Henriëtte G. van der Roest

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.

Polypharmacy and Mortality Among Nursing Home Residents With Advanced Cognitive Impairment: Results From the Shelter Study

INTRODUCTION Older adults with advanced cognitive impairment have a limited life expectancy and the use of multiple drugs is of questionable benefit in this population. The aim of the present study was to assess if, in a sample of nursing home (NH) residents with advanced cognitive impairment, the effect of polypharmacy on mortality differs depending on estimated life expectancy. METHODS Data were from the Services and Health for Elderly in Long TERm care (SHELTER) project, a study collecting information on residents admitted to 57 NHs in 8 European countries. Polypharmacy was defined as the concomitant use of 10 or more drugs. Limited life expectancy was estimated based on an Advanced Dementia Prognostic Tool (ADEPT) score of 13.5 or more. A Cognitive Performance Scale score of 5 or more was used to define advanced cognitive impairment. Participants were followed for 1 year. RESULTS Mean age of 822 residents with advanced cognitive impairment entering the study was 84.6 (SD 8.0) years, and 630 (86.6%) were women. Overall, 123 participants (15.0%) had an ADEPT score of 13.5 or more (indicating limited life expectancy) and 114 (13.9%) were on polypharmacy. Relative to residents with ADEPT score less than 13.5, those with ADEPT score of 13.5 or higher had a lower use of benzodiazepines, antidementia drugs, and statins but a higher use of beta-blockers, digoxin, and antibiotics. Polypharmacy was associated with increased mortality among residents with ADEPT score of 13.5 or more (adjusted hazard ratio [HR] 2.19, 95% confidence interval [CI]: 1.15-4.17), but not among those with ADEPT score less than 13.5 (adjusted HR 1.10, 95% CI: 0.71-1.71). DISCUSSION Polypharmacy is associated with increased mortality in NH residents with advanced cognitive impairment at the end of life. CONCLUSION These findings underline the need to assess life expectancy in older adults to improve the prescribing process and to simplify drug regimens.

Association of pain with behavioral and psychiatric symptoms among nursing home residents with cognitive impairment: Results from the SHELTER study

Summary Evidence from a large sample of frail elderly people in nursing homes reveals an association between pain and behavioral and psychiatric symptoms. Abstract The etiology of behavioral and psychiatric symptoms is generally considered to be multifactorial, and these symptoms often indicate a need for care or assistance, which may include the presence of uncontrolled pain. The aim of this cross‐sectional study was to assess the association of pain with behavioral and psychiatric symptoms in a population of nursing home (NH) residents with cognitive impairment in Europe. Data are from the SHELTER project, which contains information on NH residents in 8 countries. Pain was defined as any type of physical pain or discomfort in any part of the body in the 3 days before the assessment. The mean age of 2822 cognitively impaired residents entering the study was 84.1 (standard deviation 9.1) years, and 2110 (74.8%) were women. Of the total sample, 538 residents (19.1%) presented with pain. After adjusting for potential confounders, pain was significantly and positively associated with socially inappropriate behavior (odds ratio [OR] 1.37; 95% confidence interval [CI] 1.04–1.80), resistance to care (OR 1.41; 95% CI 1.08–1.83), abnormal thought process (OR 1.48; 95% CI 1.16–1.90), and delusions (OR 1.48; 95% CI 1.07–2.03). A borderline inverse association was observed with wandering (OR 0.74; 95% CI 0.55–1.00). In conclusion, this cross‐sectional study provides evidence from a large sample of frail elderly showing an association between pain and behavioral and psychiatric symptoms. Treatment models that put together assessment and treatment of pain and evaluate their effect on behavioral and psychiatric symptoms are needed.

Personalised caregiver support: effectiveness of psychosocial interventions in subgroups of caregivers of people with dementia

Insight into the characteristics of caregivers for whom psychosocial interventions are effective is important for care practice. Until now no systematic reviews were conducted into the effectiveness of psychosocial interventions for caregiver subgroups.

Polypharmacy in nursing home residents with severe cognitive impairment: Results from the SHELTER Study

Pharmacological treatment of older adults with cognitive impairment represents a challenge for prescribing physicians, and polypharmacy is common in these complex patients. The aim of the current study is to assess prevalence and factors related to polypharmacy in a sample of nursing home (nursing home) residents with advanced cognitive impairment.

