incidenten Cliënten (MIC) registratie en medicatiegebruik geautomatiseerd verlopen en4.er nog veelal geen beleid is om te komen tot een Elektronisch Cliënt Dossier (ECD).

Dementie: een moeilijk te vertellen diagnose. Een systematisch literatuuronderzoek.

samenvattingJanson J, Derksen E, Vernooij-Dassen M, Lucassen P, Olde Rikkert M. Dementie: een moeilijk te vertellen diagnose. Een systematisch literatuuronderzoek. Huisarts Wet 2006;49(11):538-43.Inleiding Door de toenemende incidentie van dementie krijgen huisartsen steeds meer te maken met de diagnostiek van deze aandoening. Doel van dit literatuuronderzoek is in kaart te brengen wat de houding en werkwijze van huisartsen is ten aanzien van het meedelen van de diagnose dementie en wat de ervaringen van patiënten en mantelzorgers hiermee zijn.Methode Wij zochten met behulp van Cinahl, Psychinfo en MEDLINE naar artikelen en trokken de daarin genoemde referenties na. Twee onderzoekers beoordeelden de artikelen aan de hand van twee criteria: ze moesten over het meedelen van de diagnose dementie in de eerste lijn gaan en Nederlands- of Engelstalig zijn.Resultaat Na selectie van 477 artikelen bleven er 25 over. De sneeuwbalmethode voegde nog 4 artikelen toe. Huisartsen bleken terughoudend in het meedelen van de diagnose; patiënten en mantelzorgers ervoeren dit ook. Verder bleek er een verschil te bestaan tussen de opvattingen van artsen en hun praktisch handelen bij het meedelen van de diagnose.Beschouwing Door scholing zou de huisarts meer zekerheid en inzicht kunnen krijgen in het stellen en meedelen van de diagnose dementie en zijn rol daarin. Er is helaas maar weinig onderzoek gedaan dat primair is gericht op het meedelen van de diagnose dementie en de effecten daarvan in de eerste lijn.AbstractJanson J, Derksen E, Vernooij-Dassen M, Lucassen P, Olde Rikkert M. Dementia: difficulties in disclosing the diagnosis. A systematic review. Huisarts Wet 2006;49(11):538-43.Background General practitioners (GPs) more often will have to solve the diagnostic issues in dementia, because of it’s increasing incidence. In this review of current literature, we aim to describe the attitudes and practice of general practitioners in disclosing the diagnosis of dementia, as well as the experiences of patients and carers with this primary care disclosure of dementia.Methods We searched Cinahl, Psychinfo and MEDLINE databases. Two researchers judged the articles for the inclusion and exclusion criteria: papers had to present empirical data on disclosing dementia diagnosis, had to deal with primary care and had to be written in English or Dutch.Results 25 from the 477 articles found could be included. By tracking references 4 additional articles could be included. GPs turned out to be reluctant in disclosing dementia diagnosis, which was confirmed by patients’ and carers’ experiences. GPs’ attitudes on the one hand and their daily practice on disclosing dementia on the other differed substantially.Discussion By teaching GPs in dementia diagnostics and disclosure techniques, they could feel more confident and gain competency in disclosing the diagnosis. Unfortunately, research primary aimed at assessing the effects of different techniques of dementia disclosure in general practice is scarce.

Depressie opsporen en behandelen

SamenvattingDepressie is een groot probleem in verpleeghuizen. Gemiddeld heeft zo’n dertig procent van de bewoners een depressie, veel meer dan thuiswonende ouderen. Depressie heeft allerlei negatieve gevolgen voor de gezondheid en het welbevinden, maar is wel behandelbaar. Hoewel het opsporen en behandelen van depressie dus erg belangrijk is, worden depressiesymptomen vaak niet opgemerkt. Zorgmedewerkers weten dikwijls niet waarop ze moeten letten en depressieverschijnselen kunnen op symptomen van andere aandoeningen lijken, zoals dementie, diabetes en hart- en vaatziekten. Het zorgprogramma Doen bij Depressie, ontwikkeld door het Universitair Kennisnetwerk Ouderenzorg Nijmegen (UKON), kan hier uitkomst bieden.

Praktijk en universiteit moeten het samen doen.

SamenvattingBinnen het Universitair Verpleeghuisnetwerk Nijmegen (UVNN) werken zorginstellingen en universiteit samen in onderwijs en onderzoek ten behoeve van verpleeghuiszorg en ouderenzorg. Ouderenzorg heeft in het nieuwe geneeskundecurriculum een meer prominente plaats gekregen, waardoor meer vraag naar stageplaatsen binnen verpleeghuiszorginstellingen is ontstaan. Verpleeghuizen hebben veel belangstelling om betrokken te zijn bij onderwijs en onderzoek, zo blijkt uit een onderzoek onder verpleeghuizen, die verbonden zijn aan de opleiding tot verpleeghuisarts van het UMC St. Radboud. Verpleeghuizen onderschrijven dat onderzoek en onderwijs noodzakelijk zijn voor de vakontwikkeling van de verpleeghuisarts/sociaal geriater, die gespecialiseerde en patiëntgerichte zorg biedt aan kwetsbare ouderen binnen en buiten het verpleeghuis.SummaryIn the Nijmegen University Nursing Home Network the department of nursing home medicine and nine nursing home organisations work together in research projects and medical education in order to improve the quality of care for the nursing home patients. In the recently implemented bachelor-master structure of the medical education program of the Radboud University Nijmegen Medical Centre, healthcare for the elderly has received a more prominent place. Therefore, the need for trainee posts for medical students in nursing homes will increase. Our survey under trainers of the specialisttraining program for nursing home physicians and medical directors revealed that nursing homes are interested to participate in scientific research and medical education. Nursing homes underline the point of view that scientific research and education is necessary for the development of nursing home medicine and will add to quality improvement of the specialised and patient centred care to frail elderly inside the nursing home and to frail elderly people at home.