Freedom and loneliness: dementia caregiver experiences of the nursing home transition.

BACKGROUND: the transition to nursing home care has previously been linked to negative outcomes for spousal caregivers of persons with dementia (PwD). However, little is known about the experience or trajectory of loneliness in spousal caregivers during this time. OBJECTIVES: to explore experiences of loneliness in caregivers during the nursing home admission of their spouse or partner with dementia. METHODS: semi-structured interviews were conducted with 11 individuals living in Ireland between Oct 2020 and June 2021, who were married to/partnered with a PwD who had, in the past 7 years, moved to full-time nursing home care. Data were collected and analysed using a deductive qualitative analytic strategy in the grounded theory tradition. RESULTS: data were interpreted in the context of Weiss' typology of social and emotional loneliness and indicated that social loneliness increased for many at the point of diagnosis, decreasing somewhat after the transition, while emotional loneliness increased across the transition. Data were used to refine an existing synthesised model of loneliness, providing an updated model of the causes and contexts of loneliness. CONCLUSIONS: the transition to nursing home care differentially affects loneliness subtypes. Results have implications for other transitions, which should be assessed in terms of various subtypes of loneliness. Our refined theoretical synthesis model of loneliness also warrants further evaluation.

Factors influencing the cost of care and admission to long-term care for people with dementia in Ireland.

OBJECTIVE: To explore the factors associated with the cost of care and admission to long-term care (LTC) for people with dementia living at home in Ireland. METHODS: Data on formal and informal resource use for people with dementia, and their LTC admission, were obtained from a national study of spousal dementia caregivers. Functional status was measured using the Bristol Activities of Daily Living Scale, while behavioural and psychiatric symptoms were evaluated using the Neuropsychiatric Inventory. Multivariable regression analysis was used to model costs and the predictors of LTC admission. RESULTS: Physical and cognitive symptoms were significantly associated with costs. Severely impaired functional ability was associated with a €2,308 increase in mean total 30-day monthly costs. Psychosis was associated with a €335 increase in primary and community 30-day monthly care costs. These factors also make it more likely that a person with dementia is admitted to LTC. Having an older caregiver also increases the risk of admission to LTC, while living in a rural area and having a female caregiver reduce the likelihood of admission. CONCLUSIONS: Dependency matters for the cost of care. Physical and cognitive symptoms, caregiver age and gender, and geographic location are significant predictors of admission to LTC.

Cognitive functioning among cognitively intact dementia caregivers compared to matched self-selected and population controls.

PURPOSE OF THE STUDY: Caregiving for a person with dementia is frequently used to model the impact of chronic stress on health, including cognitive functioning. However, the prevalence of typically healthier, self-selecting non-caregiving control groups could contribute to a picture of poorer caregiver performance and overstate the negative effects of stress. We investigated differences in cognitive performance between dementia caregivers and two groups of non-caregivers recruited using different sampling methods. DESIGN AND METHODS: We compared cognitive function and psychological wellbeing among 252 spousal dementia caregivers with demographically matched non-caregiving control groups drawn from (1) a population study and (2) a self-selecting sample. Comparable cognitive measures included immediate and delayed recall, processing speed reaction time and verbal fluency. RESULTS: Caregiver and non-caregiver performance was comparable on most cognitive domains. However, caregivers outperformed both control groups on processing speed (p ≤ .05) and reaction time (p ≤ .05), despite having higher levels of stress and depression (ps < .001). Furthermore, caregivers had significantly better free recall than self-selecting controls (p < .001). IMPLICATIONS: Our results, overall, do not support the idea that caregiving is associated with stress-induced cognitive deficits. Rather, the trend toward better caregiver performance is consistent with the healthy caregiver hypothesis.

Risk of Cognitive and Functional Impairment in Spouses of People With Dementia: Evidence From the Health and Retirement Study.

