COVID-19 Policy Response and the Rise of the Sub-National Governments.

We examine the roles of sub-national and national governments in Canada and the United States vis-à-vis the protective public health response in the onset phase of the global coronavirus disease 2019 (COVID-19) pandemic. This period was characterized in both countries by incomplete information as well as by uncertainty regarding which level of government should be responsible for which policies. The crisis represents an opportunity to study how national and sub-national governments respond to such policy challenges. In this article, we present a unique dataset that catalogues the policy responses of US states and Canadian provinces as well as those of the respective federal governments: the Protective Policy Index (PPI). We then compare the United States and Canada along several dimensions, including the absolute values of sub-national levels of the index relative to the total protections enjoyed by citizens, the relationship between early threat (as measured by the mortality rate near the start of the public health crisis) and the evolution of the PPI, and finally the institutional and legislative origins of the protective health policies. We find that the sub-national contribution to policy is more important for both the United States and Canada than are their national-level policies, and it is unrelated in scope to our early threat measure. We also show that the institutional origin of the policies as evidenced by the COVID-19 response differs greatly between the two countries and has implications for the evolution of federalism in each.

Nous examinons le rôle des gouvernements infranationaux et nationaux du Canada et des États-Unis dans l'adoption de mesures de protection de la santé publique au stade initial de la pandémie mondiale de COVID­19. Cette période a été caractérisée dans les deux pays par des informations incomplètes ainsi que par une incertitude quant à l'ordre de gouvernement responsable de telle ou telle politique. La crise offre l'occasion d'étudier comment les gouvernements nationaux et infranationaux relèvent ces défis politiques. Dans l'article qui suit, nous présentons un ensemble de données unique qui répertorie les décisions politiques des États américains et des provinces canadiennes en matière de protection, ainsi que celles des gouvernements fédéraux respectifs : l'indice de politique de protection (IPP). Nous comparons ensuite les États-Unis et le Canada selon plusieurs dimensions, notamment les valeurs absolues des niveaux infranationaux de l'IPP par rapport aux protections totales dont bénéficient les citoyens, la relation entre la « menace précoce ¼ (mesurée selon les taux de mortalité à l'approche du début de la crise de santé publique) et l'évolution de l'IPP et, enfin, les origines institutionnelles­législatives des politiques de protection de la santé. Nous constatons que la contribution infranationale à la politique est plus importante pour les deux pays mais qu'elle n'est pas liée à notre mesure de la « menace précoce ¼. Nous démontrons également que l'origine institutionnelle des politiques diffère grandement entre les deux pays et que cela a des répercussions sur l'évolution du fédéralisme.

O brother how art thou: Propensity to report self-assessed unmet need.

Research investigating self-assessed unmet need (SUN) has taken the reports from surveys as given and subsequently attempted to discover patterns in inequality of access to healthcare. This requires the yet untested assumption that, given a certain level of care and demand, the likelihood of reporting unmet need does not vary across socioeconomic/demographic status (SEDS), be satisfied. Using an administrative dataset spanning 2001 to 2011 comprised of sufferers of a set of conditions that suggest unmet need (n = 3300) we evaluate the proposition that, given health status and care received, the propensity to report unmet need does not vary along SEDS. The results are further validated using the Canadian Community Health Surveys between 2001 and 2013 (n = 237,483). We find that the assumption of independence between reporting SUN and SEDS is not satisfied. Many of the groups found to have less access in previous studies may simply be more prone to interpret/answer the survey questions about unmet need in a certain way. The results of this research suggest that, in its present incarnation, survey data on self-assessed unmet need does not accurately measure what much of the academic literature has assumed it does.

Here comes the SUN: Self-assessed unmet need, worsening health outcomes, and health care inequity.

Utilization-based approaches have predominated the measurement of socioeconomic-related inequity in health care. This approach, however, can be misleading when preferences over health and health care are correlated with socioeconomic status, especially when the underlying focus is on equity of access. We examine the potential usefulness of an alternative approach to assessing inequity of access using a direct measure of possible barriers to access-self-reported unmet need (SUN)-which is documented to vary with socioeconomic status and is commonly asked in health surveys. Specifically, as part of an assessment of its external validity, we use Canadian longitudinal health data to test whether self-reported unmet need in one period is associated with a subsequent deterioration in health status in a future period, and find that it is. This suggests that SUN does reflect in part reduced access to needed health care, and therefore may have a role in assessing health system equity as a complement to utilization-based approaches.

