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.     

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.     

De Richtlijn Mondzorg voor zorgafhankelijke cliënten in verpleeghuizen, 2007: bittere noodzaak!

The oral health status of residents in Dutch nursing homes is rather poor, especially of those depending on caregivers for their oral health care. Moreover, when care dependency is rising, the provision of good oral health care becomes more difficult. With more elderly people still having (parts of) their natural teeth, the need for good oral health care is increasing even more. Therefore a specific guideline was developed. The ultimate aim of the guideline "Oral health care for dependent residents in long term care facilities" is to improve the oral health of nursing home residents. Oral health care needs to be incorporated in daily nursing home care routine and in the integral care plan of every resident. Attention is given to the importance of an adequate implementation of this guideline as well as to the necessity of research evaluating the effects of it's implementation.     

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.     

Geriatrisch spreekuur door een specialist ouderengeneeskunde in de huisartspraktijk

An innovative project is presented, in which general practitioners, an elderly care physician and specialized nurses work together. The primary aim of the project was early detecting of frail community dwelling elderly and to give them adequate treatment and support, to enable them to stay in their own home situation as long as possible. The detection of frail elderly was performed by mean of the Easycare instrument. Results collected from October 2007 - July 2009 are presented in this article. The findings show that particularly elderly with symptoms of dementia have been detected. The main actions were provision of integrated psychogeriatric care according to a tailormade integral care plan and starting or extending home care. Elderly with somatic problems were seen mostly in one time consultations. The satisfaction about the care provided in the project was high, both for participating patients and professionals. In the pilot a tendency was also found towards fewer referrals to hospital (specialists) and towards a reduction of the number of acute admissions to the nursing home.     

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.     

Een multidisciplinaire benadering voor een adequate aanpak van probleemgedrag bij dementie

Problem behaviours in one form or another are very common in nursing home residents with dementia. In order to manage these challenging behaviours pharmacological and psychosocial interventions are necessary. Psychosocial interventions have gained a more central role due to negative affects of pharmacological treatment. This case study describes the multidisciplinary approach of problem behaviour in an 85 year old nursing home patient with dementia. Those involved in caring for this patient initiated changes that led to a more adequate treatment and ultimately a decrease in the problematic behaviour.     

The final phase of dementia in a group of nursing home patients: prevalence and characteristics

There is scant literature about patients in the final phase of dementia. Uniform terminology and operational definition of the final phase of dementia is lacking. Furthermore, it is difficult to monitor these patients because existing assessment scales face bottom- or ceiling effects in this population. The aim of this study was to assess the prevalence and the characteristics of patients in the final phase of dementia in a group of 210 Dutch nursing home patients with dementia. Stage 7 of the Global Deterioration Scale of Reisberg et al. was used to operationally define the final phase of dementia. All patients were scored on a self-constructed assessment scale. Furthermore, treatment aspects and advance directives were registered.     

Palliative care dentistry

The importance of dental care is often overlooked due to the omission of the dentist as a member of the palliative care team. However, many terminal patients exhibit oral difficulties that affect their quality of life. Palliative care dentists must exhibit empathy and compassion, and must be excellent communicators Dentists can play an important role in alleviating both the physical and psychological pain of dying. This paper describes the role of dentistry in palliative care.     

Measuring discomfort in patients with dementia. Validity of a Dutch version of the Discomfort Scale--dementia of Alzheimer type (DS-DAT)

The Discomfort Scale--Dementia of Alzheimer Type (DS-DAT) is an instrument to assess discomfort in patients with severe dementia by observing patients' behaviour during five minutes. Trained nursing home physicians collected data of 662 pneumonia patients with dementia. The data were used to test the validity of a Dutch translation of the DS-DAT as a measure of discomfort. Internal consistency of the nine-item instrument was favourable (Cronbach's alpha ranged between 0.82 and 0.84 for different times during and following the pneumonia), and factor analyses indicated measurement of a single concept. Furthermore, as hypothesised, discomfort appeared moderately associated with acute illness. Nursing home physicians' assessment of DS-DAT scores therefore appeared a suitable method to assess discomfort in severely demented psychogeriatric nursing home patients for research purposes. For use in individual patients, results are probably too strongly affected by the chosen time fluctuations of assessment. For this purpose, the current rater assessment instructions should be adapted and tested.     

Een cultuurvergelijkend onderzoek naar behandelbesluiten van artsen met betrekking tot demente verpleeghuispatiënten met pneumonie

A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumoniaThis qualitative interview study in the Netherlands and North Carolina (US) found that physician treatment decisions are influenced by contextual differences in physician training and healthcare delivery in the US and the Netherlands. Dutch physicians treating nursing home residents with dementia and pneumonia assumed active, primary responsibility for treatment decisions while US physicians were more passive and deferential to family preferences, even in cases where they considered the families’ wishes inappropriate. Dutch physicians knew their patients well and made treatment decisions based on what they perceived was in the best interest of the patient while US physicians reported limited knowledge of their nursing home patients due to a lack of contact time. Efforts to improve care for patients with poor quality of life who lack decision-making capacity must consider the context of societal values, physician training, and the processes by which physicians negotiate patient and family preferences.     

