Gaps in the System: Supporting People Living with Dementia.

Persons living with dementia and their caregivers often face challenges in accessing support for their complex needs. This study aims to understand how program administrators, people living with dementia, unpaid caregivers, and decision-makers perceive specific dementia care programs and whether they are adequately meeting the needs of individuals living with dementia. Forty semi-structured interviews were conducted between 2018 and 2020 in five North American jurisdictions. Three main gaps were identified (1) disconnected system infrastructure, (2) lack of comprehensive services to meet diverse needs, and (3) inconsistent understandings of dementia. Despite having programs in place, there remain significant limitations in systems that could be addressed to adequately meet the needs of individuals living with dementia and their caregivers.

Aging through the time of COVID-19: a survey of self-reported healthcare access.

BACKGROUND: Chronic conditions are common and require ongoing continuous management and preventive measures. The COVID-19 pandemic may have affected the management of chronic conditions by delaying care. We sought to understand the impact of personal characteristics (i.e., age) and healthcare factors (i.e., access to a provider) on healthcare access in a sample of Americans 50 years of age or older during COVID-19. METHOD: Participants completed an online survey at the start of the COVID-19 pandemic - the Aging in the Time of COVID Survey. Questions focused on health status, health care access, COVID-19 fear, and social connectedness. Participants were recruited through social media advertisements, list serves, and snowball sampling. Data collection started in early April 2020 and concluded in late May 2020. Logistic regression models examined the results of two key access points: healthcare provider/doctor (n = 481) and medication (n = 765), with 56 and 93% of participants reporting access to a provider and medications, respectively. RESULTS: Individuals with an established primary care provider were much more likely to obtain access to a healthcare provider, OR = 3.81 (95% CI: 1.69, 8.77), and to receive medication, OR = 4.48 (95% CI: 1.61, 11.48), during the time of COVID-19. In addition, access to medication was (a) higher for those who were older, OR = 1.05 (95% CI: 1.01, 1.09), had a higher income (greater than 100 k compared to less than 50 k, OR = 3.04 (95% CI: 1.11, 8.98), and (b) lower for those having caregiving responsibilities, OR = 0.41 (95% CI: 0.21, 0.78), or greater social isolation, OR = 0.93 (95% CI: 0.87, 0.98). CONCLUSIONS: Although most participants had access to medication, just over half had access to a healthcare provider when needed. Notably, health-seeking behaviors for individuals who do not have an established primary care providers as well as those who provide unpaid care, are socially isolated, and younger may require more proactive approaches to care monitoring, management, and maintenance.

"It's More than Just Needing money": The Value of Supporting Networks of Care.

It is well established in research, practice, and policy that unpaid caregivers (family and friends of people with care needs) experience stress in their role. Supports that have been put in place by policy planners and program developers to support caregivers may not be accessed by caregivers at all or may do little to reduce their stress. Accessing personal resources (education, finances), in addition to social resources (individual connections) and societal resources (community supports) are critical in fostering resilience in caregivers (helping them adapt to stress and adversity). Social capital theorists argue that creating connections at various levels can improve access to resources. This research, through qualitative interviews (n = 21), identifies the different levels of resources required to address the needs of caregivers. Our findings indicate that interventions that focus on access to personal-level resources (education, funding) are important, but are on their own insufficient. Of more importance were interventions that work to improve relationships between formal providers and families; access to interdisciplinary teams; cross-sectoral collaborations; and inter-organization relationships, highlighting that a system that works together is likely to improve caregivers' access to resources.

Age-Based Healthcare Stereotype Threat during the COVID-19 Pandemic.

Older adults have been identified as a high-risk population for COVID-19 by the United States Centers for Disease Control and Prevention (CDC). Though well-intentioned, this nonspecific designation highlights stereotypes of older adults as frail and in need of protection, exacerbating negative age-based stereotypes that can have adverse effects on older adults' well-being. Healthcare stereotype threat (HCST) is concern about being judged by providers and receiving biased medical treatment based on stereotypes about one's identity - in this case age. Given the attention to older adults' physical vulnerabilities during the COVID-19 pandemic, older adults may be especially worried about age-based judgments from medical providers and sensitive to ageist attitudes about COVID-19. Online data collection (April 13 to May 15, 2020) with adults aged 50 and older (N = 2325, M = 63.11, SD = 7.53) examined age-based HCST. Respondents who worried that healthcare providers judged them based on age (n = 584) also reported more negative COVID-19 reactions, including perceived indifference toward older adults, young adults' lack of concern about health, and unfavorable media coverage of older adults. The results highlight the intersection of two pandemics: COVID-19 and ageism. We close with consideration of the clinical implications of the results.