Validity and reliability of the Dutch version of the Camberwell Assessment of Need for the Elderly in community-dwelling people with dementia.

BACKGROUND Tailor-made care in dementia requires an individual needs assessment. The Camberwell Assessment of Need for the Elderly (CANE) was developed to assess needs of older people with mental disorders. In this study the validity and reliability of the Dutch version of the CANE were studied among community-dwelling persons with dementia and their informal carers. METHOD Interviews were carried out with 236 people with mild to severe dementia and 322 informal carers; 69 informal carers were interviewed twice. Construct and criterion validity and test-retest reliability of the CANE were studied using data for informal carers. Construct validity was also studied for CANE ratings of people with dementia. RESULTS The construct validity of the CANE was good among people with dementia and informal carers. Criterion validity could be studied for 76.9% of the CANE items, and all significant correlations were convergent. Test-retest reliability of the CANE varied from poor to very good and was best on domains where needs were explicit and problems well defined. CONCLUSIONS Use of the Dutch version of the CANE among community-dwelling people with dementia and their carers is supported by the study results, with the study showing acceptable construct and criterion validity and test-retest reliability of the CANE.

Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom

Background The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia. Secondary outcome measures were empathy, quality of life, burden, and caregivers’ sense of competence. Results STAR was rated positively by all user groups on both usefulness and user friendliness. Significant effects were found on a person-centered care approach and on the total score on positive attitudes to dementia; both the experimental and the control group increased in score. Regarding empathy, significant improvements were found in the STAR training group on distress, empathic concern, and taking the perspective of the person with dementia. In the experimental group, however, there was a significant reduction in self-reported sense of competence. Conclusions The STAR training portal is a useful and user-friendly e-learning method, which has demonstrated its ability to provide significant positive effects on caregiver attitudes and empathy.

Memory problems in dementia: adaptation and coping strategies and psychosocial treatments

Memory problems are generally quite prominent in dementia and they have a significant impact on everyday functioning. Medication developed for Alzheimer’s disease, for example, acetylcholinesterase inhibitors, can slow down the increase of cognitive impairment for a while. In addition to pharmacotherapy, psychosocial treatment methods are also used, some of which have a positive effect on cognition, for example, cognitive rehabilitation, cognitive stimulation therapy and movement therapy. However, more research is needed. This article first describes the consequences of memory problems on the everyday life of people with dementia and summarizes research findings on how people with dementia experience and cope with their illness. We then discuss the most frequently applied psychosocial treatments for cognitive problems in dementia.

Technologies to support community-dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics

Background With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge. Objective The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research. Methods Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases. Results According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies. Conclusions Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them.

Dual Sensory Impairment and Cognitive Decline: The Results From the Shelter Study

OBJECTIVES To examine whether nursing home residents with concurrent vision and hearing impairment, dual sensory impairment (DSI), have a greater cognitive decline over time than do those without sensory impairment and whether social engagement modifies this association. METHODS Based on the Services and Health for Elderly in Long TERm Care study, 1,989 nursing home residents who were assessed using the interRAI LTCF at 6-month intervals over 1 year were included. Multivariate linear regression models with time-variant exposure variables of sensory impairment and social engagement using generalized estimating equations were performed to predict cognitive function measured by the Cognitive Performance Scale (range 0-6). RESULTS Residents with DSI had a greater cognitive decline [changes in Cognitive Performance Scale over 1 year = 1.12 (95% confidence interval = 0.81:1.42)] compared to those with either vision or hearing impairment [0.67 (0.53:0.64)] and those without sensory impairment [0.56 (0.48:0.64)]. A lower level of social engagement was also associated with a greater cognitive decline. The combined exposure variable of sensory impairment and social engagement revealed the greatest cognitive decline for socially disengaged residents with DSI [1.87 (1.24:2.51)] and the potential effect modification of social engagement on the association between DSI and cognitive decline; DSI was not associated with a greater cognitive decline among socially engaged residents, while it was associated among socially disengaged residents DISCUSSION Cognitive function declines faster in nursing home residents with DSI only when residents were not socially engaged. Therefore, residents with DSI might cognitively benefit from interventions to improve involvement in social life at nursing homes.