Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives

OBJECTIVES: To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers. DESIGN: Secondary thematic analysis of 82 semi-structured interviews. SETTING: Community settings across the United Kingdom. PARTICIPANTS: 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff. RESULTS: We identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit. CONCLUSION: The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

YesBACKGROUND: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. METHODS: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. RESULTS: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. DISCUSSION: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.This work was supported by the Alzheimer’s Society (UK) and was carried out within the UCL Alzheimer’s Society Centre of Excellence for Independence at home, NIDUS (New Interventions in Dementia Study) programme (Alzheimer’s Society Centre of Excellence grant 330). This project is also part-funded funded by The National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC)

“Control-Alt-Delete”: Rebooting Solutions for the E-Waste Problem

A number of efforts have been launched to solve the global electronic waste (e-waste) problem. The efficiency of e-waste recycling is subject to variable national legislation, technical capacity, consumer participation, and even detoxification. E-waste management activities result in procedural irregularities and risk disparities across national boundaries. We review these variables to reveal opportunities for research and policy to reduce the risks from accumulating e-waste and ineffective recycling. Full regulation and consumer participation should be controlled and reinforced to improve local e-waste system. Aiming at standardizing best practice, we alter and identify modular recycling process and infrastructure in eco-industrial parks that will be expectantly effective in countries and regions to handle the similar e-waste stream. Toxicity can be deleted through material substitution and detoxification during the life cycle of electronics. Based on the idea of "Control-Alt-Delete", four patterns of the way forward for global e-waste recycling are proposed to meet a variety of local situations

A checklist and status report of the fern and fern allies in Hawaii Volcanoes National Park

Reports were scanned in black and white at a resolution of 600 dots per inch and were converted to text using Adobe Paper Capture Plug-in.There are 86 species of ferns and fern allies distributed in Hawaii Volcanoes National Park. These species belong to 38 genera in 17 families. Of the plants listed, 52 species are endemic to the Hawaiian Islands, but none of them are endemic to the National Park region. However, the indigenous species Lindsaea ensifolia Sw. has only been reported from the Park and from nowhere else on the other Hawaiian Islands. There are a total of seven exotic species of ferns and fern allies in the National Park area none of which at the moment can be considered potential noxious weeds. Thirteen species are rare and recommendations have been made for their preservation.National Park Service Contract No. CX 8000 6 003

The Gendered Language of Gravestones: A Comparative Study of Central and Northern Appalachian Cemeteries

Cemeteries are cultural landscapes that reveal key details about their communities. The gravestone-its architecture, epitaph, iconography, and positioning within a cemetery-is a rhetorical device that reflects social and economic values of a particular era within the community. This qualitative study examines the gravestones of two public Appalachian cemeteries: one in a western Pennsylvania township of Northern Appalachia and the other in far southwestern Virginia in Central Appalachia. The data suggest gendered rhetorical patterns in how men and women have been represented in death from the late nineteenth century to present day. These patterns can be linked to sociocultural shifts in Appalachia in the past century and suggest that Appalachian cemeteries also function as sites of rhetorical power for the living

Supine blood pressure—A clinically relevant determinant of vascular target organ damage in hypertensive patients

Abstract Night‐time blood pressure (BP) is an important predictor of cardiovascular outcomes. Its assessment, however, remains challenging due to limited accessibility to ambulatory BP devices in many settings, costs, and other factors. We hypothesized that BP measured in a supine position during daytime may perform similarly to night‐time BP when modeling their association with vascular hypertension‐mediated organ damage (HMOD). Data from 165 hypertensive patients were used who as part of their routine clinic workup had a series of standardized BP measurements including seated attended office, seated and supine unattended office, and ambulatory BP monitoring. HMOD was determined by assessment of kidney function and pulse wave velocity. Correlation analysis was carried out, and univariate and multivariate models were fitted to assess the extent of shared variance between the BP modalities and their individual and shared contribution to HMOD variables. Of all standard non‐24‐hour systolic BP assessments, supine systolic BP shared the highest degree of variance with systolic night‐time BP. In univariate analysis, both systolic supine and night‐time BP were strong determinants of HMOD variables. In multivariate models, supine BP outperformed night‐time BP as the most significant determinant of HMOD. These findings indicate that supine BP may not only be a clinically useful surrogate for night‐time BP when ambulatory BP monitoring is not available, but also highlights the possibility that unattended supine BP may be more closely related to HMOD than other BP measurement modalities, a proposition that requires further investigations in prospective studies