Jacomine de Lange

A review of quality of life instruments used in dementia

Objective: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties. Method: Literature research. Results: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures. Conclusion: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required.

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

Many different definitions of the concept of quality of life (QOL) are found in the literature. This raises the question as to which domains are viewed as really important by people with dementia and which are possibly based on views of others, such as (in)formal carers, or theoretical models. An explorative study was carried out among people with dementia living in the community and in nursing homes. Their opinions were compared to those of professional carers and to the current theoretical models and instruments for QOL in dementia. Data were gathered by means of interviews, focus groups and literature study. Most QOL domains mentioned as important by the persons with dementia were also acknowledged by the carers and in the literature. A few, however, were not mentioned by the carers (i.e. ‘sense of aesthetics in living environment’,‘financial situation’ and ‘being of use/giving meaning to life’), and not selected in the measuring instruments (‘security and privacy’, and ‘self-determination and freedom’). This indicates differences in perspectives on quality of life between persons with dementia, their carers and theoretical models. Further research is recommended on this point.

The effects of group living homes on older people with dementia: a comparison with traditional nursing home care.

The aim of this study was to investigate the effects of group living homes on quality of life and functioning of people with dementia.

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

This article reviews the literature on the inclusion of the perspective of people with dementia when evaluating quality of care. The few identified relevant studies suggest that there is consensus that people with mild to moderate dementia are able to talk about their experiences with care with clarity and insight. A minimum level of orientation to place, attention and language skills in the person with dementia are important for a successful subjective evaluation. On the basis of the relevant literature, we additionally formulated practical guidelines useful when one aims to collect information with interviewing, self-administered questionnaires, or focus groups from people with dementia to assess quality of care. In people with mild to moderate dementia, assessment of quality of care can best be done by individual interviewing and focus groups. Further research is needed to ascertain what people with dementia find important in relation to quality of care.

Quality of life in dementia: do professional caregivers focus on the significant domains?

The domains of quality of life that are considered important by people with dementia and professional caregivers are not in agreement. This explorative study addresses the question, “To what degree do professional caregivers, in their daily working routine, focus on the quality-of-life domains that people with dementia consider essential?” Study participants were nursing assistants who work in 24-hour nursing home care and professionals who offer daytime activities. Three hundred and seventy-four caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire. The caregivers reported to focus at least to some degree on most domains considered important by people with dementia. However, relatively little attention was paid to “financial situation” and “being useful/giving meaning to life.” Professionals who offer daytime activities focused more than 24-hour care staff on “attachment,” “enjoyment of activities,” “sense of aesthetics,” and “being useful/giving meaning to life.”

Activity involvement and quality of life of people at different stages of dementia in long term care facilities

Objectives: Involvement in activities is assumed to positively influence the quality of life of people with dementia, yet activity provision in long-term care remains limited. This study aims to provide more insight into the value of activity involvement for domains of the quality of life of long-term dementia care residents, taking resident characteristics and cognitive status into account. Method: Data were derived from 144 long-term care facilities participating in the second measurement (2010/2011) of the living arrangements for dementia study. Amongst 1144 residents, the relationship between time involved in activities (activity pursuit patterns; RAI-MDS) and quality of life (Qualidem) was studied using multilevel linear regression analyses. Analyses were adjusted for residents’ age, gender, neuropsychiatric symptoms, ADL dependency and cognition. To check for effect modification of cognition, interactions terms of the variables activity involvement and cognitive status were added to the analyses. Results: Despite residents cognitive status, their activity involvement was significantly related to better scores on care relationship, positive affect, restless tense behaviour, social relations, and having something to do. A negative relationship existed between the activity involvement and positive self-image. The explained variance in the quality of life between residents caused by the activity involvement was small. Conclusion: Activity involvement seems to be a small yet important contributor to higher well-being in long-term care resident at all stages of dementia. Adjusting activities to individual preferences and capabilities might enlarge this relationship. Further research is needed to confirm this hypothesis, using measurement instruments less sensitive to recall bias and differentiating between the active and passive activity involvement.

Home-based exercise and support programme for people with dementia and their caregivers: study protocol of a randomised controlled trial

BackgroundDementia affects the mood of people with dementia but also of their caregivers. In the coming years, the number of people with dementia will increase worldwide and most of them will continue to live in the community as long as possible. Home-based psychosocial interventions reducing the depressive symptoms of both people with dementia and their caregivers in their own home are highly needed.Methods/DesignThis manuscript describes the design of a Randomised Controlled Trial (RCT) of the effects of a home-based exercise and support programme for people with dementia and their caregivers. The aim is to randomly assign 156 dyads (caregiver and dementia diagnosed person) to an intervention group or a comparison group. The experimental group receives a home programme in which exercise and support for the people with dementia and their caregivers are combined and integrated. The comparison group receives a minimal intervention. Primary outcomes are physical health (people with dementia) and mood (people with dementia and caregivers). In addition, to get more insight in the working components of the intervention and the impact of the intervention on the relationship of the dyads a qualitative sub-study is carried out.DiscussionThis study aims to contribute to an evidence-based treatment to reduce depressive symptoms among people with dementia and their caregivers independently living in the community.Trial RegistrationThe study has been registered at the Netherlands National Trial Register (NTR), which is connected to the International Clinical Trials Registry Platform of the WHO. Trial number: NTR1802.