Caring for a spouse with dementia is a chronic stressor that may compromise caregivers' own cognitive functioning and capacity to provide adequate care. We examined whether having (i) a spouse with dementia and (ii) a spouse who requires assistance with activities of daily living predicted cognitive and functional impairments in respondents to the Health and Retirement Study (n = 7965). Respondents who had a spouse who requires care had poorer cognitive functioning, whereby this relationship was significantly stronger for male respondents. Having a spouse with dementia moderated the relationship between income and cognition and predicted caregiver functional impairment, though not when depression was controlled. Although we found no significant differences on any individual cognitive domains between 179 dementia caregivers and sociodemographically matched noncaregivers, our findings suggest that caregivers, especially men, and low-income individuals who have a spouse with dementia are more vulnerable to adverse cognitive outcomes. Targeting depression in spouses of people with dementia may help to prevent functional impairments.

Nurse-led family-based approach in primary health care for patients with type 2 diabetes mellitus: a qualitative study.

PURPOSE: The prevalence of Type 2 diabetes is rapidly increasing, with 537 million people estimated to have diabetes in 2021. The literature suggests that nurses can deliver effective person-centred diabetes care and that families can be essential in supporting patients. Thus, a Nurse-led Family-based (NLFB) approach may be particularly effective. This study aims to explore the perceptions of nurses, adults with type 2 diabetes, and family members regarding the NLFB intervention. METHODS: Guided by the UK Medical Research Council Framework, this seminal study adopted a qualitative, descriptive approach with content analysis. Data were obtained through 16 semi-structured, in-depth interviews. Themes emerged based on an inductive process using constant comparison (Graneheim and Lundman 2004). The COREQ checklist was used in ensuring rigour. RESULTS: Three main themes emerged includes: (1) nurses' experiences with current diabetes care practices, (2) stakeholders' views on the development of a NLFB approach, and (3) merging the nurse-led family aspects into the diabetes care. The key challenges are the dominant medical model, lack of specialist nurses, and time. The key facilitators are knowledge and social support. CONCLUSION: The study recommends stakeholders embrace nursing empowerment strategies and involve families to enhance the nurses' advanced roles and family inclusion in healthcare.

"When we were allowed to go back the freedom, the vista, the delight It was just magic": Disruption and adaptation among people ageing-in-place in Ireland during COVID-19.

COVID-19 person-place disruptions may dislocate enabling resources and affect the short- and long-term wellbeing of individuals ageing-in-place. However, outcomes may vary according to individuals' personal experiences and capabilities to put in place adaptive strategies. Underpinned by the Conservation of Resources (COR) Theory, this study aimed to identify shifts in older people's relationships to place during the pandemic and to gain a deeper understanding of their adaptive strategies. We analysed data collected between April-May and October-November 2021 from the [Details omitted for double-blind reviewing], a qualitative investigation of community-dwellers based in Ireland and aged 65 years or over. Participants (n = 57) completed written submissions, narrative interviews and/or go-along interviews detailing their experiences during the pandemic. The mean age of participants was 74.9 years, 53% were female, 46% lived alone, and 86% lived in areas with high urban influence. Our framework analysis identified three thematic categories: 1) Characterization of individuals experiencing flow or disruption of place-resources; 2) Effects of place-resource disruptions; and 3) Adaptive strategies to manage disruption. Findings suggest that during the pandemic individuals ageing-in-place experienced trajectories of resistant flow, resilient flow, chronic disruption, or delayed disruption of place-resources, Participants' health and wellbeing was influenced in diverse ways by the threat of- and actual loss of material, social and affective resources. To compensate for disruptions, participants developed multiple adaptive strategies that highlight older people's potential to transform themselves, others, and their environments during times of adversity. These findings showcase the processes by which health enabling places may be maintained and generated, and present areas of opportunity for public health interventions seeking to support ageing populations during public health emergencies and beyond.

C-reactive protein predicts fatigue independently of depression in breast cancer patients prior to chemotherapy.

