Recommendations on end-of-life care for people with dementia

Objective  

To establish, in collaboration with national Alzheimer Societies in Europe, practical and consensual recommendations for the end-of-life care of people with dementia. The aim of these recommendations is to provide a basis for understanding and action with regard to end-of-life care not only for family caregivers but also for professionals, policy makers and anyone with an interest in palliative care.     

The nutritional care of people living with dementia at home: A scoping review

There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross‐sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi‐component tailored interventions and the influence of the care‐giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care‐giving dyad influences nutritional care.     

Communicating with people with dementia

It can be very difficult to communicate with people with dementia. Each case requires its own unique handling. Not every scenario is covered, as many times your own judgment is what will work, best according to the circumstances. These can change from dawn to evening and from day to day. Never assume things will be the way they were the last time you communicated. Be on your guard. Be adaptable. The article will help get you started to think of your own ways to communicate.     

Accomplishing care at home for people with dementia: using observational methodology

The authors consider the problems and possibilities presented by using unstructured observation in the home setting. The findings of the original study are described elsewhere (Briggs, Askham, Norman, & Redfern 1998; National Health Service [NHS] Executive 1998). In this article, the authors discuss process issues (e.g., gaining and maintaining access to the research setting, disengaging, what can and cannot be observed, and the validity of the data and analysis), drawing on a study of the nature of care as a form of social organization in the homes of people with dementia. They show that observation is not only possible but, when combined with conversational interviewing, essential for understanding the processes of caring and what it means to live with dementia.     

Patient‐centred care training needs of health care assistants who provide care for people with dementia

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.     

Occupational patterns of people with dementia in residential care: an ethnographic study

This paper describes an ethnographic study that sought to gain knowledge of the occupational patterns of persons with dementia in a care home and how the residents perceived the group activities in which they participated. The residents' ages ranged from 82 to 92 years. They were seven women and one man. Both participant observation and interviews were used to collect data. Data analysis resulted in an ethnographic story organised around two key themes: (1) the occupational patterns of the residents, and (2) the residents' perceptions of the activities offered. In this story residents appeared passive, playing the role of guests in the care home. Residents were dependent on staff to engage in daily occupations. Interviews revealed that residents perceived participation in activities as important to their mental and physical health and an advantage of living in the care home.     

Innovative methods for involving people with dementia and carers in the policymaking process

BackgroundThere are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care.MethodA Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer''s Assembly was co‐produced with caregivers of people with dementia using a citizen''s assembly model.ResultsTen people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making.DiscussionInvolving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions.Patient or public contributionPeople with dementia and carers were involved in study design, data analysis and presentation.     

Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes

Quality of Life Research - There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite...     

Preservation of self in people with dementia living in residential care: a socio-biographical approach

The maintenance of self in dementia is associated with socio-biographical factors. The theoretical literature suggests that interpersonal relationships, the social context, and the generation of stories are important in maintenance of self. Empirical research on self in dementia supports this but has been predominantly conducted with participants living in the community. Living in residential care brings additional threats to self. This paper presents a study examining the relevance of a socio-biographical theory of self to people with dementia living in residential care. Between 3 and 8 tape-recorded and transcribed unstructured interviews were conducted with 14 people with dementia who were living in 4 residential homes throughout England and Wales, over a 6-24-month period. They were analysed using an interpretive biographical methodology. The results provide evidence to support the relevance of a socio-biographical theory of self to this group. Relationships with family, other residents and care home staff were important for maintenance of self. Social roles related to work, being part of a family, caring for others and being cared for, were particularly significant for self in this group. The creation of a life story, stories of selected life events, and the telling of stories with possible metaphorical interpretations were also important for the maintenance of self. The results also suggest that psychological and embodied factors may be relevant to the self in dementia. The study suggests that staff working in residential homes should consider these elements if they are to provide care that supports maintenance of self for people with dementia. Implications for future research are discussed.     

