Rose-Marie Dröes

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.

The effects of emotion‐oriented approaches in the care for persons suffering from dementia: a review of the literature

This article presents an overview of the results of intervention studies in various emotion‐oriented approaches in the care for people suffering from dementia. Recommendations are made with regard to clinical practice and future research.

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.

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.

Multivariate models of subjective caregiver burden in dementia: A systematic review

BACKGROUND Burden in dementia caregivers is a complex and multidimensional construct. Several models of burden and other representations of burden like depression or mental health are described in literature. To clarify the state of science, we systematically reviewed complex models that include both patient and caregiver determinants of caregiver burden. OBJECTIVE A review of determinant models of caregiver burden. DESIGN Systematic review. DATA SOURCES Electronic databases PubMed, PsycInfo and EMbase were searched in December 2013. STUDY SELECTION AND ANALYSIS Research studies with quantitative outcome measures of caregiver burden or burden-related concepts, including both patient and caregiver functional characteristics as determinants. We categorized the determinant variables in the models and calculated the percentages of proven determinants within each category. RESULTS We found 32 studies with burden models and 24 depression and mental health models. Patient behavioral problems, caregiver coping and personality traits and competence are most consistent determinants of caregiver burden, depression and mental health. Behavioral problems are more significant than cognitive disorders or lack of self-care. Of all measured caregiver personality traits, neuroticism has the strongest impact on caregiver burden. Regarding caregiver competences, feeling competent or enjoying higher self-efficacy in general diminish caregiver burden and promote caregiver mental health.

The concept of quality of life in dementia in the different stages of the disease

In order to conceptually define quality of life (QOL) in dementia, the literature on QOL in the elderly population, in chronic disease and in dementia was studied. Dementia is a progressive, age-related, chronic condition and to avoid omissions within the dementia-specific concept of QOL, a broad orientation was the preferred approach in this literature study. Adaptation is a major outcome in studies investigating interventions aimed at improving QOL in chronic conditions, but to date, it has not been used in the definition of QOL. It is argued that adaptation is an important indication of QOL in people with chronic diseases and therefore also in dementia. Some crucial issues in assessing dementia-related QOL that are relevant to clarify the continuing debate on whether QOL, particularly in dementia, can be measured at all, are discussed. Then the following conceptual definition is offered: dementia-specific QOL is the multidimensional evaluation of the person-environment system of the individual, in terms of adaptation to the perceived consequences of the 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.

Would We Rather Lose Our Life Than Lose Our Self? Lessons From the Dutch Debate on Euthanasia for Patients With Dementia

This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimers disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of (late onset) Alzheimers disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patients perspective with regard to medical treatment and care-giving in dementia, including end-of-life care.

Effect of integrated family support versus day care only on behavior and mood of patients with dementia.

OBJECTIVE This study tests the hypothesis that integrated family support, in which patients and caregivers are both supported by one professional staff, is more effective in influencing behavior problems and mood of the dementia patient than nonintegrated support, such as psychogeriatric day care only. DESIGN A quasi-experimental pretest-posttest control group design with matched groups was applied. SETTING Psychogeriatric day-care centers of four community centers and three nursing homes. PARTICIPANTS Fifty-six dementia patients living at home and their caregivers. INTERVENTION The patients in the experimental group (n = 33) participated together with their caregivers in an integrated family support program, whereas the patients in the control group (n = 23) received psychogeriatric day care only. MEASUREMENTS Behavior problems and mood were observed using standardized behavior observation scales. RESULTS After 7 months the experimental support program, compared to the regular psychogeriatric day care, showed a large positive effect on the total number of behavior problems (effect size .75), and also specifically on the degree of inactivity (effect size .66) and nonsocial behavior (effect size .61). No effect on mood was found. CONCLUSIONS In influencing the total amount of behavior problems, as well as the degree of inactivity and nonsocial behavior, the integrated family support program proved to be more effective than psychogeriatric day care. Because behavior problems are an important determinant for admission of persons with dementia into a nursing home, integrated family support may contribute to the delay of institutionalization.

Evaluation of Qualidem: a dementia-specific quality of life instrument for persons with dementia in residential settings; scalability and reliability of subscales in four Dutch field surveys

To evaluate the scalability and reliability of Qualidem, a quality of life observation instrument rated by professional caregivers of persons with mild to very severe dementia living in residential settings.