Provincial legislative and regulatory standards for pain assessment and management in long-term care homes: a scoping review and in-depth case analysis.

BACKGROUND: Among Canadian residents living in long-term care (LTC) facilities, and especially among those with limited ability to communicate due to dementia, pain remains underassessed and undermanaged. Although evidence-based clinical guidelines for the assessment and management of pain exist, these clinical guidelines are not widely implemented in LTC facilities. A relatively unexplored avenue for change is the influence that statutes and regulations could exert on pain practices within LTC. This review is therefore aimed at identifying the current landscape of policy levers used across Canada to assess and manage pain among LTC residents and to evaluate the extent to which they are concordant with evidence-based clinical guidelines proposed by an international consensus group consisting of both geriatric pain and public policy experts. METHODS: Using scoping review methodology, a search for peer-reviewed journal articles and government documents pertaining to pain in Canadian LTC facilities was carried out. This scoping review was complemented by an in-depth case analysis of Alberta, Saskatchewan, and Ontario statutes and regulations. RESULTS: Across provinces, pain was highly prevalent and was associated with adverse consequences among LTC residents. The considerable benefits of using a standardized pain assessment protocol, along with the barriers in implementing such a protocol, were identified. For most provinces, pain assessment and management in LTC residents was not specifically addressed in their statutes or regulations. In Alberta, Saskatchewan, and Ontario, regulations mandate the use of the interRAI suite of assessment tools for the assessment and reporting of pain. CONCLUSION: The prevalence of pain and the benefits of implementing standardized pain assessment protocols has been reported in the research literature. Despite occasional references to pain, however, existing regulations do not recommend assessments of pain at the frequency specified by experts. Insufficient direction on the use of specialized pain assessment tools (especially in the case of those with limited ability to communicate) that minimize reliance on subjective judgements was also identified in current regulations. Existing policies therefore fail to adequately address the underassessment and undermanagement of pain in older adults residing in LTC facilities in ways that are aligned with expert consensus.

An alternate level of care plan: Co-designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges.

OBJECTIVE: To engage with patients, caregivers and care providers to co-design components of an intervention that aims to improve delayed hospital discharge experiences. DESIGN: This is a qualitative study, which entailed working groups and co-design sessions utilizing World Café and deliberative dialogue techniques to continually refine the intervention. SETTING AND PARTICIPANTS: Our team engaged with 61 participants (patients, caregivers and care providers) in urban and rural communities across Ontario, Canada. A 7-member Patient and Caregiver Advisory Council participated in all stages of the research. RESULTS: Key challenges experienced during a delayed discharge by patients, caregivers and care providers were poor communication and a lack of care services. Participants recommended a communication guide to support on-going conversation between care providers, patients and caregivers. The guide included key topics to cover and questions to ask during initial and on-going conversations to manage expectations and better understand the priorities and goals of patients and caregivers. Service recommendations included getting out of bed and dressed each day, addressing the psycho-social needs of patients through tailored activities and having a storyboard at the bedside to facilitate on-going engagement. DISCUSSION AND CONCLUSIONS: Our findings outline ways to meaningfully engage patients and caregivers during a delayed hospital discharge. Combining this with a minimal basket of services can potentially facilitate a better care experience and outcomes for patients, their care providers and families.

How does it feel to be a problem? Patients' experiences of self-management support in New Zealand and Canada.

BACKGROUND: The impact of long-term conditions is the "healthcare equivalent to climate change." People with long-term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self-manage. The Practical Reviews in Self-Management Support (PRISMS) taxonomy lists what provider actions might support patient self-management. OBJECTIVE: To offer providers advice on how to support patient self-management. DESIGN: Semi-structured interviews with 40 patient-participants. SETTING AND PARTICIPANTS: Three case studies of primary health-care organizations in New Zealand and Canada serving diverse populations. Participants were older adults with long-term conditions who needed support to live in the community. MAIN OUTCOME MEASURES: Qualitative description to classify patient narratives of self-management support according to the PRISMS taxonomy with thematic analysis to explore how support was acceptable and effective. RESULTS: Patients identified a relationship-in-action as the mechanism, the how by which providers supported them to self-manage. When providers acted upon knowledge of patient lives and priorities, these patients were often willing to try activities or medications they had resisted in the past. Effective self-management support saw PRISMS components delivered in patient-specific combinations by individual providers or teams. DISCUSSION AND CONCLUSIONS: Providers who establish relationships with patients can support them to self-manage and improve health outcomes. Delivery of taxonomy components, in the absence of a relationship, is unlikely to be either acceptable or effective. Providers need to be aware that social determinants of health can constrain patients' options to self-manage.

