Nurses' priority-setting for older nursing home residents during COVID-19.

BACKGROUND: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses' prioritizations in their work to achieve well-being and health for nursing home residents. AIM: The aim of this study was to explore nursing home nurses' priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. ETHICAL CONSIDERATIONS: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). FINDINGS: We identified an overarching theme-nursing home nurses struggling on multiple fronts, "just do it"-and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives' expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. CONCLUSIONS: Nurses' priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses' priorities. Nursing home nurses need organizational and managerial support to prioritize.

"Give me the knowledge, and I can do what I want with it, it's my right and my choice": Triangulated perspectives on the disclosure of young onset dementia.

INTRODUCTION: Receiving a diagnosis of young onset dementia is particularly distressing; the person under 65 years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process which is sensitive and appropriate to the person. The study aim was to explore experiences of giving and receiving a diagnosis of young onset dementia, by triangulating the perspectives of the key parties involved. METHODS: A qualitative design was employed, using semi-structured interviews. Participants (N = 47) included people with young onset dementia (n = 10), family members (n = 12), and health and social care professionals (n = 25). Thematic analysis and triangulation enabled identification of overall themes across different participant groups. RESULTS: All participant groups agreed on key aspects of good disclosure practice, with two overarching themes: The optimal conditions for disclosure, and how best to disclose a diagnosis. Positive experiences of disclosure were prefaced on having the appropriate space and time; having a support person present; clearly labelling the diagnosis; providing appropriate information at the right pace. Other findings include recommendations for longer appointment times, offering additional support for young families, and for carers of people with atypical presentations (e.g. frontotemporal dementia). CONCLUSION: Many people with young onset dementia had unsatisfactory disclosure experiences. Health and social care professionals should provide a 'pre-disclosure' appointment, elicit the amount of information the person may want at the point of disclosure of the diagnosis, balance truth and hope, provide contact details for follow-up, and overall be mindful of the individual in front of them. While young onset dementia may be a life-altering diagnosis, a disclosure meeting which is sensitively undertaken can increase the person's agency, coping ability, and ultimately empower them to live well with their diagnosis.

Developing a Framework for the Support of Informal Caregivers: Experiences from Sweden, Ireland, and the United States.

Policies and services to support informal caregivers vary considerably across countries. This paper examines the role of caregivers and how perspectives on that role may influence the availability of benefits and services in three countries that differ considerably in their care systems - Sweden, Ireland and the United States. We developed a nine-dimensional framework for examining differences, including policies and how the role of caregiver is conceptualized. We found differences in the three countries in how services are organized, which reflected assumptions about the caregiver role. There were also similarities in the three countries. Caregivers held an ambiguous position within each social system and there was little concern for equity in the delivery of support services. Increased clarity about the role of caregivers may facilitate development of policies that more effectively meet their varied needs.

Young onset dementia: implications for employment and finances.

BACKGROUND: People with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard. METHODS: Purposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances. FINDINGS: Participants' lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions. CONCLUSION: People diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young onset dementia when advising on services which incur out-of-pocket costs.

Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland.

INTRODUCTION: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. METHOD: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. FINDINGS: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers' combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non-means-tested carer's allowance, legal recognition, carer's support grant, monthly wage and community awareness programmes. CONCLUSION: Participants ranked day care and non-means-tested carer's allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers' contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.

WHO's global action plan on the public health response to dementia: some challenges and opportunities.

WHO's global action plan on the public health response to dementia (GAPD) approved by the World Health Assembly in May 2017 when fully implemented should make a tangible difference to the lives of people affected by dementia since it identifies seven priority actions areas, sets out parallel targets for countries to achieve and provides governments with the required framework to develop their own national dementia plans. The Plan reflects global solidarity on the world dementia stage: it is heavily embedded in rights-based principles and augurs much hope for people living with dementia and their family members. But what practical steps will be required of countries committed to ensuring that their policy plans comply with the GADP? What are some of the tensions and contradictions embedded in the Plan? Who are the winners and losers in this Plan and what action will be required of civic society to ensure that countries step up to the challenge of dementia and develop and implement their own policy plans? How likely is that all of the targets set out in the Plan will be achieved by 2025? This paper discusses the relevance of the GAPD for policy makers and civic society and critically reviews aspects of the Plan highlighting some of the key challenges and opportunities the Plan is likely to pose.

Dementia in older people admitted to hospital: a regional multi-hospital observational study of prevalence, associations and case recognition.

