Franka Meiland

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.

Effect of Meeting Centres Support Program on feelings of competence of family carers and delay of institutionalization of people with dementia

The study tested the hypotheses that integrated support, in which patients and carers are both supported by one professional staff member, will be more effective in reducing the feelings of (over)burden of carers and in positively influencing some potential determinants of experienced burden than non-integrated support, such as psychogeriatric day-care. A quasi-experimental pre-test/post-test control group design was applied with matched groups and measurements at baseline and after seven months. Fifty-five of the eighty dyads (31% dropped out) of persons with mild-to-moderate dementia and their carers who presented for four community meeting centres and three day-care centres in nursing homes over an 18 month period, were included in the study. The carers in the Meeting Centres Support (MCS) Program participated in an integrated family support program together with the persons with dementia, while the carers in the control group only received respite through psychogeriatric day-care. Standardized questionnaires were applied to measure some indicators of burden experienced by the carers (feelings of stress, life dissatisfaction, psychological and psychosomatic complaints), as well as some potential determinants of experienced burden (feeling of competence, coping strategies, experienced support and loneliness). Furthermore, as an indicator of feelings of (over)burden of the carer, the time between start of participation in one of the programs and institutionalization in a nursing home was calculated. After seven months the carers in the MCS group (n = 36), compared to the carers in regular psychogeriatric day-care (n = 19), showed a moderate positive effect on the feeling of competence (effect size 0.45). No effect was found on feelings of stress, dissatisfaction or psychological and psychosomatic complaints. However, as compared to the control group in regular day-care, the persons with dementia in the MCS Program participated for a longer period of time before they were placed in a nursing home. The MCS Program proved more effective than psychogeriatric day-care in influencing the feeling of competence of the carers, and seems to lead to an increased delay of nursing home placement of the person with dementia, as compared to regular day-care. Because of the small sample and limited power of the study, and the possible influence of the selection of carers on the study outcome, further research into the value of meeting centres for carers of people with dementia is recommended.

A user driven approach to develop a cognitive prosthetic to address the unmet needs of people with mild dementia

This paper aims to provide the details of the approach adopted in the development of a cognitive prosthetic aimed to help address the unmet needs of people with mild dementia. The approach adopted is based on a waterfall style approach consisting of a series of three phases each of which contributes to the progression and improvement of a cognitive prosthetic-based solution. Within each phase, distinct stages of design, development and evaluation of the cognitive solution are conducted. The current paper discusses the distinct stages conducted in the first phase of the project which resulted in the design and development of a user driven solution based on the needs of 17 patient/carer dyads across three trial sites.

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.

Personalized dementia care: proven effectiveness of psychosocial interventions in subgroups

Many psychosocial intervention studies report effects in subgroups of people with dementia. Insight into the characteristics of these subgroups is important for care practice. This study reviews personal characteristics of people with dementia (living in the community or in an institution) that are related to positive outcomes of psychosocial interventions. Electronic databases and key articles were searched for effect studies published between January 1990 and February 2008. Outcome measures were clustered into categories such as cognitive functioning, behavioural functioning and mental health. Seventy-one studies showed positive outcomes on psychosocial interventions, such as decreased depression and less behavioural problems, related to personal characteristics of people with dementia, such as gender, type or severity of dementia, presence of behavioural or mental health problems, and living situation. For people with dementia living in the community positive effects were most frequently found in the persons with mild to severe dementia not otherwise specified and with mild to moderate Alzheimers Disease. For people with dementia living in an institution positive effects were found most frequently in the subgroups moderate to severe dementia, severe to very severe dementia and in the subgroup with behavioural problems. This study provides a unique overview of characteristics that are related to effective intervention outcomes. It also suggests that more research will lead to a better understanding of which care and welfare interventions are effective for specific subgroups of people with dementia.

Effect of the Meeting Centres Support Program on informal carers of people with dementia: Results from a multi-centre study

Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research. Within the framework of a study into the national implementation of the MCSP, it was investigated whether the positive effects found in carers that participated in the first Amsterdam Meeting Centres, were also achieved in other regions of The Netherlands. A pre-test–post-test control group design with matched groups was applied. In total, 94 carers in the MCSP in eight meeting centres and 34 carers of dementia patients who frequented regular psychogeriatric day care (PDC) in three nursing homes were included in the study. During the study period 23 carers of the MCSP group and 21 carers of the PDC group dropped out. At baseline and after seven months indicators of burden (psychological and psychosomatic symptoms, feelings of burden and time between start of support and institutionalization of the persons with dementia) were measured, as well as potential determinants of burden (sense of competence, coping strategies, experienced support, loneliness and the emotional impact of behaviour problems). Though on a group level no effect was found, either in psychological and psychosomatic symptoms or in the determinants of burden, a subgroup of carers who felt lonely (n = 22) at baseline benefited significantly more from the MCSP than from PDC in terms of psychological and psychosomatic symptoms. A majority of MCSP carers (82.1%) experienced less burden and more professional support. After seven months significantly fewer persons with dementia in the MCSP (4%) were institutionalized as compared to the patients in PDC (29%). Patients in the MCSP participated for a longer period of time before institutionalization. Although the effect on sense of competence of carers that was found in the Amsterdam study was not found in this multi-centre study, the effect on burden and delayed institutionalization of the person with dementia were confirmed. The integrated MCSP also proved more effective than PDC in decreasing psychological and psychosomatic symptoms in lonely carers. Further dissemination of the MCSP is therefore recommended.

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.

User evaluation of the DEMentia-specific Digital Interactive Social Chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and, usefulness

Objective: The need for information about the disease and coping with the consequences, as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community-dwelling people with dementia with tailored information, the DEMentia-specific dynamic interactive social chart (DEM-DISC) was developed. The impact on the daily life of people with dementia and their carers, the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated. Method: DEM-DISC was tested among informal carers in a pretest–posttest control group design. Fourteen informal carers could access DEM-DISC at home during a two month period. Fourteen controls did not have access to DEM-DISC. Data were collected by separate interviews with people with dementia and carers at pretest and posttest, by means of digital logging, short telephone interviews, and a bottleneck checklist during the intervention period. Results: People with dementia and informal carers reported more met and less unmet needs after DEM-DISC use and carers in the experimental group reported higher levels of competence than controls. Although they were not explicitly satisfied with this first prototype of DEM-DISC, carers found DEM-DISC easy to learn and relatively user friendly. Carers acknowledged the systems benefits. Conclusion: The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC. It would be worthwhile to continue to develop DEM-DISC and to conduct randomized trials on the impact on patients and carers as well as the impact on nursing home admission and healthcare expenditure.

Usability of a new electronic assistive device for community-dwelling persons with mild dementia

Objective: To evaluate a newly developed integrated digital prosthetic, the COGKNOW Day Navigator (CDN), to support persons with mild dementia in their daily lives, with memory, social contacts, daily activities and safety. Methods: A user participatory method was applied in the development process, which consisted of three iterative 1-year cycles with field tests in Amsterdam, Belfast and Luleå. In the successive cycles 16, 14 and 12 persons with dementia and their carers participated. Data on usability were collected by means of interviews, observations, questionnaires, logging and diaries. The CDN prototype consists of a touch screen, a mobile device, sensors and actuators. Results: The evaluation showed that persons with dementia and carers valued the CDN overall as user-friendly and useful. Conclusions regarding the effectiveness of the system in daily life were limited due to insufficient duration of the testing period caused by delays in development and some instability of the final prototype. Conclusion: With the suggested adaptations, the CDN is expected to be a useful tool for supporting community-dwelling persons with mild dementia and their carers.