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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.

This paper aims to examine housing need for older people and people with dementia, with reference to Scotland. This paper also examines policy responses and tensions arising from such need and looks critically at the evidence of care needs and what older people want in relation to later life conditions, including dementia.

Taking the Being Home: Housing and Dementia in Scotland report (2017) as a baseline descriptor, the authors have collated evidence from a range of sources to help them examine what has changed in terms of policy, practice and population ageing. Set against this backdrop, using desk-based analytical methods, the authors interrogate existing planning processes and systems in Scotland.

Scottish Spatial Planning has a policy blindness on the overwhelming evidence of the housing needs derived from an ageing population. Policy focus is geared towards the amount of housing supplied, rather than appropriate types of housing, leaving older people with little choice of suitable accommodation. A key area to improve is in establishing greater co-operation and policy synthesis between health, social, housing and planning functions. Broad policy ambition must be transferred into detailed reality for older people and people with dementia to benefit.

The integrated approach and in-depth analysis, linked to planning policy and housing need, is highly original and much needed.

This paper aims to describe a literature review and online survey to explore the provisions and support for people living with dementia in housing with care (HwC) settings within England.

An initial scoping literature review was conducted to synthesise the evidence relating to residents living with dementia in HwC settings and informed the development of an online survey distributed to HwC housing managers to explore the provisions, policies, procedures and support services relating to people living with dementia in HwC settings.

The findings provided a picture of HwC settings in England and the residents, particularly those living with dementia, in terms of policies and procedures, reasons for moving into HwC, reasons for denying entry, reasons for leaving, positive outcomes, staff knowledge and training, environmental design, challenges and successes.

The survey responses were from a self-selected sample of HwC providers and scheme/village managers; thus, it may be the case that the settings involved were doing more to support residents living with dementia. It should also be appreciated that the responses were based on the perceptions of the individual staff members completing the survey, not those of the HwC residents.

This study presented a picture of the current state of provisions and support for people with dementia within HwC settings in England, providing an essential platform from which to undertake targeted research to help shape future provision and enabling housing providers to assess their current schemes within the wider context.

Recovery Colleges were developed to support the recovery of people with mental health difficulties through courses co-produced by professionals and people with lived experience. This study aims to examine the use of Recovery Colleges to support people with dementia.

A survey was circulated to UK Recovery College and memory service staff, exploring provision, delivery and attendance of dementia courses. Open responses provided insight into participant views about recovery in post-diagnostic support and the practicalities of running dementia courses.

A total of 51 Recovery College staff and 210 memory service staff completed the survey. Twelve Recovery College dementia courses were identified across the UK. Three categories emerged from the qualitative data: post-diagnostic support, recovery in the context of dementia, challenges and areas of innovation.

This study highlights the benefits and practicalities of running Recovery College courses with people with dementia. Peer-to-peer learning was seen as valuable in post-diagnostic support but opinions were divided about the term recovery in dementia.

This paper aims to describe the outcomes of the use of the Quality Outcome Measure for individuals with dementia (QOMID) within a dementia pathway for people with Down’s syndrome (DS). The QOMID is a tool for clinicians to use with 17 outcome domains, each with descriptors for early, mid and late stage dementia, rated on a four point scale from rarely achieved for the person (1) to consistently and completely achieved for the person (4).

Data from first time use of the QOMID with 49 people with DS and dementia was analysed to determine if specific outcome domains are more achievable than others, if this differs by stage of dementia and what recommendations are suggested.

Results suggest that there were significant differences in achievability across the domains but that achievability did not vary between early and mid-stages of dementia. The themes with most recommendations were: quality of paperwork and documentation; improving communication with the person with DS and dementia; and working together with health and social care professionals.

Results suggest that outcomes which fall outside of the typical learning disabilities skillset and are dementia specific are being achieved less often. Primarily, recommendations focused on practical solutions such as using visual timetables to communicate with the person and adapting their environment. Further work on integrating the QOMID and stage-related team training for care staff is underway.

To the best of the authors’ knowledge, this is the first detailed analysis of the use of the QOMID in clinical practice with people with DS and dementia.

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

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.

Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related needs of people. This paper aims to examine the impact dementia education has on caregivers’ confidence to provide person-centred care for people with intellectual disability and identifies additional training needs.

A systematic scoping review was completed using preferred reporting items for systematic reviews and meta-analyses to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability.

A search of five electronic databases identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age-related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers’ confidence in meeting the physical and psychological needs of older adults with intellectual disability.

This review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person-centred dementia care.

There is increasing interest in the UK in developing environments that support people who are neurodiverse. This paper aims to report on a project to develop a cognitively supportive environmental assessment tool to improve the design of health centres, where the majority of National Health Service consultations take place, for all users, including people living with dementia and those who are neurodiverse.

A three-stage process was used: a literature review; the development of a matrix of key design features for people living with dementia, autism and other neurodiverse conditions; and the development of an environmental assessment tool and guide for users, which included easy-to-read versions to maximise service user involvement.

The overarching concepts of dementia-friendly design can be adapted to create designs for everyone, including those who are neurodiverse.

There is a paucity of research in environmental design for primary care from the patient’s perspective, and, more generally, further research on design for adults with learning disabilities and autism is needed.

The tools are free to download. With adaptation, they have potential applicability across health and care settings.

This project has confirmed that the principles of dementia-friendly design are applicable, with modifications, to a wider group of neurodiverse people. Critically, each person’s response to sensory stimuli is individual rather than determined by their condition.

This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.

The study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.

The authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.

To the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.