Ethical dilemmas in early detection of dementia. An inventory of moral intuitions in practice

In this article we present an inventory of the moral intuitions of the health care workers who work in the field of early detection of dementia. The effects of pharmacological treatment and professional care and support may improve when dementia is detected in an early stage. Furthermore, the patient (and his family) can prepare themselves for the period to come. Health care workers recognize moral problems and tensions concerning early detection that are related to the question whether persons will benefit from knowledge in an earlier stage of dementia, because this knowledge can be a heavy burden. We asked general practitioners, home care workers, employees of the so-called 'Memory clinic' and specialists, what ethical intuitions they recognize in practice. They mentioned the following questions: when are health care professionals allowed to take initiative, is causing worries and concerns problematic, and should a diagnosis always to be told? We conclude after a first analysis that many moral questions derive from the fact that many health care professionals lack knowledge of the wishes and interests of the elderly. At the same time they try to justify their actions on the (presupposed) consent of the elderly person. We suggest that the general norm 'only act when the patient wants to be helped' in health care should also apply to detection of dementia, although it should not be taken too strictly. Another justification for early detection can be found in the benefits for the elderly people, when their wishes are no longer expressed.     

Valoración funcional en la demencia grave

Severe dementia is currently one of the main causes of dependence and is defined as cognitive impairment that interferes with the performance of basic activities of daily living. However, in clinical practice severe dementia is difficult to define.Assessment of the ability to perform activities of daily living is a key factor in patients with severe dementia, since functional impairment is a defining feature. Assessment allows an accurate prognosis to be made and a care plan to be established, as well as the effectiveness of the intervention to be evaluated, when necessary.Functional assessment in dementia is complex, since functional status is the expression of multiple interactions, especially in geriatric patients. Functional status is measured by functional scales. In severe dementia, these scales must evaluate basic activities of daily living in the different types of dementia with high sensitivity to changes and strong discriminatory capacity. They should also be culturally adapted and validated in the community and institutional settings. Consensus should be established on the use of these instruments to allow them to be standardized and their results to be compared.     

Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis

Background

Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care.

Methods and Findings

To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs'' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained.

Conclusions

Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors'' Summary     

Professional Dental Care for Patients with Dementia

Individuals with dementia present a significant challenge to the dental professional. The dental professional must meet the special needs of the patient with dementia with patience and a variety of non-traditional skills, including treatment planning with caregivers and nonverbal communication to reassure disoriented patients. The goals of dental care for the patient with dementia are to restore and maintain oral health and prevent progression of oral disease. Because of the degenerative nature of dementia, the first dental visit for a patient with dementia may represent the patient's best cognitive functioning level. For this reason, the dental treatment plan should aim to restore oral function quickly and to institute an intensive preventive program. Practical guidelines for preventive diagnostic, and restorative care are provided. To illustrate these points, two cases are presented.     

Oral hygiene care status of elderly with dementia and in residential aged care facilities

doi: 10.1111/j.1741‐2358.2011.00472.x
Oral hygiene care status of elderly with dementia and in residential aged care facilities Objective: To explore the effectiveness of oral hygiene care on plaque and gingival status of residents with dementia. Background: Oral hygiene and oral hygiene care has been reported to be poor among the institutionalised elderly with dementia. The severity of oral diseases has been shown to increase with the severity of physical and cognitive impairment related with dementia. Little research has been carried out on plaque and gingival status of elderly with dementia and the impact of disability related with dementia on oral health in residential aged care facilities (RACF). Materials and methods: A cross‐sectional study of 205 elderly residing in RACF in Perth. Results: Forty‐one percent of the residents in RACF had dementia. Sixty percent of the residents with dementia and 75% of the residents with an Activities of Daily Living Oral Health score of D were assisted with oral care. Mean plaques scores and extent of gingival inflammation were higher for residents in the DD and D subgroups and resident with dementia. Residents assisted with brushing had higher mean plaque score and more moderate gingival inflammation. Conclusion: Oral hygiene care status in residents with dementia was poor despite the fact that oral care assistance was being provided.     

