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Government guidelines promote service user consultation without providing extensive advice on people in later dementia. “Seen as too difficult to involve, they are effectively excluded from […] influenc(ing) service provision”, especially institutional care residents (Clare and Cox, 2003, p. 936). This hard-to-reach group presents methodological challenges. The purpose of this paper is to explore innovative approaches, offering even those with fragmented or lost speech the opportunity to contribute to decisions about their care.

This specialist dementia home consultation included staff and every resident, irrespective of the level of their communication impairment. Consultation on potential colour schemes took the form of a ballot. Staff helped develop an unpatronising, person-centred approach. Visual aids supported communication, de-emphasising the spoken word and promoting inclusion.

The majority of residents appeared to express an opinion on the potential decor. Others chose a colour while not necessarily grasping the context. The approach engaged all except four.

Even people with moderate/advanced dementia may be enabled to participate in consultation. Further research needs to refine methodology to include everyone and clarify the interpretation of results.

Service providers may widen their expectations of inclusivity in consultation exercises.

This consultation is important to researchers and practitioners because it explores ways of communicating, which avoid privileging the spoken word, revealing seldom-recognised abilities in people with moderate/advanced dementia.

The Model for Dementia Palliative Care Project will develop a service-delivery model for community-based dementia palliative care. Many countries provide dementia palliative care services, albeit with considerable variability within these. However, little is known about what service providers consider to be the most important components of a dementia palliative care model. This study aimed to address this knowledge gap.

An exploratory design using a survey method was used as an initial phase of the wider project. A web-based survey was developed, piloted (n = 5), revised, and distributed within five healthcare jurisdictions: the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was health and social care professionals, policymakers, and academics interested in dementia and palliative care. Content analysis of open-ended questions identified common themes; descriptive statistics were applied to the closed-ended questions.

Overall, N = 112 complete surveys were received. Key care principles incorporated the philosophies of palliative care and dementia care; many described “holistic” and “person-centred care” as the core. Important individual service components were the support for carers, advanced care planning, information, education and training, activities for “meaningful living”, comprehensive disease management, coordinated case management, and linking with community health services and social activities. Barriers included poor availability and organisation of healthcare services, stigma, misconceptions around dementia prognosis, insufficiently advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships.

This study, as part of the larger project, will directly inform the development of a novel service delivery Model of Dementia Palliative Care for Ireland. The results can also inform service planning and design in other countries.

Advanced care planning (ACP) involves the discussion of preferences relevant to a possible future time when one’s ability to make decisions may be compromised. ACP is considered as having potential to enhance choice and control and thereby to improve the experience of care for people with dementia and their carers. Care coordinators have been highlighted as possibly playing a central role in facilitating these discussions among people with long-term care needs. However, there is limited evidence of how ACP is facilitated by community mental health professionals who may be supporting people with dementia and carers. The paper aims to discuss this issue.

This exploratory study took the form of qualitative semi-structured interviews to explore the views and experiences of community mental health professionals when discussing ACP with people with dementia and/or their carers. A convenience sample of 14 participants working in community mental health services in one NHS Mental Health Trust in London, England, was recruited and interview data were analysed using a framework approach.

Five themes emerged from the interviews – knowledge and experience, use of ACP, inhibitors of discussion, service influences and the future. The depth of ACP facilitation appeared dependent on the knowledge, confidence and skills of the individual professional. Limited resources leading to service rationing were cited as a major barrier to ACP engagement. Helping people with dementia and their carers with ACP was not viewed as a priority in the face of competing and increasing demands. A further organisational barrier was whether ACP was viewed by service managers as “core business”. Findings indicate that practice was generally to refer people with dementia to other agencies for ACP discussions. However, pockets of ACP practice were reported, such as explaining proxy decision making options for finances.

This exploratory study took place in the community mental health services in one NHS Mental Health Trust that may not be representative of other such teams. Case records were not scrutinised or clinical conversations with people with dementia or carers.

Barriers to initiating ACP discussions were cited, such as limited resources, lack of time and knowledge; unclear role remit, uncertain service direction and poor documentation sharing processes. However, participants held a common belief that ACP for people with dementia is potentially important and were interested in training, a greater team focus on ACP and pathway development. This indicates the potential for staff development and continuing professional development.

Few studies have asked a wide range of members of community mental health services about their knowledge, skills and confidence in ACP and this study suggests the value of taking a team-wide approach rather than uni-professional initiatives.

The purpose of this paper is to report on a scoping review of the advantages and challenges of extra care housing (ECH) provision in the UK for people living with dementia. Access to suitable housing is a fundamental right for people living with dementia and can enable people to live as well as possible (Twyford and Porteus, 2021). Understanding the advantages and disadvantages of different models of housing with care has been identified as a research priority by people living with dementia (Barrett et al., 2016) but “there is no current consensus on the best model of specialist housing for people with dementia” (Twyford and Porteus, 2021, p. 29).

This scoping review identifies the advantages and disadvantages of living in ECH for people with dementia. It is the preliminary stage of a study that seeks to develop knowledge about different models of ECH for people living with dementia (Atkinson et al., 2021).

Advantages include the promotion of independence, flexible staffing, safety and security, social inclusion, physical design and integrated service provision. Disadvantages include barriers to entry, tensions between independence and support, managing advanced dementia, resourcing flexible care, managing social exclusion, loneliness and stigma and a disabling environment.