A cross-cultural study of physician treatment decisions in relation to demented nursing home patients who develop pneumonia

This qualitative interview study in The Netherlands and North Carolina (US) found that physician treatment decisions are influenced by contextual differences in physician training and healthcare delivery in the US and The Netherlands. Dutch physicians treating nursing home residents with dementia and pneumonia assumed active, primary responsibility for treatment decisions while US physicians were more passive and deferential to family preferences, even in cases where they considered the families' wishes inappropriate. Dutch physicians knew their patients well and made treatment decisions based on what they perceived was in the best interest of the patient while US physicians reported limited knowledge of their nursing home patients due to a lack of contact time. Efforts to improve care for patients with poor quality of life who lack decision-making capacity must consider the context of societal values, physician training, and the processes by which physicians negotiate patient and family preferences.     

Nursing dependency in registered nursing homes and long term care geriatric wards in Edinburgh.

There has been growing interest and public investment in registered nursing homes, apparently based on the assumption that these homes are the private equivalent of hospital long term care. We have tested this hypothesis in a survey comparing 400 patients in 18 registered nursing homes with 217 patients in 11 geriatric long term care wards in Edinburgh. The nursing home patients formed a distinct and separate group: 362 (92%) were women, 392 (98%) were single or widowed, and 358 (90%) were self financing, whereas in the geriatric long term care group 148 (68%) were women and 35 (16%) were still married. Patients in nursing homes were also far less dependent than those in geriatric long term care wards (p less than 0.005). This study suggests that there may be large differences between the patients in these two types of institution, particularly with regard to nursing dependency. This finding has important implications in the future planning of long term places for the dependent elderly.     

Worden psychofarmaca in het verpleeghuis te vaak voorgeschreven?

Are psychotropic drugs too frequently prescribed in Dutch nursing homes? 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. Tijdschr Gerontol Geriatr 2007; 38: 270-273     

Dying with dementia: what do we know about it?

Death with dementia is increasingly common, yet research on end of life with dementia and end-of-life care for such patients has been sparse. This article reviews recent studies in this area, most of which were done in US nursing homes. Research focused on five domains: prognosis, decision making, treatment, patient's health and suffering, and family's circumstances and satisfaction with care. Prognostication focused on developing risk scores for mortality within 6 months or a year, and while decision making was usually studied qualitatively, the other three domains were largely covered by a series of small, retrospective studies. Future direction in research is discussed, including the ongoing CASCADE project in Boston and the Dutch End of Life with Dementia Study (DEOLD). Both of these prospective studies in nursing home residents assess decision making, as well as factors associated with family's satisfaction and patient suffering. These studies will provide insight into interventions that are most likely to improve end of life care of patients with dementia in the respective countries and elsewhere.     

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.     

Sterven met dementie: wat weten wij ervan?

Dying with dementia: what do we know about it? Death with dementia is increasingly common, yet research on end of life with dementia and end-of-life care for such patients has been sparse. This article reviews recent studies in this area, most of which were done in US nursing homes. Research focused on five domains: prognosis, decision making, treatment, patient’s health and suffering, and family’s circumstances and satisfaction with care. Prognostication focused on developing risk scores for mortality within 6 months or a year, and while decision making was usually studied qualitatively, the other three domains were largely covered by a series of small, retrospective studies. Future direction in research is discussed, including the ongoing CASCADE project in Boston and the Dutch End of Life with Dementia Study (DEOLD). Both of these prospective studies in nursing home residents assess decision making, as well as factors associated with family’s satisfaction and patient suffering. These studies will provide insight into interventions that are most likely to improve end of life care of patients with dementia in the respective countries and elsewhere. Tijdschr Gerontol Geriatr 2007; 38: 288-297     

End-of-life care issues in advanced dementia

Appropriate management of advanced dementia requires it to be recognised as a terminal condition that needs palliative care. Interventions during this stage should be carefully chosen to ensure the improvement or maintenance of the quality of life of the person with dementia. Advanced care planning is an important aspect of dementia care. Carers and relatives should be educated and encouraged to actively participate in discussions related to artificial nutrition, cardiopulmonary resuscitation (CPR) and other medical interventions.     

The law and the local fairness of care practice. Reflections on the ethnographic field investigation concerning the failure of the Bopz Act in psychogeriatric nursing home care

Ten years after its introduction the Special Admissions to Psychiatric Hospitals Act (Bopz) still awaits full implementation in the field of psychogeriatric nursing home care. Ethnographic research into moral problems related to care giving in dementia patients in Dutch nursing homes yielded several reasons for this discrepancy between law and care practice. Firstly, practical effectuation of this law rests predominantly on the shoulders of nurses and nurse assistants who are mainly inspired by moral motives such as carefulness and providing safety and who are ill informed about the law and its prerequisites. Secondly, there is the problem of the loss of a common shared world of meaning, which in relational terms is typical for the process of dementia. As a result of this, crucial concepts of the Bopz loose their applicability as the disease progresses. Finally, there is an immanent tension between the anthropology of care and care giving and the anthropological presuppositions of the law, health law included, which on a fundamental level contributes to the resistance of the care practice to the legal procedures of the Bopz. These factors must be accounted for in new legislation or revision of the current law. In the mean time we urge the necessity to develop a moral code concerning how to deal with resistive behaviour and opposition to care of demented nursing home patients.