Digital Support Platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia.

OBJECTIVES: To establish the feasibility of the Digital Support Platform (DSP), an internet-based, postdiagnostic tool designed for families living with a diagnosis of dementia. DESIGN: Qualitative methods using normalisation process theory as an analysis framework for semistructured interview transcriptions. SETTING: A community care setting in the South-East Scotland. PARTICIPANTS: We interviewed 10 dyads of people with Alzheimer's, vascular or mixed dementia (PWD), and their family carers, who had been given and had used the DSP for at least 2 months. RESULTS: Our analysis revealed that the DSP was predominantly understood and used by the carers rather than PWD, and was used alongside tools and methods they already used to care for their relative. The DSP was interpreted as a tool that may be of benefit to those experiencing later stages of dementia or with physical care needs. Carers stated that the DSP may be of benefit in the future, reflecting a disinclination to prepare for or anticipate for future needs, rather than focus on those needs present at the time of distribution. PWD spoke positively about an interest in learning to use technology more effectively and enjoyed having their own tablet devices. CONCLUSIONS: The DSP was not wholly appropriate for families living with dementia in its early stages. The views of carers confirmed that postdiagnostic support was valued, but emphasised the importance of tailoring this support to the exact needs and current arrangements of families. There may be a benefit to introducing, encouraging, providing and teaching internet-enabled technology to those PWD who do not currently have access. Training should be provided when introducing new technology to PWD.

What can the treatment of Parkinson's disease learn from dementia care; applying a bio-psycho-social approach to Parkinson's disease.

BACKGROUND: Within contemporary medical practice, Parkinson's disease (PD) is treated using a biomedical, neurological approach, which although bringing numerous benefits can struggle to engage with how people with PD experience the disease. A bio-psycho-social approach has not yet been established in PD; however, bio-psycho-social approaches adopted within dementia care practice could bring significant benefit to PD care. METHODS: This paper summarises existing bio-psycho-social models of dementia care and explores how these models could also usefully be applied to care for PD. Specifically, this paper adapts the bio-psycho-social model for dementia developed by Spector and Orrell (), to suggest a bio-psycho-social model, which could be used to inform routine care in PD. RESULTS: Drawing on the biopsychosocial model of Dementia put forward by Spector and Orrell (), this paper explores the application of a bio-psycho-social model of PD. This model conceptualises PD as a trajectory, in which several interrelated fixed and tractable factors influence both PD's symptomology and the various biological and psychosocial challenges individuals will face as their disease progresses. Using an individual case study, this paper then illustrates how such a model can assist clinicians in identifying suitable interventions for people living with PD. CONCLUSION: This model concludes by discussing how a bio-psycho-social model could be used as a tool in PD's routine care. The model also encourages the development of a theoretical and practical framework for the future development of the role of the PD specialist nurse within routine practice. IMPLICATIONS FOR PRACTICE: A biopsychosocial approach to Parkinson's Disease provides an opportunity to move towards a holistic model of care practice which addresses a wider range of factors affecting people living with PD. The paper puts forward a framework through which PD care practice can move towards a biopsychosocial perspective. PD specialist nurses are particularly well placed to adopt such a model within routine clinical practice, and should therefore be encouraged within PD services.

Cognitive stimulation therapy in dementia care: exploring the views and experiences of service providers on the barriers and facilitators to implementation in practice using Normalization Process Theory.

BACKGROUND: Cognitive stimulation therapy (CST) is an evidence-based, cost-effective psychosocial intervention for people with dementia but is currently not a standard part of post-diagnostic care. This qualitative study explored the views and experiences of dementia care providers on the barriers and facilitators to its implementation in usual care. METHOD: Thirty four semi-structured interviews (24 participants) were conducted across four dementia care sites in the North of England; ten were follow-up interviews. Data were analyzed using thematic analysis and then mapped to the Normalization Process Theory framework. RESULTS: Participants considered CST a "good fit" with their "preferred" ways of working and goals of dementia care namely the provision of person-centered services. For facilitators delivering the intervention, compared to other behavioral interventions, CST was seen to offer benefits to their work and was easy to understand as an intervention. Training in CST and seeing benefits for clients were important motivators. Time and resources were crucial for the successful implementation of CST. Participants were keen to objectively measure benefits to participants but unsure how to do this. CONCLUSIONS: CST is a cost-effective psychosocial intervention for people with dementia, recommended by national guidance. Despite our findings which show that, using the NPT framework, there are more facilitators than barriers to the implementation of CST, it is still not a standard part of post-diagnostic dementia care. Further research is needed to explore the reasons for this implementation gap in ensuring evidence-based care in translated into practice.