"You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients.

BACKGROUND: There is growing reliance on unpaid caregivers to provide support to people with care needs. Integrated care approaches that aim to coordinate primary care with community care known as community based primary health care (CBPHC) has been a key policy initiative across health systems; however most attention has been paid to the needs of patients and not caregivers. The objective of this paper was to explore the unmet needs of caregivers of older adults with complex care needs receiving CBPHC. METHODS: This qualitative descriptive study entailed one-to-one interviews with 80 caregivers from Canada and New Zealand where roles, experiences and needs were explored. Interview text related to unmet need was reviewed inductively and core themes identified. RESULTS: Three themes were identified across CBPHC sites: unrecognized role; lack of personal resources; and no breaks even when services are in place. CONCLUSIONS: To support caregivers, models of care such as CBPHC need to look beyond the patient to meaningfully engage caregivers, address their needs and recognize the insight they hold. This knowledge needs to be valued as a key source of evidence to inform developments in health and social care.

What Gets in the Way of Person-Centred Care for People with Multimorbidity? Lessons from Ontario, Canada.

Person-centred care is becoming a key component of quality in health systems worldwide. Although the term can mean different things, it typically entails paying attention to the needs and background of health system users, involving them in decisions that affect their health, assessing their care goals and implementing a coordinated plan of care that aligns with their unique circumstances. The importance of practising a person-centred approach in care delivery dominates policy and research rhetoric worldwide, yet competing goals set by policy planners to save money, eliminate waste and sustain the healthcare system challenge the implementation of such an approach. In this commentary, we begin by exploring the concept of person-centred care and its importance among people who frequently use healthcare, such as those with multimorbidity. We then provide a brief overview of the evolution of Ontario's healthcare system and its emphasis on achieving cost savings. In doing so, we illustrate the implications for health system users, particularly people with multimorbidity, their carers and formal care providers. Finally, we reflect on examples of innovations that are striving to deliver person-centred care, despite a constrained healthcare environment. While a step in the right direction, we conclude that these "one-off" strategies are unsustainable in the absence of supporting policy levers.

Caring for caregivers of high-needs older persons.

The Caregiver Framework for Seniors Project (CFSP) is led by the Alzheimer Society of Toronto in partnership with the Toronto Central Community Care Access Centre and six community support service agencies. This ground-breaking initiative aims to increase caregiver resiliency and capacity to continue to provide care through a platform of supports. In the CFSP, care coordinators negotiate flexible support packages in consultation with caregivers to meet their self-reported needs and the needs of care recipients. This paper presents the findings from a multi-stage, mixed-methods formative evaluation of the CFSP.

Caring for caregivers of high-needs children.

The Caregiver Framework for Children with Medical Complexity, led by the Hospital for Sick Children, is a ground-breaking initiative that validates and supports the vital role of unpaid, family caregivers. The project uses a supported self-management model that includes a modest amount of funding to address pressing needs, and relies on Key Workers who provide ongoing education, counselling and care management to assist caregivers in planning over the longer-term. This paper describes the findings from a multi-stage, mixed-methods evaluation to examine the design and outcomes of the Caregiver Framework.

Caring for caregivers: facing up to tough challenges.

This paper, the first in a series of three, sets the stage for two accompanying papers detailing a pair of groundbreaking initiatives to support "at risk" caregivers of high-needs older persons and children in Toronto. Although caregiver burden and stress are often conceptualized primarily as a function of the needs of cared-for persons and the capacity of caregivers, fragmented formal care systems also play a key role. Solutions must take individual-level and system-level factors into account; clarify expectations about what we expect unpaid caregivers to do; redefine the unit of care to include caregivers; and think beyond short-term fixes to mechanisms, such as interdisciplinary teams and integrated care plans, that promote forward planning, accountability, best practices and crisis avoidance.

"Terror Is a Better Word": A Qualitative Analysis of Dementia-Related Anxiety.

