The role of the social, physical, and organisational environments in shaping how patients and their caregivers perform work remains largely unexplored in human factors/ergonomics literature. This study recruited 19 dyads consisting of a parent and their child with type 1 diabetes to be interviewed individually and analysed using a macroergonomic framework. Our findings aligned with the macroergonomic factors as presented in previous models, while highlighting the need to expand upon certain components to gain a more comprehensive representation of the patient work system as relevant to dyadic management. Examples of design efforts that should follow from these findings include expanding existing data sharing options to include information from the external environment and capitalising on the capabilities of artificial intelligence as a decision support system. Future research should focus on longitudinally assessing patient work systems throughout transition periods in addition to more explicitly exploring the roles of social network members.
Work performed by patients and their caregivers is shaped by the social, physical, and organisational contexts they are embedded within. This paper explored how adolescents with type 1 diabetes managed their health alongside their parents in the context of these macroergonomic factors. These findings have implications for research and design.

This study was conducted to determine the relationship between preparedness for caregiving and spiritual well-being in the carers of stroke patients. This descriptive and cross-sectional study was conducted with 130 primary carers of patients hospitalized with the diagnosis of stroke at the neurology clinic of a hospital. It was determined that the participants had moderate levels of preparedness for caregiving, they had high levels of spiritual well-being, and there was a positive significant relationship between these two variables. According to the regression analysis results, the spiritual well-being level of the participants was a predictor of their preparedness for caregiving (B: 0.144, p < 0.001). The results of this study demonstrated that the spiritual well-being of the carers of stroke patients is important in increasing preparedness for caregiving. In this context, to ensure that the carers of all stroke patients feel prepared for the caregiving process, it is recommended to evaluate their preparedness levels, support them in their preparation for their caregiving roles, and identify their spiritual needs.

This study aimed to explore the motivations, attitudes, care management strategies and training needs of paid caregivers. Data were collected through 51 semi-structured interviews with paid caregivers and analyzed using thematic analysis. Their motivations included economic stability, the inability to secure other employment, a desire to secure independence through regularly paid employment and a passion and a love of caring. Their role involved being a key communicator of care between medical personnel and relatives, and participants emphasized the importance of paid caregivers being loving, caring, calm, patient, having the ability and willingness to cope with challenging situations. They outlined some specific challenges of the role of caregiving and expressed the importance of gaining recognition for the role as well as the need for bespoke and tailored training to underpin it. This study adds to the growing international literature around the needs of the paid carer workforce and has the potential to inform policy and training around the provision of a better-equipped workforce to meet the growing needs of the aging population.

Medicaid-funded home and community-based services (HCBSs) reach large numbers of individuals living with dementia who would otherwise reside in nursing homes with Medicaid funding. Medicaid HCBSs also often augment care provided by family and other informal caregivers to individuals living with dementia. Although Medicaid-funded HCBSs are offered in most states in lieu of nursing home care, they have been largely overlooked as health care system partners for implementation and testing of evidence-based dementia care interventions using embedded pragmatic clinical trial (ePCT) designs. In this article, we make the case for the importance of Medicaid-funded HCBSs as dementia care ePCT partners because of the volume of vulnerable clients with dementia served and the potential positive impacts that evidence-based dementia care programs can have on clients and their informal caregivers. This article first characterizes the Medicaid HCBS setting in terms of populations served and organizational arrangements across states. We then characterize strengths and potential limitations presented by Medicaid HCBSs as settings within which to implement dementia care ePCTs, using as a conceptual framework the Pragmatic-Explanatory Continuum Indicator Summary (PRECIS-2) tool and its domains. We draw on our experiences implementing the Care of Persons with Dementia in their Environments (COPE) program in a statewide Medicaid HCBS setting to highlight how these potential ePCT partners can help optimize pragmatic approaches to several PRECIS-2 domains. We found that partners are especially effective in implementing pragmatic ways to determine eligibility for evidence-based dementia care programs; assist with recruitment of eligible individuals; incorporate dementia care interventions into the range of existing HCBSs; and track outcomes relevant to persons living with dementia, caregivers, HCBS providers, and Medicaid insurance stakeholders. We conclude with recommendations for researchers, potential ePCT partners, and policymakers to help facilitate the growth of dementia care ePCTs in Medicaid HCBS settings across the United States.

BACKGROUND: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India.
OBJECTIVE: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia.
METHODS: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case.
RESULTS: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life.
CONCLUSIONS: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.

OBJECTIVE: The behavioral variant of frontotemporal dementia is characterized by profound changes in personality and behavior that often start before the age of 65 years. These symptoms impact family life, particularly if (adult) children live at home. In research on young-onset dementia or frontotemporal dementia, the family itself is hardly ever a unit of analysis. Insight in the perspectives of different family members from the same household helps to obtain a deeper understanding of the complex impact of the symptoms on family dynamics.
METHODS: This case study explored the perspectives of one family having a relative with the behavioral variant of frontotemporal dementia living at home. Over the course of 4 months, different family members were individually interviewed twice. Two authors independently performed a directed content analysis.
RESULTS: The family consisted of a father, mother, and three adult children. Around 3 years before the interviews the father was diagnosed with frontotemporal dementia.The main category identified was the change in family dynamics over the disease trajectory. Three subcategories characterized the changing family dynamics, namely (a) the change in existing roles, relationships and interaction patterns in the family due to early symptoms, (b) a redefinition of roles and responsibility in the family once the diagnosis was established, and (c) the formation of new roles, relationships and interaction patterns in the family by organizing post-diagnostic support at home.
CONCLUSIONS: Symptoms of the behavioral variant of frontotemporal dementia have a complex and profound impact on family dynamics and change existing roles, relationships, and interaction patterns. Psychosocial support may help families by accounting for individual differences in involvement, coping, and bereavement. This may help to create a sense of mutual understanding between family members that could potentially strengthen their relationship. This may help families to deal with the difficult challenge of organizing care for a relative with frontotemporal dementia who lives at home.