BACKGROUND: Previous studies have indicated a prevalence of dementia in older admissions of ∼42% in a single London teaching hospital, and 21% in four Queensland hospitals. However, there is a lack of published data from any European country on the prevalence of dementia across hospitals and between patient groups. OBJECTIVE: To determine the prevalence and associations of dementia in older patients admitted to acute hospitals in Ireland. METHODS: Six hundred and six patients aged ≥70 years were recruited on admission to six hospitals in Cork County. Screening consisted of Standardised Mini-Mental State Examination (SMMSE); patients with scores <27/30 had further assessment with the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE). Final expert diagnosis was based on SMMSE, IQCODE and relevant medical and demographic history. Patients were screened for delirium and depression, and assessed for co-morbidity, functional ability and nutritional status. RESULTS: Of 598 older patients admitted to acute hospitals, 25% overall had dementia; with 29% in public hospitals. Prevalence varied between hospitals (P < 0.001); most common in rural hospitals and acute medical admissions. Only 35.6% of patients with dementia had a previous diagnosis. Patients with dementia were older and frailer, with higher co-morbidity, malnutrition and lower functional status (P < 0.001). Delirium was commonly superimposed on dementia (57%) on admission. CONCLUSION: Dementia is common in older people admitted to acute hospitals, particularly in acute medical admissions, and rural hospitals, where services may be less available. Most dementia is not previously diagnosed, emphasising the necessity for cognitive assessment in older people on presentation to hospital.

A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia.

This paper reports findings from a systematic review of the literature on the general public's knowledge and understanding of dementia/Alzheimer's disease. The key purpose of the review was to evaluate existing literature with specific attention paid to conceptual and methodological issues and to key findings. Over a 20-year period, 40 published articles satisfied the inclusion criteria. Only 4 of these were qualitative and 5 were cross-national. The review revealed a lack of consistency across studies regarding how knowledge was operationalized, approaches to sampling, response rates, and data collection instruments used including validated scales. A consistent finding across the vast majority of studies was the only fair to moderate knowledge and understanding the general public had. The most common misconception was that dementia was a normal part of aging and there was a lack of clarity about at which point normal age-related memory loss problems become severe enough to indicate dementia. Knowledge of dementia was found to be particularly poor among racial and ethnic minority groups where several myths about causes of dementia were found. Findings point to the need for more educational and advocacy programmes on dementia to be developed particularly in low-income to middle-income countries.

Estimating the economic and social costs of dementia in Ireland.

Dementia is a costly condition and one that differs from other conditions in the significant cost burden placed on informal caregivers. The aim of this analysis was to estimate the economic and social costs of dementia in Ireland in 2010. With an estimate of 41,470 people with dementia, the total baseline annual cost was found to be over €1.69 billion, 48% of which was attributable to the opportunity cost of informal care provided by family and friends and 43% to residential care. Due to the impact of demographic ageing in the coming decades and the expected increase in the number of people with dementia, family caregivers and the general health and social care system will come under increasing pressure to provide adequate levels of care. Without a significant increase in the amount of resources devoted to dementia, it is unclear how the system will cope in the future.

A national survey of memory clinics in the Republic of Ireland.

BACKGROUND: This national survey investigates the location, resourcing, staff composition, treatments, waiting time, and numbers of patients attending memory clinics (MCs) in the Republic of Ireland. It also explores Directors' attitudes to future service development including their views about the advantages and disadvantages of quality standards for MCs. METHODS: An audio-taped telephone interview was conducted with the Directors. RESULTS: A total of 14 MCs were identified across the Republic of Ireland, ten of which are hospital-based and most of which offer diagnostic services and are located in Dublin. Nine MCs are medical consultant led and operate under the direction of either Old Age Psychiatrists or Geriatricians. Results show wide variation regarding the location, team size, service availability, and numbers of patients attending. The average number of patients attending in 2011 was 126. Only six clinics employ dedicated Allied Health Professionals. Less than half of the clinics are research active. Whilst most Directors welcomed the availability of national standards, several expressed concern that standards might, in the absence of funding, result in the closure of the most poorly resourced services. CONCLUSIONS: This survey provides valuable data on the main characteristics of all of the 14 MCs delivering services in the Republic of Ireland and raises critical and fundamental questions about the goals and outcomes of MC services. The survey data collected can be used by other countries for cross-national comparison.

Diagnosis and disclosure of dementia--a comparative qualitative study of Irish and Swedish General Practitioners.

OBJECTIVES: To explore the attitudes of Irish and Swedish General Practitioners (GPs) to the diagnosis and disclosure of dementia to patients; to investigate GP under-graduate/post-graduate training in dementia; to examine the post-diagnostic support services available to GPs in both countries and to investigate the extent to which dementia is perceived as stigmatising. METHODS: A cross-national exploratory qualitative design was used. In-depth interviews were conducted with five Irish and four Swedish GPs. Interviews were transcribed, translated, thematically coded and categorised. RESULTS: Both Irish and Swedish GPs unequivocally considered the early diagnosis of dementia important but neither group was proactive in making a diagnosis. Both groups relied heavily on family members or patients to bring to their attention memory loss and cognitive impairment problems. Most GPs reported a reluctance to diagnose and several acknowledged going to considerable lengths to avoid using the word 'dementia'. The Swedish GPs had more exposure to dementia-specific training, saw the value in training and were generally very satisfied with post-diagnostic dementia services available to patients, while Irish GPs were less likely to have undergone training, were more equivocal about its value and were very dissatisfied with the community services available. CONCLUSION: Despite the presence of very adequate post-diagnostic support services for people recently diagnosed with dementia, the majority of Swedish GPs like their Irish counterparts displayed therapeutic nihilism and were reluctant to speak overtly to their patients about their dementia. Dementia continues to be a stigmatising illness for both Irish and Swedish GPs.