BACKGROUND AND OBJECTIVES: Dementia-related anxiety (DRA) is the fear of a current or future diagnosis of Alzheimer's disease or another type of dementia. Previous studies suggest diverse factors contribute to DRA, including emotional, social, and cognitive concerns. A mixed-methods investigation was designed to explore DRA's underlying causes; we present a thematic analysis of these causes. RESEARCH DESIGN AND METHODS: A semistructured qualitative interview design was used to explore participant's thoughts, feelings, and reactions about dementia. Fifty community-dwelling adults (aged 58-89, M = 70.80, SD = 6.02) without dementia diagnoses were interviewed, with a focus on why dementias are anxiety-provoking diagnoses. We engaged in a reflexive inductive thematic approach. RESULTS: We identified 7 themes positioned within previously established antecedents of DRA. Anticipated consequences were conveyed in statements identifying dementia as a feared diagnosis and its connection to how one would be treated if diagnosed. Low perceived control was associated with dementia's anticipated effects including the ability of dementia to undermine core aspects of one's personhood, limit independence, and increase reliance on others. Perceived risk was connected to past familial experiences with dementia and the implications of receiving different diagnoses with different trajectories and treatments. DISCUSSION AND IMPLICATIONS: Findings offer insight into diverse factors contributing to DRA, which can be used to inform public health messaging and develop applicable and clinically relevant interventions to meet the needs of individuals experiencing DRA and their social support systems.

System-Level Factors Affecting Long-Term Care Wait Times: A Scoping Review.

Waitlists for long-term care (LTC) continue to grow, and it is anticipated aging populations will generate additional demand. While literature focuses on individual-level factors, little is known about system-level factors contributing to LTC waitlists. We considered these factors through a scoping review. Inclusion/exclusion included publication year (2000-2022), language, paper focus, and document type. A total of 815 abstracts were identified, only 17 studies were included. Through qualitative content analysis, 10 key factors were identified: (1) waitlist management styles, (2) inconsistent standards of admission, (3) personnel shortage, (4) insufficient community-based care, (5) inequitable distribution of services, (6) lack of system integration, (7) unintended consequences of insurance plans, (8) ranking preferences, (9) the debate of supply and demand, and (10) financial incentives. Targeting interventions to address waitlist management, community-based care capacity, and demographic trends could improve access. More research is needed to address system-level barriers to timely LTC access.

Anticipated suicidal and death ideation in response to an imagined dementia diagnosis: A qualitative study.

Alzheimer's disease and related dementias are prevalent, highly impactful, and feared diagnoses. A mixed methods study using semi-structured interviews was conducted to clarify causes of dementia-related anxiety. Fifty community-dwelling adults aged 58 to 89 (M = 70.92, SD = 6.08) were recruited from a university participant registry and Memory Clinic; none had dementia diagnoses. Analyses revealed that 42% (n = 21) of participants anticipated suicidal or death ideation if diagnosed with dementia. Among participants endorsing anticipated suicidal or death ideation, responses ranged from active, specific plans, including interest in physician-assisted suicide, to more passive wishes to hasten death rather than continue to live with dementia. Within reports of both anticipated suicidal and death ideation, three subthemes emerged. Participants reported concerns about becoming a burden to others, the devaluation of life/loss of self with dementia, and the desire for (and anticipated thwarting of) personal control as factors contributing to their anticipated responses to a dementia diagnosis. Statements of anticipated suicidal and death ideation were contingent on a dementia diagnosis and may reflect errors in affective forecasting. Nevertheless, given the prevalence of dementias and older adults' elevated rates of suicide, the intersection of these two public health issues warrants greater attention.

The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia.

Globally, systems have invested in a variety of dementia care programs in response to the aging population and those who have been diagnosed with dementia. This study is a qualitative secondary analysis of interview data from a larger study investigating stakeholder perceptions of programs that support caregivers and people living with an Alzheimer's Disease or Alzheimer's Disease-related dementia (AD/ADRD) in five North American jurisdictions. This study analyzed interviews with individuals living with an AD/ADRD and caregivers of individuals living with an AD/ADRD (n = 11). Thematic analysis was conducted to understand how the perception of dementia may have shaped their engagement and experience with healthcare systems. Our analysis resulted in three main themes of care users' experience: (i) undesirable experience owing to the overarching negative shared understanding and stereotyping of dementia; (ii) dismissal throughout disease progression when seeking health and social care support; and (iii) dehumanization during care interactions. The findings carry critical social and clinical implications, for example, in informing person-centered approaches to care, and communication tools clinicians can use to enhance provider, patient, and caregiver well-being.

What Can Canada Learn From Accountable Care Organizations: A Comparative Policy Analysis.