Heightened inflammatory activity has been proposed as a mechanism for the development of cancer-related fatigue (CRF), a common and distressing condition that can negatively affect quality of life. Inflammation is also implicated in the pathogenesis of depression, and depression is a strong predictor of CRF. Thus, the role of the pro-inflammatory cytokine network in CRF may be mediated by depression or both conditions may share similar underlying physiological processes. The current study investigated associations between fatigue, depression and inflammatory cytokine (IFN-γ, IL-6, TNF-α) and CRP concentrations, as well as kynurenine pathway (KP) activation, in 61 breast cancer patients prior to chemotherapy. Changes in inflammatory markers and KP activation over time were also explored, and associations with changes in fatigue and depression were examined. Higher levels of CRP were significantly correlated with fatigue and depression before chemotherapy; nevertheless, CRP predicted fatigue independently of depression. Although greater kynurenine concentrations were associated with increased immune activation, there was no evidence that the KP played a role in fatigue or depression. Furthermore, no relationships emerged between either fatigue or depression and IFN-γ, IL-6, or TNF-α before chemotherapy. Nevertheless, kynurenine levels pre- and post-treatment significantly predicted changes in depression, suggesting that heightened KP activation may contribute to depressive symptoms in patients treated for cancer. In addition, IL-6 significantly covaried with fatigue. These preliminary findings provide some support for the idea that low-grade inflammation contributes to the development of CRF, independently of depression; however, there was no evidence that this is mediated by KP activity.

Socio-ecological determinants of older people's mental health and well-being during COVID-19: A qualitative analysis within the Irish context.

Background: Evidence indicates that older people with biological and social vulnerabilities are at high risk of short- and long-term consequences related to the COVID-19 pandemic. However, studies have also highlighted that the crisis may present opportunities for personal growth if older individuals are met with appropriate resources and support. Objective: The aim of this study was to explore the perceptions of older people regarding how individual, social, and environmental factors have supported or hindered their well-being and health during COVID-19. Methods: We analyzed data collected between April-May and October-November 2021 from the Well-being, Interventions and Support during Epidemics (WISE) study, a qualitative investigation of community-dwellers based in Ireland and aged 65 years or over. Participants (n = 57) completed written submissions, narrative interviews and/or go-along interviews detailing their experiences during the pandemic. Framework analysis was carried out in NVivo 12 to identify determinants, linkages, and explanations within Bronfenbrenner's socio-ecological model. Results: The mean age of participants was 74.9 years, 53% were female, 45% lived alone, and 86% lived in areas with high urban influence. Our findings highlight the heterogeneous effect of COVID-19 across diverse older individuals who held distinct concerns, capabilities, and roles in society before and during the pandemic. Multi-scalar contextual characteristics such as individual's living arrangements, neighborhood social and built environments, as well as social expectations about aging and help seeking, had an influential role in participants' well-being and available supports. We identified mixed views regarding public health restrictions, but a consensus emerged questioning the suitability of one-size-fits-all approaches based on chronological age. Conclusions: Our results suggest that some negative pandemic consequences could have been avoided by increasing collaboration with older people and with the provision of clearer communications. The interdependencies identified between individual characteristics and socio-ecological factors that influenced participants' availability of supports and development of adaptive strategies represent areas of opportunity for the development of age-friendly interventions during and beyond public health crises.

Dementia research in Ireland: What should we prioritise?

Background: Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers. Methods: (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research. Results: Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas. Conclusions: Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

Assessing patients' beliefs about their cancer-related fatigue: validation of an adapted version of the Illness Perception Questionnaire.

Cancer-related fatigue (CRF) is a common and distressing side-effect of cancer treatment. The present study developed a brief version of the Illness Perception Questionnaire (IPQ) for assessing patients' representations of CRF. Cancer patients and survivors (n = 155) completed a revised version of the IPQ as well as measures of fatigue severity at two different time-points. Confirmatory factor analysis at both Time 1 and 2 showed that the seven-factor solution based on the Self-Regulation Model fit the data adequately and factorial invariance over the two time-points was supported. The resulting subscales exhibited good internal consistency and test-retest reliability. The adapted version of the IPQ shows promise for the assessment of patient perceptions regarding CRF. The scale may be able to be used clinically to identify if patients have inaccurate or unhelpful representations of CRF and to help tailor interventions for persistent fatigue in cancer survivors.