The craft of care: family care of relatives with advanced dementia

Family caregiving is attracting more attention from policy makers and service providers, but managing a chronic condition in the home is a very complex activity that usually remains invisible to health care professionals. The study's purpose was to identify strategies family caregivers used in the home to care for their relatives who have dementia. The author collected data from interviews with 18 caregivers and 2 health care professionals, and from participant observation in caregivers' support groups and homes. She used constant comparison analysis and describes the Craft of Care, a category that emerged during qualitative analysis. Caregivers craft care by creating ruses in care, a language to communicate, and spaces and devices for caregiving. They sustain the humanity of the patient in the midst of a condition that tends to destroy it.     

Assessment and management of patients with cognitive impairment and dementia in primary care

Objectives

To evaluate care provided by primary care physicians in community practice to older patients presenting with cognitive impairment and dementia.

Design

Secondary analysis of an intervention study.

Setting

Primary care clinics.

Participants

101 patients 75 years and older enrolled in the ACOVE-2 study who presented with a new cognitive problem, new dementia, or prevalent dementia.

Measurements

Patients assessment and management were evaluated from medical record review and caregiver interviews.

Results

Among 34 patients presenting with a new cognitive problem, half received a cognitive assessment comprising of a test of memory and one other cognitive task, 41% were screened for depression and 29% were referred to a consultant. Of the 27 patients with newly diagnosed dementia, 15% received the components of a basic neurological examination, one-fifth received basic laboratory testing and for one third the medical record reflected an attempt to classify the type of dementia. Counseling was under-reported in the medical record compared to the caregiver interview for the 101 patients with dementia, but even the interview revealed that about half or fewer patients received counseling about safety and accident prevention, caregiver support or managing conflicts. Less than 10% were referred to a social worker.

Conclusion

This small but detailed evaluation suggests patients presenting with cognitive problems to primary care physicians do not consistently receive basic diagnosis and management.     

Reframing risk management in dementia care through collaborative learning

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professional's intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.     

Dimensions of choice in the assessment and care management process: the views of older people, carers and care managers

The aim of promoting the maximum possible choice for service users and carers is - together with the goal of greater independence - central to recent community care policies. This paper sets out a typology of those key choices which users and carers are expected to be able to make within each stage of the assessment and care management process: choices about what services, when to receive them (i.e. at what times and for what duration) and from whom (i.e. which provider organization and which individual care worker). Drawing on interviews with 28 older service users, 20 informal carers and 22 care managers across four local authority areas in England, the paper goes on to describe the extent to which such choices - both at the strategic/macro and operation/micro level - have increased or decreased in practice. The evidence confirms that of other recent studies that the gap between the 'ideal' of user and carer involvement and the 'reality' of everyday practice is still considerable.     

The Mental Capacity Act 2005 Deprivation of Liberty Safeguards and people with dementia: the implications for social care regulation

The Mental Capacity Act 2005 introduced legal safeguards (which came into force in April 2009) aimed at protecting the liberty of people lacking capacity admitted to institutions in England and Wales. This paper discusses the adequacy of the Deprivation of Liberty Safeguards for protecting the liberty of residents in social care settings and the role of regulation in monitoring their implementation. In particular, the potential impact of planned unitary regulation on the regulator's ability to protect residents' liberty is critiqued, centring on people with dementia living in care homes. It is suggested that the capacity of the safeguards to adequately protect the liberty of residents with dementia may be limited by under-recognition of the extent to which deprivation of liberty can actually occur in care homes, insufficient resourcing and a lack of critical independence in their proposed implementation. In addition, the planned contraction of regulation – especially a reduction in inspections – will constrain the regulator's ability to ensure that residents' right to liberty is protected. The author concludes that the new model of regulation adopted by the UK government has prioritised economic efficiency over safeguarding the right to liberty of vulnerable residents in institutions.     

The opportunity costs of caring for people with dementia in Southern Spain

Objective

The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver. They are greater if the caregiver is male, but if the patient and caregiver cohabit they are reduced.