Stigma and discrimination against older people with mental illness is a seriously neglected problem.(1) To investigate whether stigmatisation of older adults with mental disorder is associated with the type of residential institution they live in or the type of disorder they suffer and (2) to assess the role of stigma experiences in their quality of life.A cross-sectional study was carried out of 131 older adults with severe mental illness, recruited in 18 elder care homes operating supported living programmes and in eight psychiatric hospitals throughout the Netherlands. Stigmatisation was assessed with an 11-item questionnaire on stigma experiences associated with mental illness. Quality of life was assessed with the Manchester Short Assessment of Quality of Life (MANSA). To better ascertain the role of stigma, we also assessed in comparison the relationship of social participation to quality of life.Some 57% of the respondents had experienced stigmatisation. No association emerged between residential type or disorder type and the extent of stigma experiences. Stigmatisation did show a negative association with quality of life, a connection stronger than that between social participation and quality of life.A feeling of belonging, as contrasted with being excluded, is at least as important for the quality of life of older people with severe mental illness as their actual participation in the community.
Care for patients with Huntington's disease (HD) in long-term care facilities (LTCFs) is complex and practice-based, consisting of interventions developed through years of experience. Little is known about the functional status, quality of life of these patients and end-of-life care, particularly advance care planning and patients' perceptions of end-of-life.
Aims
Gain insight in motor, psychiatric, and cognitive symptoms, functional ability and quality of life of HD patients living in specialized LTCFs. Gain insight in perceptions of HD patients concerning their future and end-of-life, and whether these perceptions change over time. Gain insight in views of elderly care physicians on advance care planning and palliative care for HD patients.
Methods
This study consists of two parts: 1) a cross-sectional, descriptive study 2) a qualitative study.
Results/outcome
Data on the functional status and quality of life are collected in the period September 2017 – May 2019. We aim to include 250 HD patients living in 9 LTCFs in the Netherlands. The data will be obtained using observation scales and questionnaires. Data on end-of-life care are obtained by conducting multiple in-depth interviews every 6 months for the period of 2 to 2,5 years with 10–15 HD patients, and one in-depth interviews with elderly care physicians. Results are expected in 2021.
Conclusions
This study will provide valuable information on the functional status, quality of life and end-of-life care of HD patients living in LTCFs. Results may provide an evidence base to develop specific guidelines for care of institutionalized HD patients.
Abstract Background The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail. Methods Use was made of the concept mapping method as developed by Trochim; a computer‐assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made. Results Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person‐centred perspective with regard to people with dementia. Conclusions When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self‐evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST.
The rising life expectancy in the developed world leads to an increase in the number of older patients and the complexity of their complaints in general practice. Although interventions and support for general practitioners are available, implementation lags. Knowledge on what determines a complex older patient, the problems of which general practitioners encounter and the situations they actually need support for, is necessary for better implementation. To provide support to general practitioners in their struggle with complex older patients, the aim of this research was to disentangle the concept of the complex older patient in general practice. A qualitative approach was used consisting of 15 semi-structured interviews with general practitioners. The general practitioner was asked to prepare a case of a complex older patient out of their own practice that could be discussed during the interview. Transcripts of the interview were analysed using inductive thematic analysis. Analysis of the interviews resulted in twelve themes that could be categorised into five factors that contribute to the complexity of cases of older patients. The five factors are: not being in charge, different views on necessary care, encountering the boundaries of medicine, limits to providing social care, ill-equipped. The factors that were found imply that a better organisational structure for elderly care and consulting elderly care physicians could support general practitioners in providing care for older complex patients. Furthermore, understanding the current concept of patient autonomy seems unjustified in cases of complex older patients.
Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). However, little is known about ACP in HD.
Aim
To describe the experiences of elderly care physicians (ECPs) with ACP in HD patients.
Methods
A qualitative interview study with nine elderly care physicians working in a HD-specialized nursing home in the Netherlands.
Results
Two phases could be identified in the process of ACP. In the first phase, when the fearful future is still the future, the ECP asks about the patient's wishes for the future in an accommodating way. In the second phase, when the feared future is coming closer, future medical treatment and care becomes less hypothetical, and agreement has to be reached from ACP-conversations and previously formulated wishes. In this phase the ECP takes a more guiding role, and consequently encounters more difficulties, such as trying to reach agreement and maintaining a positive patient/family-physician relationship while dealing with resistance from patient or family. For most participants, talking about wishes concerning euthanasia appeared to be a standard part of ACP.
Conclusions
ACP in HD can be classified into two phases, which differ in ECP's approach and complexity experienced by the ECP.
The article reports on a study involving participants in six projects set up jointly by mental health care facilities and homes for the elderly. The projects were designed to offer protection and guidance in residential homes to older people whose psychiatric problems have rendered them permanently dependent on professional care. The primary focus of the study was on their problems and care needs. Structured interviews were conducted with 136 residents and with their supporting and treating staff. The older people presented an atypical pattern of symptoms. The supporting staff and the treating staff both cited the unsociable, apathetic behaviour of the residents as the most serious problem, followed by emotional problems. Only 37% of the residents were free of cognitive problems, and only 18% had no physical impairments. Although the projects were specifically designed for older people suffering long-term mental instability, more than a quarter of the residents turned out to have had little or no contact with mental health care services. Many had even been admitted to the projects with no prior psychiatric assessment. The study recommends that the projects mobilise more mental health expertise in carrying out needs assessment. To help alleviate the residents' apathy, in-service training programmers for the care staff should focus not on psychopathology alone, but also on ways to create a more stimulating residential and social atmosphere.