When walking becomes wandering: representing the fear of the fourth age.

Dementia is linked to behavioural changes that are perceived as challenging to care practices. One such behavioural change is 'wandering', something that is often deeply feared by carers and by people with dementia themselves. Understanding how behavioural changes like wandering are experienced as problematic is critically important in current discussions about the behavioural and psychological symptoms of dementia. In this article we draw on our secondary analysis of qualitative interviews and focus groups with carers of people with dementia to critically question 'when does walking become wandering'? Drawing on theoretical perspectives from anthropology, sociology and human geography to explore experiences of carers and of people with dementia, we argue that a conceptual shift occurs in how pedestrian activity, usually represented as something purposeful, meaningful and healthy (walking) is seen as something threatening that needs managing (wandering). We demonstrate how this shift is connected to cultural assumptions about the mind-body relationship in both walking and in dementia. We further argue that the narratives of carers about wandering challenge the notion of 'aimless' walking in the fourth age. This is because, as these narratives show, there are often pronounced links to specific areas and meaningful places where people with dementia walk to.

Ageing, masculinity and Parkinson's disease: embodied perspectives.

Parkinson's disease (PD) presents as an illness which predominantly affects older men. However older men's lived experiences of PD, including how they are influenced by age and gender relations has seen little empirical study. Drawing on Watson's male body schema, this paper explores how men engage with masculinities and ageing in order to make sense and meaning from PD. Data is presented from 30 narrative and semi structured interviews with 15 men of various ages who were living with PD. Findings suggest that PD threatens a visceral embodiment located in the body's basic movements and intimate functions; a pragmatic embodiment expressed through men's everyday occupations and an experiential embodiment concerned with emotions and sensations felt within and through the body. In addition, each dimension of men's embodiment also intersected with the ageing process, a process also shaped in turn by broader social and cultural concerns regarding the positions and possibilities of men's lives as they move through the life course. This paper concludes by discussing the implications of gender and ageing in understanding men's experiences of PD.

Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews.

BACKGROUND: Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia. METHODS: Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted. RESULTS: Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter. To be most effective, such interventions should include both an educational and a therapeutic component; delivery through a support group format may further enhance their effectiveness. CONCLUSIONS: Successful translation of evidence into practice in this area remains a challenge. Future research should focus on determining the most cost-effective means of delivering effective multi-component interventions in real-world settings; the cost-effective potential of technology-based interventions is considerable.

Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study.

OBJECTIVES: To explore the views and experiences of people with dementia, their family carers and general practitioners (GPs) on their knowledge and experience of accessing information about, and use of, assistive technology (AT) in dementia care. DESIGN: Qualitative methods with semistructured interviews and thematic analysis. PARTICIPANTS: 56 participants comprising 17 GPs, 13 people with dementia and 26 family carers. SETTING: Community care settings in the North East of England. RESULTS: 4 main themes emerged: awareness and experience of AT; accessing information on AT; roles and responsibilities in the current care system and the future commissioning of AT services. All participants had practical experience of witnessing AT being used in practice. For people with dementia and their families, knowledge was usually gained from personal experience rather than from health and social care professionals. For GPs, knowledge was largely gained through experiential, patient-led learning. All groups acknowledged the important role of the voluntary sector but agreed a need for clear information pathways for AT; such pathways were perceived to be essential to both service providers and service commissioners. CONCLUSIONS: People with dementia and their family carers appear to be mainly responsible for driving a gradual increase in both awareness and the use of AT in dementia care. GPs should be equipped with the relevant knowledge to ensure families living with dementia receive appropriate information and support to enable them to live independently for as long as possible. There is an urgent need to simplify current complex community care pathways; as demonstrated in other chronic health conditions, a single point of access and a named lead professional may improve future care.

Spotlight on Scotland: Assets and Opportunities for Aging Research in a Shifting Sociopolitical Landscape.

