Aaltje P. D. Jansen

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

BACKGROUND The 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. METHODS 236 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). RESULTS Most 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. CONCLUSIONS This 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.

The identification of frail older adults in primary care: comparing the accuracy of five simple instruments

BACKGROUND many instruments are available to identify frail older adults who may benefit from geriatric interventions. Most of those instruments are time-consuming and difficult to use in primary care. OBJECTIVE to select a valid instrument to identify frail older adults in primary care, five simple instruments were compared. METHODS instruments included clinical judgement of the general practitioner, prescription of multiple medications, the Groningen frailty indicator (GFI), PRISMA-7 and the self-rated health of the older adult. Frieds frailty criteria and a clinical judgement by a multidisciplinary expert panel were used as reference standards. Data were used from the cross-sectional Dutch Identification of Frail Elderly Study consisting of 102 people aged 65 and over from a primary care practice in Amsterdam. In this study, frail older adults were oversampled. We estimated the accuracy of each instrument by calculating the area under the ROC curve. The agreement between the instruments and the reference standards was determined by kappa. RESULTS frailty prevalence rates in this sample ranged from 11.6 to 36.4%. The accuracy of the instruments ranged from poor (AUC = 0.64) to good (AUC = 0.85). CONCLUSION PRISMA-7 was the best of the five instruments with good accuracy. Further research is needed to establish the predictive validity and clinical utility of the simple instruments used in this study.

The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A large-scale data sharing initiative

Introduction In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons’ health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu). Materials and Methods A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden). Results Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies. Discussion TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.

Effectiveness of case management among older adults with early symptoms of dementia and their primary informal caregivers: A randomized clinical trial

BACKGROUND It is believed that timely recognition and diagnosis of dementia is a pre-condition for improving care for both older adults with dementia and their informal caregivers. However, diagnosing dementia often occurs late in the disease. This means that a significant number of patients with early symptoms of dementia and their informal caregivers may lack appropriate care. OBJECTIVES To compare the effects of case management and usual care among community-dwelling older adults with early symptoms of dementia and their primary informal caregivers. DESIGN Randomized controlled trial with measurements at baseline and after 6 and 12 months. SETTING Primary care in West-Friesland, the Netherlands. PARTICIPANTS 99 pairs of community-dwelling older adults with dementia symptoms (defined as abnormal screening for symptoms of dementia) and their primary informal caregivers. INTERVENTION 12 months of case management by district nurses for both older adults and informal caregivers versus usual care. MEASUREMENTS PRIMARY OUTCOME informal caregivers sense of competence. SECONDARY OUTCOMES caregivers quality of life, depressive symptoms, and burden, and patients quality of life. Process measurements: intervention fidelity and caregivers satisfaction with the quality of case management. RESULTS Linear mixed model analyses showed no statistically significant and clinically relevant differences over time between the two groups. The process evaluation revealed that intervention fidelity could have been better. Meanwhile, informal caregivers were satisfied with the quality of case management. CONCLUSION This study shows no benefits of case management for older adults with dementia symptoms and their primary informal caregivers. One possible explanation is that case management, which has been recommended among diagnosed dementia patients, may not be beneficial if offered too early. However, on the other hand, it is possible that: (1) case management will be effective in this group if more fully implemented and adapted or aimed at informal caregivers who experience more severe distress and problems; (2) case management is beneficial but that it is not seen in the timeframe studied; (3) case management might have undetected small benefits. This has to be established. Trial registration ISCRTN83135728.

Prevention of Adverse Health Trajectories in a Vulnerable Elderly Population Through Nurse Home Visits: A Randomized Controlled Trial [ISRCTN05358495]

OBJECTIVE Can indicative prevention of home-visiting nurses be effective when targeted at a frail senior population using multidimensional geriatric assessments and personalized care plans? METHODS We performed an individually randomized controlled trial in 33 blinded primary care practices over 18 months. The 651 participants were aged 75 years or older, lived at home, and were frail but neither terminally ill nor demented. A score in the lowest quartile on at least two of six self-reported functional health domains (COOP-WONCA charts), defined frail health. We compared usual care with proactive home visits by trained community nurses. The nurses (a) assessed the care needs with a multidimensional computerized geriatric instrument, which enabled direct identification of health risks; (b) determined care priorities together with the person; (c) designed and executed individually tailored interventions; and (d) monitored participants by telephone and on average three home visits. Primary outcome measures were functional health and instrumental activities of daily living disability. Secondary outcomes were acute hospital admittance (time until), institutionalization, and mortality. RESULTS We found no significant differences between intervention and usual care group on any of the outcome measures. Predefined subgroup analyses revealed a higher risk of hospital admission for persons with poor health in the intervention group. CONCLUSIONS We could not demonstrate preventive effects of home visits by nurses in vulnerable older persons. Hospital admissions increased in the frailest group. The search for effective interventions for vulnerable persons requires further investigation. Future efforts may focus on improved integrated approaches.