Life- and person-centred help in Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a randomised controlled trial

ABSTRACT: BACKGROUND: The provision of appropriate medical and nursing care for people with dementia is a major challenge for the healthcare system in Germany. New models of healthcare provision need to be developed, tested and implemented on the population level. Trials in which collaborative care for dementia in the primary care setting were studied have demonstrated its effectiveness. These studies have been conducted in different healthcare systems, however, so it is unclear whether these results extend to the specific context of the German healthcare system. The objective of this population-based intervention trial in the primary care setting is to test the efficacy and efficiency of implementing a subsidiary support system on a population level for persons with dementia who live at home. Methods and study design The study was designed to assemble a general physician-based epidemiological cohort of people above the age of 70 who live at home (DelpHi cohort). These people are screened for eligibility to participate in a trial of dementia care management (DelpHi trial). The trial is a cluster-randomised, controlled intervention trial with two arms (intervention and control) designed to test the efficacy and efficiency of implementing a subsidiary support system for persons with dementia who live at home. This subsidiary support system is initiated and coordinated by a dementia care manager: a nurse with dementia-specific qualifications who delivers the intervention according to a systematic, detailed protocol. The primary outcome is quality of life and healthcare for patients with dementia and their caregivers. This is a multidimensional outcome with a focus on four dimensions: (1) quality of life, (2) caregiver burden, (3) behavioural and psychological symptoms of dementia and (4) pharmacotherapy with an antidementia drug and prevention or suspension of potentially inappropriate medication. Secondary outcomes include the assessment of dementia syndromes, activities of daily living, social support health status, utilisation of health care resources and medication. DISCUSSION: The results will provide evidence for specific needs in ambulatory care for persons with dementia and will show effective ways to meet those needs. Qualification requirements will be evaluated, and the results will help to modify existing guidelines and treatment paths. Trial registration NCT01401582.     

Economic Impact of Dementia by Disease Severity: Exploring the Relationship between Stage of Dementia and Cost of Care in Taiwan

Objective

Given the shortage of cost-of-illness studies in dementia outside of the Western population, the current study estimated the annual cost of dementia in Taiwan and assessed whether different categories of care costs vary by severity using multiple disease-severity measures.

Methods

This study included 231 dementia patient–caregiver dyads in a dementia clinic at a national university hospital in southern Taiwan. Three disease measures including cognitive, functional, and behavioral disturbances were obtained from patients based on medical history. A societal perspective was used to estimate the total costs of dementia according to three cost sub-categories. The association between dementia severity and cost of care was examined through bivariate and multivariate analyses.

Results

Total costs of care for moderate dementia patient were 1.4 times the costs for mild dementia and doubled from mild to severe dementia among our community-dwelling dementia sample. Multivariate analysis indicated that functional declines had a greater impact on all cost outcomes as compared to behavioral disturbance, which showed no impact on any costs. Informal care costs accounted for the greatest share in total cost of care for both mild (42%) and severe (43%) dementia patients.

Conclusions

Since the total costs of dementia increased with severity, providing care to delay disease progression, with a focus on maintaining patient physical function, may reduce the overall cost of dementia. The greater contribution of informal care to total costs as opposed to social care also suggests a need for more publicly-funded long-term care services to assist family caregivers of dementia patients in Taiwan.     

WHAT IS IT TO BE A DAUGHTER? IDENTITIES UNDER PRESSURE IN DEMENTIA CARE

This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.     

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.     

Have Quality and Outcomes Framework Depression Indicators changed referrals from primary care to a dedicated memory clinic?

The proportion of patients referred from primary care to dedicated dementia clinics who receive a final diagnosis of dementia is low. Many of these non-demented patients may have depressive disorders, since depression is the most common differential diagnosis of dementia. The UK general practitioner (GP) General Medical Services contract, introduced in April 2006, included a Quality and Outcomes Framework (QOF) with indicators related to depression. We investigated whether introduction of the QOF Depression Indicators changed the pattern of referrals from primary care to a dedicated dementia clinic. The results indicated that the null hypothesis could not be rejected.     

Diagnosis and treatment of dementia: 4. Approach to management of mild to moderate dementia

Background

The management of mild to moderate dementia presents complex and evolving challenges. Practising physicians are often uncertain about the appropriate approaches to issues such as the disclosure of the diagnosis, driving and caregiver support. In this article, we provide practical guidance on management based on recommendations from the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia.

Methods

We developed evidence-based guidelines using systematic literature searches, with specific criteria for the selection and quality assessment of articles, and a clear and transparent decision-making process. We selected articles published from January 1996 to December 2005 that dealt with the management of mild to moderate stages of Alzheimer disease and other forms of dementia. Recommendations based on the literature review were drafted and voted on. Consensus required 80% or more agreement by participants. Subsequent to the conference, we searched for additional articles published from January 2006 to April 2008 using the same major keywords and secondary search terms. We graded the strength of evidence using the criteria of the Canadian Task Force on Preventive Health Care.

