Background: Although advance directives may seem useful instruments in decision-making regarding incompetent patients, their validity in cases of dementia has been a much debated subject and little is known about their effectiveness in practice. This paper assesses the contribution of advance directives to decision-making in the care of people with dementia, with a special focus on non-treatment directives and directives for euthanasia.

Methods: The relevant problems from the ethical debate on advance directives in cases of dementia are summarized and we discuss how these relate to what is known from empirical research on the validity and effectiveness of advance directives in the clinical practice of dementia care.

Results: The ethical debate focuses essentially on how to respond to the current wishes of a patient with dementia if these contradict the patient's wishes contained in an advance directive. The (very limited) empirical data show that the main factors in medical decision-making in such cases is not the patient's perspective but the medical judgment of the physician and the influence of relatives. Insight into the experiences and wishes of people with dementia regarding advance directives is totally lacking in empirical research.

Conclusions: Ethics and actual practice are two “different worlds” when it comes to approaching advance directives in cases of dementia. It is clear, however, that the use of advance directives in practice remains problematic, above all in cases of advance euthanasia directives, but to a lesser extent also when non-treatment directives are involved. Although generally considered valid, their effectiveness seems marginal. Further empirical research into the (potential) value of advance directives in dementia care is recommended.

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.

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.

Background: Among the general public there is a deep fear of developing dementia, which has led to an increasing number of people “at risk” seeking ways (such as advance directives) to avoid undergoing progressive mental decline. The views of people with dementia are vital in obtaining a real answer to the question of how the disease affects people's lives and whether it actually involves the suffering that so many fear.

Method: A review of the international literature is provided on what is known about living through dementia from the patient's perspective.

Results: A total of 50 papers met the inclusion criteria. The findings of these reviewed papers give insight into the impact of dementia and the ways that those who have it deal with its effects by using different coping strategies. The literature on the perspective of the patient gives no solid support to the widespread assumption that dementia is necessarily a state of dreadful suffering. Although the impact of dementia and the experiences of loss resulting in multiple “negative” emotions cannot be denied, our findings also indicate that people do not undergo the disease passively and use both emotion-oriented and problem-oriented coping strategies to deal with its challenges. The experiences of living through dementia as told by the sufferers appear to yield a more subtle picture than the assumptions made by the general public.

Conclusion: The overview provides a good starting point for improving the adjustment of care to the experience and wishes of people with dementia.

Objective: Insight into the individual care needs of the growing number of people with dementia is necessary to deliver more customized care. Our study aims to provide an overview of the literature on the subjective needs of people with dementia.

Method: Electronic databases were searched for publications on subjective needs between January 1985 and July 2005, and reference lists were cross-referenced. Extracts of needs were classified within problem areas of the (Dutch) National Dementia Program and quality of life domains, and the extracts were classified as a “need” (an implicitly communicated felt state of deprivation), “want” (expression of a need) or “demand” (suitable solution to fulfill a need).

Results: Subjective needs were found in 34 studies with various research aims, such as awareness and coping. Few studies aimed to measure needs of people with dementia. The most frequently reported needs of people with dementia were the need to be accepted and respected as they are, the need to find adequate strategies to cope with disabilities, and the need to come to terms with their situation. Explicit wants or demands were reported less frequently than needs.

Conclusion: The high number of reported needs and the limited number of wants and demands show that people with dementia do not frequently mention how they want their needs to be met. Most reported needs are not instrumental, but are related to well-being and coping. Further research to inventory these needs could help achieve more demand-directed and better attuned care in the future.

Background. Vascular depression is regarded as a subtype of depression, especially in, but not entirely restricted to, the elderly, characterized by a specific clinical presentation and an association with (cerebro)vascular risk and disease. It could have major implications for treatment if subjects at risk for such a depression could be easily identified by their clinical presentation in general practice.

Method. We studied the symptom profile of depression in subjects with and without vascular risk factors in two large Dutch community-based studies, the Rotterdam Study and the Amsterdam Study of the Elderly (AMSTEL).

Results. We could not confirm the specific symptom profile in depressed subjects with vascular risk factors in either of the two cohorts. Depressed subjects with vascular risk factors showed more loss of energy and more physical disability than those without vascular risk factors. However, presumed specific symptoms of vascular depression, namely psychomotor retardation and anhedonia, were not significantly associated with any of the vascular risk indicators. Loss of energy was significantly associated with myocardial infarction and peripheral arterial disease.

Conclusions. In these two large community-based studies we identified some differences between vascular and non-vascular depressed subjects but found no evidence for a specific symptom profile of vascular depression as previously defined.

Objective: The main objective of this article is to evaluate and describe instruments for assessing decision-making capacity in psychiatry and psychogeriatrics, and to evaluate them for use in daily practice.

Methods: The instruments were selected in Medline articles. We focus on the relationship between these instruments and the concept of competence, represented in the following elements: context in which an instrument is developed, disclosure of information, standards to assess decision-making capacity, the scale or threshold model, and validity and reliability.

Results: The developmental context influences how information is provided and standards defined. Although it is not clear how decision-making capacity relates to competency judgments, most instruments provide good reliability.

Conclusions: Comparison of the different instruments opens directions for future research. Although instruments can never replace a physician's judgment, they may provide a clear starting point for a discussion on competence. In daily practice assessments, attention should be given to information disclosure, the influence of our own normative values in evaluating standards of decision-making capacity, and the relation between decision-making capacity and competence.