Introduction: Accountable Care Organizations (ACOs), implemented in the United States (US), aim to reduce costs and integrate care by aligning incentives among providers and payers. Canadian governments are interested adopting such models to integrate care, though comparative studies assessing the applicability and transferability of ACOs in Canada are lacking. In this comparative study, we performed a narrative literature review to examine how Canadian health systems could support ACO models. Methods: We reviewed empirical studies (published 2011-2020) that evaluated ACO impacts in the US. Thematic analysis and critical appraisal were performed to identify factors associated with positive ACO impacts. These factors were compared with the Canadian context to assess the applicability and transferability of ACO models within Canada. Findings: Physician-led models, global budgets and financial incentives, and focus on collaborative care may optimize ACO impacts. While reforms towards alternative payments and team-based care are not unprecedented in Canada, significant further reforms to physician remuneration, intersectoral collaboration, and accountability for performance are required to support ACO-like models. Conclusion: This comparative study uncovered several insights on the applicability and transferability of ACOs to the Canadian context. Further comparative research outside the US is needed to infer the essential components of successful ACO models.

Policy programs and service delivery models for older adults and their caregivers: Comparing three provinces and two states.

Despite an increase in prevalence of complex chronic conditions and dementia, long-term care services are being continuously pushed out of institutional settings and into the home and community. The majority of people living with dementia in Canada and the United States (U.S.) live at home with support provided by family, friends or other unpaid caregivers. Ten dementia care policy programs and service delivery models across five different North American jurisdictions in Canada and the U.S. are compared deductively using a comparative policy framework originally developed by Richard Rose. One aim of this research was to understand how different jurisdictions have worked to reduce the fragmentation of dementia care. Another aim is to assess, relying on the theory of smart policy layering, the extent to which these policy efforts 'patch' health system structures or add to system redundancies. We find that these programs were introduced in a manner that did not fully consider how to patch current programs and services and thus risk creating further system redundancies. The implementation of these policy programs may have led to policy layers, and potentially to tension among different policies and unintended consequences. One approach to reducing these negative impacts is to implement evaluative efforts that assess 'goodness of fit'. The degree to which these programs have embedded these efforts into an existing policy infrastructure successfully is low, with the possible exception of one program in NY.

Primary care for individuals with serious mental illness (PriSMI): protocol for a convergent mixed methods study.

INTRODUCTION: People with serious mental illness (SMI) have poor health outcomes, in part because of inequitable access to quality health services. Primary care is well suited to coordinate and manage care for this population; however, providers may feel ill-equipped to do so and patients may not have the support and resources required to coordinate their care. We lack a strong understanding of prevention and management of chronic disease in primary care among people with SMI as well as the context-specific barriers that exist at the patient, provider and system levels. This mixed methods study will answer three research questions: (1) How do primary care services received by people living with SMI differ from those received by the general population? (2) What are the experiences of people with SMI in accessing and receiving chronic disease prevention and management in primary care? (3) What are the experiences of primary care providers in caring for individuals with SMI? METHODS AND ANALYSIS: We will conduct a concurrent mixed methods study in Ontario and British Columbia, Canada, including quantitative analyses of linked administrative data and in-depth qualitative interviews with people living with SMI and primary care providers. By comparing across two provinces, each with varying degrees of mental health service investment and different primary care models, results will shed light on individual and system-level factors that facilitate or impede quality preventive and chronic disease care for people with SMI in the primary care setting. ETHICS AND DISSEMINATION: This study was approved by the University of Ottawa Research Ethics Board and partner institutions. An integrated knowledge translation approach brings together researchers, providers, policymakers, decision-makers, patient and caregiver partners and knowledge users. Working with this team, we will develop policy-relevant recommendations for improvements to primary care systems that will better support providers and reduce health inequities.

Comparison of outpatient coverage in Canada: Assistive and medical devices.

Outpatient technologies are important for maintaining health and overall quality of life, yet the degree of access and coverage of these technologies remains variable within and across jurisdictions. In Canada, assistive technologies are not included in universal health coverage, and are not subject to the Canada Health Act's criteria and conditions that provinces and territories must fulfill to receive the full federal cash contribution under the Canada Health Transfer. As such, the thirteen Canadian provincial and territorial governments make separate decisions on programs and coverage. Drawing on the WHO Universal Coverage Cube we compare who gets access, the types of technologies that can be accessed, and the level of coverage (total costs covered) in Canada. Overall, each Canadian jurisdiction had at least one publicly supported program. All relied on a 'health assessment' of an individual's need to determine eligibility. Income and eligibility for social assistance was used as eligibility criteria in 6 of the 13 jurisdictions. Mobility aids as well as audio, visual, and communication aids were included in all jurisdictions. While some programs offered full financial support for some technologies, forms of cost sharing were common. The results are discussed in the context of international experiences, demographic changes, and health system trends to highlight areas for policy learning.