Results

We identified 1615 articles, of which 954 were selected for further study. From a synthesis of the evidence in these studies, we made 48 recommendations for the management of mild to moderate dementia (28) and dementia with a cerebrovascular component (8) as well as recommendations for addressing ethical issues (e.g., disclosure of the diagnosis) (12). The updated literature review did not change these recommendations. In brief, patients and their families should be informed of the diagnosis. Although the specifics of managing comorbid conditions might require modification, standards of care and treatment targets would not change because of a mild dementia. The use of medications with anticholinergic effects should be minimized. There should be proactive planning for driving cessation, since this will be required at some point in the course of progressive dementia. The patient''s ability to drive should be determined primarily on the basis of his or her functional abilities. An important aspect of care is supporting the patient''s primary caregiver.

Interpretation

Much has been learned about the care of patients with mild to moderate dementia and the support of their primary caregivers. There is a pressing need for the development, and dissemination, of collaborative systems of care.

Articles to date in this series

• Chertkow H. Diagnosis and treatment of dementia: Introduction. Introducing a series based on the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia. CMAJ 2008;178:316-21.
• Patterson C, Feightner JW, Garcia A, et al. Diagnosis and treatment of dementia: 1. Risk assessment and primary prevention of Alzheimer disease. CMAJ 2008;178:548-56.
• Feldman HH, Jacova C, Robillard A, et al. Diagnosis and treatment of dementia: 2. Diagnosis. CMAJ 2008;178:825-36.
• Chertkow H, Massoud F, Nasreddine Z, et al. Diagnosis and treatment of dementia: 3. Mild cognitive impairment and cognitive impairment without dementia. CMAJ 2008;178: 1273-85.

     

Probleme des Diabetesmanagement bei älteren Menschen mit Diabetes mellitus

Diabetes is a common disease in the older population that bears a high risk of further health problems. The number of old people suffering from diabetes will increase in the future. The treatment of diabetes requires competences in self management which are reduced by various impairments (e.g. in grasping, vision impairments, memory) and by depression and dementia. Diabetes teaching programs for old people make it possible to treat diabetes autonomously. There should be a routine of screening for dementia and depression so that diabetes treatment can be adapted or treatment of depression initiated. This monitoring improves quality of life, diabetes self care, and reduces mortality of old people.     

Change in Care Dependency and Nursing Care Problems in Nursing Home Residents with and without Dementia: A 2-Year Panel Study

Over time, chronic conditions like dementia can lead to care dependency and nursing care problems, often necessitating nursing home admission. This panel study (2012–2014) aims to explore changes in care dependency and nursing care problems (incontinence, malnutrition, decubitus, falls and restraints) in residents with and without dementia over time. In total, nine Austrian nursing homes participated, including 258 residents (178 with, 80 without dementia) who completed all five measurements. Data were collected with the International Prevalence Measurement of Care Problems questionnaire, the Care Dependency Scale and the Mini-Mental State Examination-2. Repeated measures ANOVA and crosstabs were used to analyse changes. The results showed that care dependency in dementia residents increased significantly for all 15 items of the Care Dependency Scale, with the highest increase being residents’ day-/night pattern, contact with others, sense of rules/values and communication. In contrast, care dependency in residents without dementia increased for four of the 15 items, with the highest increase being for continence, followed by getting (un)dressed. With respect to the assessed nursing care problems, residents with dementia and those without only differed significantly in terms of an increase in urinary- (12.3% vs. 14.2%), fecal- (17.4% vs. 10%), and double incontinence (16.7% vs. 11.9%). The results indicated that residents with dementia experienced increased care dependency in different areas than residents without dementia. Furthermore, residents with dementia experienced a lower increase in urinary incontinence but a higher increase in fecal- and double incontinence. These results help professionals to identify areas for improvement in dementia care.     

Dementiediagnostiek bij oudere migranten op de geheugenpolikliniek: obstakels en oplossingen

In the next decade the number of non-western elderly immigrants will double in the Netherlands. Because of specific risk factors (hypertension, diabetes), the number of elderly immigrants with dementia will probably increase. Memory clinics are not well prepared for these patients, because health professionals lack knowledge about important obstacles in intercultural dementia diagnostics. They should consider language barriers, cultural differences, low level of education and illiteracy, as well as ignorance about dementia, shame and special care expectations of patients and their families. We give recommendations to improve communication, (neuropsychological) testing and counseling in clinical practice.     

Do consensus conferences influence their participants?