Determination of functional capacity in cognitively impaired persons living with HIV (PLHIV) is pivotal to the accurate diagnosis of HIV-associated neurocognitive disorders (HAND). Functional data is typically collected through self-report. Reliability concerns arise with memory and executive functioning impairments, which could compromise the integrity of self-report and result in inaccurate HAND diagnoses. The current study tested the accuracy of older PLHIV functional reports through examination of concordance rates between self-report and caregiver\'s (CG) report. Cross-sectional cognitive, mood, and functional status data were sampled from the Manhattan HIV Brain Bank. Participants and caregivers independently completed an Activities of Daily Living (ADL) questionnaire, producing 78 participant-caregiver dyads. Functional report concordance was operationalized by calculating differences between participant and CG ADL total scores. Assessment pairs differing by 2 or more points were considered to be discordant. Analyses revealed that one-third of the patient sample was discordant in the ADL report. ANOVA revealed that PLHIV overestimating their functional impairments, were significantly older, more educated, and more depressed than other participants. Global cognitive functioning was not associated with concordance. Thus, the majority of PLHIV were consistent with their caregivers\' ADL report, and older age and increased depressive symptomatology, but not cognitive status, were factors associated with discordance.

Context: Family caregivers assume the primary responsibility of assessing and managing hospice cancer patient symptoms while simultaneously managing their own wellbeing and symptoms. Objectives: Describe caregivers\' assessment of hospice cancer patient and their own symptoms during the last 60 days of patient life, and assess the relationship between patient and caregiver symptoms over time. Methods: Caregiver symptom report of self and cancer home hospice patient symptom data were collected via telephone in the final 60 days of patient life. Descriptive data on symptom severity and prevalence were summarized. Exploratory Factor Analysis was used to group individual symptoms. Factors representing patient symptoms, caregiver symptoms, and caregiver outlook were analyzed using mixed-effects analysis to determine relationships between factors and change in relationship between factors over time. Results: Data from 61 patient-caregiver dyads are presented. At least 1 day of moderate-to-severe symptoms were reported in the majority of dyads. Significant auto-regressive associations were found, namely previous factor scores for an individual positively predicted the next factor scores for that individual. Previous caregiver report of patient symptoms was also positively associated with the next report of caregiver symptoms; previous caregiver report of their own symptoms were negatively associated with their next report of patient symptoms. Patient and caregiver symptoms and caregiver outlook worsened over time and the relationship between patient and caregiver symptoms strengthened closer to death. Conclusion: Our findings may guide hospice care team responses to caregiver and patient symptoms to promote individual level and unit level functioning.

As more than 6 million people in the United States are living with dementia, it is important to foster and train counselors who are specialized in dementia. This case report explores the process and benefits of counseling when individuals and families are impacted by dementia. By understanding multiple changes in the individual and the family system, a counselor can provide guidance and resources to navigate and adapt changes during the disease process. Based on family systems therapy, a counselor can assist the family by facilitating family involvement and communication. It is critical for a counselor to help the family members in understanding how each one may be in a differing stage of acceptance regarding the diagnosis and loss. In addition, dementia-specific counseling should entail psychoeducation of the disease as well as existing community-based resources that are designed to support community-dwelling people living with dementia.

Objective: Purpose in life tends to decline in older adulthood and it is thought that intact cognitive functioning is required for purposeful living. Thus, it is likely that individuals may perceive older adults who are experiencing cognitive declines associated with dementia as having a reduced sense of purpose. Biases such as these may influence how individuals, especially care partners, interact with those with dementia. Method: This study examined how sense of purpose changed following a dementia diagnostic appointment for both the person receiving a diagnosis and their care partner. This study also explored how each individual perceived the other member of the dyad\'s sense of purpose. Older adults (47 care recipients and 75 care partners, 57% female; Mage = 68.5 years, SDage = 12.0 years) provided self- and other-report ratings of sense of purpose before and after their appointment at a specialized memory clinic. Results: Overall, both care recipients and care partners\' sense of purpose declined following a dementia diagnostic appointment [t(85) = 7.01, p < 0.001]. However, when comparing self-reports and other-reports of purpose, care partners reported that care recipients experienced a lower sense of purpose in life than the care recipients reported about themselves. Conclusions: Care recipients and partners reported less purpose in life following their dementia diagnostic appointment. Care partners may hold certain biases regarding sense of purpose toward care recipients. These findings can inform future work regarding how care recipients and care partners can plan purposeful lives following a dementia diagnosis.