Finding a way: long-term care homes to support dementia

An ageing demographic has increased the number of people with dementia. Although dementia is commonly associated with memory loss, other early symptoms include difficulty with wayfinding. Dementia alters visuo-spatial perception and the processes used to interpret the physical environment. The role of the design of the physical environment for people with dementia has gained increased recognition. Despite this, design for dementia is often overlooked, focusing on issues relating to physical impairment. This paper presents the results of a PhD study and aims to examine the role of the design of the physical environment in supporting wayfinding for people with dementia living in long-term care settings in Northern Ireland. Mixed methods combined the observation of wayfinding walks and conversational style interviews to elicit perspectives and experiences of residents with dementia. The findings aim to promote well-being for those with dementia living in long-term care settings

The implementation of Dementia Care MappingTM in a randomised controlled trial in long-term care: results of a process evaluation

This study explored intervention implementation within a pragmatic, cluster randomised controlled trial of Dementia Care MappingTM (DCM) in UK care homes. DCM is a practice development tool comprised of a five component cycle (staff briefing, mapping observations, data analysis and reporting, staff feedback, action planning) that supports delivery of person-centred care. Two staff from the 31 intervention care homes were trained in DCM and asked to deliver three cycles over a 15-month period, supported by a DCM expert during cycle 1. Implementation data were collected after each mapping cycle. There was considerable variability in DCM implementation fidelity, dose and reach. Not all homes trained two mappers on schedule and some found it difficult to retain mappers. Only 26% of homes completed more than one cycle. Future DCM trials in care home settings should consider additional methods to support intervention completion including intervention delivery being conducted with ongoing external support

Developing Dementia-Friendly Tourism Destinations: An Exploratory Analysis

Dementia is emerging as a global issue. Increases in life expectancy create an older population structure with accompanying health needs but also high lifestyle expectations. For example existing generations have come to expect to be able to participate in leisure and tourism activities in later life, which can be constrained by the onset of dementia. Leading healthy lifestyles and engaging in tourism activities are viewed as fundamental to remaining active and contributing to slowing the progress of dementia. This study is the first to examine the challenges and implications of the growing scale of dementia and the business opportunities this may create for destinations wishing to achieve dementia-friendly status. The paper reports results from an initial scoping study with tourism businesses in a coastal resort in the United Kingdom with such ambitions to assess the nature of the issues that arose from a series of face-to-face interviews

Effects of Dementia Care Mapping on well-being and quality of life of older people with intellectual disability:A quasi-experimental study

BACKGROUND: The ageing of people with intellectual disability, accompanied with consequences like dementia, challenges intellectual disability-care staff and creates a need for supporting methods, with Dementia Care Mapping (DCM) as a promising possibility. This study examined the effect of DCM on the quality of life of older people with intellectual disability.METHODS: We performed a quasi-experimental study in 23 group homes for older people with intellectual disability in the Netherlands, comparing DCM (n = 113) with care-as-usual (CAU; n = 111). Using three measures, we assessed the staff-reported quality of life of older people with intellectual disability.RESULTS: DCM achieved no significantly better or worse quality of life than CAU. Effect sizes varied from 0.01 to -0.22. Adjustments for covariates and restriction of analyses to people with dementia yielded similar results.CONCLUSION: The finding that DCM does not increase quality of life of older people with intellectual disability contradicts previous findings and deserves further study.</p

Materialising architecture for social care: brick walls and compromises in design for later life.

This article reports on an ethnography of architectural projects for later life social care in the UK. Informed by recent debates in material studies and ‘materialities of care’ we offer an analysis of a care home project that is sensitive to architectural materials that are not normally associated with care and wellbeing. Although the care home design project we focus on in this article was never built, we found that design discussions relating to both a curved brick wall and bricks more generally were significant to its architectural ‘making’. The curved wall and the bricks were used by the architects to encode quality and values of care into their design. This was explicit in the design narrative that was core to a successful tender submitted by a consortium comprising architects, developers, contractors, and a care provider to a local authority who commissioned the care home. However, as the project developed, initial consensus for the design features fractured. Using a materialised analysis, we document the tussles generated by the curved wall and the bricks and argue that mundane building materials can be important to, and yet marginalised within, the relations inherent within an ‘architectural care assemblage.’ During the design process we saw how decisions about materials are contentious and they act as a catalyst of negotiations that compromise ‘materialities of care.

What next? Experiences of social support and signposting after a diagnosis of dementia

The experience of being diagnosed with dementia can be shocking. This may be compounded if individuals feel that there is a lack of signposting onto further avenues of support following diagnosis. This study, then, examines how social support is promoted in the diagnostic process. Using purposive sampling and a grounded theory approach, semi-structured interviews were conducted with 13 members of a dementia empowerment group in Northern Ireland, discussing both their experience of diagnosis and also their subsequent group membership. Respondents reported both positive and negative experiences of diagnosis. Feelings of shock and bewilderment accompanied this process. Only one was able to identify a direct link between a medical professional and referral to the empowerment group, others being referred by other health professionals or dementia navigators. The study indicates that, due to disorienting feelings, one diagnostic consultation is insufficient to explain both the diagnosis and offer follow-up support. Therefore, more explicit links to navigators or other services need to be made at the point of diagnosis to prioritise information regarding opportunities for social engagement for those being diagnosed.