Scotland is a small nation, yet it leads the field in key areas of aging research. With the creation of a devolved government with authority over health and social services, the country has witnessed practice and policy developments that offer distinctive opportunities for innovative research. With multidisciplinary groups of internationally recognized researchers, Scotland is able to take advantage of a unique set of opportunities for aging research: a well-profiled population brings opportunities in population data and linkage to understand people's interactions with health, social care, and other public services; while research on technology and telecare is a distinctive area where Scotland is recognized internationally for using technology to develop effective, high-quality and well-accepted services at relatively low financial cost. The paper also considers free personal care for older people and the national dementia strategy in Scotland. The potential to evaluate the impact of free personal care will provide valuable information for other global health and social care systems. Exploring the impact of the national dementia strategy is another unique area of research that can advance understanding in relation to quality of life and the development of services. The paper concludes that, while Scotland benefits from unique opportunities for progressive public policy and innovative aging research that will provide valuable lessons at the forefront of a globally aging population, the challenges associated with an aging population and increasing cultural diversity must be acknowledged and addressed to ensure that the vision of equality and social justice for all is realized.

'Signposts on the journey'; medication adherence and the lived body in men with Parkinson's disease.

Adherence to medication has been identified as a key issue in the treatment of many chronic illnesses, however such a perspective fails to account for the lived experience of medication usage and its effects on the body as lived. Parkinson's Disease, a neurological disease predominantly affecting movement and mobility, and which is treated via a wide range of medications provides a useful opportunity to explore experiences of medication usage in chronic illness. Reporting on findings of a study exploring men's experience of living with Parkinson's Disease, this paper adopts a lived body perspective to explore lived experiences of medication usage and adherence in PD. Findings are reported from 30 narrative in depth interviews with 15 men of various ages living with Parkinson's disease of mild to severe intensity. Findings first discuss PD's effects on men's sense of the lived body, in which a fluctuating embodiment is linked to medication regimes and their bodily effects. Second, as PD disrupts the body's place with the everyday and habitual experience of lived time, medication regimens come to place new structures upon the men's everyday experience of time. Finally, the paper explores the role medications play in men's attempts to create and sustain narratives for the individual progression of their illness, and how these narratives differ from clinical narratives associated with PD's treatment. This paper concludes by discussing debates around adherence to medication within the treatment of PD and the need to consider lived experience of medication usage and their effects at the level of the lived body.

The provision of assistive technology products and services for people with dementia in the United Kingdom.

In this review we explore the provision of assistive technology products and services currently available for people with dementia within the United Kingdom. A scoping review of assistive technology products and services currently available highlighted 171 products or product types and 331 services. In addition, we assimilated data on the amount and quality of information provided by assistive technology services alongside assistive technology costs. We identify a range of products available across three areas: assistive technology used 'by', 'with' and 'on' people with dementia. Assistive technology provision is dominated by 'telecare' provided by local authorities, with services being subject to major variations in pricing and information provision; few currently used available resources for assistive technology in dementia. We argue that greater attention should be paid to information provision about assistive technology services across an increasingly mixed economy of dementia care providers, including primary care, local authorities, private companies and local/national assistive technology resources.

The everyday use of assistive technology by people with dementia and their family carers: a qualitative study.

BACKGROUND: Assistive Technology (AT) has been suggested as a means by which people with dementia can be helped to live independently, while also leading to greater efficiencies in care. However little is known about how AT is being used by people with dementia and their carers in their daily routines. This paper reports on a qualitative study exploring the everyday use of AT by people with dementia and their families. METHODS: The research employed a qualitative methodology. Semi structured interviews took place with 39 participants, 13 people with dementia and 26 carers. Key themes were identified using thematic analysis and the constant comparative method. RESULTS: Three categories of AT use in everyday settings were identified; formal AT, accessed via social care services, 'off the shelf AT' purchased privately, and 'do it yourself' AT, everyday household products adapted by families to fulfil individual need in the absence of specific devices. Access to AT was driven by carers, with the majority of benefits being experienced by carers. Barriers to use included perceptions about AT cost; dilemmas about the best time to use AT; and a lack of information and support from formal health and social care services about how to access AT, where to source it and when and how it can be used. CONCLUSIONS: It has been argued that the 'mixed economy' landscape, with private AT provision supplementing state provision of AT, is a key feature for the mainstreaming of AT services. Our data suggests that such a mixed economy is indeed taking place, with more participants using 'off the shelf' and 'DIY' AT purchased privately rather than via health and social care services. However this system has largely arisen due to an inability of formal care services to meet client needs. Such findings therefore raise questions about just who AT in its current provision is working for and whether a mixed market approach is the most appropriate provider model. Everyday technologies play an important role in supporting families with dementia to continue caring; further research is needed however to determine the most effective and person-centred models for future AT provision.