OBJECTIVE: To determine whether participation in a consensus conference on the assessment of dementia would influence conference participants with respect to their recommendations to primary care physicians for the assessment of dementia. DESIGN: Questionnaire before and after the conference. SETTING: Canadian Consensus Conference on the Assessment of Dementia, held in Montreal, Oct. 5 and 6, 1989. PARTICIPANTS: All 38 experts representing relevant health disciplines who participated in the consensus conference; 36 completed both questionnaires. OUTCOME MEASURES: Participants'' opinion before and after the conference as to how frequently each of 28 manoeuvres (12 blood tests, 4 neurologic imaging procedures, 4 types of consultation and 8 "other" tests) should be ordered by primary care physicians as part of an assessment of a patient with dementia suspected in clinical grounds. RESULTS: For 18 (64%) of the 28 manoeuvres (10 of the 12 blood tests, 3 of the 4 neurologic imaging procedures and 5 of the 8 "other" tests), there was a shift in opinion after the conference toward recommending that primary care physicians order them less often; for 10 of these 18 (5 blood tests and 5 "other" tests) the shift was statistically significant. For the remaining 10 manoeuvres (36%) the shift in opinion was toward a recommendation that primary care physicians order them more often; the shift was not statistically significant for any of these 10 manoeuvres. CONCLUSION: Expert members of a consensus conference are influenced by the process of having participated in such a conference and are capable and willing to chance their initial recommendations when confronted with relevant data.     

Onthand Ouderenbeleid. Kanttekeningen bij regeringsplannen 2007

In 1993 Ribbe en Hertogh published a paper in which they expressed their concern about the high prevalence of psychotropic drug use in Dutch nursing homes. Since then, this situation does not seem to have been changed significantly. Recent figures from psychotropic drug use in patients with dementia show prevalence rates of over 60%. The Dutch government decided to choose the prevalence of psychotropic drug use as an indicator of the quality of care and invested in a specific improvement project that aims to reduce psychotropic drug use among nursing home patients. There is a small body of evidence from international research that antipsychotics safely can be reduced without a rise in problem behaviours. In combination with the limited effectiveness and the risk of stroke and increased mortality, the question raises whether these agents should be prescribed at all at least for patients with dementia. A recent study from the UK however, found a significant decrease of antipsychotic drug use by heavily investing in all kinds of person-centered care skills of the nursing staff. These findings underscore the necessity of investing in the caregivers of nursing homes to be able to cope with the complex problems they are faced with.     

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.     

NOTHING BUT THE TRUTH? ON TRUTH AND DECEPTION IN DEMENTIA CARE

Lies and deception are often used in the care for demented elderly and often with the best intentions. However, there is a strong moral presumption against all forms of lying and deceiving. The goal of this article is to examine and evaluate concrete examples of deception and lies in dementia care, while addressing some fundamental issues in the process. It is argued that because dementia slowly diminishes the capacities one needs to distinguish between truths and falsehoods, the ability to be lied to also disappears. When the moral reasons to reject lying are explored, it becomes clear that most of them also hold where demented patients are concerned, though this also depends on the capacities of the patient. Lying, though prima facie wrong, can sometimes be justified with an appeal to well-being. The relationship between well-being and the truth is further explored. Two examples of deceiving demented patients for reasons of beneficence are discussed, from which it can be concluded that although in some cases beneficent lies or deception will not enhance patients' well-being, there are circumstances in which they do. In general, methods that enhance the well-being of the patient without deception or lies should be favored above options that use deceit, and methods of getting the truth across without hurting the patient should be favored above blunt honesty Finally it is important to note that not only the patient but also the nursing and medical staff can be affected by the use of lies and deception.     

SveDem,the Swedish Dementia Registry – A Tool for Improving the Quality of Diagnostics,Treatment and Care of Dementia Patients in Clinical Practice

BackgroundThe Swedish Dementia Registry (SveDem) was developed with the aim to improve the quality of diagnostic work-up, treatment and care of patients with dementia disorders in Sweden.MethodsSveDem is an internet based quality registry where several indicators can be followed over time. It includes information about the diagnostic work-up, medical treatment and community support (www.svedem.se). The patients are diagnosed and followed-up yearly in specialist units, primary care centres or in nursing homes.ResultsThe database was initiated in May 2007 and covers almost all of Sweden. There were 28 722 patients registered with a mean age of 79.3 years during 2007–2012. Each participating unit obtains continuous online statistics from its own registrations and they can be compared with regional and national data. A report from SveDem is published yearly to inform medical and care professionals as well as political and administrative decision-makers about the current quality of diagnostics, treatment and care of patients with dementia disorders in Sweden.ConclusionSveDem provides knowledge about current dementia care in Sweden and serves as a framework for ensuring the quality of diagnostics, treatment and care across the country. It also reflects changes in quality dementia care over time. Data from SveDem can be used to further develop the national guidelines for dementia and to generate new research hypotheses.     

Palliative care in dementia and the dismantling of the treatment function of nursing homes

Palliative 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.