Implementing the chronic care model for frail older adults in the Netherlands: study protocol of ACT (frail older adults: care in transition)

BackgroundCare for older adults is facing a number of challenges: health problems are not consistently identified at a timely stage, older adults report a lack of autonomy in their care process, and care systems are often confronted with the need for better coordination between health care professionals. We aim to address these challenges by introducing the geriatric care model, based on the chronic care model, and to evaluate its effects on the quality of life of community-dwelling frail older adults.Methods/designIn a 2-year stepped-wedge cluster randomised clinical trial with 6-monthly measurements, the chronic care model will be compared with usual care. The trial will be carried out among 35 primary care practices in two regions in the Netherlands. Per region, practices will be randomly allocated to four allocation arms designating the starting point of the intervention. Participants: 1200 community-dwelling older adults aged 65 or over and their primary informal caregivers. Primary care physicians will identify frail individuals based on a composite definition of frailty and a polypharmacy criterion. Final inclusion criterion: scoring 3 or more on a disability case-finding tool. Intervention: Every 6 months patients will receive a geriatric in-home assessment by a practice nurse, followed by a tailored care plan. Expert teams will manage and train practice nurses. Patients with complex care needs will be reviewed in interdisciplinary consultations. Evaluation: We will perform an effect evaluation, an economic evaluation, and a process evaluation. Primary outcome is quality of life as measured with the Short Form-12 questionnaire. Effect analyses will be based on the “intention-to-treat” principle, using multilevel regression analysis. Cost measurements will be administered continually during the study period. A cost-effectiveness analysis and cost-utility analysis will be conducted comparing mean total costs to functional status, care needs and QALYs. We will investigate the level of implementation, barriers and facilitators to successful implementation and the extent to which the intervention manages to achieve the transition necessary to overcome challenges in elderly care.DiscussionThis is one of the first studies assessing the effectiveness, cost-effectiveness and implementation process of the chronic care model for frail community-dwelling older adults.Trial registrationThe Netherlands National Trial Register NTR2160.

Self-perceived met and unmet care needs of frail older adults in primary care.

In order to provide adequate care for frail older adults in primary care it is essential to have insight into their care needs. Our aim was to describe the met and unmet care needs as perceived by frail older adults using a multi-dimensional needs assessment, and to explore their associations with socio-demographic and health-related characteristics. Cross-sectional baseline data were used from the Frail older Adults: Care in Transition (ACT) study in the Netherlands, consisting of 1137 community dwelling frail older adults aged 65 and above. Patients were recruited through 35 primary care practices. Self-perceived care needs were assessed using the Camberwell Assessment of Need for the Elderly (CANE). Socio-demographic characteristics included age, sex, partner status and educational level. Health-related characteristics included functional capacity, hospital admissions, chronic diseases and the degree of frailty. Frail older adults reported on average 4.2 care needs out of 13 CANE topics, of which 0.5 were unmet. The physical and environmental domain constituted the highest number of needs, but these were mostly met. Unmet needs were mainly found in the psychosocial domain. Regression analyses revealed that Activities of Daily Living (ADL) limitations and a higher frailty score were the most important determinants of both met and unmet care needs. A younger age and a higher educational level were associated with the presence of unmet care needs. In conclusion, most frail older adults in primary care report to receive sufficient help for their physical needs. More attention should be paid to their psychosocial needs.

Effectiveness of a Geriatric Care Model for frail older adults in primary care: Results from a stepped wedge cluster randomized trial.