The ideals of group living homes for people with dementia: do they practice what they preach?

In the Netherlands, as well as in other countries, nursing home care has been traditionally modeled on hospital care. However, in the last decades of the twentieth century, realization grew that, unlike hospitals, nursing homes needed to serve as literal homes to people. As a consequence, the concept of group living homes for older people with dementia has taken root. Group living home care was originally developed in Sweden in the late 1970s (Annerstedt, 1993). In the Netherlands, the first group living homes were created in the early and mid-1980s. Its popularity increased steadily after that, but the real growth occurred in the last years of the twentieth century. Nowadays, it is estimated that at least 25% (14,000) of the Dutch population with dementia lives in at least 450 group living homes (Aedes-Actiz Kenniscentrum Wonen-Zorg, 2011). Although matters such as a home-style environment, a small group of residents and a normal daily life are generally associated with the concept of group living home care, there are few actual definitions. In a previous study we therefore constructed a more elaborate description of group living home care (te Boekhorst et al., 2007). The “concept mapping” method was used, in which a group of experts from diverse backgrounds generated statements about the ideals of group living home care. Subsequently, the participants grouped and ranked these statements according to likeness and priority. This led to a pictorial representation – the Concept Map (Trochim, 1989). This map, which describes group living home care, depicts six clusters of statements (ranked according to priority):

Integrating mental health care into residential homes for the elderly: An analysis of six Dutch programs for older people with severe and persistent mental illness

Integrating mental health care into residential homes for the elderly is a potentially effective model to address the complex care needs of older chronically mentally ill people. Because no research was available on the implementation of such integrated care in practice, six programs already operating in the Netherlands were analyzed. At the administrative level, three types of cooperative arrangements existed: a psychiatric hospital renting a unit in a residential home for the elderly, a psychiatric hospital stationing mental health professionals in a residential home on a permanent basis, and a residential home employing its own psychiatrically trained staff. At the operational level, contrasting views emerged on the relation‐ship between physical and mental health care; these were delivered separately or in integrated form. In either case, the employees trained as elder care workers or as psychiatric nurses had difficulties understanding each other because they held different ideas about good‐quality care. These care visions can be characterized as the care‐giving approach (care workers) versus the problem‐oriented and the rehabilitation approaches (nurses). At the housing level, two models existed: mentally ill patients having apartments in a separate unit (concentrated housing) or located throughout the facility (dispersed housing). The most promising model appears to be the one in which a psychiatric hospital assigns mental health professionals to work in a residential home, where they remain administratively and operationally distinct from the standard residential services. Whether or not the psychiatric residents should be housed in separate units could not be decided based on this study.

The effects of a multicomponent dyadic intervention on the mood, behavior, and physical health of people with dementia: a randomized controlled trial

Purpose The effects of a multicomponent dyadic intervention on the mood, behavior, and physical health of people with dementia living in the community were evaluated in a randomized controlled trial. This multicomponent dyadic intervention is a translated and adapted version of an intervention that has been shown to be effective for people with dementia in the US. Patients and methods People with dementia living in the community and their family caregivers (N=111 caregiver-care recipient dyads) were randomly assigned to the intervention and comparison group. The intervention group received home-based physical exercise training, psycho-education, communication skills training, and pleasant activities training during 3 months directed at both the person with dementia and the caregiver. Mood, behavior, and physical health were measured at baseline, 3 months, and 6 months. The effects of the study were determined by using generalized estimating equations based on an intention-to-treat analysis. Results Analyses showed no beneficial effects over time on any of the outcome measures. Conclusion This study showed no effects. The negative results in this study compared to the study that has been carried out in the US might be explained by the translation, adaptation, and shortening of the intervention used in the US, and a different social context. In addition, the results might be explained by the lack of room for improvement and by experiencing the intervention as too much of a burden. Furthermore, improving physical health might only be effective if the physical exercises are of moderate-to-high-intensity and are tailored in accordance with participants’ preferences and needs. For future studies, because dyads often commented positively about the pleasure and support they received, it might also be valuable to measure quality of life outcomes such as relationship quality, pleasure, and self-esteem in dyadic focused interventions.