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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The biomedical model has traditionally informed the dominant discourse on dementia and has significantly shaped practitioners', policy makers' and researchers' responses. This model contextualises dementia as a progressive neuro-degenerative cognitive disorder and focuses on deficits and underlying pathology, often overlooking the fact that the person can and should be an active partner in the treatment process. Beginning in the late 1990s, the exclusive reliance on the bio-medical model has come under increasing scrutiny with a growing awareness that by recasting dementia in broader social and more humanitarian terms, much can be done to promote the individual's quality of life. Different frameworks and analytical tools have been forwarded to help us better understand dementia. These include personhood, citizenship, public health, disability and human rights. This review examines the merits of framing dementia as a disability, a citizenship concern and a human rights issue. It highlights some of the potential gains that can arise for the individual in using a human rights model to enhance practice, inform policy and create a more balanced research agenda. The article concludes by arguing that the complexities and magnitude of dementia are such that it requires multiple responses and a broad range of interpretative frameworks. [ABSTRACT FROM AUTHOR]

Whilst in the Western world, memory clinics are fast becoming an evolving feature of the Geriatric Service landscape, little is known from a user's perspective about the expectations and experiences of people with memory problems referred to a memory clinic for the first time and about the attitudes and concerns of their family caregivers. This article reports quantitative and qualitative data emerging from a study of 28 patients with dementia and their family caregivers who attended a first appointment at a National Memory Clinic in Ireland. Data show that despite initially feeling unnerved by the clinic appointment, immediately afterwards the majority of patients felt content with the assessment process, were satisfied with the explanations and information received, felt the appointment had benefited them and by the end of the visit felt more positive than negative about their experience. A large number of patients who responded to a question about feedback, requested that this information be given to them in writing as well as orally. Some recommendations are made about small procedural changes which can be made to help to demystify the memory clinic experience., Keywords: assessment; family caregiver; memory problems; person with dementia; service Article note: 1. Since the time of writing this paper, the disclosure policy at the Memory Clinic has changed significantly [...]

This article describes and evaluates cash-for-care programmes for older people in four European countries, namely Home-Care Grants in Ireland, Direct Payments in the United Kingdom (England), Service Vouchers in Finland and Personal Budgets in The Netherlands. The purpose is to raise understanding of the background and reasons for the introduction of cash-for-care programmes and their impact on the countries' care regimes. It is argued that while the motives for introducing cash-for-care programmes in the four countries are similar, namely to promote choice and autonomy, to plug gaps in existing provision, to create jobs, and to promote efficiency, cost savings and domiciliary care, the relative importance of these goals varies. Current cash-for-care programmes have comparatively modest coverage as compared with direct service provision and provide no more than an optional, supplementary source of care in three of the studied countries. Cash-for-care schemes have not radically transformed the care regimes in Finland, The Netherlands or the United Kingdom. In Ireland, however, the restricted availability of alternative forms of formal service provision means that the expansion of cash-for-care might shift care provision significantly towards private provision and financing. KEY WORDS--cash-for-care, homecare, older people, social care policy, care regimes.