BACKGROUND Primary care-based comprehensive care programs have the potential to improve outcomes in frail older adults. We evaluated the impact of the Geriatric Care Model (GCM) on the quality of life of community-dwelling frail older adults. METHODS A 24-month stepped wedge cluster randomized controlled trial was conducted between May 2010 and March 2013 in 35 primary care practices in the Netherlands, and included 1147 frail older adults. The intervention consisted of a geriatric in-home assessment by a practice nurse, followed by a tailored care plan. Reassessment occurred every six months. Nurses worked together with primary care physicians and were supervised and trained by geriatric expert teams. Complex patients were reviewed in multidisciplinary consultations. The primary outcome was quality of life (SF-12). Secondary outcomes were health-related quality of life, functional limitations, self-rated health, psychological wellbeing, social functioning and hospitalizations. RESULTS Intention-to-treat analyses based on multilevel modeling showed no significant differences between the intervention group and usual care regarding SF-12 and most secondary outcomes. Only for IADL limitations we found a small intervention effect in patients who received the intervention for 18months (B=-0.25, 95%CI=-0.43 to -0.06, p=0.007), but this effect was not statistically significant after correction for multiple comparisons. CONCLUSION The GCM did not show beneficial effects on quality of life in frail older adults in primary care, compared to usual care. This study strengthens the idea that comprehensive care programs add very little to usual primary care for this population. TRIAL REGISTRATION The Netherlands National Trial Register NTR2160.

Comparing Measurement Properties of the EQ-5D-3L, ICECAP-O, and ASCOT in Frail Older Adults

BACKGROUND The ICEpop CAPability measure for Older people (ICECAP-O) and the Adult Social Care Outcomes Toolkit (ASCOT) are preference-based measures for assessing quality of life (QOL) from a broader perspective than do traditional health-related QOL measures such as the EuroQol five-dimensional questionnaire (EQ-5D). Measurement properties of these instruments have not yet been directly compared. OBJECTIVE The purpose of this study was to compare the test-retest reliability, construct validity, and responsiveness of the three-level EQ-5D (EQ-5D-3L), ICECAP-O, and ASCOT in frail older adults living at home. METHODS Cross-sectional data and longitudinal data were used. Parameters for reliability (the intraclass correlation coefficient) and agreement (standard error of measurement) were used to assess test-retest reliability after 1 week. We formulated hypotheses about correlations with other measures and tested these to assess construct validity and responsiveness (longitudinal validity). RESULTS The reliability parameters for all three scales were considered good (intraclass correlation coefficient values above 0.70). Standard error of measurement values were less than 10% of the scale. Hypotheses regarding construct validity were in general accepted; the EQ-5D-3L was more strongly associated with physical limitations than were ICECAP-O and ASCOT and less strongly with instruments measuring aspects beyond health. Longitudinally, as hypothesized, mental health was most strongly associated with ICECAP-O, and self-perceived QOL, mastery, and client-centeredness of home care most strongly with ASCOT. CONCLUSIONS Our findings support the adoption of ICECAP-O and ASCOT as outcome measures in economic evaluations of care interventions for older adults that have a broader aim than health-related QOL because they are at least as reliable as the EQ-5D-3L and are associated with aspects of QOL broader than health.

Design and pilot results of a single blind randomized controlled trial of systematic demand-led home visits by nurses to frail elderly persons in primary care [ISRCTN05358495]

AbstractBackgroundThe objective of this article is to describe the design of an evaluation of the cost-effectiveness of systematic home visits by nurses to frail elderly primary care patients. Pilot objectives were: 1. To determine the feasibility of postal multidimensional frailty screening instruments; 2. to identify the need for home visits to elderly.MethodsMain study: The main study concerns a randomized controlled in primary care practices (PCP) with 18 months follow-up and blinded PCPs. Frail persons aged 75 years or older and living at home but neither terminally ill nor demented from 33 PCPs were eligible. Trained community nurses (1) visit patients at home and assess the care needs with the Resident Assessment Instrument-Home Care, a multidimensional computerized geriatric assessment instrument, enabling direct identification of problem areas; (2) determine the care priorities together with the patient; (3) design and execute interventions according to protocols; (4) and visit patients at least five times during a year in order to execute and monitor the care-plan. Controls receive usual care. Outcome measures are Quality of life, and Quality Adjusted Life Years; time to nursing home admission; mortality; hospital admissions; health care utilization. Pilot 1: Three brief postal multidimensional screening measures to identify frail health among elderly persons were tested on percentage complete item response (selected after a literature search): 1) Vulnerable Elders Screen, 2) Strawbridges frailty screen, and 3) COOP-WONCA charts. Pilot 2: Three nurses visited elderly frail patients as identified by PCPs in a health center of 5400 patients and used an assessment protocol to identify psychosocial and medical problems. The needs and experiences of all participants were gathered by semi-structured interviews.DiscussionThe design holds several unique elements such as early identification of frail persons combined with case-management by nurses.From two pilots we learned that of three potential postal frailty measures, the COOP-WONCA charts were completed best by elderly and that preventive home visits by nurses were positively evaluated to have potential for quality of care improvement.