Depression and anxiety related subtypes in Parkinson's disease.

BACKGROUND: Depression and anxiety are common in Parkinson's disease (PD) and although clinically important remain poorly understood and managed. To date, research has tended to treat depression and anxiety as distinct phenomena. There is growing evidence for heterogeneity in PD in the motor and cognitive domains, with implications for pathophysiology and outcome. Similar heterogeneity may exist in the domain of depression and anxiety. OBJECTIVE: To identify the main anxiety and depression related subtype(s) in PD and their associated demographic and clinical features. METHODS: A sample of 513 patients with PD received a detailed assessment of depression and anxiety related symptomatology. Latent Class Analysis (LCA) was used to identify putative depression and anxiety related subtypes. Results LCA identified four classes, two interpretable as 'anxiety related': one anxiety alone (22.0%) and the other anxiety coexisting with prominent depressive symptoms (8.6%). A third subtype (9%) showed a prominent depressive profile only without significant anxiety. The final class (60.4%) showed a low probability of prominent affective symptoms. The validity of the four classes was supported by distinct patterns of association with important demographic and clinical variables. CONCLUSION: Depression in PD may manifest in two clinical phenotypes, one 'anxious-depressed' and the other 'depressed'. However, a further large proportion of patients can have relatively isolated anxiety. Further study of these putative phenotypes may identify important differences in pathophysiology and other aetiologically important factors and focus research on developing more targeted and effective treatment.

The impact of location on satisfaction with dementia services amongst people with dementia and their informal carers: a comparative evaluation of a community-based and a clinic-based memory service.

BACKGROUND: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia. METHODS: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis. RESULTS: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers. CONCLUSION: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.

Optimum activity of the phosphofructokinase from Ascaris suum requires more than one metal ion.

Phosphofructokinase (PFK) catalyzes the phosphorylation of fructose 6-phosphate (F6P) to give fructose 1,6-bisphosphate (FBP) using MgATP as the phosphoryl donor. As the concentration of Mg(2+) increases above the concentration needed to generate the MgATP chelate complex, a 15-fold increase in the initial rate was observed at low MgATP. The effect of Mg(2+) is limited to V/K(MgATP), and initial rate studies indicate an equilibrium-ordered addition of Mg(2+) before MgATP. Isotope partitioning of the dPFK:MgATP complex indicates a random addition of MgATP and F6P at low Mg(2+), with the rate of release of MgATP from the central E:MgATP:F6P complex 4-fold faster than the net rate constant for catalysis. This can be contrasted with the ordered addition of MgATP prior to F6P at high Mg(2+). The addition of fructose 2,6-bisphosphate (F26P(2)) has no effect on the mechanism at low Mg(2+), with the exception of a 4-fold increase in the affinity of the enzyme for F6P. At high Mg(2+), F26P(2) causes the kinetic mechanism to become random with respect to MgATP and F6P and with MgATP released from the central complex half as fast as the net rate constant for catalysis. The latter is in agreement with previous studies [Gibson, G. E., Harris, B. G., and Cook, P. F. (1996) Biochemistry 35, 5451-5457]. The overall effect of Mg(2+) is a decrease in the rate of release of MgATP from the E:MgATP:F6P complex, independent of the concentration of F26P(2).

The scope for qualitative methods in research and clinical trials in dementia.

In the evaluation of drugs, the randomised double-blind placebo controlled trial is the 'gold standard'. This method, based on a positivist paradigm, answers questions about efficacy and side-effects of treatments that are accepted as valid, reliable and generalisable, provided the study is well designed and properly conducted. In contrast, qualitative research methodologies, originating from the social sciences, embrace a variety of approaches, including phenomenological and other paradigms. Within clinical and health services research, qualitative approaches view the world more subjectively, acknowledging that the researcher is part of what is researched, focusing on meanings and understanding of experience, rather than on what can be reduced to quantitative measures. They can develop new ideas through induction from data, rather than confirming or refuting hypotheses. Qualitative methods have improved our understanding of the experiences of people with dementia and, if used alongside clinical trials, could be used to improve the relevance of outcomes to patients, compliance and user involvement. They could also possibly generate new measures of efficacy and effectiveness in severe dementia.