Dementia as a source of social disadvantage and exclusion

Objective To explore perceptions of the impacts of dementia on people living with the condition and those close to them and examine the relationship between dementia, disadvantage and social exclusion. Methods Semi-structured in-depth interviews were conducted with 111 participants: people with dementia (n = 19), carers (n = 28), health-care professionals (n = 21), social workers (n = 23) and service professionals (n = 20). NVivo 11 was used to code descriptions and identify impact areas. Results Participants described social, psychological, carer, material, service-based and disparity impacts associated with the experience of dementia. Some of these impacts correspond to social exclusion associated with age, but some are distinctive to dementia. Discussion It is argued that dementia generates its own forms of social disadvantage and exclusion. This is in addition to being subject to structural risk factors. The implications of the active effects of dementia as a social phenomenon should give rise to new policy and practice priorities.Peer reviewe

Data-driven staging of genetic frontotemporal dementia using multi-modal MRI

Frontotemporal dementia in genetic forms is highly heterogeneous and begins many years to prior symptom onset, complicating disease understanding and treatment development. Unifying methods to stage the disease during both the presymptomatic and symptomatic phases are needed for the development of clinical trials outcomes. Here we used the contrastive trajectory inference (cTI), an unsupervised machine learning algorithm that analyzes temporal patterns in high-dimensional large-scale population datasets to obtain individual scores of disease stage. We used cross-sectional MRI data (gray matter density, T1/T2 ratio as a proxy for myelin content, resting-state functional amplitude, gray matter fractional anisotropy, and mean diffusivity) from 383 gene carriers (269 presymptomatic and 115 symptomatic) and a control group of 253 noncarriers in the Genetic Frontotemporal Dementia Initiative. We compared the cTI-obtained disease scores to the estimated years to onset (age-mean age of onset in relatives), clinical, and neuropsychological test scores. The cTI based disease scores were correlated with all clinical and neuropsychological tests (measuring behavioral symptoms, attention, memory, language, and executive functions), with the highest contribution coming from mean diffusivity. Mean cTI scores were higher in the presymptomatic carriers than controls, indicating that the method may capture subtle pre-dementia cerebral changes, although this change was not replicated in a subset of subjects with complete data. This study provides a proof of concept that cTI can identify data-driven disease stages in a heterogeneous sample combining different mutations and disease stages of genetic FTD using only MRI metrics.© 2021 The Authors. Human Brain Mapping published by Wiley Periodicals LLC

Stratifying the Presymptomatic Phase of Genetic Frontotemporal Dementia by Serum NfL and pNfH: A Longitudinal Multicentre Study

OBJECTIVE: Although the presymptomatic stages of frontotemporal dementia (FTD) provide a unique chance to delay or even prevent neurodegeneration by early intervention, they remain poorly defined. Leveraging a large multicenter cohort of genetic FTD mutation carriers, we provide a biomarker-based stratification and biomarker cascade of the likely most treatment-relevant stage within the presymptomatic phase: the conversion stage. METHODS: We longitudinally assessed serum levels of neurofilament light (NfL) and phosphorylated neurofilament heavy (pNfH) in the Genetic FTD Initiative (GENFI) cohort (n = 444), using single-molecule array technique. Subjects comprised 91 symptomatic and 179 presymptomatic subjects with mutations in the FTD genes C9orf72, GRN, or MAPT, and 174 mutation-negative within-family controls. RESULTS: In a biomarker cascade, NfL increase preceded the hypothetical clinical onset by 15 years and concurred with brain atrophy onset, whereas pNfH increase started close to clinical onset. The conversion stage was marked by increased NfL, but still normal pNfH levels, while both were increased at the symptomatic stage. Intra-individual change rates were increased for NfL at the conversion stage and for pNfH at the symptomatic stage, highlighting their respective potential as stage-dependent dynamic biomarkers within the biomarker cascade. Increased NfL levels and NfL change rates allowed identification of presymptomatic subjects converting to symptomatic disease and capture of proximity-to-onset. We estimate stage-dependent sample sizes for trials aiming to decrease neurofilament levels or change rates. INTERPRETATION: Blood NfL and pNfH provide dynamic stage-dependent stratification and, potentially, treatment response biomarkers in presymptomatic FTD, allowing demarcation of the conversion stage. The proposed biomarker cascade might pave the way towards a biomarker-based precision medicine approach to genetic FTD. ANN NEUROL 2021