The scoping review reinforces the need for further research into different models of ECH provision in the UK for people living with dementia. The review provides insight that is of benefit to all stakeholders involved in ECH and contributes to the development of evidence-based provision called for in the recent All Party Parliamentary Group inquiry (Twyford and Porteus, 2021).

This scoping review summarises the current position for people living with dementia in ECH.

The second in a new series about mental health in old age, this article reviews policies and research evidence on services for people with dementia at the end of their lives, and looks at future commissioning priorities

This chapter aims to provide an overview of the ethical framework and decision-making in clinical dementia research, and to analyze and discuss the ethical challenges and issues that can arise when conducting clinical dementia research.

Informed consent is the most scrutinized and controversial aspect of clinical research ethics. In clinical dementia research, assessing decision-making capacity may be challenging as the nature and progress of each disease influences decision-making capacity in diverse ways. Persons with dementia represent a vulnerable population deserving special attention when developing, implementing, and evaluating the informed consent process. In this chapter, particular attention will be given to vulnerability categories and how these influence decision-making capacity. Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in clinical dementia research.

In addition, this chapter analyses important ethical challenges and issues in clinical dementia research. If handled thoughtfully, they would not pose insuperable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and cause harm to research participants. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the participants with dementia and protection of their vulnerabilities and rights.

A core set of ethical questions and recommendations are drawn to aid researchers, institutional review boards and potential research participants in the process of participating in clinical dementia research.

The purpose of this paper is to present the views of people living with dementia in extra care housing (ECH). This is a model of housing with care and support aiming to support older people, including those with dementia, to live independently. Previous research identifies benefits but is predominantly derived from third-party accounts, with the voices of those living with dementia in ECH significantly absent.

This study adopted a qualitative approach conducting 100 interviews across 8 ECH schemes in England. Over half of the interviews were conducted with people living with dementia and their families with the remainder involving staff and commissioners.

Findings suggest there are a range of benefits including owning your own home, having a safe, age friendly location with flexible support, social interaction and continuing to live as a couple. Challenges included availability of staff, flexible resourcing, loneliness and the advancing symptoms of dementia.

Despite efforts to create an inclusive, diverse sample, the participants were all White British. Participants involved were identified by gatekeepers, which may present some bias in the selection.

Whilst ECH offers benefits to people living with dementia, addressing the challenges is essential for effective dementia care. Improving staff training, promoting person-centred care and fostering an inclusive community are critical for enhancing residents’ well-being and quality of life.

This paper explored the lived experiences of residents and family members, providing new insight into the advantages and disadvantages of ECH for people living with dementia.

The purpose of this paper is to populate a theoretical cost model with real-world data, calculating staffing, resource and consumable costs of delivering Namaste Care Intervention UK (NCI-UK) sessions versus “usual care” for care home residents with advanced dementia.

Data from five care homes delivering NCI-UK sessions populated the cost model to generate session- and resident-level costs. Comparator usual care costs were calculated based on expert opinion and observational data. Outcome data for residents assessed the impact of NCI-UK sessions and aligned with the resident-level costs of NCI-UK.

NCI-UK had a positive impact on residents’ physical, social and emotional well-being. An average NCI-UK group session cost £220.53, 22% more than usual care, and ran for 1.5–2 h per day for 4–9 residents. No additional staff were employed to deliver NCI-UK, but staff-resident ratios were higher during Namaste Care. Usual care costs were calculated for the same time period when no group activity was organised. The average cost per resident, per NCI-UK session was £38.01, £7.24 more than usual care. In reality, costs were offset by consumables and resources being available from stock within a home.

Activity costs are rarely calculated as the focus tends to be on impact and outcomes. This paper shows that, although not cost neutral as previously thought, NCI-UK is a low-cost way of improving the lives of people living with advanced dementia in care homes.

The purpose of this paper is to evaluate the impact of an bilaterally asymmetric gymnastics-based exercise programme on older people participating in a care home and day centre setting.

The research design comprised a small-scale pilot in two care homes and one day care centre in Cambridgeshire, England. The research was a qualitative evaluation that included observing sessions delivered; interviews with older people participating, their spouses, family members and friends; interviews with staff; and a review of the diary of each session written by the person delivering the exercise programme.

Older people participating in the programme showed a demonstrable improvement with aspects of their physical, emotional and cognitive ability. Older people with mild to advanced forms of dementia appeared to benefit most. The sessions were enjoyable and a real bond developed between the older people.

Future research will benefit from understanding whether the observed improvements are reflected in objective measures. The inclusion of a comparison group will be important to further add to the belief that the observed changes are caused by the programme. The inclusion of a large sample size covering different geographic areas will be needed to test more widely the viability of this programme.

This research is the first to investigate the impact of an asymmetric gymnastics-based exercise programme on older people, with varying levels of dementia, in a care home and day centre setting.

The focus of interest in dementia in people with learning disabilities has been largely on epidemiology, prevalence, assessment and diagnosis. There has been less focus on care issues and interventions, with a paucity of research papers but a growing number of books and resource packs addressing these issues. Psychological and non‐pharmacological approaches are useful in services for people with learning disabilities and dementia, but must be delivered in line with a clear conceptual framework of dementia that aids staff in understanding what is happening to the person with dementia and the effect of their care and responses. This paper describes the most commonly used approaches, including developing an understanding of dementia, anxiety and stress reduction, life story work, reminiscence, reality orientation and validation techniques, helping peers to understand dementia, other therapeutic approaches, and understanding behaviour and dementia care mapping and their impact on the well‐being of people with learning disabilities and dementia and the people who support them.