'I hate having nobody here. I'd like to know where they all are': Can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive impairment?

OBJECTIVE: To ascertain if similarities or differences exist in perceptions of quality of life (QoL) amongst nursing home (NH) residents with different levels of cognitive impairment (CI). METHOD: Face-to-face interviews using a simple 15-item semi-structured interview schedule with 61 older people with a CI (13 mild, 20 moderate and 28 severe) living in three Dublin area based NHs. RESULTS: Four key themes of QoL with accompanying sub-themes were identified: (1) social contact, (2) attachment, (3) pleasurable activities and (4) affect. Whilst some similarities existed between the three groups, results showed emerging differences, particularly between those with a mild and severe CI. In particular, the narratives of those with a severe CI reflected an absence of social contact, a quest for human contact and a lack of awareness of structured pleasurable activities. A large majority also reported feelings of loneliness, isolation and a search for home. CONCLUSIONS: Findings support the increasing evidence that people with a CI and even those with a probable advanced dementia can often still communicate their views and preferences about what is important to them. Whilst apathy, depression and anxiety are common features of advanced dementia, the social inclusion of these people in the day-to-day ethos of NH life needs a lot more careful consideration. More research is also needed to better understand the chronic and unique needs of this very vulnerable group of people.

Low-level genomic instability is a feature of papillary thyroid carcinoma: an array comparative genomic hybridization study of laser capture microdissected papillary thyroid carcinoma tumors and clonal cell lines.

CONTEXT: Previous chromosomal comparative genomic hybridization (CGH) studies of papillary thyroid carcinoma (PTC) have demonstrated a low prevalence of aberrations, with the majority of tumors showing no evidence of chromosomal instability. The technique of CGH can be optimized, however, using array CGH and laser capture microdissection to ensure pure cell populations for analysis. OBJECTIVE: To assess PTC using array CGH applied to laser capture microdissected tumor cells and pure cell cultures. DESIGN: Well-characterized PTC (known ret/PTC and BRAF mutation status), including samples from 5 tumors with classic morphology, 3 follicular variant tumors, and 3 clonal PTC cell lines, were analyzed. RESULTS: Copy gain and loss occurred in all of the tumor cases and cell lines examined. The most common recurrent aberrations involved gains on chromosomes 1, 5, 7, 11, 15, 17, and 22, with recurrent deletions occurring on chromosomes 4, 18, and 19. Analysis of the data from the 8 tumor samples showed that amplifications of TP73 (1p36.33), SNRPN (15q12), and PDGFB (22q13.1) occurred exclusively in tumors with a wild type BRAF. CONCLUSIONS: This study shows a higher prevalence of aberrations detected using array CGH allied to laser capture microdissection than previously described in the literature, and it appears that the combination of laser capture microdissection and arrayed clones optimizes studies utilizing CGH. Copy gain of PDGFB occurs in a subset of tumors showing no evidence of mutated BRAF or rearranged ret, suggesting that copy gain of PDGFB may underlie the increased expression of platelet-derived growth factor described recently in the literature.

Dementia in primary care: the first survey of Irish general practitioners.

OBJECTIVE: To investigate General Practitioners' (GPs) attitudes and practices in relation to screening, diagnosing, and disclosing a dementia diagnosis to patients. DESIGN: National postal survey. PARTICIPANTS: A random sample of 600 GPs from a national database of 2,400. RESULTS: Of the 600 GPs surveyed, 60% returned questionnaires of which 50% (300) were useable. GPs reported diagnosing on average four new cases of dementia annually. A multivariate analysis revealed that females diagnosed significantly fewer cases annually (t=5.532, df=289, p<0.001). A large majority of GPs reported performing thyroid function tests (77%), B(12) (75%) and Folic acid tests (75%) to out rule reversible causes of cognitive impairment. The most reliable signs and symptoms of dementia identified were memory problems (58%). Main barriers to diagnosis were difficulty differentiating normal ageing from symptoms of dementia (31%), lack of confidence (30%) and the impact of the diagnosis on the patient (28%). GPs' age (chi(2)=14.592, df=3, p<0.005) and gender (chi(2)=11.436, df=3, p<0.01) were significantly associated with barriers to diagnosis. Only 19% claimed they often or always disclosed a diagnosis to a patient. Over one-third of GPs (38%) reported that the key factor influencing their disclosure patterns was their perceptions of the patient's level of comprehension. Most GPs (90%) had never undergone any dementia specific training and most (83%) expressed a desire for this. CONCLUSIONS: GPs experience difficulty diagnosing and disclosing a diagnosis of dementia to patients. To improve dementia care in Ireland, there is an urgent need to develop an active and more systematic approach to GP training in dementia care.