Implementatie en (kosten-)effectiviteit van casemanagement voor mensen met dementie en hun mantelzorgers: resultaten van de COMPAS-studie

Background

Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form.

Aim of study

Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation.

Methods

A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs).

Results

Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups.The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group.

Conclusion

The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

     

Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.     

Kwaliteit van leven van verpleeghuisbewoners met dementie voor,tijdens en na het spelen met de tovertafel

The ‘Active Cues Magic Table’ is a new game concept within nursing home care. It consists of light animations projected on a dining table and responding to movements of the players. The aim of this exploratory, quasi-experimental study was to examine the quality of life of nursing home residents with moderately severe or severe dementia before, during and after playing with this magic table. Quality of life was assessed with the Qualidem and the DS-DAT. Of the 34 nursing home residents included, 62% were female and mean age was 86.5 years (standard deviation 6.2). The Qualidem showed a small to moderate improvement in ‘negative affect’, ‘restless tense behavior’ and ‘positive self-image’ up to the week after playing (p ≤ 0.04). The DS-DAT showed a moderate improvement up to one hour after playing compared to a quarter of an hour before playing (p < 0.001). In conclusion, the quality of life of nursing home residents with moderately severe or severe dementia seems to improve up to the week after playing with the magic table. However, future research is needed to confirm the results of this exploratory study and to examine whether the improvements can truly be ascribed to the magic table.     

Zorgzame vrienden en buren als mantelzorgers van oudere volwassenen: een vergelijking met kinderen

This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.     

Interventies bij het signaleren van pijn bij verpleeghuisbewoners met dementie: de pilot implementatie van een pijnbeoordelingsinstrument (PACSLAC-D)

Pain occurs regularly among nursing home residents with dementia. There are indications that appliance of structural pain assessment can contribute to the adequate diagnosis of pain. The aim of this study is to gain insight into applied interventions after diagnosing pain with an observational pain scale (PACSLAC-D) among nursing home resident with dementia. During a six week period pain was measured twice a week, among 22 residents of a psychogeriatric nursing home ward, using the PACSLAC-D. Interventions undertaken as a result of a pain score were inventoried on a data-sheet. After the third and sixth week implementation of pain assessment was evaluated. In total 264 pain assessments using the PACSLAC-D were conducted. Of all scheduled standardized measurements 90% was completed. Sixty observations resulted in a pain score. Completed datasheets (N=39) showed that a pain score often (N=17) did not result in any intervention. The majority of interventions that were undertaken consisted of a non pharmacological approach (N=19). Evaluation meetings indicated that the PACSLAC-D was considered useful, though the chosen procedure of standardized measurements twice a week was not yet ideal. This study demonstrates that although there was a high compliance rate, pain relieving interventions were not frequently applied.     

Kwaliteit van leven bij dementie

Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers (‘sense of aesthetics’, ‘financial situation’, ‘being useful’ and ‘spirituality’), or not selected in the measuring instruments (‘security and privacy’, ‘self-determination and freedom’, ‘being useful’ and ‘spirituality’). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N=374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains ‘financial situation’ and ‘being useful’. Professionals offering daytime activities focused more than 24-hour care staff on ‘attachment’, ‘enjoyment of activities’, ‘sense of aesthetics’, and ‘being useful’ This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533–558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer’s Disease and Other Dementias 2007; 22:176–183.     

Kleinschalig wonen voor ouderen met dementie: een begripsverheldering

Small-scale group living for elderly with dementia: a clarification This article discusses the results of a Concept Mapping, held to clarify the concept of small-scale group living for elderly with dementia. Seventeen experts from different backgrounds formulated 91 statements about small-scale group living. These were subsequently depicted on a concept map with two dimensions: care versus living and individual versus context. The statements were then divided into six clusters by hierarchical clusteranalysis. Five of these clusters centred around the arrangements of the individual lives of the residents and the collective lives of residents and staff, while only one held statements about the physical characteristics of small-scale group living. Therefore, it can be concluded from this Concept Map that small-scale group living is not so much determined by the physical characteristics but by the organisational features of the care context.     

Palliatieve zorg bij dementie en de ontmanteling van de behandelfunctie van het verpleeghuis

Palliative care in dementia and the dismantlement of nursing home medicinePalliative care is mostly restricted to the terminal phase of incurable illness. According to the WHO revised definition palliative care is specifically directed towards patients and families facing life-threatening illness. This definition is not adequate to orient and direct palliative care policies in non-cancer diseases such as dementia. Although dementia is incurable from the outset, its course is often protracted, resulting in a terminal stage only after several years. This disease trajectory necessitates an alternative palliative approach, implying a proactive attitude of nursing home physicians in facilitating early and timely discussions with patients and their proxies on advance care planning and treatment of complications and concomitant diseases. This, together with their specific training in the treatment of the long term sequelae of chronic diseases, defines the success of Dutch nursing home medicine in foregoing inappropriate hospital admissions and providing adequate medical care in the nursing home. However, recent reorganisations of nursing home care and its funding threaten to downgrade the quality of medical care for patients with dementia in Dutch nursing homes by focusing unilaterally on welfare ideology and ‘marketization’ of long term care, thus underestimating the importance of a palliative care policy in dementia.